New here. Refractory UC. Ugh!

I exercise moderate to heavy 5 days a week.

So I have three things I want to try first. Nicotine patches because I smoked for a short while, but quit a year before I got UC. I also have a really healthy potential donor for at home FMT. My idea there is to take antibiotics for a couple weeks, then shift to FMT, high fiber diet and VSL#3.

Yet another example of someone who exercises vigorously but still contracts IBD. There are so many of us here on this forum that I wonder if there is a cause and effect. Or perhaps we get IBD from the fillers and binders in the supplements that most gym people take. LoL

I like all 3 of the things you want to try first. I never tried the “big gun” meds that failed you but antibiotics (Flagyl) snuffed out my flare and put me into remission more than once. My only caveat is to recommend probiotics along with the antibiotics since the abx will destroy both the good and bad bacteria in your gut. You need the good bacteria to ensure that the bad guys don't return to overwhelm what's left.

One good probiotic to take while on antibiotics is Saccharomyces Boulardii. It is not a bacteria at all but a probiotic yeast meaning that it is immune from antibiotics. One disadvantage of antibiotics is that by destroying the good guys as well as the bad guys, some people have had opportunistic infections such as C Diff take over in their insides. S. Boulardii will help protect against that, but take other probiotics as well.

Give home FMT a try ..

Best wishes..

If you are still up for biologics, maybe you can try Xeljanz, which has not been approved yet for UC but is in phase 3 of clinical trials. My husband had tried all the other approved biologics etc without success, and was able to get Xeljanz prescribed off label and covered by insurance. Put him into full remission, and he could tell within a week or two.

My vote is for surgery. Try FMT first if you want but you've already tried so much and do appear refractory....

IamCurious said...
I exercise moderate to heavy 5 days a week.

So I have three things I want to try first. Nicotine patches because I smoked for a short while, but quit a year before I got UC. I also have a really healthy potential donor for at home FMT. My idea there is to take antibiotics for a couple weeks, then shift to FMT, high fiber diet and VSL#3.

Yet another example of someone who exercises vigorously but still contracts IBD. There are so many of us here on this forum that I wonder if there is a cause and effect. Or perhaps we get IBD from the fillers and binders in the supplements that most gym people take. LoL

I like all 3 of the things you want to try first. I never tried the “big gun” meds that failed you but antibiotics (Flagyl) snuffed out my flare and put me into remission more than once. My only caveat is to recommend probiotics along with the antibiotics since the abx will destroy both the good and bad bacteria in your gut. You need the good bacteria to ensure that the bad guys don't return to overwhelm what's left.

One good probiotic to take while on antibiotics is Saccharomyces Boulardii. It is not a bacteria at all but a probiotic yeast meaning that it is immune from antibiotics. One disadvantage of antibiotics is that by destroying the good guys as well as the bad guys, some people have had opportunistic infections such as C Diff take over in their insides. S. Boulardii will help protect against that, but take other probiotics as well.

Thanks for the advice. I am glad to hear you have had success with antibiotics and I think that is what I will be trying next. I'll give a look at S. Boulardii. I have a prescription for VSL #3 for 1 packet a day but i've been saving them up for my post-fmt plans so I can take 3 a day.

DBwithUC said...
The home FMT could be a winner. It is more for c-diff than for UC, but folks with refractory UC may have undetected infection. Doing abx first is consistent with latest research. The suggestion to also use probiotics sounds wise.

You might eliminate the iron. Unless you are anemic it is not urgently needed, and it can easily cause symptoms.

The research on nicotine is really about long time smokers, not short time. Not sure it would help you much.

IV steroids does not treat the IBD, it just controls symptoms while the anti-inflammatory meds get a foothold. Since you don't have a med that seems to work, it might not be a good plan. Or maybe you could do IV steroids and take loading dose for another try with a biological.

good luck

Is this true what you say about IV steroids? I am assuming it would also apply to oral steroids as well then. I was under the impression that steroids were anti-inflammatory/immunosuppressants.

ks1905 said...
Have you discussed Stelara with your GI? You might be able to get your insurance to approve it since you've failed the regular biologicals. Stelara was recently approved for CD.

It worked pretty quickly for me, much faster than the other biologicals that I've tried in the past.

Yeah Stelara is an option for me as well as Xeljanz I think. It's just that I have already taken 3 biologics in combination with Imuran and none of them worked. I was hesitant to take them in the first place and now after 3 failures I hate to keep pumping more and more potentially hazardous drugs into my system. But I haven't removed them from consideration yet.

notsosicklygirl said...
Sorry to hear it, I agree with the others, FT could be an option, also, like suzy and ks said, trial drugs... I didn't bother with any of those things myself. I knew I had hit a point where I wanted to be done with UC - I opted for surgery. i felt like even if I had luck with something, it was likely that my condition would flare again at some point in the future - and with my history, any remission would be short-lived. I had a couple that were a little over a year, maybe almost 2 with 6mp, but no long-term (5 year or anything). My only hope would be that something new would come available before my next flare in a year or two. I felt like that was too unpredictable, and I am not a dreamer, nor do i have luck on my side - I am very unlucky. I didn't want to live my life worried about drugs and what's in the pipeline, or when a flare up was going to happen. I wanted it in the past. The problem is, even with surgery, there are no guarantees. I think I've been pretty lucky for once in my life. Since surgery, I live life like normal. In fact, I barely think about UC. I eat what i want. I don't spend money on drugs or doctors. I don't go crazy taking supplements or blaming food on symptoms. I don't have "symptoms". Totally different perspective since surgery. Of course, I don't want to paint a perfect picture - I empty more often. I am not in the bathroom more than anyone else, I still go much less than I pee, but i often release the contents of my pouch when I am in there. Not every time, but a lot more than the 1 time I did my whole life prior to UC.

Thank you. Yeah I am really starting to give surgery more consideration again for the same reasons you did. I am just exhausted and want to be done. At the moment I don't feel like I can do anything big or somewhat risky in my life because my UC is holding me back. I did all sorts of stuff before UC and I am just a shell of my former self.

Do you have any complications from surgery? Pouchitis? Urgency? Dehydration?

ks1905 said...

iPoop said...
My vote is for surgery. Try FMT first if you want but you've already tried so much and do appear refractory....

I would tend to agree with you about this except that I think it depends on if he can find a very experienced CR surgeon who has performed hundreds of j-pouches that accepts his insurance (this can sometimes be tricky). Or you can go to almost any CR surgeon if you are only going for a permanent end ileo.

I'm happy with my surgeries even though I have chronic Pouchitis, it is so much better than living with UC.

I spoke with 2 surgeons at University of Washington Medical Center in Seattle. One general surgeon and then he referred me to the Colorectal surgeon. And he's done many, many j-pouches from what I understand. I am also leaning toward just a permanent ileo because I kind of want to avoid any j-pouch complications. It seems like the ileo would end my GI issues one and for all until the day I die. Thats my thinking at least.

I believe this belongs here

Josey67 said...
Had the sub total done 5 years ago ,and so wish I'd
Kept going a bit longer ,anyone in a similar situation

Still can't live with this thing on my stomach 😡

What type of work to you do? There can be some downsides to an ostomy, with difficulty finding a place to empty with a jpouch you can just hold it long if no bathroom is available.

If you work in a physical job or workout a lot there is a higher risk of developing a hernia with an ostomy than with a jpouch.

A very tiny percentage of people are allergic to ostomy supplies. If you have a lot of allergies than I'd consider getting tested or discussing it with a doctor.

Also, a permanent ostomy is a much bigger surgery than the temporary ostomy because they will remove the rectum and sew up your butt which takes a very long time to heal up properly and sitting during that time can be difficult.

I have chronic pouchitis and it's nothing like living with uc, it's much more manageable. Basically just loose stools.

One surgery and done is nice but if you're not 100% than you can just have the colectomy and live with it for up to 3 years and decide if you want them to make it permanent or move forward with a jpouch.

"If I have inflammation in the rectum, and a small stump is left over for the j-pouch, wouldn't I still have proctitis with the j-pouch?" Yes, as a result you can expell blood and mucus once or twice a day until your rectum is removed or the sphincter muscles and cuff used in creating a j-pouch.

"Is that what pouchitis is?" No, pouchitis is inflammation of the j-pouch which is madeup of the end of your small intestine. If it's a one time episode then it's a bacterial overgrowth or infection and easily cleared with antibiotics. Chronic, ongoing pouchitis is small intestinal inflammation and therefore means you actually have Crohn's disease and not ulcerative colitis. And despite surgery, you might need a maintenance medication to treat it.

iPoop said...
Chronic, ongoing pouchitis is small intestinal inflammation and therefore means you actually have Crohn's disease and not ulcerative colitis. And despite surgery, you might need a maintenance medication to treat it.

Oh wow it all makes sense now. When I had my colsult with the surgeon he had me do one of those Prometheus lab tests. He said it would help us find out if I was at risk for pouchitis or not. I didn't really understand at the time but now I do. The test came back as No for Crohn's and Yes for UC. So theoretically chronic pouchitis shouldn't be an issue.

actually, the test should give a little more info. Mine came back really high on UC, no indication of Crohn's, which is good, but it also said high likelihood of pouchitis. I think blksteeda had the same result & he has pouchitis. I've been lucky so far, but you can get it at any time - just because i've been lucky so far, doesn't mean i will be forever. Then at the same time, the surgery has been around a long time - and i am not sure about the test - people were having surgery and didn't get pouchitis before they had this test showing the likelihood of developing it. Many live out their lives normally... it's a risk and there are no guarantees, but my other option was sit home pooping myself until something worked for me, which may have been never. I felt like I had to do something...

My doctor did a technique where they strip the rectum of cells to help prevent cuffitis. Many doctors don't do it because it's more risky I guess - he's done 1000s of pouches so I was in good hands.