Proctosigmoiditis

Hello all, this is my first time posting but I come here often looking for tips and help from other people dealing with these issues. I was diagnosed with proctitis and "left-sided colitis" (turned or to be only in the sigmoid though after a second opinion) about 4 years ago. My original doctor immediately put me on 40mg of prednisone, gave me rowasa enemas, and lialda. After about a year of bumping my dosages up and down and no real sign off improvement, I went for a second opinion. I feel like this doctor really screwed me with the high doses of prednisone he kept pushing. Looking back, I wish I knew what I know now.

After a colonoscopy and revising my diagnosis to proctosigmoiditis, my new doctor and I started trying to get things under control. We found that lialda was causing some of my diarrhea issues and switched to delzicol. Same problems so we dropped the mesalamine drugs. I then tried Canasa suppositories which never really seemed to do much for me except turn my poo purple which was interesting to say the least.

Since my prior doctor had constantly pushed the prednisone, I've become steroid dependent. Anytime I get below 25mg, I flare. Talk about frustrating. My doctor put me on sulfasalazine and azathioprine in hopes that we could get me off the prednisone for good. No dice. about 6 months ago, I started taking remicade. I was very hopeful that it would be my miracle drug but I'm still having 8-12 bowel movements daily and having serious trouble with my morning commute. We just pushed my infusions up to every 6 weeks instead of every 8 hoping to finally get me into my first long remission since being diagnosed 4 years ago.

I'm currently flaring again after just having an infusion last week and being on 20 mg prednisone, 125 mg azathioprine, and 4g of sulfasalazine daily. Basically maxing out everything for my weight. My doctor isn't ready to call remicade a failure yet because I showed some improvement (while on prednisone so we're trying to cut the prednisone to see if the remicade can kick start remission. So far it's failing).

If things don't improve, he suggested we try another biologic. I'm not really interested in trying more medications at this point. I've been trying different meds for 4 years and haven't had any significant improvement so any new medicine seems like a pipe dream to me at this point. He said that another option is surgery which I'm totally ok with. He'd like to send me for a third opinion before we make any kind of decision on that front though.

I really like this doctor and he's been excellent at working with me but I'm thinking that it's time to get the surgery while I'm fairly strong than wait for another huge flare that takes my strength away. Does anyone have any suggestions on how to attack this? I'm just beyond frustrated and sick of the frequent urgent bowel movements and seeing a murder scene in my toilet every day.

If I were in your shoes, I'd also be consulting a surgeon, but at the same time, would try another biologic. It'll take a while to get in to see the surgeon and schedule surgery, and in that time, another biologic might work.

Thanks for the response.

1. I get tested for C-Diff every time I start a flare-up and have never had it (thank God)

2. I took VSL #3 for about 18 months and it didn't seem to help at all to be honest. I've also seen a nutritionist and tried changing my diet but never had much luck with any of that. I tried the SCD diet for a few months and after going through more or less withdrawal, it just continued to get worse for me.

3. I'm thinking the sulfasalazine is actually helping a bit because we cut back my dose at one point and it definitely made my symptoms worse. That might be the one thing besides prednisone that is almost helpful so far.

4. I've had labs done to rule out Crohns and my disease has been very contained to just the sigmoid and proctor/rectum. My doctor said he's never seen anything like it when he did the colonoscopy. There was a defined line where the inflammation stops. Quite odd.

5. Entyvio is the other biologic that he was considering if remicade does fail. I'm just getting to the point where I want to rid myself of this rather than try to treat the symptoms. And I definitely want off of the prednisone but I just cannot complete a taper without going back into a flare.

Again thanks for the response!

Do you notice any foods that make you worse? Personally, I think pulling a diet out of thin air is the wrong way to go, although many of us have problems with lactose and/or gluten. After investigating the foods that made me worse I discovered that I had an intolerance to high histamine foods. Many UC'rs are low on the enzyme DAO, which helps metabolize dietary histamines. By eliminating some high histamine foods and taking DAO supplements my UC has gotten much better and I now lead an almost normal life. Fruitgirl had a good idea to try another biologic while starting the surgery process. If the biologic starts working you just cancel the surgery. If not, you get it over with and get on with your life.

You could get a j-pouch as the end result of a 3-step surgery process, rather than a permanent end-ileostomy (what you call a colostomy bag). Essentially, with a j-pouch, they remove the large intestine, make a pouch out of the end of small intestine, and attach it to your rectum. The benefit is no bag. You poop as you do now.

As you're on steroids a 3-step is the likely process that they'd follow, and you'd have temporary bag. Without steroids, it can be a 2-step process.

Try Entyvio, it got me off the Prednisone.
I have had 4 infusions with no side effects .
It also cut down my BMS to 1or 2 a day with well formed stools.
It's a life saver for me .
I also was able to put weight back on my skinny frame.
I put on 15 Lbs much needed weight am now at 110Lbs, I am still thin but better than 95 Lbs on a 5 ft 6 body !!

No way the risk of pouchitis is 50%, and no way the risk of finding out you have Crohns after surgery is 20%. You must have misunderstood your GI.