Saturday, December 27, 2008


Pregnancy with an ostomy has been an exciting adventure. I was told that I would have a perfectly normal pregnancy and nothing would be different due to my ostomy. I am not sure why I still listen to what doctors tell me, I think I am just not ready to give up the hope that they might actually tell me something right. At 2 weeks pregnant I got erythema nodosum accompanied by arthritis. Thankfully the nodosum went away, unfortunately the arthritis hasn't. If I recall correctly (which I do because I got this lecture more times than I can count) my doctor told me "If you go into pregnancy healthy and with your disease under control you will remain that way through out pregnancy". Ha! I went into pregnancy feeling fantastic and with technically very little disease still left in my body and here I am having all sorts of problems. My GI told me that I really was in the worst situation, my disease was uncontrollable so I had my colon removed, yet it still is giving me problems elsewhere. Most people don't have these kinds of problems after surgery he said. Where have I heard that before? So the arthritis is an extra-intestinal display of the ulcerative colitis, inflammation running rampant through my entire body instead of just my colon. Yeah for me! The most common treatment is steroids (I promised myself after getting off them last time that I would never go back on), I was a little hesitant to go back on because not only do I hate steroids but I worried about taking them in pregnancy. So I waited and limped around until I was almost out of my first trimester before starting. Both my OB and my GI told me it was perfectly safe to take before then but I was holding on to some hope that maybe this would go away on it's own. After being on steroids for over a month and not feeling any better I decided to quit taking them because I knew the doctor would want to up my dose and there was no way I was taking more, even though I was on a low dose to begin with. After quitting the steroids I realized that they were doing more for me than I ever knew, I went down hill fast, I could hardly get out of bed, get myself dressed, or walk across the room. After some intense praying I realized that the Lord knew more about babies and medication than what I did and I was just going to have to trust him on this one. So I went back to the doctor and upped the steroids. I am now back to my regular limping and aching which I never thought I would be grateful for. I have lost mobility in my left elbow so I am pretty sure I am looking at some PT in the future, but we are getting through it and I know I could function at this level for the next few months until the baby gets here. I would like to make a special shout out to Todd and tylenol, I don't know how I would function without Todd to help me get my shirts off and rub my ankles every night and there is no way I would sleep without the tylenol. Thank you thank you thank you. Besides the arthritis we had another little adventure last week. Anna and I were out christmas shopping and getting things ready for christmas and all was going well but I just hadn't felt right all day. I can't say that I felt bad or that I had any pain, I just didn't feel right. Well I get home and find out that my stoma has prolapsed (come out of my body 5-6in). This has never happened and I didn't really know if it was normal or not but something inside my brain was screaming (AHHHHHHH, THIS IS BAD!!). Todd was working in the ER and didn't have his phone on, so i just decided to call me GI and ask them what was going on. I left a message at 2pm with the nurse and got no response (in fact I didn't get a response until mid-morning the next day, I was more than displeased but will leave that ranting for another post). By the time Todd got home I was a complete mess, my stomach had started to hurt and cramp and I had that pit one gets in their gut when all hell is about to break loose. Todd was VERY concerned when he got home and immediately made me change my pouch so we could really look at what was going on. This was actually a really good thing because my stoma hadn't only come out but it had swelled up alot and so my pouch was actually "strangling" it, decreaseing the blood flow. The stoma was different colors and bleeding and not looking very good, Todd was ready to take a trip to the ER but we had a pack meeting that night and I really wanted to wait until after that (he never puts work into pack meetings like I do, I wasn't canceling that thing for a million dollars!). We compromised with him calling the surgeon that he rotated with a few months back and is good friends with to ask his opinion. That's when we found out that this was considered an emergency surgery situation and would most definitely have to be fixed with surgery, yeah for me! The fact that I was pregnant did complicate things because amazingly enough general anaesthesia really isn't good for developing babies, but there wasn't anyway I could wait until the baby was born to have this fixed. So, he asked Todd all sorts of questions about the color changes and bleeding and said that if it got any worse during the night to take me to the ER and he would operate tonight, otherwise we were to call him first thing in the morning and he or one of his partners would get me in for surgery tomorrow. I was supposed to go out of town the next day so this was really cramping my style but it seemed there was nothing else to do. So, I called my mom, she drove out and we went to pack meeting. Then, the most amazing thing happened, sometime between 2am and 4am the next morning my stoma went back in! It was a little swollen still but other than that it looked normal. I can't tell you the relief I felt, but also a little fear because now I REALLY didn't know what to do or what was going on. Todd called the surgeon and he was thrilled that is fixed it's self but we set up an appointment to see him in his office the next day anyway. Oh, Todd also saw my OB that day and filled him in and the OB said to avoid surgery unless I was on the verge of death....great. So we go in to see the surgeon and he tells us how strange this is that this happened to me, usually IF it is going to happen it happens to old, obese people who have had their ostomies for years and years. Obviously I am not old, I am pregnant but I haven't gained THAT much weight, and my ostomy is less than a year old, he said that there was no explanation as to why is prolapsed...I am just lucky. If I had a quarter for all the "luck" I have had I would be a millionaire. I really and truly am lucky that my stoma fixed itself without surgery though, the doctor says that it will most definitely happen again and it will have to be fixed surgically at some point but the goal is to get through the pregnancy first. I am just hoping that if it fixed itself this time than it will fix itself next time, if I can't wait until the baby is born to have the surgery the farther along I get the better. I feel like a time bomb waiting to go off, I don't know when its going to happen or where, if I go out of town I have to pack accordingly because my normal clothes don't fit when my guts are hanging out of my body, the whole thing just makes me a little nervous. But, it has been 2 weeks since it happened and I have been just fine so I figure that's a good sign. Wow, all this adventure and I am not quite 19 weeks, I don't know if I am up for much more adventure during the next 20!