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.

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