Tuesday, January 31, 2012

I know I keep using the word amazed....

Seriously thought, that's what I am. Amazed. I continue to be completely amazed by how well my new "plumbing" is working. I never expected it to be this good this early on! If you are a person with healthy guts, this will probably sound awful to you, but if you are a j-poucher...or even just an IBD sufferer, then you'll understand where I am coming from.

I am seven days out from reversal surgery. I am averaging six to seven trips to the bathroom per day right now. I took an Imodium before breakfast this morning and was able to go from 9:00 a.m. to 3:00 p.m. without needing to go at all. I sleep all night without interruption. I have no leakage, accidents, pain, bleeding, or urgency. It's wonderful!

The only issue I've had is a little bit of irritation, or what we j-pouch kids like to call butt burn. I think I've pretty much resolved that thanks to some tweaks to my routine and remembering that I still had my little squeeze wash bottle they give you when you have a baby. For those interested in such details here is what I do: go as needed, squirt a little water to rinse off the excess, use a Cottonelle wipe to get things clean, squirt a little water to rinse off the stuff from the wipe, pat dry with TP, then apply my protective paste I got from CC. It sounds like a lot, but it isn't that bad and it has helped so much that it is worth the steps. We are looking at ordering a bidet seat for the toilet though. That would cut out the steps with the wipe and all that because the water would be enough to clean things up. So it would just be go, clean with bidet, pat dry, paste as needed. Sounds good to me!

Sunday, January 29, 2012

The view from the other side....

Greetings, friends! I should have been writing during this time, but I just couldn't do it. I was really struggling with some emotions and things and in order to write about them I would have had to think about them and sort them out and I just wasn't there. I finally quit trying to carry emotional weight of this process all on my own and got myself back on an antidepressant. I was taking one going into my first surgery, but quit when I started finding the pills coming out in my ostomy bag. It turns out there is a different version of my medication that isn't time release coated and it is working quite well. My OBGYN wrote the prescription for me and told me she was surprised my surgeon didn't put me on something because a huge percentage of our serotonin is produced in the gut and it isn't uncommon to see depression in people who have surgery or illness of the digestive system. This blew my mind! I've never once heard of this in all the time I've been reading IBD stuff. I did some poking around on the Internet and it seems to be true. Amazing. I can't help but wonder if the depression issues I've battled since my teens are connected to my poorly functioning guts. They've really never been right, even before I came down with UC. At any rate, the medication has been a huge help and I am feeling more like myself again.

I feel like I can finally say it: the second phase of the surgery process was pretty much my own personal hell. The surgery itself went pretty well and was much less painful than part one. I think it was a combination of the illness from the abscess and the problems with my horrible loop ileostomy. I spent a good part of November, December, and January wondering what the hell I had gotten myself into and worrying I had made a huge mistake. It is an awful feeling because it isn't like you can go back. All I could do was hang on, count the days until reversal, and hope it would be better on the other side.

My imaging test went well. It wasn't as bad as I tought it might be, just slightly uncomfortable. I had a change of clothes and stuff to change my appliance with me, but I didn't end up needing any of it. The whole thing took about twenty minutes and I had one trip to the bathroom about an hour later to pass the contrast and that was it. One thing I will say about the test: if the scheduler attempts to give you a prep procedure Do Not follow it unless you check with someone from your surgeon's office. Most people with an ostomy will not need any kind of prep at all for this test. I actually ate a small meal about a half an hour before mine. If you do need a prep, it will be different from the one they give to someone with a colon. Trying to follow the standard prep will make you very sick and possibly land you in the hospital. So be careful and make sure you clear any instructions through your surgeon's office.

I ended up getting scheduled for pre-op on January 23rd with surgery on January 24th. I was more than ready to move forward and begin the next chapter of my life. Then I got a phone call on the afternoon of Friday the 20th. They wanted me to reschedule. My surgeon had some sort of family emergency and they had no idea when he might be back or how long I would have to wait. It didn't feel real. I had been so afraid that something would happen to delay things and now here it was. I was angry, sad, and devastated all at once. I wanted to scream and curse and break things. Fortunately I was in the car with my husband and kids which required me to keep myself together. I thought about the situation a bit and realized this was actually a very simple part of the surgery. I'm sure a resident could probably do it if needed. I called back and explained how upset I was and asked if there was anything that could be done. They asked me if I was comfortable with the idea of another surgeon and then placed me on hold for a few minutes. I then learned that Dr. Kiran had agreed to perform my reversal surgery. I could even keep my original date and everything. Oh, was I relieved. It seemed kind of crazy to meet the man on Monday and have him operate on me on Tuesday, but that is when I realized how grateful I was that I had decided on the Cleveland Clnic for this process. The entire colorectal surgery department there is among the best in the country. There was no need to worry.

Pre-op day went off without a hitch. I found Dr. Kiran to be very pleasant and he answered my few remaining questions. He would be doing the closure the same way Dr. Lavery had described. I had my labs drawn and then we spent the remainder of the day lounging in our hotel room and watching silly television shows. I had to spend the day on a clear liquid diet which made me a little grumpy, but I managed. My surgery check in time was 8:30 which let us sleep until a decent hour but I didn't have to sit around hungry for half the day. The pre-op area was running ahead of schedule and got me all set up pretty quickly. I did have to wait in a sort of staging area back near the OR's for awhile while they finished the procedure ahead of mine and got the OR cleaned up and ready to go again. I mostly napped during this time and felt very relaxed. When they took me into the OR I could feel my heart beating a little faster, but I didn't feel as nervous as I had for my previous surgeries. I knew this one was expected to be simple. They moved me to the operating table and we were all making jokes and laughing. They gave me something to help me relax and that is the last thing I remember. I usually am still awake when the doctor comes in and they give the actual anesthesia, but I guess I was pretty tired and just fell asleep before all of that.

For the first time, I woke up as they were finishing pulling the breathing tube from my throat. It wasn't painful or scary, just weird. I was awake going into the recovery area which was also a first. Normally I don't remember anything until I'm in my hospital room, but I was really alert. My nurse was surprised I was so awake and talking and asking questions. I wanted to see my stomach right away. It was so odd just seeing a bandage there.....but the bag was really gone! I had done it! They gave me an injection on my right side to block the pain from the incision and told me it would last 12-16 hours. I also had my pain medication button which I could press every six minutes. I was feeling really good! I couldn't believe how good. They let my husband come back to hang out with me while we waited to be moved to my room. It didn't take too long and then I was transported over to H50/51.

I don't know if I've said it before, but even if I have it is worth saying again. The recovery floor for colorectal patients at the Cleveland Clinic is amazing. All of the patients are there for similar reasons and all of the staff is knowlegable about ostomies and how to care for colorectal surgery patients. It takes a special kind of caregiver to come and empty your ostomy in the middle of the night and maintain a smile and compassionate attitude while they do it. I love the people who work on that floor and I could not have made it through this process as easily as I did without their excellent care. It was funny, while I was there I was constantly running into people who had cared for me on my prior visits and they would congratulate me and hug me and tell me they were proud of me for making it through all of this. Not your ordinary hospital experience.

Tuesday night that pain blocking injection had me feeling so good that I made two separate walks out around the unit trying to help my guts wake up. I was approved for clear liquids right away, but I decided to stay on just ice chips that night and go to the extra stuff in the morning. You do not want to put stuff in there before the body is ready! I made that mistake the first time and I did not want to go through that again. When the pain block injection wore off, I did have some serious soreness on my right side, but it was different than my previous surgeries. It was more of a muscle ache....I described it as feeling like I'd done all the sit ups in the world and man did it feel that way. The pain pump kept things under control as long as I remembered to push the button on a regular basis. I slept horribly the first night! My roommate was very sick and was up most of the night in pain so there was a lot of activity in our room. I later learned she had been in there since December. She has Crohn's and they found cancer during a bowel resection surgery. She was really having a difficult time and I felt really bad for her.

Wednesday was clear liquids and lots of walking. At some point in the afternoon I finally pooped and it was kind of hilarious because the nurse and aide were very excited about it and congratulating me. It seemed silly, but it really wasn't after all I went through to get to that point. I had a lot of pain in my stomach from gas and the stool I was passing was all liquid, so it was all a little traumatic for me. It kind of took me back to that feeling of having UC, but I soon realized that I could control things and didn't have to rush to the bathroom and that helped me feel better. I wasn't allowed to move past the clear liquids until I started passing gas because that meant things were moving via peristalsis versus just gravity. That didn't happen until Thursday afternoon. In the meantime, I spent Thursday day shift mostly in the bathroom and passed 2,500 ml of liquid stool. Everyone got really anxious about this and I was feeling completely exhausted and a little scared. Would it always be like this? I was afraid I had made an awful mistake and was very upset. They doubled up my IV fluid and supplemented with a bunch of IV electrolytes to replace what I'd lost. In a few hours I felt better, then the gas finally came and, thank goodness, I got some real food to eat! That helped a lot and for the evening shift I was down to 1,300 ml of output. Still too high, but improvement none the less. We kept the IV replacement routine going and things were better overnight. I slept for six hours and felt so much better when I woke up Friday morning.

Friday was pretty uneventful. My output had slowed way down and they were optimistic that I would go home Saturday. I just kept eating and walking and hoping for the best. I did start using this protective paste they gave me because my butt was getting a bit sore from all of the liqui-poo I had going on. This is some kind of stuff they make there in the pharmacy and it is really good. It has zinc oxide, cornstarch, and some other stuff in it that I can't remember. I kept putting it on every time I went to the bathroom and it helped a ton. Saturday morning the doctor's rounded and confirmed I would be discharged! I was so excited to go home. My husband came to pick me up and the ride home wasn't bad at all. Much less painful than the previous post-surgery rides. We even stopped at an Arby's and I ate some curly fries. They were so good after all of that hospital food! That evening we had dinner at my mother-in-laws house and picked up the kids from her. She once again stepped up to watch them for us during my surgery and again so Chris could come pick me up. So grateful to her!

I am pretty amazed at how much my bowels have slowed down in just a few days. I didn't expect it to happen this quickly at all. I was able to sleep for six hours straight last night, and it was finally my bladder that woke me up at 5:00 am. I went once then and again when I got up at 8:00 to take a pain pill. I finally got up for the day around 10:30 and ate some breakfast and went again after breakfast. Things were quiet until after lunch and I had to go twice between about 2:30 and 4:00 when I took a nap. I went one more time when I got up at 6:30 and things have been quite since (about three hours). I did eat some dinner, so I expect to go at least one more time before bed. I guess I will end up around seven times for the day, maybe eight if I go twice before bed or something. That is what I hear from people who have a "mature" pouch after six to twelve months! I hope this means things will continue this way for me, or even maybe get a little better. I'm not using any Imodium or fiber supplement at the moment either. I'm quite amazed by the whole thing. It's like a miracle, really.

People keep asking what it's like to have the bag gone and all I can say is right now it is still weird to me. I do find myself reaching down to pat it to check if it needs emptied. Of course, it's not there. I took a shower today for the first time since surgery and that was strange. It was nice to not have the bag flopping around, but it felt weird to look at that part of my stomach and not see a stoma sticking out. It felt really weird to step out of the shower without an appliance on and just be able to leisurely towel off without having to hurry to get a new pouch n before poop started going everywhere. That was probably the strangest moment yet. I'm sure I will get used to all of these new experiences. I didn't realize how ingrained my ostomy was in my routines after just ten months. I am excited to have it gone again, but more than that I am grateful for everything it did for me as far as allowing me to get healthy and serving as that bridge between my old life with illness and this new reality. I learned so much about myself from this experience as well as a renewed sense of compassion for other people. I also met some amazing people out there in the IBD and ostomy support communities and I continue to be grateful for their guidance and support.

Going forward from here will continue to be an adventure. I need to learn how to resume my normal activites and how the pouch will react to them. I'm interested to see how running will be, though I have a few weeks before I can give that a go. I have six weeks of the GI soft diet ahead and then I start reintroducing foods again and working my way toward a normal diet again. I can't wait for fresh fruit and veggies! Salad! Cherries! Apples! Yay! :-)

Tuesday, January 10, 2012

More waiting, and I'm bad at it!

Oh you guys! I have to be the most impatient human on the planet. Things are moving along though. Tomorrow I make the drive to Cleveland Clinic to have my imaging done and make sure all is well and we can move forward with the last surgery. I really, really, really need this imaging test to come back with good results. I am so ready to get this last part over and done with. I've been having dreams about what it will be like to wake up from surgery, reach down to my stomach, and the bag is gone. Wow. I can actually imagine it. More than that though, I've finally allowed myself to start making plans for after and I don't want things getting delayed or rearranged. I know it would be a pretty hefty mental blow for me right now if I have to postpone or change some of this stuff. I'm ready to have my life back and have some more say about where it goes.

First of all, I'm training so that I can go back down to Georgia and run the trail half marathon I had to give up last year when I got too sick to put the colectomy off any longer. I prefer having this surgery and recovery in the earlier part of the training cycle as it seems like it will be easier to bounce back and rejoin my group for single digit mileage rather than 10, 11, or 12 miles later in the season. I'm still working with the run/walk group and went four miles with them last Saturday. Yesterday I managed 2.5 miles on my treadmill at home with no walk breaks and only about 60 seconds off of my training pace from the later part of last season. Feeling pretty pleased with my progress. The running is coming back faster than I thought it would.

The other big thing is that I've decided to go to school this spring and start working toward an RN. I've been fortunate enough to have some beautifully compassionate and amazing nurses throughout this process and they have inspired me greatly. I've been really restless about what to do as far as work goes once this is all over, so it feels good to have a sense of direction and focus about the whole thing now. I have an appointment with an academic advisor on Monday to go over my transcripts and help determine what classes I need to sign up for, etc. There is a bit if work to do as I let my GPA get a little sloppy when I was previously trying to take classes while working full time with a small child, a husband, and a chronic illness. That's ok though, I'm not afraid of a little hard work and I know I can get the grades I need to bring that number up. The boys are in preschool full time now, so there will be plenty of time to attend class and study. I'm hoping to start in March which is another reason why I don't want to see this last surgery delayed.

I'm not entirely sure what to expect from the test tomorrow. I know they will give me an enema with contrast and take some pictures, but that's really all I know. They gave instructions to bring a set of supplies to change my appliance, but I don't know if that is because they will make me take it off for the test or just because it might leak or something? I've heard of people having them pop off because the contrast fills up the bag. I suppose different hospitals might have different routines. I guess I will find out tomorrow, huh? I'm also anxious to know when my surgery date will be. I know Dr. L is supposed to be out of the office January 12th-21st, but hopefully I can get in right after that. I'm so ready!