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 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, 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. :-)