The state of the GI system address

November 11, 2010

I know there are fellow j-pouchers and/or Ulcerative Colitis (UC) sufferers who may visit this blog from time to time, and I thought this might be a good time to give an update on my GI situation. I also know a lot of folks who have UC want to know what life may be like for them if they choose to have surgery to have their colons removed. So here's a little of what life post j-pouch has been like for me:

A little background: I was first diagnosed with UC only after I had already been hospitalized for a few days due to constant (and I mean constant) bloody diarrhea and dehydration (March of 2008). I was pregnant at the time, which complicated my course of treatment. It was apparently a freak thing that the pregnancy brought on a genetic predisposition of such a severe case so quickly. I had never had UC symptoms prior to pregnancy and my symptoms started immediately after I became pregnant.

After nearly a month of hospitalization, we lost our daughter and she was still born at five months along on April 22, 2008. My symptoms improved slightly after her death, and I was discharged home on a very high dose of oral steroids. I returned to the hospital four days later as I was getting much worse. The diagnosis of Toxic Mega Colon was mentioned, though to this day I don't know for sure if I had been given the diagnosis or not. Another course of IV medication was attempted to no avail. It was decided that my colon needed to be removed.

I had a subtotal colectomy on May 8, 2008. A small portion of my colon was left along with my rectum. The hope at the time was that that remainder would heal and would function for me. It was a calculated risk that didn't pay off. My j-pouch was created in October of 2008 and the remainder of my colon was removed at that time. My rectum was left, again a calculated risk. A PIC line was put in at that time as well and I did nightly IV fluids at home to help with hydration. My PIC line got infected at one point and I ended up hospitalized as a result. (Sidebar: As is often the case, with the disease came some horrible joint pain that once the remainder of my colon was removed left completely.)

My diverted ostomy had many problems which led to leaking stool which led to a skin infection around my stoma. I could no longer get an ostomy bag to stick to my skin due to the infection and was hospitalized. They had already completed my barium scoping to see how the j-pouch was healing and it was healing well so they decided it would be okay to do the ileostomy takedown surgery early since the skin infection was causing so many problems (December 2008).

I immediately began having a lot of pain when I had bowel movements. I had to strain and could barely get anything out of my system. After some time of trying to figure out what was going on, we realized scar tissue had been forming around the anastamosis where my small intestine and rectum had been connected. The scar tissue was essentially closing up the passage for me to be able to evacuate stool. I began doing dilations on a weekly basis to reopen the passage way (basically tearing the scar tissue open, or as I like to describe it, literally "ripping me a new one"). Because my pouch was so far up inside me, self-dilating was not a safe option, nor was it a pain-free option. I had to be consciously sedated to have the procedure done each week.

My doctors wanted me to have surgery to rectify the situation and to remove my remaining rectum which was still (and is still) actively diseased. I did not want another surgery and was not willing to give up on the dilations finally "taking." After somewhere between 10-13 dilations (I lost count), it finally took. During one of the times I was being dilated (and also scoped), a biopsy was done and I was diagnosed with pouchitis for which I was prescribed Cipro which I continue to take on a maintenance level daily.

I have had one bowel obstruction which landed me in the hospital, but which resolved itself without requiring any surgery. "At least we'll know what's happening if that kind of pain ever hits again," Jeremy and I tried to reassure each other. Apparently bowel obstructions are something that happens more frequently to j-pouchers than to you lucky colon-people (though obviously it happens to people with colons too!).

So because I still have UC in my rectum, I do two enemas each night - mesalamine and hydrocortisone to treat it. When I do them regularly, I have no problems. The thing is, it wears on me psychologically to have to do enemas every night as I'm getting all comfy and sleepy in bed, so sometimes I give myself a break and skip them. I can actually skip them for a week or so before my UC symptoms start up again. But after that, I start seeing a little blood (not much) in my stool, and I start to feel pressure (kind of like I have to go to the bathroom really bad all the time) and pain. After a couple/few days back on the enemas I'm better. So it's a balance for me of which is worse.

My GI doctor says that the Cipro I take may actually be treating the UC and not pouchitis (though I think there is some difference of opinion in the medical community as to whether Cipro helps UC or not). What I know is when I stop taking the Cipro, I get incredibly painful, explosive gas - all day long.

I have to have a pouchoscopy (a colonoscopy for people without their colons) every year to check for pre-cancerous cells. The good thing though is that I don't have to drink the colonoscopy prep beverages that you colon-people have to drink.

Because of all the straining I did when I went to the bathroom after my surgeries, I have a hernia near the top of my incision. The hernia has gotten worse over time and I am scheduled to meet with my surgeon on December 2nd to decide if something needs to be done about it or not.

At this point, I have bowel movements eight to ten times a day. Much of the time my stools are like water. Hydration is therefore a challenge for me. I can many times improve their consistency by eating certain foods and avoiding others, and by taking Immodium. I take Immodium numerous times each day, which helps. There are certain foods that many j-pouchers avoid. I eat whatever I want, but do so knowing that there may be consequences such as watery stools, "butt burn" (the name speaks for itself), and increased frequency of stools.

For the most part, I'm used to my new lifestyle. I get weary of it sometimes, yes. But other times I remind myself that I'm alive, and that's what matters.

And that's the state of my GI system to date.