Dear ep,
I'm moved to write back to you more than any other mail here. My case is almost identical to yours, and I haven't "met" anyone else so far with CU who also had the stricture. I had CU diagnosed in 1996, and not very much happened until 2005, when I had a flare-up for about 9 months. I took an asa5 and it went away. The next flare started in fall of 2009. I was having pencil stools as well. The coloscopy couldn#t be carried out because mycolon was not passable. I left that GI (for other reasons, I found him to be not a good doctor) and went to a very experienced, specialized GI at the GI clinic at a big univrsity hospital. They performed the coloscopy with a children's endoscope. The upshot was, that I have mild flares that never really go away, and a stricture at about 20 cm.
Strictures are very, veryy unusual with CU. They usually indicate a malignant tumor. If they don't find any cancer in the biopsies, they want to keep an eye on it. In August, 2010, my doctor had my stricture dilated with the caveat that it is only going to buy time. The stricture could become cancerous at any time. It is a fibrosis, those are not first-class cells. But not only that: it can close down at any time, you'd have a dangerous ileus and have to be rushed to the hospital for an emergency colectomy - and that by an ER surgeon who may not have so much experience with colectomies. The dilation in August worked fine. But then I flared again in January and it as impossible to examine me past the stricture again. They managed to dilate it a second time one week later. I have to add at this time that I was doing another round or prednison and it was not really working. I also started taking azathioprin, which was not working, and all this was pointing to
treatng the CU inflammation with some nuclear war level immune suppressors and living under threat of cancer and/or sudden ileus at the same time. My doctor was using sterner and sterner tones with me to tell me how important he thought it as for me to have the collectomy. In March I made the decision to have the operation, forthe reasons that I knew I was getting much worse and not better, the flares were going to ruin my life, and I knew that the stricture would keep closing down. We could keep dilating it, but eventually it would shut down completely and then I'd be in very deep trouble.
I scheduled for three weeks later. The fear I went through over those weeks was horrendous. Panic attacks, fits of weeping at all times of the day. No one could understand what I was going through. The actual experience was no where near so bad as the fear I went through. But what I have been through emotionally since losing my large intestine and having a stoma, deep inside, the feelings I cannot even find the words for, has been undescribable. Its now been 4 months since the protocolectomy. I will have a 2nd OP in December to form the pouch, whch will be conneced one month later in January, and I won't have to have this bag anymore. The reasons I have to wait so long between 1st and 2nd OP is simply that I was taking cortisone at the time of the first one, then started a new job in June, and so I want to get through my six months job probabtion before taking off on sick leave.
Don't forget we're here and I'm here, I know about the stricture business.