Ulcerative colitis with stricture - what would you do?

Hi I'm new to the forum and looking for information, suggestions/advice, similar stories.

I am a 45 yr old female and was diagnosed with UC around '99-'00 after being on several antibiotics for adult acne which got worse after having our two daughters. Flares early on were dealt with by 5-ASA meds and enemas. Inflammation has never gone past 45cm.

I am not a fan of daily medication and prefer to take stuff only when I have a flare. I follow an organic and very healthy diet, incl gluten free (mostly SCD type but I do have non-GMO rice & corn at times). I currently use canasa suppositories only if needed, take lots of VSL3 daily, and a few key supplements from my naturopath. If a flare doesn't subside in a few weeks then I go to liquids and that usually kicks it.

One terrible flare that started in late Dec 2009 brought on by some kind of horomonal imbalance, which lead to fibrocystic breast lumps, and a possible food poisoning episode, AND simultaneously picking up the intestinal flu in early Jan 2010 lead to hospitalization in early Feb 2010. Subsequent colonoscopy (Apr 2010) found a stricture at about 45cm, roughly 15mm in diameter. It is passable with pediatric scope. Recent colonoscopy in Nov 2012 showed stricture unchanged, though my GI doc chose to use endoscopic scope for greater ease.

Current GI doc has "washed his hands" of me and sent me to UCI Med Ctr now. Says all he can do is keep doing colonoscopies and checking for cancer. He says with a stricture there are too many risks and he wants the specialists to work with me. Went to see the specialists at UCI and they have said surgery is my only option and I should choose between permanent ileostomy or J-pouch. Yikes!! New GI doc said she's more concerned about the fact that I have a stricture than that I have left-sided UC. She says strictures are "breeding grounds" for cancer.

My naturopath thought fecal transplant could be an option but from what I've read it's better suited for dealing with UC and not necessarily the stricture aspect.

I have BMs 2x daily, no problems, no bleeding, no pain, fully formed, etc. UCI doc wants me to keep taking canasa suppositories daily until she does her own colonscopy in Feb 2013 to see the stricture. She'll have a surgeon present to assess also. I guess I'll be able to make better decisions after the Feb colonoscopy but really wanted to hear from the forum too.

1. Anyone else out there with a similar situation?
2. Anyone have a stricture dilation with success? What were your particulars.
3. Anyone have to have surgery? If so, what did you choose and why?

Thanks for your suggestions/advice!!

Where's your stricture? From my understanding, and I could be very wrong, this is usually associated with Crohn's. I wouldn't go the surgery route without investigating this further.

Thank you for your reply! That's kinda what I was thinking. I know the docs will say "well we can't really get to the what's behind / underneath the stricture and so we might miss cancer if it's growing there." Admittedly, the biopsy process is random.

Hopefully someone with a stricture will post their story. One gal I was reading about in another part of the forum had a very similar situation to mine (although her was Crohns) and went in for stricture dilations. She ended up with a permanent ileostomy due to the GI perforating her colon during the procedure. This is exactly the nightmare I'm hoping to avoid.

Thanks again for your reply.

I know you're not going to like this but my take on your disease is that your hatred for taking meds on a daily basis has put you into this predicament. Is having surgery worth the price of only taking meds during flares only? Only you can answer that but maybe you should try getting yourself back into remission and then continue taking daily meds, if you are comfortable doing it. You just might be able to save that colon.

to garylouisville:

i thank you for your thoughts. it is something i wrestle with for sure. i am in remission and typically have stayed that way for 2-3 years at a time. then i have a flare and it gets under control. the only time it was so bad was in 2010.

3 different docs have told me taking oral meds doesn't help or "reach" where my UC is so low in the colon/rectum. that's why they have me use suppositories and/or enemas. i have taken various meds in the past and it didn't seem to help the flares. only when switching to other more local means did things calm down.

i guess i find myself stunned at the rush to cut me apart. i'm trying to learn what i can about options such as dilation or stricturplasty before taking such a drastic step. any other thoughts are certainly appreciated.

This is a 4 year old thread. the OP does not even post here any more.