Abby's Update

by on Monday, January 26, 2009 20:40
This entry is filed under: updates

So for those of you who read my first blog entry on this website, here”s my update.

On Friday, January 16, 2009 I went in for a pouchoscopy to see what was up with me having such difficulty having bowel movements. I had to push so hard to go to the bathroom that I felt nauseous for like an hour afterward. There was also some blood in my stool. My doctor wanted to do the pouchoscopy to see if either the opening to my pouch wasn”t dilating, or if I had already developed pouchitis.

I didn”t have to do any prep for the pouchoscopy. They had me change into a hospital gown, hooked up some heart monitors, and started an IV. They wheeled me into the procedure room and started the good drugs. It felt like a half a bottle of wine hit me in just a few seconds. I was with it enough to see what was going on on the screen. The opening to my pouch wasn”t dilating. My doctor was able to dilate it during the procedure. I didn”t really feel anything (that I remember anyway).

I went home after the procedure and took about a three hour nap. That day I was able to have bowel movements without much trouble, but then the weekend came and things got rough again – but not as rough as they had been before. I called my doctor on Monday and told her my status. She had me come in again on Wednesday to check me out.

At my appointment on Wednesday the 21st she did a rectal online casino exam in the office (bend over, here”s the lubrication, fingers in, pushing around – ouch!). She said that because I still have my rectum and 5 cm of mucosa lining, the opening to my pouch is too high up for me to learn how to do self-dilations. She said she read that 50-60% of people who have problems with the opening to their J-Pouch dilating will eventually be able to dilate after repeated dilations and can therefore avoid surgery to revise the j-pouch. Because it hurt too much to do in her office without drugs, we are now scheduling weekly out-patient dilations at the hospital. I”m fine with that. She sounded like she”s willing to do this for months to see if it works and we can avoid surgery. Surgery would in the very least mean another temporary ileostomy and in the worst case would mean a permanent ileostomy if the integrity of the pouch couldn”t be kept during the surgery.

So for now I”m going to the hospital every Friday morning to be scoped and dilated. Thank God for the good drugs!!

These posts might also help out:

You can skip to the end and leave a response. Pinging is currently not allowed.

3 Responses to “Abby's Update”

  1. avatar

    Eric says:

    January 26th, 2009 at 9:48 pm

    Sorry to hear about your situation, Abby. I’m glad you used the term “pouchoscopy”, though. I just got into a little trifle with my wife (who is an M.D.) about the term. She thinks it’s stupid, and I got really offended. Even though we don’t have colons (well, most of us still have a few cm of colon, actually), having terminology to speak of these things is really important. It is wrong to say colonoscopy, and while it may not be medically correct (or medically anything) to say pouchoscopy, it is a useful term. In fact, I just noticed it isn’t on Wikipedia. I think I’ll add it and see what happens. Stay strong!

    [Reply]

  2. avatar

    Mark says:

    January 27th, 2009 at 7:45 pm

    Abby, that is not a fun situation you are dealing with right now. I know on jpouch.org there have been some posters (Micheladfina, and others) who have needed the dilation done by the surgeon because they can’t do it themselves. You may find some encouraging words there from others who have been through this.

    [Reply]

  3. avatar

    WholeHeartAndSoul says:

    January 27th, 2009 at 8:35 pm

    Thanks for the tip Mark. I’ve been to some of the different websites, including jpouch.org, but I think I’m not looking in the right places or something. I have felt very alone in this experience. (My husband has searched websites trying to find someone who could relate for me too!) I’ll keep looking because it would be so helpful to “talk” with someone who is going through the same thing. I greatly appreciate your suggestion. Abby

    [Reply]

Leave a Reply