Back in the days when I was not a semi colon, I used to get colonoscopies with disturbing frequency. When I changed to my current GI doctor, he preferred to do sigmoidoscopies (they don't require you to drink a gallon of salty laxative in preparation - all that's required is a few enemas. Either kind of prep is unpleasant at best, but it's worse than torture if your colon is full of bleeding ulcerations like mine was). As I prepared for my first surgery, I consoled myself with the thought that I would no longer have to have colonoscopies once I had no colon.
Unfortunately... I was wrong. My J pouch, Twitchy, which was supposed to heal up to be my "new colon," got inflamed and bled and spasmed continually. This necessitated... you guessed it! several scopes and biopsies of Twitchy to monitor the level of inflammation.
Then, I had my second surgery. Dr. A told me that I would be completely sewn shut! And I thought, "Haha! No more scopes!!"
Well... once again, I was wrong. I am getting scoped on Friday. Through my backside. Through the hole that has completely failed to heal shut after surgery. The two surgeries I've had have not fixed the fact that I am bleeding from my back passage. That's special. ;)
How did this scope come about? On Monday, I started calling the GI clinic, because we need to get this abscess thing figured out and taken care of once and for all! I didn't get a response, so I started calling again around 3:30. It was a good thing I did. It turns out that GI Dr's nurse wasn't in on Monday, so they were going to just leave a message for her to answer the next time when she was at work. Um... no thank you! I told the answering person that I really needed to talk to someone today, if possible, as I'd sent a message a week ago and hadn't gotten a reply. Also, I would be working during business hours for the rest of the week. So this was my only chance. And I was having problems - my lower abdomen has been really hurting again.
The answering man was very nice, and asked me to hold. After several minutes, he asked if I could come into the clinic at 4:30 to see GI Dr's PA. By this time, it was 4:00... so I had just enough time. I talked to the PA, then GI Dr also came in.
So... he is very concerned with what's going on. He thinks that the abscess is not actually infected - it's not full of bacteria. He thinks that it is an autoimmune inflammatory reaction. He said that if it were infected, I would be dead - apparently you can't exactly live and walk around with infection in your belly for that long. ;)
The MRI, in addition to showing that the silly abscess is STILL present, also showed that the abscess is possibly connected to my uterus and other stuff, and that the surgical site where my J pouch used to me is possibly connecting with stuff down there, too.
GI doctor is going to get together with Dr. Sidekick, and using a special teeny tiny scope, they will go up my unhealed surgical site in my bottom and explore! ;) Sounds like fun to you, too? ;) Hopefully he can see what is going on - if I have UC/Crohn's disease inside, if the abscess is connected to where the J pouch used to be, where my organs are connecting, etc. He assured me that I will be asleep for this procedure. I reminded him that sedation doesn't work on me. He said, "Oh, yeah! Do you remember the time when you were awake the whole time I was scoping you?" Um... yes, I do. I was just loopy enough to talk foolishly the whole time, but not sedated enough to feel comfortable. I ended up giving my GI Dr driving directions from downtown Dallas to downtown Fort Worth because I thought he should go get bacon chocolate at Central Market for his pregnant wife who was craving salty and sweet things. Let's not do that again, please! ;) I know what drug works for me (propofol, incidentally the stuff that killed Michael Jackson) and he was amenable to that plan.
Then I got some disturbing speculation. When you consider my fistulas, abscess, weight loss, joint pain, low grade fevers, and fatigue... he thinks that this adds up to Crohn's disease, the sister disease of ulcerative colitis. UC happens only in the colon. If you take out the colon, you are considered cured. In my case, pouchitis came back in Twitchy, which was made out of my small intestine. This is very unusual. They took out Twitchy. So, in his mind, I should be 100% cured beyond the shadow of a doubt. Clearly, however, I'm not. Crohn's disease is like UC, but can cause inflammation anywhere in your digestive tract, from mouth to colon. It also commonly causes abscesses and fistulas. The bummer about this is that it could come back anywhere in my GI tract... and I'm already missing 7.5 feet of it. So that has the potential to be a horrible, horrible combination for nutrition and quality of life and things of that nature. But I'm not overly concerned - I'll explain in a later post, since this one is already epic in length, but, for several reasons, I don't think it's possible that I have Crohn's.
His plan is to see what the scope shows, then go from there... his speculation was that I may actually need Remicade or Humira to reduced the autoimmune inflammation in my body so that the fistulas, abscess, and my bottom have a chance to heal. His other concern remains that some J pouch or colon was left inside, and that is setting everything off and causing the bleeding. In that case, I would definitely need surgery. Any way you look at it, I will probably end up needing surgery or more hard core medications in the near future.
This was obviously hard to hear and something of a shock to me. After the scope, I will definitely be seeking a second opinion. This is just getting so out of hand, and I am not over-anxious to restart meds or go back to the operating room. I just need another perspective, a fresh pair of eyes, to look at me and my situation. If they agree with GI Dr, so much the better. If not... then I will be even more confused than I am now. ;) But I will trust God with all of that!
Please be in prayer for me and my family, as we try to pursue the wisest course of action. Please pray that I can get the scope done without any problems. Please pray that God will lead us to the right doctor for a second opinion (I already have a few doctors in mind, but we'll see). Please pray that my GI and Dr. Sidekick will look at all the information, stay in touch with me, and do the best they can! Finally... please pray for peace and no anxiety as I deal with all this. I don't need to think about the possibilities or what could happen... I just need to trust in a good God!
Although I still can't believe I'm really getting scoped AGAIN. ;)