Tuesday, December 20, 2011

World's Worst Blogger.....

Sorry I have been so sporadic about updating. This is a really insane time of year and there are only so many times I can tell you guys about how much I hate this new stoma without driving us all insane. I do have a couple of items to report though.

Back on 12/5 I went to see Dr. L at the Cleveland Clinic for my regular six week post-op visit. I was able to drive myself which was a big improvement. Everything was good. I saw the stoma nurses again and they were pleased with how the Marlen appliance was working for me. I can't remember if I mentioned it before, but I'm now using the Marlen one piece with deep convexity along with a Hollister convexity ring. It's super duper convex, but it's protecting my skin which is now all healed except a tiny red area right at the opening of the stoma. I'll take it! They also ran labs and there were no signs of lingering infection. My hemoglobin also improved from 7 to just shy of 11 which made me very happy. I've started taking vitamins again, so that should help more. I need to be at least 10 for surgery.

Speaking of surgery, the next step is a return to CC for a gastrogeffin enema imagining procedure on January 11th. They will introduce a barium type enema into my rectum to fill the j-pouch and take pictures to make sure it is leak-free, completely healed, and ready for takedown (reversal) surgery. Dr. L will be out of the office January 12-21, so I'm hoping to take the first available surgery appointment when he returns. I am so ready! It has been such a long road and I feel like I can see the finish line now.

In other news, I am back to running! Not far and not fast, but it is still exciting! Last Saturday my training group started up for the winter season and I was able to do a 2 mile run/walk workout (run 4 minutes, walk 1 minute) without any trouble. I was so happy to keep up and be able to finish the whole thing. Super exciting! I will have to take a little break when I get this last surgery, but I think it will all work out fine.

That's it for me aside from the madness of getting ready for Christmas. I'm really happy to be feeling well and at home with my kids and husband right now. I'm looking forward to seeing our lives return to a more normal state in the coming year. Well, normal for us at least! Happy Holidays and New Year to all of you. :-)

Wednesday, November 30, 2011

What a difference a week (or two!) makes....

I am so behind in updating and now there is so much to catch up on. Ok, begin at the beginning....

I made the trip to Cleveland Clinic on Monday the 21st courtesy of my wonderful mother-in-law who took a vacation day to drive me up and back. It was nice because it meant my husband didn't need to miss more work and we didn't have to haul the kids along with us. I was very anxious about the actual removal of the drain. It's kind of funny, but I realized something about myself and pain that has changed with this process. When I had UC, I was in some amount of pain almost every day. It might have been just a little, or some days it may have been nearly debilitating. I dealt with it though and lived my life because that was the only real choice I had. The moment they removed that diseased colon from my body, that pain went with it. In the days following my first surgery, I had new pain to deal with, but there was much relief to have the pain from the illness gone forever. In the time since, I've pretty much felt good. When I had to go back into the hospital for the second surgery, the pain cycle got started up again with lab tests, IV's, another incision to heal from. Ultimately there was the pain of the abscess, an ER trip with more labs, an IV, and a straight catheter. Finally there was my admission back into the hospital which came with two more IVs, daily blood draws, and the real star of the show....the placement of the JP drain. Even once the drain was placed, it continued to hurt and ache inside my body and there was a stinging sensation at the insertion site when I moved. It seems that the further removed I become from that daily disease pain which I so stoically endured, and the more pain I encounter through the medical process, the lower my tolerance for the new pain is and the stronger my desire to avoid it. I become incredibly anxious now about everything they need to do to me wondering if it is going to hurt and how much. Thus, my mindset approaching the removal of the JP drain.

I told Dr. L I was nervous about it. He was snipping the couple of stitches and asked me a question about something. I started jabbering away and the next thing I knew he was standing there with the whole drain in his hand. He had pulled it out and I hadn't even realized it. He was quite pleased with himself, and I was very relieved. They put a band-aid over the small hole and he told me to wait 24 hours and then I could shower. Happily, I never had much drainage from my insertion site after removal and a band-aid remained more than adequate. That first shower I took was heavenly! :-)

Back to my visit on the 21st...Dr. L wanted to have a look at my stoma. I took the opportunity to tell him how much I hate this one and how it's not nearly as nice as the first one was. I wanted to know why he made it this way. He explained to me that, unlike my first stoma, this one is getting "pull" from both up and downstream directions. In order to give more bowel for the stoma, he would have had to take from the pouch and that is the lesser ideal over the long term. So, I guess I'm dealing with this difficult stoma for three months so that I can have the best j-pouch possible for the rest of my life. They paged the stoma nurses to come and take the pouch off and evaluate me for any changes to make to the appliance since I was still having skin problems. He said he would come back to look at things once they had the pouch off. I was feeling pretty tired at this point, and I must have looked it, too because his nurse, Marlene, had me lay down on the exam table. She put the feet and head up and made it almost like a Lazy Boy. Then she got me a pillow and some sheets and covered me up. She told me to just rest until the nurses came and turned all the lights off except for one small desk light. It was really nice of her, and I actually did nap a bit.

The stoma nurse arrived and removed my pouch. The peristomal skin was pretty red, including a small ulceration at the 6:00 position. She agreed we needed to try something else because the setup I was using was not protecting my skin adequately. She covered my stoma up with a big stack of gauze and went to get supplies. When she came back, we had to do a little clean up and new gauze was put in place. She explained the new appliance set up to me. We were going to try a one piece pouch from Marlen. It was a deep convexity and we were also going to put a convexity ring behind it to make it even deeper. This would push the skin down and away from the stoma more aggressively and hopefully help separate things enough to protect my skin from the output as it came out. We were all ready to go, except Dr. L was nowhere to be found. We waited and waited while the gauze had to be replaced multiple times. I became increasingly anxious as I waited. There was a weird feeling of vulnerability or exposure that built up in me as I lay there without my pouch on. I felt naked and like I wasn't in control of the situation at all. At one point, I started to cry and I couldn't understand why. The stoma nurse comforted me and told me it made sense to be upset. She said from about the age of two years old we expect to be able to control our bowels and they had taken my only means to do that away and it is upsetting to lose that control. I hadn't thought of it that way, but yes....it made sense. The wait ended up being just over half an hour. When Dr. L came in, I was still upset and I gave him an earful about having to wait so long with no pouch. He apologized and took a look at the stoma. He agreed it was a difficult one and said we would keep working with the stoma nurses until we found something that would help with my skin problems. I got my new pouch on and felt much better.

The plan from here is to go to my 6 week follow up on Monday 12/5. Six weeks after that, I will go back to have imaging of the j-pouch done to make sure it has healed properly and is ready for service. Once that is completed, I am ready for step 3. I can't believe it's only about seven weeks away at this point! Finally in the home stretch of this lengthy crazy process.

The whole experience with the abscess and related illness set me back quite a bit in terms of my recovery. I was very weak and tired and extremely anemic. I had very little energy to do anything. I managed to improve enough to go to Thanksgiving dinner like I wanted. I even managed a trip to my dad's house the following day. On Saturday I had a temp of 100 and was scared that I was going to go downhill again since I was off of the antibiotics at that point. It turned out to be a one day thing, thankfully. On Sunday I was still kind of dragging. I woke up Monday morning suddenly feeling great! I still took it easy for the day, but then I woke up yesterday feeling great again! :-) I also gained back three of the pounds I had lost which was a wonderful feeling. Yesterday ended being a big day. I actually walked on the treadmill for ten whole minutes. Not much, but more than I could have done last week. I drove myself to my first Weight Watchers meeting since surgery. I weighed in below my weight loss goal and am now on maintenance. After six weeks I will earn Lifetime member status which means free meetings for as long as I stay within two pounds of my goal weight.

Really though, the best thing of all happened this morning. I'm one day shy of being six weeks out from surgery, but I finally got to pick up my baby boy again. He was fussing in the crib and my husband was still in the shower so I (very carefully!) picked him up and took him back to bed with me so we could cuddle and hang out. He latched right onto me with his little arms and it felt so good to get a baby hug again! We cuddled in my bed for a bit until my husband was ready to take him and dress him and stuff and he was smiling and giggling the whole time. I think he missed me, too. :-) I won't go crazy with carrying him around for awhile, but it is nice to be able to do it a little.

I feel like I'm finally turning the corner with this recovery. It took a really, really, really long time to get here, but I made it. Now I just need to let my strength and endurance build a little more and I'll be all set. My running group starts back up on 12/17 with a two mile workout. I'm confident I will be able to at least go with the walking group for that one. I will have to (patiently!) see how things progress from there.

Feels good to be back in the world again.

Thursday, November 17, 2011

Tiny update....

We changed the dressing on the drain insertion site last night and zero drainage this time. I'm feeling good about that! I have noticed it is less painful than it was initially. I believe these are all good signs. Still no fevers or nausea, so I'm a happy girl.

I have a tiny bit more energy today than previous days. I actually made my own breakfast and dinner and was able to work on a crochet project for a bit. Huge improvements! Also managed a pouch change today, too which was completely wearing me out before. I feel like I'm turning the corner. I can only hope things continue in this positive direction once they take the drain out. The little bulb is barely collecting anything, so I'm not too worried about the abscess cropping back up when they take it out. I will be vigilant though! First sign of fevers, etc and I will be on the phone. Not going to get run down like that again.

Right now I'm just hoping to have the energy and stamina to enjoy Thanksgiving with my family. That will be a victory. :-)

Sunday, November 13, 2011

So that's what it was....

Just past midnight on Tuesday 11/8 my husband and I were trying to get to sleep for the night. I had continued to deteriorate and was at the point where I asked him to cover up the mirror in our bedroom because looking at my reflection scared the hell out of me. I had talked to my surgeon's nurse that evening and the plan was that I would return to the hospital Tuesday. She was supposed to call me in the morning to tell me if they had a bed for me, etc. As we were trying to go to bed, I was overwhelmed by my own weakness and the pain that had developed in my low right abdomen. Every instinct I had was telling I couldn't wait until morning, I needed to go now. I finally admitted to my husband that I was scared I wouldn't be ok at home overnight and we made the decision to load our sleeping kids into the car and drive up to the ER at the Cleveland Clinic.

I don't remember much of the drive. For me it was a combo of sleeping and staring out the window as the scenery went past. Both boys slept the entire way. We arrived right around 4:30 a.m. I was pretty relieved to see there weren't many people waiting in the lobby. I was even more relieved when my name was quickly being called. Little did I know that this was simply part one of this crazy multi-layer process. I was being triaged. They took vitals, I gave a urine sample that looked scarily like root beer. I caught another look at myself in that bathroom mirror and I looked like I had escaped from someone's Halloween display. And we waited. At some point my name got called again and I got registered. I was being wheeled around in a wheel chair because I was too weak to walk more than a couple of steps. They gave me some sheets and I squished myself onto a small bench and fitfully slept while my poor husband wrangled two boys who are definitely not used to being up at that time of day. About two hours passed and finally they were calling my name for real. On our way to the back, the nurse told me she needed to warn me about the room they were putting me in. "Does it have a bed?" I asked. She said it did and I told her that was all I cared about at the moment.

It turned out the room was their "security room" that they use for people who are mentally disturbed or otherwise violent. The walls are plain, there is no television. The door is heavy, bolts closed from the outside, and the tiny window in it is covered from the outside as well. It feels a little creepy, but there is indeed a place for me to lay down so I overlook all of this. By now, I needed to empty my ostomy, so we attempt to get a nurse. The young guy who comes in is very confused about this whole ostomy business and isn't sure what to do with me. I finally convince him that I just need a container, some paper towels, and something to clean my hands with when I'm done. He comes back with a bedside urinal, paper towels, and some disinfectant wipes. He put everything on the bedside table and vanished. Ummm, thanks for all of your help. Once again I have to say how grateful I am for my wonderful husband. He helped me to sit up on the side of the bed and then held the urinal for me while I emptied the pouch. That, my friends, is love. We didn't have anything to do with the container, so we decided to close the lid up and hang it on the side of the trash can.

The very next person who showed up was this muscle bound dude who looked like a bouncer or bodybuilder. He was huge! I couldn't help myself and made some crack about how he looked like he belonged with the room as the enforcer incase the crazy folk got out of line. He was very good natured about everything. Turns out his whole job was to get an IV line in me and draw some blood for labs. In my current state, this was no small task. All the good veins have been pretty thoroughly abused at this point and I'm severely dehydrated. Somehow this meathead looking guy was sweet as could be and did an amazing job of getting a line in with me barely feeling a thing. I was so grateful! He also was nice to the kids and brought some juice and stuff for them. From there on, my experience in the ER was less than awesome. My surgeon's nurse called me to tell me they wanted to admit me, so I had a bed up on the colorectal floor where I normally stayed. They wanted me to get a CT of my abdomen first though. By going in line as an emergency patient, I would get it a lot more quickly than as a regular patient from the main hospital. Once it was established that I was on fluids and would be getting a room, the decision was made to have my poor exhausted husband take the kids and go home so they all could sleep. Once they were gone, things got interesting in my "special" room.

A random nurse brought me a 900 ml container of oral contrast and a cup of ice and told me I had 20 minutes to drink the whole thing. I had two issues with this....first of all 900 ml of anything drank in 20 minutes wasn't going to do anything but flood my bag. Secondly, a big part of the reason I was in the ER was the inability to drink enough to keep myself hydrated. If I could possibly take in 900 ml of anything in 20 minutes, I probably wouldn't be there. So I rang my nurse while I started working on drinking the stuff. I asked him if he was sure I had to drink all of this stuff because I didn't have a colon. He looked at me like I must be from another planet, so I tried to explain that where normally someone would drink this and it would go into their stomach, then small intestine, then eventually large intestine....for me it was going to go into my stomach, small intestine, and then start dumping into the ostomy bag. There was no way I needed to drink that much and I wasn't sure I would physically be able to in the 20 minutes I was given. He left and I kept drinking as much as I could. He came back and told me I was supposed to drink all of it but that I had two hours to do it. Now I was even more confused. Anyone with an ostomy knows that if you drink something, in two hours it is going to be completely gone. I kept drinking because I knew I needed to get at least enough of this stuff in to get it coming out in the bag. Finally the unit doctor stopped by and I explained my predicament to him. He agreed with me that it made no sense to try to drink the whole thing. He encouraged me to drink as much as I could and when it started filling the bag to drink a little more then I could stop. This seemed reasonable to me. As it turned out, I drank about half of the contrast and my bag started filling pretty rapidly (had to empty it twice in a row). I did drink a little more after that and then the CT tech came. He was satisfied with the contrast going into the bag and agreed I never should have been given that much to drink in the first place. He was very nice and the CT process was quick and uneventful.

When he brought me back to my dungeon room, the tech told me he was going to tell my nurse I was back and they should be moving me pretty quickly since my test was done. It wasn't until he was gone and the big heavy door was closed that I realized the rails were up on both sides of the bed and my call light was nowhere to be found. I was stuck in the crazy room with no way to get help. For awhile I tried to just go to sleep, but the lights were really bright and I started to feel anxious about being stuck in there. I was also in a good amount of pain and wanted to find out if I could have something to help with that. I tried to just wait, but there is no sense of time passing in that room with the blank walls and no clock. I tried to call out a couple of times, but it became clear pretty quickly that nobody could hear me. The more that went on, the worse my anxiety got and the more pain I was feeling. I finally just got too upset and started screaming for help which made me cry at the same time. Finally, a random technician slowly opened the door to see what was going on. She must have decided pretty quickly that I wasn't in that room for the intended purpose because she saw I was sobbing and she came running in to calm me down. She got the call light for me and made sure the door was propped open when she went back out. My regular nurse eventually came and put some morphine in my IV and I was able to sleep for a little while. The door to the room stayed propped open with a chair until I was transferred out of there. I wouldn't let anyone close it after that!

I eventually got moved to my regular floor where they added IV antibiotics to my regimen. At this point I wasn't allowed to drink anything because they weren't sure if I would be going into the OR pending the results of the CT. My mouth was so dry that my lips were sticking to my teeth and I could barely speak. They finally agreed that I could have some sponge swabs dipped in water to wet my mouth. That helped quite a bit and at least let me answer questions when they came to talk to me. It turned out that I had a collection of fluid in my lower right abdomen, but they were initially unsure as to whether it was a leak from the j-pouch or an abscess. Eventually it was determined to be an abscess and they told me I would be having a drain placed using a CT scan guided needle. I was terrified to have this procedure done. I told the resident that I wanted to be asleep for it. He eventually sent my surgeon to see me and I cried while I begged him to make sure I didn't know what they were doing for this process. He told me I couldn't have general anesthesia for it, but he told me he would make sure I was taken care of. I was given 1 mg of Ativan prior to even leaving my hospital room. When I arrived in the room where they were going to do the procedure, there was an extra nurse there who's sole mission was to give me Versyd and give me more if I needed it. They gave me a shot of something in my stomach to numb me locally and got started. A few times throughout the procedure, I called out to that nurse to help me and she gave me more meds. I don't remember much about it except that they would work a bit, then push me back in the machine for pictures, then work some more. I remember seeing these large rods they were using at one point and feeling sick. I can also remember them drawing two large vials of yuck out of me and being able to smell the fluid in the room. I definitely had an infection in my body which is what I had been fighting so hard for almost a week. Finally, it was over and I was pretty groggy for awhile from the drugs.

I stayed in the hospital from Tuesday morning until Saturday. From the moment they drained the abscess, I never had another fever. It was amazing how much better I felt with that junk out of my body. At one point on Wednesday I attempted to go for a walk around the unit. It was all I could do to complete one lap. I wasn't dizzy, but my legs were so weak I felt like they were barely able to hold me up. My surgeon visited me at one point and told me I had depleted everything a body could deplete. My iron stores were gone, my muscles were withered away, and I was extremely dehydrated. I had no reserves. He tried to stress to me that my recovery was going to be slower going because of this set back. I am taking his advice to heart and really taking it easy now that I am home. I'm in no hurry. I can feel that this is going to take time.

I did come home with the drain still in place. That has been a bit of a nuisance, but nothing too horrible. Once a day I have to flush it with saline and empty the container that looks like a little hand grenade. It isn't collecting much now and I have an appointment for Monday to hopefully get it removed. The only issue I'm having is a lot of drainage around the insertion site, but that seems to be pretty common when I talk to other people who have had them. There is no increased pain, no redness, and no fever so I don't think it is getting infected or anything. I'm also on Flagyl and Cipro (antibiotics) for two weeks. My surgeon finally put me in Immodium to slow things down output wise since I was still struggling with that. I'm taking one before each meal and one at bedtime and it has things down around 900 ml/24 hours which is good.

So, it's been a rough couple of weeks but I finally feel like I'm going in the right direction again. I can't adequately explain how sick and run down I got....let's just say at the end it scared me and I don't scare too easily. Now I'm able to move about my house a bit and I can eat without feeling sick. It's just going to take more days of good eating and drinking and rest to get my strength built back up. Then we will go from there.

Saturday, November 5, 2011

So weird

Yesterday I actually felt pretty good for the first time days. Fevers were much lower, I ate a bit more food, I even sat in a recliner in the living room and talked with my husband like a normal person. The home nurse came and removed my staples and observed while I changed the pouch. He was fresh out of nursing school and had never seen an ostomy except in videos. I made sure to explain everything I was doing and he asked lots of questions. He said he learned a lot from it, so maybe that will help someone else some day. Oh, yes....even the brand new rookie RN realized immediately that my stoma was not the norm. He kind of hesitantly asked me if it was supposed to look like that, so then I got to explain to him all the issues I've had with it. "That must not be fun." he said. Ummm, no....it really isn't. I always dread the staple removal process. I know it's not overly painful, but it freaks me out none the less. So imagine my delight when he said something along the lines of "Well, I've taken out sutures before and I hear this isn't too different.". That's right....first time for that, too. I emphasized that I get really nervous and just asked him to use some extra caution and take it easy. He did a really great job. The incision looks good. There is still a bit of drainage where the hole is from the axiom pump, but that is to be expected at this point.

Going into Friday evening I was still feeling pretty good. Shortly before bed though, the wheels came back off and the overnight was full of Hugh fevers, sweating through my clothes, and just feeling miserable. At one point I jolted awake because sweat was running down my side and I thought the bag was leaking. It was fine. Throughout today I've just been trying to drink as much as I can, eat a little (haven't managed much), and go from dose to dose of Tylenol while fitfully sleeping. This, my friends, has been one miserable experience and shows no signs of letting up soon. I don't really know what to do at this point. As happy as I am to be home, I sort of wish I was back on H5 with my awesome nurses and aides looking after me. I definitely can't take care of myself and my poor husband is doing all he can. I have no idea how long this will go on. Right now it feels like no end in sight. I'm so exhausted and defeated. There aren't even words for it.

Friday, November 4, 2011

Well, that was interesting....

In the couple of days following my last posting, I kept getting elevated temps in the evening. They weren't much, but they were consistent and really made me feel pretty bad. Finally, on Tuesday the fever hit me in the middle of the day and with a bigger punch. That night I would get close to 103. I called in to the resident on call at CC and he went over my symptoms (aside from the fever and body ache there really weren't any) and suggested I call into my surgeon's office the next morning to see what they wanted me to do. Wednesday morning I called and spoke with Marlene and learned they wanted me to go into my local ER for some labs and IV fluids. At this point, my temps were spiking up over 103 and I felt like I'd been hit by a bus. I had no specific pain anywhere, but we had to rule out surgery related infection and I was in desperate need of the fluids. I felt so sick I just couldn't drink enough to keep up.

Once we got checked into the ER I got an IV started, labs drawn, gave a urine sample (which they then came back and did a straight catheter for to get a new one.....that sucked hard!!), and got chest x-rays. The doctor was pretty happy with how my stomach felt and didn't seem to think there was anything going on in there, but these tests would help rule out things like incision infection, abdominal abscess, pneumonia, and UTI which could all have been causing me the problems. I know we were there for a few hours and during that time I got very sweaty, went to the bathroom a couple of times, watched some TV, and drifted in and out of sleep. They finally came back to tell me that everything from the tests was normal and they had no reason to suspect infection or any of the other items they were screening for. If things got significantly worse or I developed new symptoms, I was supposed to come back. With that, and a prescription for anti-nausea meds, we went home. I crawled in bed and stayed there for the remainder of that day and all of the next. I really can't remember ever being so sick in my adult life. As I feel a bit better today and temps are staying closer to normal, I believe I stumbled upon some virus with really horrible timing. Today I've been able to be up and sit in a chair in the living room for several hours and I've eaten twice. I'm about to figure out something else to eat here in a few minutes. I'm glad I got things stabilized because I lost three pounds per day two days in a row and that is less than fun. I still feel very weak and I'm not about to push myself on anything, but it does feel good to be out of bed a little. I'm just hoping I am well enough tomorrow to go get my haircut. :-)

Sunday, October 30, 2011


Having a rough evening.

**if you aren't one of my broken gut people, you might want to skip this entry. There is about to be plenty of straight talk about poop. You've been warned!**

For the last day and a half ago, I've felt like I needed to pass "something" from my butt. Knowing that it's normal to have mucous discharge following surgery, I wasn't too alarmed about this feeling. I did feel weird about bearing down at all to get it out, because I wasn't sure if I would somehow mess up what the good doc has built in there for me. Finally, this morning, things reached a point where no effort was really needed and the "stuff" came out. At first I felt better, but now off and on I've been having urges to go again. When I try to very carefully bear down, I get a pain in my low left abdomen. There isn't any urgency with these urges, but it is kind of uncomfortable to keep feeling like you have to poop and then you can't get anything out. I've passed a decent amount of liquidy stuff a couple of times, but the feeling remains. What's worse is my low guts feel all gurgley and gross, too. I'm uncertain as to whether or not this is just mucous and old surgical blood collecting and needing passed or if a bit of output is sneaking past the ileostomy and working it's way down there. Could easily be either or both.

I am also extremely tired which is self inflicted....too much walking around stores and stuff the last couple of days. I feel cold and kind of achey, so I took my temp and it is 99.9. I will have to watch this and make sure it doesn't get much higher. Who the he'll knows what could be going on in there. I have horrible visions of a pelvic abscess or something, but hopefully that is just my imagination getting carried away.

I've definitely felt better though, I can tell you that much. :-(

Hospital Stay, Part 2

On Saturday I got a visit from one of the stoma nurses. She switched me out from the surgery bag (which I jokingly call an oven bag because they look an awful lot like those bags you bake a turkey in!) to their regular post-op bag. When you get a loop ileostomy, there is a rod underneath the loop of intestine which helps keep it in place so the base around the stoma can heal, etc. It can be challenging to put a bag on with this rod in place. I didn't have any trouble after my first surgery, but I sure did with this one! Within a few hours, I noticed it was leaking badly when I got up to go to the bathroom. I was very upset because output was getting all over my incision, including the open wound where they had removed the drain from my abdomen. (side note: removal of that drain was one of the things I was most afraid of coming out of surgery. Turns out, it wasn't that bad. The feeling is sort if intense and it feels like they are pulling something out from way, way inside your body, but it wasn't overly painful.). My nurse was very reassuring and she cleaned the wound and incision and got another pouch on me. Less than two hours later, I tried to sit up to go to the bathroom and half the wafer just fell off my stomach. More output everywhere, including pouring into my wounds. I completely lost my cool and just started crying. They couldn't get a better seal because of the rod, but the rod couldn't come out until Sunday. It was this horrible catch 22.

I still had the same nurse and she was so good to me through all of this. We came up with a plan and she put the new pouch on with an insane amount of paste. We decided that I would call for someone to empty the ostomy bag before I tried to get out of bed to go pee. Also, she arranged it so someone would come check the pouch at least every two hours through the night. Our thinking was if we could keep weight off of the seal, maybe it would hold up better. It was a long night! It felt strange to call for help with emptying when I'd had an ostomy for so long and should have been able to do it myself. I can't say enough about the patient care staff at Cleveland Clinic though....they were all incredibly gracious and never made me feel bad about anything. We somehow made it through the night without any further leaks.

When the stoma nurse came Sunday morning, we had a whole different problem. She had a hell of a time getting all of the paste off so she could remove the rod and clean the skin around the stoma to prep for a new bag. The whole process was making me very anxious, so I called for some Valium which helped immensely. Eventually she got things to where they needed to be and there were no more leaks or issues for the rest of my stay.

One item of note from this visit: I had a much better idea of how to approach the transition to food and make it successful after my struggles following the first surgery. I started with much smaller portions and made sure I walked following each meal. Because of this, I was able to avoid any pain or nausea as I switched back to soft foods. The rest of my stay was pretty uneventful. My veins were horrible so the nightly poke for labs was a trial. I kept running low on potassium and magnesium so I was getting supplements via IV fluid. Things were otherwise pretty ho hum except for my bat shit crazy roommate! She was an older lady and I don't know if she was just an evil horrible person or had dementia or some combination of the two. She refused to take any kind if pain pills and then laid in bed moaning and complaining about being in pain. She finally insisted they bring her a new bed as she was convinced hers was bad and that was why she was in pain. She would wait until midnight and then flip on all the lights on her side of the room, start calling the nurses, and then berating them for things when they came to the room. It was crazy! She was released a day or so before me and I was never so glad to see a person go in my life!

Really, this recovery has been much easier than I expected. It helps that my incision is much smaller, but I think part of it is just that my body is already used to the ileostomy so it's been a smaller adjustment than last time. Plus I went in fit and healthy this time instead of all bedraggled from UC flares. The main problem I am having is some dissatisfaction with the new stoma. The opening is at the bottom, which isn't a huge deal. The real problem is that then opening seems to have pulled below the surface of my skin. I can't see any kind of hole anywhere on the stoma, even using a mirror to get a close look at the underside. The output comes from this crease in between the stoma and my skin, so it basically outputs right onto my skin. Keeping a pouch on has been a nightmare. I did changes on Friday that lasted 5 and 18 hours respectively. The pouch I have on right now has been on for about 27 hours, so hopefully it will keep working for a few days. Leaks suck! They make you feel helpless and kind of like you're in prison or something because it gets scary to leave the house not knowing if you'll have a problem. I plan to call Dr. L's nurse Monday to talk about this terrible stoma. I want to know why he made it this way and if there is anything to be done about it. It's kind of hard to think about because I can't decide if it's worth it to potentially go through a revision. Another surgery sounds awful, but so does three months of not being able to keep a seal on a pouch. Sigh.

Thursday, October 27, 2011


Greetings, all! I am enjoying my first full day home from the hospital today and it feels so very good to be home. What the heck is Spartacus, you ask? Well, that's what I've decided to name this new stoma. Don't really know why....it just seems right. At any rate, I want to catch up on things and recap some stuff. I don't know how far I will get with this particular post before I get too sleepy (thanks, percocet!) but I'll see what I can do. Also, I'm typing this up on my iPad which makes it pretty well impossible to scroll back through and edit, so just bear with me if things are jumbled and misspelled and whatnot. Between the technical limitations of this device and the narcotics it could be, umm, well interesting I guess.

Ok, first up: recap the half marathon. Sorry it took me so long to write about this. I only had a few days in between the race and checking into the hospital, and I pretty much spent them soaking up as much time with my boys as possible. On race day, my training group had a conference room at a hotel near the start. We were able to meet up there as a group and hang out before the race. They also did their own gear check and walked us all over to the starting area together. It was really nice! It did mean eating my breakfast much earlier than usual. I tried to just do an empty before we walked down to the start, but as we were standing there in the corrals waiting for the start I could feel the bag filling up. It seemed like maybe 1/3 or so full and there really wasn't time to leave the corral and empty. I decided to just see how things went because I knew the output would stop once I was running, etc. It did, but I found I kept worrying about the pouch and how full it was (I couldn't really tell) and if it would leak. I was also worried that once I finished and tried to take in some post race food, it would really fill up and their might not be a bathroom handy. Rather than spend the next two hours worrying about this, I decided to stop at a port-a-potty in mile 3. I had to wait in a little line, but the emptying was no problem. I lost about four minutes though and I was really upset about being so far off pace. I foolishly tried to make the time up, ran way too hard for a few miles, and then crashed and burned around mile 11. I ended up slowing way down after that and even needing some walk breaks. In the end, I managed a 2:38 which was a 14 minute PR over my March time. Not my goal time, but I'll take it.

On Wednesday 10/19 we headed for Cleveland for my pre-op appointments. These were relatively minor compared to last time. I met briefly with Dr. Lavery and we discussed the surgery and he asked if I had questions. I did want to know how long I would need to wait for take down surgery and was a bit surprised when he said a minimum of three months. I expected something like 8-10 weeks, though that timeline created a lot of conflict for me around whether or not it was worth it to squeeze the last one in so close to the end of the year with the holidays and my husband needing to take more unpaid time off to help me. Now, we are looking at mid-January at the earliest so those decisions are made for me. It's a bit of a relief, really. I should feel good enough by Thanksgiving to enjoy everything and I definitely will by Christmas. The next season of race training starts up on 12/17 so I will start with them and just take a little break about a month in and then pick back up as I am able. I should be nicely recovered and able to do well for my spring race. I feel good about all of this. After meeting with Dr. L, I had my labs and basic physical assessment and we were good to go. Nothing to eat or drink after midnight, check in time for surgery would be 11:00 a.m. We took the baby with us, so this later start time was actually a good thing. We checked into our hotel room, had dinner at the little Lebanese restaurant across the street that I love, and settled in to rest for the evening.

The next morning I got up, showered, and got dressed. I was already hungry, but I knew there was really nothing to be done about it, so I just pushed it out of my mind. We were close enough that we decided to walk over to the surgery center. We checked in at the desk, got our pager, and sat down to wait. After a short while, we were paged to move along to the next area where I did my mandatory peeing in a cup (not pregnant, btw!) and changed into my hospital gown and sexy hair net thingie. We had a little time to hang out together before they took me back and that was nice. Then it was time to say our goodbyes and I was wheeled all through the hospital to the secret land of the OR's. It's hard to describe how weird it is back there. It's all windy hall ways and sliding doors and you see everything from the perspective of laying on your back on the gurney. Maybe it's just me, but I always get a little weirded out once we get back in that area. This time around, there hadn't been enough time to start my IV in pre-op, so they were going to do it back here. I was wheeled into a room where there was just this one lady working by herself. It was kind of odd. She tried to start an IV in the back of my hand, but the vein was all constricted with scar tissue and when she tried to push through it, it was incredibly painful. I tried to endure it, but I finally couldn't take it anymore and we had to stop. They ended up bringing the anesthesiologist (Dr B) in to help with the IV. He was a super nice guy and instantly put me at ease. He gave me a tiny shot of lidocaine and then easily placed the IV in the crook of my elbow. He said it wasn't the ideal location for long term use, but it would get the job done and they would place a better one while I was asleep.

I was wheeled back out and parked outside the door of the OR where I would have my surgery. The anesthesia team was in hand as well as a few nurses and Dr. L's physician assistant and fellow. We were just waiting for the man of the hour to arrive and then we would get started. I spent several minutes chatting with a med student who was going to sit in on the case. He had lots of questions for me about how I got diagnosed with UC, what the course of my illness was like, how I decided on surgery, etc. It was kind of nice to have the opportunity to explain it all to a future physician and I hope the things I said will help him to help other patients in the future. Next thing I knew, I could hear Dr. L and I was then being wheeled into the OR. They transferred me to the surgery table and started strapping me down. I'll be honest, I hate that part, but I know why they do it so I try not to let it bother me too much. We had what they call the "huddle" where they confirm whom I am and what we are there to do. Then patient and all surgical personnel verbally agree and then we are ready to go. The last thing I remember was Dr. B patting me and telling me to have a nice sleep and Dr. L telling me, "We're going to take good care of you." like he always does. Then I was gone.

I have some confusion about when exactly I woke up. Unlike last time, I actually remember being in the PACU (recovery). I seem to have some memory of being told "We're just finishing up" or something along those lines. I also had some nightmares Thursday night where I had flashes of someone taking an oxygen mask type thing off of my face. Based on all of this, I suspect I woke up in the OR or early in the PACU as they were removing the intubation and stuff. I really wasn't in much pain at first, but I had my pain med pump button available and I know I ended up using it pretty frequently those first couple of hours. I was extremely thirsty and felt pretty disoriented. I got transferred to my room and was soon able to get some ice chips. One of the fellows came by to tell me all had gone well. A short time later my husband came to the room and I was really happy to see him and my son. I don't have very much memory of that night except I know I had a ton of trouble sleeping. I kept having nightmares but not really knowing what they were about. I also kept waking up disoriented thinking I needed to get up and empty my ileostomy. I really didn't because it wasn't functioning yet and I had a catheter so there was no need to get up at all. I also kept having muscle spasms in my abdominal muscles that were super painful. They gave me some valium to stop the spasms and it also helped me sleep.

Ok....getting tired now....I will write some more in a new post tomorrow. I don't want to leave anything out just because I'm sleepy. :-).

Thursday, October 6, 2011

Too Little Calm, Too Much Storm....

I haven't written anything here in quite awhile and I really should be. I'm stuffed deep inside my head right now and I think there is a fear that the things I want to say will be incoherent to most of you, or something like that. Thing is, I need to say them anyway. Someone out there feels the way I do right now (or will or has) and even if they don't.....I will read back over this someday and wonder what in the heck was going on that I was so freakishly silent in the weeks leading up to this second surgery. So let's see how I do here, eh?

There is so much buzz and pressure within and around me right now that it's difficult to endure it. I feel overwhelmed, overstimulated, overextended, lots of "over" things. The other day I checked in on my four year old as he was taking a bath and I found he was doing something I always liked as a kid. He was laying on his back with the water coming up the sides of his head and covering his ears. Just his face was sticking out. He had his eyes closed and looked blissfully relaxed. I can remember doing that a lot as a kid. There was something about being immersed in the warm cocoon of water that was soothing. Most sounds melted away and all you could hear was your heart beat and breathing and maybe the random undertones of the electrical currents working through the house (or something that sounded what I imagine that would sound like). There were no demands, no deadlines, no appointments, and no responsibilities. You just floated away there until someone told you it was time to get out. How lovely.

The last month or so has been especially stressful because I've been worried about my youngest son. He is experiencing some major gross motor delays and we are working our way through trying to find out why and getting him whatever help we can to improve his mobility. We are fortunate enough to have a great early intervention program available to us and are getting free physical therapy and other services. We are already seeing progress from these things, so that is heartening. In between all of that is trying to pinpoint the source of these delays and the low muscle tone we're told our son has. We have been able to rule out a few things, much to our relief, but the investigation process continues. After walking this road once due to my older son's juvenile arthritis, this is really tough for me. It dredges up a lot of difficult memories and feelings. I know there are parents and kids out there that have it a lot worse, but I was really hoping to experience what it is like to have a healthy child. All at the same time, my boys are nothing but joy and beauty (ok, and sometimes exhaustion but it comes with the territory). I have these philosophical debates with myself where I realize (over and over again) that changing any of the bad things might also change some of the good things and there is nothing else to do but let it go. I really am trying to practice keeping my hands open on this one , but it's hard some days. I also keep thinking about the six weeks post surgery where I won't be able to lift or carry my little guy. That means no helping with his therapy and that upsets me. We already lost our nursing relationship to this stupid illness during my first hospitalization, now this.

In many ways I am less nervous about being in the hospital than I was the first time. I have a level of familiarity with the hospital, the staff, the routines and all of that and it makes it easier in many ways. In other ways, I think it's worse this time. I know now how freaked out I feel about having the staples in my stomach. I know how long the weeks will feel while I'm trying to get my strength and mobility back. I know how my body will cannibalize its own muscle tissue during the days when I can't take in enough nutrients to keep it going. I know I'm going to look and feel like hell for a long while. I know I won't be able to take care of my kids, play with them, or even hug them without being extremely careful or guarded for weeks. I also know there are lab techs who show up in the middle of the night to take your blood. I don't know why, but I've been fixated on this one for the last week or so. I've had dreams where they started coming here to the house a couple of days ahead of time to get information for my doctor and help me get used to the process. Creepy. I also know there will be a couple of days in there where I wish I could go home but I'm not quite ready. I will be off of the pain pump and able to stay awake more and I will be restless, bored, and lonely. I'm not looking forward to these parts of the process.

I know this post is a bit of a downer but, you know what, it's the truth. I owe it to all of you (and to my future self) to be as honest as I can. I feel pretty beaten down right now, but I still have my fight in me. In ten days I will run that half marathon I've been training for since May. I'm going to blow my goals right out of the water for this one, I feel it in my bones. As I tackle this second lengthy recovery, I will be working to answer the question of "what's next?" Where do I want to go and what do I want to do once my life is no longer dictated by illness? Sometimes I get scared thinking "something" could go wrong. Then I buck up and refuse to listen to that voice of doubt.

There is a movie I love called "True Romance", written by Quinten Tarantino. If you know his work at all, you know that nobody does gritty violence like he does....it's almost too much for me sometimes but the overall quality of his work makes up for it. There is a particular scene in this movie where James Gandolfini is trying to shake down Patricia Arquette's character for some information he wants. He is this huge, menacing, thug of a guy and she is just tiny. The scene escalates into a violent confrontation as he tries to coerce the information out of her, but she won't talk. There is one moment in this horribly violent scene where she is all beaten up and bloody faced and she looks up at him and just flips him the bird. Oddly enough, that has been resonating with me a lot lately. I am beaten up pretty badly right now, but I still have a lot of fight left. Bring it on.

Friday, September 9, 2011

Step 2 is on the way!

I had my follow up with Dr. Lavery on Wednesday and things went really well. It was kind of funny, but his nurse Marlene told me that she didn't even recognize me because I have lost so much weight. That felt pretty good! I had to do some labs to make sure I'm not anemic or malnourished or anything. Those all came back great. I also had to do a manometery test. It's a test to make sure your sphincter muscles are functioning properly so that you will be able to "hold it" when you get the urge to go to the bathroom. They also check to make sure that you can feel when you need to go (that there isn't nerve damage, etc.). Yes, the test is as fun and awesome as it sounds. Happily, I passed it so I'm ready to go.

On October 16th I will run my half marathon (more about that in a minute!). On October 19th I will go up to Cleveland for Pre-Op Day (a.k.a The Day of One Thousand Appointments) and on the 20th I will have my Step 2 surgery for construction of my j-pouch. Back in March it seemed like this day would never get here and now it's just over a month away. Wow. This has been quite the amazing journey.

Another funny thing happened during my visit. Dr. Lavery was asking me about my weight loss and I told him I'd been following a healthy diet and running. He wanted to know how much I run each week and then he was asking about the half marathon. At some point, I realized we weren't having a medical conversation anymore, it was more of that blatant curiosity and disbelief that a non-runner has when we runners start talking about our training and races. He wanted to know if I was competitive and I told him only with my myself. Then he wanted to know how long it would take me to run the half. I told him I hope to finish between 2:20 and 2:30 which made him laugh and state, "That's a damn long time to run!" Yes, yes it is! Oh well, I'm one of those weird people who think that's a fun time so, go me!

You might notice that I said between 2:20 and 2:30 up there and you might be thinking to yourself, "Oh really now?" Yes, really. I'm all psyched up after the quarter marathon from last weekend. 1:11:57!!! I was really hoping to go 1:15 and see how it felt. Instead, I smashed that all apart. While I know I ran well and didn't leave anything on the table, I know I can go just a little harder on race day when I know I don't have to continue training in the week to follow. I'm very excited. I can't wait to see what I can do. :-)

Oh, I did have a leak this morning with my beloved new Coloplast system. :sigh: Another shower at 4:30 in the morning. I don't know how that is when it happens, but at least it beats being out and about or busy with the kids when it strikes. I've come to the conclusion that it doesn't matter what appliance I am using if it's a matter of that secondary opening striking. Not much I can do about that except be a little more careful about what I'm eating (got a little carried away with raw veggies yesterday!) and drink, drink, drink to keep things moving along and thinned down. It was kind of weird because it didn't even phase me or upset me or anything. I just kept thinking about how soon all of this is going to be over and I got myself back to bed as quickly as I could.

Thursday, September 1, 2011

And the Winner Is....

Looks like I'll be going with the Coloplast 2 piece SenSura Flex appliance. This system is a 2 piece with an adhesive coupling....the barrier sticks to my skin and then the pouch sticks to the barrier. I was going to give the Convatec system another go, but the second set of samples they sent me were also flat so that was a bust. This Coloplast system arrived in the meantime, so I decided to give it a try. I love it! Here are my favorite things about this system:

1) The barrier is cloth free, yet extremely flexible. There is nothing on it that will get wet and stay wet. This is a huge plus! Even though I've been wearing Sure Seals, there was still a little gap in between the seal and the barrier and the cloth covering on my Hollister barrier would sometimes get wet underneath the Sure Seal and seemed to take forever to dry.

2) The barrier is almost transparent. It's really kind of a skin tone color, but it's very translucent. I can see the line of my incision scar through it where it covers it. I like this because it would be very easy to tell if there was a leak starting underneath there before it ever got close to the edges of the barrier. With my Hollister system, I would find myself sometimes staring at the edges trying to decide if I could detect a dark spot or not. This is not an issue with this new system.

3) Though it's an adhesive system, there are belt tabs to attach an ostomy belt. I was very happy to see this! Even better, the Hollister belts that I already have work with this new system.

4) The pouch was super easy to apply to the base. It's basically a peel and stick type thing, though you do have to be careful to line it up properly and make sure you roll it on from the bottom so it's smooth and there aren't any creases or bubbles. I was worried this would be tough to get right, but I'm two for two so far with minimal effort. The back of the base plate is clear, so you can actually see through and know if anything is getting under the pouch and compromising that seal. It is normal to see a little bit after about eight hours and it can kind of very slowly creep outward. It was recommended to change the pouch when this "creeping" got to about the 2/3 mark, but I was ready to change well before that happened. I think mine wasn't even quite halfway when I took the first one of at four days.

5) Flexibility! Because there is no solid mechanical coupling, this whole system moves and bends with my body. It's also super light weight and low profile. It doesn't show through my clothes at all.

6) I love the opening on this pouch. It is wide so it's easy to clean and the way it folds up seems very secure. You can also tuck the end up inside the covering and there is a little velcro to hold it there. This means the bag is no longer touching the top of my leg which I enjoy---especially when running!

7) So easy to remove! There is a little tab at the top of the barrier that doesn't stick to your skin so it gives you a place to get things started when you are trying to remove the barrier. This is a huge help as I sometimes had to really poke and prod at the edges of my Hollister barrier to get it to lift up and then my skin would get red in places.

I think that's it! :-) The one draw back is that my Sure Seals don't quite fit around the base plate of the flange. I've worked around this by cutting them in half and fitting each piece on separately. That seems to work pretty well and the extra security of the Sure Seals is worth the extra effort. Aside from that, I love this new system and I'm glad I took a chance at trying some new things out. I've run about 15 miles in these and no issues there either.

Speaking of running, I am really proud of myself for running 74 miles in the month of August. When I was going into the hospital in March, I had no expectations of being where I am right now. I wondered how I was even going to make running with my ostomy work, let alone imagining I might be training really well at this point. I've run almost 200 miles with my ostomy and it hasn't caused me any trouble at all. In fact, my new level of health has made my running that much easier and better. I remain incredibly grateful that this was an option for getting rid of my UC.

A couple of exciting things are coming up! Tomorrow night I am fortunate enough to have the opportunity to enjoy dinner with Kathrine Switzer. The local running store that sponsors my marathon training group is hosting her for a book signing this weekend. On their Facebook page they asked for postings about overcoming adversity through running and my story was one of the top two based on "Likes" left on the posts. As a result, I am joining some of the running store staff, as well as the top vote recipient, tomorrow night to have dinner with Kathrine. I am incredibly excited to meet a woman who has achieved so much in running and increasing opportunity for women in sports. I am also honored to be able to share a little bit of my story with her and see it as another great chance to spread IBD and ostomy awareness.

On Wednesday I will again make the drive to Cleveland to meet up with Dr. Lavery and discuss Step 2 of my surgery process. As of two days ago, I was within two pounds of the weight loss he wanted to see before we would go ahead with the next step. I am confident I will be getting the green light to move forward. I am hoping we will be able to schedule surgery for the week following the Columbus half marathon. If not, I will take the first available appointment after that. It's a little bit exciting, and scary, to think about going back into the hospital. I'm excited about it because it's one more step toward my goal of getting my j-pouch completed. I'm a little scared because I know they'll be opening me up again and this surgery is a little more intensive than what the first one was. I do have a lot of confidence in my body's ability to bounce back after seeing how well I recovered from the first surgery. I also feel a lot of peace around knowing I will be back with the same nursing staff who took such amazing care of me during my last stay at Cleveland Clinic. I have absolute faith in the abilities of my surgeon and I know I will be just fine. I am not looking forward to starting over with a new stoma. Mostly because it will mean back to square one with the soft diet and all of that. Oh well, I made it through all of that once and I can do it again, right? Depending on how long he wants me to wait in between Steps 2 and 3, this could actually all be over with before the end of the year. Kind of mind boggling when I think of it that way.

Speaking of mind boggling, I try really hard not to think about the entirety of the last 12 months or so of my life all at once. It's really overwhelming when I allow myself to do so. In the last 12-13 months I've: had a baby, had a car accident where I totaled my car, had a huge UC flare up which would not respond to steroids, trained for a run a half marathon while battling that flare, had my colon removed, recovered from surgery, trained for a second half marathon (which I will run in about 6 weeks!), and made the lifestyle changes needed to lose 75 pounds. All while somehow keeping what remains of my sanity and trying to be the best wife and mother I can be. So last night when I checked the training log and saw those 74 miles for the month, I took a moment to think about all of this and I will admit I cried a little. It was just really emotional as I reflected on everything it's taken to get here, and even more so when I think of how far I have yet to go. It's funny though because I am more convinced than ever that there isn't anything that I can't do. I have at the core of my being an undeniable strength and endurance that can never be taken away from me. I know that now. I've seen it, touched it, and tapped into it when I really needed it the most. It's real, tangible, and hard as a diamond. My life will never be the same now that I have this knowledge, and that may be the thing I am most grateful for above all the rest.

Sunday, August 21, 2011

A Couple of Experiments

My first batch of appliance samples came in the mail last week. These were from Convatec. They sent me four each of two different systems. One was a one piece system which I can no longer remember the name of. The other was their two piece Esteem Synergy appliance. I was interested in giving the Synergy a try because it's an adhesive coupling two piece versus the mechanical coupling I am using now. It's way more flexible and has a much lower profile on the body. I somehow mistakenly ordered the flat skin barrier instead of convex (which I normally use). I decided to go ahead and give a try though just to see how it felt on, how easy it was to apply, and if I had any issues with the adhesive.

The skin barrier was really easy to apply. It's a tape collar where my current system is the hard neoprene type stuff all the way to the edges. The backing is in two separate sections. You peel the first off to apply the central "hard" part of the barrier and then peel the second section off to smooth down the tape edges. That was pretty nice. Once I had the wafer on, I really liked how small it was compared to my Hollister one and how it felt (not stiff at all!). I've heard some people have trouble applying the pouch to the "landing zone" on the wafer, but mine went on with no trouble at all. I really, really, really like the velcro closure on this pouch. There are two separate times that you velcro it so it feels really secure. The whole system felt really lightweight and it was basically invisible under my clothes. Once I had it on though, I pretty much knew it would fail in short order. No flaw of the appliance, but it was the convexity thing. My stomach is still pretty soft, so I really need that convexity to press the area around my stoma down and keep the opening inside the pouch where it belongs. Also, there is no way to use an ostomy belt with this system, so I didn't have that for a backup either. I'm curious as to how running will be without an ostomy belt, but this change only lasted about 9 hours and I didn't get to test it out on a run. The leak did answer one question I had about the tape collar. When I applied it, it seemed like the tape part was pretty porous and I was wondering if liquid would come right through it if there was a leak. This did not happen at all, so that was a good bit of information.

Because the one piece I got from Convatec was also flat, I decided not to test it out and put my regular Hollister setup back on. I did call Convatec and request the two piece system in convex and it is on its way to me. I will let you know how it goes once I get a chance to try it out. The extra samples I can't use are going to another ostomy person that needs them, so I'm happy not to be letting them go to waste.

My other grand experiment is diet related. I've kicked around the idea of going vegetarian for awhile now. I was hesitant to go for it with the ostomy because I didn't know if I could handle the additional fiber, etc. without blockages or other trouble. I finally decided to just do it and see how things go. On Tuesday it will be a week and I am happy to say I see no ill effects at this point. I am still keeping raw fruits and veggies to a minimum, but I can handle a decent amount of the cooked veggies that I feel safe with as well as beans, lentils and rice. I feel great, eating like this seems to be fueling my running well, and it's helping me to take off those last couple of pounds I need to shake off before I see Dr. L here in a few weeks. Win, win, win if you ask me. I've drawn a lot of inspiration from Matt Frazier and company over at No Meat Athlete. It was really reassuring to me to see such solid examples of vegetarianism being compatible with endurance sports. I've also found a ton of great recipes through Matt's site that have allowed me to eat real whole foods versus lots of packaged and processed "meat substitutes" which is a very good thing. I would say I'm about 95% right now as I'm still using up a few things that I already have around the house (like some frozen dinners, etc.). As I'm buying new stuff though, I'm doing it with a plan toward vegetarian meals and snacks. It's working out well so far.

Oh, one last fun note. I've now run nine miles with Pedro. Pretty awesome. Not a blip of trouble along the way either. I was a little worried on this last run because I overslept and I didn't get a chance to eat my normal food and wait for that second morning empty that always seems to crop up about 45 minutes after I get up. Everything worked out just fine though. I think once I start running, the diversion of blood flow away from the digestive system slows everything down enough that it's not a problem. I always have an empty, or nearly empty, bag even after running for over 90 minutes. Whatever is making that magic happen, I'll take it. I'm feeling confident now that I will be able to run the entire half marathon without needing to empty. Even if I do, there are port-a-potties and I'll carry some wet wipes and stuff so it will be fine. Would be really nice if I didn't have to worry about it at all though!

Thursday, August 11, 2011

Fall Apart, Pull It Together

Yes, sometimes I fall apart, too. I try to keep an encouraging message when it comes to this blog, because that's who I try to be in general. In truth though, sometimes I fall apart and things aren't awesome. I'm not immune to it anymore than the next person.

Thus I found myself staring at a leaking wafer at 4:30 this morning and sobbing so hard I woke up my husband. I've had leaks before, and I can usually take them in stride. This, however, would be the third wafer I would apply in less than 12 hours and I just couldn't take it anymore. My negative self-talk was downright vicious in that moment. I felt less than human. Who can't control even their most basic bodily functions? How did I think I was going to make it through the next how ever many months until my surgeries are all complete and I don't have to do this anymore? What if something happens and I can't get my j-pouch or....even worse...I get it and it doesn't work out and I have to go back to this? How did I think I was going to get through these progressively longer training runs, and ultimately a half marathon, when I can't even keep a wafer for more than a few hours?

These were the horrible thoughts swirling through my mind as I prepped everything I would need for one more appliance change. The first change (yesterday evening) was a scheduled change out for a new appliance. Everything was unremarkable. My skin looked good, stoma was cooperative, easy peasy. An hour or so later we were out eating dinner and something just didn't feel right. I left for the bathroom sure I would find a leak. Nothing. Still, things just felt strange so I popped open the top of my pouch coupling and then I could see why. The top third of my barrier paste ring was completely inside the pouch. This meant a leak was inevitable, but I felt ok finishing dinner and taking care of things at home. Once home, I took the wafer off and could see that it might have lasted another hour or so, but the seal was quickly being compromised. I was glad I caught it as we were taking the kids to an outdoor movie and would be out of the house for a few hours. I would have ended up with a public restroom change which I've been able to avoid so far. New system in place, I went on about my business. Everything seemed fine with this second change. I guess that's part of the reason I felt so defeated when I woke up at 4:30, went in to empty, and found the leak.

It ultimately turned out that yesterday was the perfect storm culmination of a couple of issues I've been dealing with over the last few weeks. The first is that I've lost about 25 pounds since my stoma was placed. Originally, the location was selected because it was on the "summit" of the "hill" that my lower belly formed. Now that I've lost weight, the size of the belly hill has shrunk and the stoma is no longer perched atop that summit. It is now sort of above it and toward the new place where my skin wants to fold in (still working on shrinking that hill, so yes there is still a fold....just a smaller one!). One thing I've noticed in the last couple of weeks is that the edge of the stiff collar formed by the mechanical coupling of my wafer (the plastic ring the pouch snaps onto) seems to poke beyond the edge of where my belly wants to fold in. I'm thinking that when I move around a lot and get into positions where I'm more "folded up" than usual (like sitting cross legged on the ground at an outdoor movie) that firmer area can't bend with my new curvature and it ends up pulling away a bit. I think this has caused some of my leaks. Another issue is that my digestion has really thickened and slowed down. This is good in some ways because it mean less emptying, lower dehydration risk, etc. It is also bad in some ways because really thick output is hard for the stoma to pass. I seem to be more and more susceptible to partial blockages all the time. This lands me in that situation I've mentioned in the past where output is forced past the stoma and into the "downstream" piece of intestine that forms my loop ileo. Since I'm not hooked up inside, there is nowhere for this stuff to go until it collects a bit and eventually gets squeezed back out through the tiny secondary opening at the base of my stoma. This almost always results in a seal loss because what is coming out is thick and typically has nowhere to go but under the wafer edge. I try to leave a little space at the side where the opening is, but a lot of times the paste ring will swell up and block it off anyway.

Early this morning I was feeling really defeated. At one point I asked my husband if he would be able to get the time off of work if I moved my appointment up and tried to have surgery in early September instead of mid-October. He was supportive, but he seemed to know that wasn't the best thing for me. It would mean giving up another half marathon after I've been training so hard and doing so well. I guess my thinking was that moving up Step 2 would move up Step 3 and get the whole thing over faster. I just wanted to be done. I laid there in bed and thought and thought about things. I don't think I went back to sleep at all. I finally decided I wasn't going to let this set back beat me. I know I need to drink more fluids with my meals and throughout the day to cut back on the thickening issue. I can do that, it's an easy fix. I also went online today and researched some of the other appliances that are out there. I'm still using the same one I came home from the hospital with even though my body has drastically changed. It's no wonder I'm having problems! I requested some samples of a few systems I think might work better and I'll give them a try once they get here. I feel like I'm back on track now and I can manage this. I will move forward according to my timeline. I will train for and run my race. I can do this.

Monday, August 8, 2011

Chose Your Hard

I've been a member of Weight Watchers for almost a year now. In that time, I've lost 55 pounds with the program (coupled with 15 of my own in the month prior for a grand total of 70). It hasn't been easy, but the tools and support of the program have made it doable. One particular meeting topic has been stuck in my head for a few days now just begging me to write about it, so here I am.

During the early fall holiday season last year, my WW leader gave a presentation where she talked about how all phases of the weight loss process are hard. It is hard being overweight. It is hard to lose weight. It is hard to maintain that weight loss once you achieve your goal. As a group we shared the things that are hard about each phase and created a list on a white board. Once they were all up there she looked at all of us and told us it's up to us to chose our hard. If all of these phases are hard, which one do you want to be in while you are experiencing hard? It was a light bulb moment for me and a message I've drawn upon many times during my weight loss journey.

In the last few days, I've been thinking about how this same message applies to life with an IBD, especially for those of us who end up on the path to surgery. There is no doubt at all that many things about life with an ostomy are hard. The learning curve is steep, ignorance and stigma abound, and there is a lot of forging your own way to be done. The thing is though that life with UC was also hard. Fighting flares is hard. Dealing with the side effects from medication is hard. Gritting your teeth and hoping you'll make it to the front of the grocery store to get to the bathroom in time is hard. Being anemic is hard. Knowing you could poop your pants during a training run but going out and doing it anyway is hard. Being in daily pain is hard. The decision to have surgery is also hard. For me, it meant accepting that I would be cut into and hospitalized on three separate occasions and deciding to embrace that process. There is no question that recovery is hard, and so is the separation from my children when I have to be in the hospital. All of these things are hard.

I've chosen my hard. I picked the one that restored health to my body and freedom to my life. Yes, I have an ostomy which means I have some daily things I need to do that not everyone does. There are things about it that are hard---like sometimes worrying about leaks, fighting dehydration, and working around some dietary tweaks. There are times when I wonder why on earth I did this, and then I remember and I take my newly healthy body out for a nice run. I'm only part of the way down a road that is sure to bring more hard, but it's my hard. It's the one I've chosen and I don't regret that choice one bit.

You have to chose your hard.

Sunday, July 24, 2011

12 Weeks and Counting

As of this morning, my fall half marathon is exactly 12 weeks away. I'm starting to get excited for it. I've been running for 9 years now and I can't believe this will be the first time I'm running my hometown race. Kind of crazy. I've just never been in the right place at the right time training-wise so it's nice to be getting ready for this and able to participate in the growing buzz among the local running community. I feel like my training is going really well right now. I'm feeling strong--nothing hurts, I'm not overly tired, things are moving along like they are supposed to.

Saturday's long run was another test of the new me and how well I can manage differing conditions and situations with my new guts. Aside from blockages, the greatest threat to someone with an ileostomy is dehydration. It will take us down fast and land us in the hospital on IV fluids if we aren't careful. We've been experiencing a pretty major heatwave here for the last two weeks or so and it got especially bad this past week. Temperature indexes have been in the triple digits each day, humidity levels are off the charts, and air quality alerts have been issued on most days. I do most, if not all, of my week day running on a treadmill in the air conditioned basement. It is the easiest way to get things done consistently while taking care of my children. It also keeps me in the safest conditions possible for summer running, and I feel fortunate to have this resources available. I could never train as well and often as I do if I didn't have this option.

Long runs are a different matter. I need my group. I need to get outside. I need the mental and physical break from the monotony of the treadmill. So, I get up stupidly early on Saturday mornings and join my MIT (Marathoner In Training) group for long runs. This weekend we bumped the start time up to 6:30 a.m. in an effort to dodge the worst of the heat. At 5:30 it was 79 degrees with 80% humidity. Bad, bad news. I was really nervous about getting through the run. I'm not acclimated to heat right now. I'm scared to death of dehydrating in good conditions, so this had me really edgy. I decided to take the 48 hours leading up to the run and use them to aggressively hydrate and make sure I was as topped up on electrolytes as possible. I doubled my intake of Powerade Zero (my electrolyte drink of choice) and made sure I had plenty of water throughout the day. I also took a break from alcohol, no evening glass of wine. I did not skip my coffee though....I'm not completely crazy! Friday evening I added some extra salt to my meal and I chose pretzels for breakfast Saturday morning to take a little extra salt on board. I had prepped about as well as I could from a nutritional stand point.

I've been using GuBrew tablets in my hand-held water bottle for long runs. They have a higher level of electrolytes than my Powerade Zero yet are still basically sugar free. With as much as I need to drink, I prefer to keep my sugar and fluid replacement separate at this point, so I start out with a sugar free electrolyte drink. MIT had fluid stations at the 1 mile, 2, 4 and 6 mile points. We would go out 3.5 and then turn around to come back, so we hit stops at miles 1, 2, 5 and 6. I kept up my normal pattern of drinking as each song changed on my iPod. I was also wearing two of my 8 oz water bottles in my Fuel Belt with plans to use one to take my gel and the other was for emergency back up in case I ran out at some point. As we hit the fluid stations, I added Powerade to my hand-held to top it up, so I gradually transitioned over to all Powerade as the run progressed. This worked nicely for me and I think I'll keep doing it. At about 3.5 miles I took a gel, and at the one hour mark I took 2 Endurolyte electrolyte capsules. I think I went through about three bottles worth of sports drink in the handheld (about 60 oz), 8 oz of water during the run (to take my gel), one gel, the 2 caps, and about 12 oz of water at the finish of the run. I didn't lose any weight from start to finish, and my skin wasn't all covered in salt afterward, so I think I managed things well.

Midway through I was feeling strange in my head. I wasn't light headed, but I felt slightly mentally confused. I couldn't decide at first if I just needed my gel or if it was the temps getting to me. I realized that sweat was dripping off of my shorts and the brim of my hat. I knew then that it was pretty bad and I was taking in about all I could without making myself sick to my stomach. I also felt like my heart rate was up and I was working a little too hard even though we were about 20 seconds or so below our average pace (and a full minute below what I'd done the week before!). I knew it was the heat and I decided I didn't have anything to prove to anyone. The smart thing to do at this point was to dial it down and make it back to the starting point without ending up in a dangerous situation. There were a few other runners around me at that time who seemed to be struggling, so I asked them if they wanted to do a run/walk interval with me for the trip back. We settled into a 3 min/2 min run/walk pattern and finished the mileage feeling much better than we did when we were at the turn around. In the past I would have beaten myself up for "quitting" and walking, but I realized it was the smart thing to do. How "tough" would I have looked getting carted away in an ambulance? Not cool at all.

My appliance held up perfectly to all of this punishment. I had a little bit of nerves about it because I had my phone in my Fuel Belt and it made it heavier than normal. I kept feeling like it was pressing down on the top of my wafer, but I don't think it was---or at least not enough to cause any problems. I did a change out when I got home and actually had a heck of a time getting the wafer off because the heat caused everything to really melt onto my skin. I could see that the paste ring wouldn't have held up for much longer, so I'm glad I changed it out when I did. I messed things up when putting on the new wafer. The paste ring I made was kind of glopping over the edge at the top of the wafer, but I didn't really notice until I'd stuck the whole thing on. The paste at the top was rolled inward and very close to the opening of my stoma. I knew it would fail at some point, but it was firmly in place and I didn't want to rip the whole thing off again. I decided to just wear it and keep an eye on it until I had to change it. I was thinking maybe 24 hours or something....turns out it was more like five! I did a quick check of things before we left to meet some family for dinner and I had a leak. No big deal. I did a change and we were on our way. It was my first change outside of the shower in a long time, but I have enough of a routine down now that it was still pretty easy.

I'm not going to lie, I can't wait to get through the remainder of my surgeries and get rid of my ostomy. The idea of one less thing to think about and maintain as I go through my day holds a ton of appeal right now. I will say though that the past couple of months have taught me that I would truly be ok if I somehow ended up having to keep it or get another one. I know there would be some mental speed bumps to get over, but ultimately I would be fine.

Sunday, July 17, 2011

Yes, I Do Mean Anything....

I keep talking about how you really can get your life back and do anything you really want to do after surgery for UC or Crohn's, so I wanted to share this great article that illustrates exactly what I mean. Zak Hammond is a perfect example of what I mean when I say "Life Takes Guts." You just have to get out there and go after whatever it is you feel inspired to do. Don't let your illness stop you. Don't let fear of how the ostomy will hold up or what might happen stop you. Don't let your own self-consciousness stop you. Odds are very good nothing bad will happen. Odds are also very good that nobody will be able to tell you have an ostomy. People don't pay as much attention to us as we like to think they do. Even if they can tell, so what? It's an opportunity to educate, dispel myths, and show your strength.

Don't be afraid. Don't hold yourself back. Get out there!

Saturday, July 16, 2011

Go, go, go!

I ran six miles this morning with my half marathon training group. Six awesome miles. Oh, I also went with a faster pace group than I normally do and I did not die. I am running faster and stronger than I have in years. All of this amazes me to no end seeing as I had my abdomen sliced open and my colon removed less than four months ago. I still marvel at the amazing miracle of having my health restored. Yes, there are things about having this ileostomy that are a total pain in the, umm, butt I guess....but what I have gained from it so far outweighs any and all of the negative stuff. I would not go back and do it differently if given the chance, unless it meant maybe I did it a little sooner instead of getting so sick. The thing is though, I think I had to get to where I was in order to be ready. The whole thing is quite the undertaking, so being ready is of the utmost importance.

I only ended up with one little ostomy related snafu during my vacation. At one point, I had a pouch where the adhesive that holds the velcro on the closure just gave out. This meant I could roll it up and velcro it, but it wasn't going to stay closed. Not so good. Luckily, I had ducked into the bathroom for a just in case last minute emptying type thing right as we were on our way out for some shopping. Thank goodness I am in this habit of checking on things one last time before leaving the house! I simply switched out pouches since I use a two piece. It was my first time doing this, but it was super easy. All I had to do was pop off the old one, use a couple of flushable wipes to clean around the snap ring, and then pop the new pouch on. Then I was ready to roll again. I thought maybe the adhesive gave out because of too much exposure to water, but it happened a second time after I got home. That pouch had only been exposed to two showers and no running or swimming. Very odd. I had plans to change the whole appliance that evening, so this time I broke out the super glue and reattached the velcro to where it was supposed to be. That was a nice solution and everything held up perfectly until I did my change later that night. I'm wondering if there isn't a defect in this box of pouches or something? I'm not sure. The pouch I'm wearing now went on Tuesday night and it hasn't had any issues though I've run in it a few times and showered as well. Might have just been a crazy fluke. I will definitely continue to check on them before I go out though!

I am also really happy about my weight loss situation, especially considering a week of vacationing away from home. I didn't really follow all of my Weight Watcher's stuff during my trip, but I did call on some of my new habits such as controlling my portions, deciding which "bad" foods were really worth the splurge and which ones I could ignore, and keeping my exercise up. The end result was a one pound gain. I was thrilled. I completely enjoyed myself, don't feel like I missed out on anything, and the damage was minimal. Yay, me! I now have a little less than 10 pounds to lose to make Dr. L happy when I go back in September. I'm more confident than ever that I'll get the job done. Still hoping to schedule surgery #2 for right after the Columbus half in mid-October. Hopefully he agrees!

Wednesday, July 6, 2011

Greetings from the beach!

It's kind of gloomy and thundery this afternoon and both of my kids are sleeping, so this seems like a good time to pop in and give an update on how the whole vacation thing is going. I am really happy to say I've had absolutely zero ostomy related issues. I put on a new appliance Friday afternoon and, when I changed it out yesterday, it was still perfect....absolutely no compromise of the seal or sign of impending leakage. This was after a day and a half of car travel, two sweaty beach runs, a day on the beach and in the pool, lots, lots, lots of junk food and a moderate amount of adult beverages. Hooray! Sure Seals are definitely the ticket. They've worked a charm and I feel so confident--even while sleeping. I'm really glad I got them. :-)

Friday, July 1, 2011

Fasten Your Seat Belts!

Early tomorrow morning we will leave for a week-long beach vacation. How early is still to be seen. My lovely husband has this elaborate fantasy of making it out of the house and being on the road by 6:00 a.m. I just look at our two little monkey boy children, smile, and let him dream his dream. At any rate, we will at some point arrive at our destination where we are set to spend a week with family at the beach. The house we are staying in looks to be amazing and gorgeous. Right on the beach! I'm really excited.

I'm also excited because this will be a big test of my carefully cultivated ostomy management skills. There will be many challenges and I'm looking forward to seeing what the outcomes will be. I'll be facing the whole swim suit thing head on. There will be time spent in the pool, a hot tub (maybe? not sure how much I'll want to be in there depending upon the temps), and in the ocean. I am also planning to run on the beach. There is the added bonus of my first major car trip with an ostomy. Lots and lots to tackle head on. I'm interested to see how it goes.

The one thing I am doing to put myself at ease is over-packing. I have plenty of clothes and we have access to laundry so if there is an "incident" I will be fine. I'm also taking along a ridiculous amount of ostomy supplies so if I end up needing to change my appliance more frequently it won't be a big deal. I am now very confident with my Sure Seals and paste set up, so I'm not too worried about having leaks, etc. My goal was to plan, pack, and then relax. I think I'm ready!

Monday, June 27, 2011

You Can Get Your Life Back!

Can I just take a minute and tell you all about my amazing weekend? Well, I guess it's my blog so the answer is yes...right?

I went into the weekend with a little uneasiness and a touch of nerves. I had two big running related items on the agenda. The first, a five mile training run with my Saturday morning running group. This would be the longest run since surgery, and it gave me a few butterflies as I prepared for it. I know I will face this feeling over and over as my training progresses toward my October half marathon, but I'm still getting used to it. Actually, I get that feeling before every long run and I always have. I think it's the thing that drives me to double check my equipment, to get everything ready the night before, to verify (and re-verify) that batteries are charged in the Garmin and iPod. That need to check, check, and re-check to make sure I haven't forgotten anything. I know I'm not the only runner who experiences this, it's just something that we do.

Saturday morning the weather was perfect. I was wearing a pouch I had applied on Thursday. I figured if the long run trashed it like last week, at least I would have a couple of days on it first. With the Sure Seal I wasn't nervous about running in a two day old set up at all. The run was mostly uneventful which is great for a training run. I did feel a little loss of energy or bounce around the four mile mark. I think my need for gels hits sooner now than it did before. I've also talked things over with a few distance runner friends and determined I'm going to add some salt supplementation for anything over four miles. Somewhere between adding sugar and adding salt it should even things back out. This balancing act is always an experiment during training, and with my new innards this season is no exception. I'll dial it in though, no doubt about that.

Sunday morning was a whole different monster. It was race day! We entered a 5K to support a local political issue and it would be my first race in a long time. I had about three days worth of internal debate about racing versus "just running" this event. When I finally shared my dilemma with my husband he just said, "Well, of course you'll go out there and go as fast as you can." It was like he couldn't believe I was considering any other option. Love that guy! The weather Sunday morning was about as perfect as you could ask for in late June and that sealed the deal. I was still wearing the same appliance as I'd worn in Saturday's run as it was holding up just fine. I did decide to carry my hand held water bottle which I would have never done in a previous 5K. It was kind of nice to be able to bypass the water station though!

I ran a strong race, but I pushed too hard for the first half. At the turn around I realized if I went faster on the way back at all I would beat my personal record. I really went after it, but when I hit the two mile mark my legs just died and I took my first walk break. I'm not sure how many times I walked but I want to say it was three times for about 40 seconds each. In the end, it made my last mile about a minute longer than my first. I missed my personal record by about 50 seconds. During the race I was completely unaware of the ostomy. It was a great feeling!

Afterward I went through a period of being a little stern with myself and wondering if I couldn't have pushed a little harder and done better. Once I got a nap (and some perspective!) I came around and really thought about things in the right way. It was three months ago that I was laying in a hospital bed up at Cleveland Clinic hoping I'd get to go home soon. It was an effort to take those 10 minute walks around the floor. Now I'm pushing close to beating my best time at a racing distance that has always presented a huge challenge to me. I'm not only running, but I'm running well. I'm stronger and faster than I've ever been at this point in the training cycle. That is truly something! My finally healthy body is able to respond to the training in a positive way and I'm excited to see where I can take it this year. These are amazing times for me after all of those years of illness, pills, and fatigue. I need to celebrate these things!

So yes, friend...if you are reading this while researching surgery, or maybe you're in the hospital and they are telling you that you need a colectomy and you're scared, or you've just had surgery and you feel so weak and tired....you can get your life back. If you are wondering if you'll ever be able to do whatever that thing is that lights your inner fire again, the answer is yes...at some point you will. Let yourself get healthy, let your body heal, and then you go after it and you find a way to make it work. I promise you, it's worth it.