Practically at my wit's end with UC

just curious = who is making decision as far as your treatment, you or your docs ?

are you still using sulfasalizine, turmeric, vit. D, zinc, fish oil ?

describe your urgency and number of trips to the toilet -

Can you make an appointment with a colorectal surgeon and get some ideas of what surgery entails? A consultation does not in any way make you committed to having surgery, it just gives you information. If you have PPO insurance you should be able to go to whatever doctor you want. With HMO, it gets tricky because you need the referral.

You could also pursue trials, as iPoop said, but it just depends what you want. I got to a point where it didn't make sense to keep fighting every moment of my life, and I wanted to move on. Surgery has worked out for me, but the results do vary. Do a lot of research on the process and the results, and see if you think it's right for you. I also agree with iPoop, the amount of inflammation doesn't really matter. What matters is how much it impacts your life & the realization that the small area could become a big area at any time. I always hated the idea of having something that could "flare up" at any moment. I am so much better off since surgery, more active, less limited, more fun - eat well, off drugs, no medical expenses. Have you had stool tests recently?

Nostalgic Cowboy said...
I have a question that I'm curious to get your insight on. In the past, I've had elevated CRP. It seems to have corresponded pretty well with my inflammation in the past. However, I had a normal CRP, but my scope today revealed moderate to severe inflammation in my sigmoid. I guess this is just an example of how CRP can be a bit finicky/inaccurate? I wonder if CRP is elevated in cases such as proctitis where inflammation is limited to a fairly small area. This disease is definitely frustrating, but can be interesting (in a frustrating way).

You could order a fecal calprotectin stool test, which is more accurate and specific to intestinal-inflammation.

You should order a stool test for pathogeons. Make sure nasties like C Diff haven't snuck up on you within the last year since your last test. We're more prone to c diff.

If you think your case is a bit unorthadox/unusual have you considered going outside the box and throwing something like antibiotics or something at it? Some have had luck with that route...

You could throw stelara or xeljanz at it, via clinical trial or off-label...

notsosicklygirl said...
You definitely should get an upper of some sort too, an MRE or endoscope. If your prometheus was inconsistent with UC, and the biopsies aren't solid evidence, then surgery is much more risky. In my case, everything always came back 100% consistent with UC. I would be very cautious with considering surgery with what you heard today. Of course, the biopsies will tell a story, so wait and see, and request stool tests for pathogens and a calprotectin if you can. Work on getting the upper to see if there's any involvement up there. Best to have all your ducks in a row, that way you know exactly what you options are, whether it's more rx treatment options, alternatives, or surgical.

How have you responded to the Rifixamin? Any improvement? Did you ever use prednisone or Uceris? Any improvement? Since it was a sig scope, he can only see a part, was it all inflamed, or areas? how much was effected? Was it mild/moderate/severe? Are you using any rectal meds? Stelara + MTX sounds like Crohn's treatment options. Stelara isn't available for UC, except through trials.

Thanks, notsosicklygirl. That makes sense to me. I’ll definitely inquire about looking at the small intestine to get a better picture of what’s going on.

Yes, I should say that this was my first scope with this doc. I’ve had three colonoscopies and one flex sig done by three different docs in the past 2.5 years and they were all very certain I had UC and not Crohns. My inflammation has been consistent—from rectum to sigmoid. This new doc didn’t come out and say it’s crohn’s, but he said it shows signs of crohns. I’m not sure what to think of that and I certainly hope that’s not the case. I think part of his reasoning for that is just how entirely unresponsive I’ve been to all meds. I believe he mentioned something about a possible loss of striatons too, so we’ll see what the biopsies show. If it were crohns I feel like I would be in worse shape now, considering I haven’t been on any drug that’s helped me and my inflammation has been contained to the left side of my colon. I wasn’t on any drugs before the xifaxan and the inflammation didn’t get any worse. Of course, that might just be wishful thinking.

He also thinks the Prometheus test result is odd. I think none of the inflammation markers suggested IBD. The test categorizes serology, genetic and inflammation results into four larger groups I believe: (1) pattern consistent with crohns (2) pattern consistent with uc (3) pattern consistent with IBD, but inconclusive for crohns vs. uc and (4) pattern not consistent with uc. I had the fourth result, which essentially just further muddled things.

No improvement on the xifaxan. I guess I still have a few days left, so anything is possible. But it looks like I’m not going to get a response from it. I tried pred almost 2 years ago and it lowered my CRP from elevated levels to within the normal range. I suppose the pred worked to reduce the inflammation, but I felt my worst once I tapered off and rebounded in a major way. After that I pretty much vowed to never go on pred again unless I’m in the hospital/on the brink of death. I haven’t tried uceris, but I have tried cortisone enemas. I wouldn’t be opposed to trying uceris, but I’m not sure if I’d have a response after not really getting much better on the cortenemas. Have you seen any difference in response/efficacy between the two?

I had a colonoscopy done this past July and it showed the inflammation was confined to the sigmoid and rectum. The flex sig flex today showed consistent moderate to severe inflammation up until the sigmoid and stopped a little short of the transverse colon. The extent of my inflammation hasn’t changed since January 2016.

No rectal meds right now. I’ve been on those for a decent length of time in the past with no response. I wouldn’t be opposed to throwing those back in the arsenal, but my doc seems skeptical that they would be of any benefit given my lack of response to them in the past. I’ll have to see what my doc say when he follows up with me after getting the biopsy results back. He did say he wanted to do methotrexate rather than a thiopurine, bc he’s seen that methotrexate has worked for some when nothing else has. I’m not sure how he would prescribe the stelara to me—whether it would be explicitly for crohn’s or indeterminate IBD. He didn’t come out and say it’s Crohn’s, but he said he wants to essentially approach this differently, since nothing else has worked. I’ll say that I really appreciate his critical thinking and willingness to think outside the box. He definitely seems to be doing all he can for me. I know some of my doctors in the past would have been unwilling to prescribe the xifaxan.

So we’ll see what the results show. I’ll ask about those stool tests too. I do sort of wonder if this might all be pathogenic somehow. I mean the biopsies have all indicated chronic inflammation, but if i had some pathogen inciting inflammation for an extended period of time, then that would also show chronic inflammation too, no?

Anyways, lots of things to consider here. I really appreciate and value your input. It’s so great to hear from someone who has dealt with this first hand and has a bunch of knowledge on it too

notsosicklygirl said...
I don't think Crohn's is necessarily worse so far as symptoms go. it's similar to UC, as in, some people have mild cases, some moderate, some severe. I know our forum poster NiceCupofTea, has Crohn's and it's been fairly moderate/severe, but she has a brother with Crohn's and his is quite mild, it doesn't impact his life much at all in comparison. I hope it's not Crohn's, or UC, I hope it's something else and it goes away forever, but don't think the worst whatever the case. The calprotectin stool test may be telling. It tells you specifically about inflammation in stool. That coupled with a stool test for pathogens should tell you if there's inflammation & whether it's due to a pathogen. If there's inflammation and no pathogen, then where it is coming from? What happened with your FMT? Did you have good luck. I really wish you could get to the bottom of this so you can find something that works for you. Do you notice diet being of benefit? how about the probiotics? Any significant improvement from them?

Thanks! Yeah I really hope I could find some answers. At this point, I almost want to stop going to the doctor and just continue living life and pretend I don't have anything wrong haha.

If I had to choose between UC and Crohn's, I'd definitely prefer UC. I guess I always had this thought that if I can't get the UC in remission, I could always remove the ol' colon and move on. The scope I had today showed moderate to severe inflammation. Would the calprotectin stool test provide further information about the inflammation?

In regard to the FMT I did earlier this year, I had my donor tested for all the recommended pathogens and everything was fine there. I don't think my donor was the best candidate for this however. The stool wasn't the best quality in terms of the bristol stool chart. Still used it bc I thought I didn't have much to lose at this point. But it didn't really help. Did it five times a week for at least a couple of weeks. I think I went three weeks, but I can't exactly remember. I believe I could have had success with this if I had a more suitable donor.

I will say that I went on a date earlier this year and afterward my stool was the most formed it's been since UC--I think it even resembled what it was pre-UC. I was going about 1 - 2 times a day with well-formed stool afterwards, but that only lasted for 3 - 4 days. I always wonder if that was just coincidental or if my UC was somehow ameliorated through swapping microbiota with my date. I know how ridiculous that must sound, but I swear it's true and it just seems too coincidental to be attributable to just random chance. This is also one of the reasons why I wonder if this inflammation in my colon is still somehow caused by some undetected pathogen. I would think that if it were some untamed pathogen, then I would have eventually regressed and become pretty sick. So maybe not a pathogen, but just dysbiosis related? I dunno I suppose stranger things have happened.

I tried VSL #3 for a month--no improvement there. To be fair, I should probably try it out longer than a month, but it was so expensive and I had just felt a little skeptical it was going to work. I'm currently on s. boulardii bc of the rifaximin. I know the rifaximin isn't supposed to be systemic, but I didn't want to take any chances and thought the s. boulardii would lessen any potential susceptibility of catching an opportunistic bug while on the rifaximin.

Best diet modification for me seemed to resemble AIP paleo. I've added in white potatoes, quinoa, green beans since being on the most strict version of that. I've thought about cutting those items out again. The worst offenders for me are eggs, wheat, dairy, sugar, alcohol, soy, peanuts. If I consume any of those, I pretty much expect to pay for it with a little bit of bleeding.

You asked about Uceris vs prednisone. When I had a super severe flare, I was on prednisone for 4 months and it didn't do anything for me, I just kept bleeding and having fevers. Starting Remicade was the only thing that made me somewhat better. Steroid enemas have never seemed to do much for my bleeding either, but I also have a really hard time holding them in for very long even after years of using them, so maybe I never got the full effect from them.
But Uceris made a HUGE difference when I had a flare while on Remicade. I didn't realize when I started Uceris that the FDA only allows you to take it for I think 3 months at a time, so I was really bummed when I had to stop taking it because I felt great while on it. However, once I found out it was a steroid I was happy to stop it because after talking to my orthopedist about what corticosteroids due to bones, I swore to myself I would never take pred or uceris again.
Please don't make the mistake I did and pretend you don't have this disease. I know you're kidding but seriously, just don't. My UC was just in the rectum when it was diagnosed in 1999 and I pretty much ignored it and didn't see the doctor as often as I should have. I was doing ok until I had to have a surgery 2 years ago and then all hell broke loose and I feel like if I had just done everything I could have earlier on, I wouldn't have been such a ticking time bomb when it came to the surgery.
Best of luck to you. I love how curious you are about this disease. I think it's going to help you a lot! I'm also inspired by the fact that you have been to 4 different GIs. Great idea.

seems to me since you do respond to diet changes, it might be just matter of tweaking things a bit - what exactly are you eating every day ?

and forgive me if i've said this before, but DITCH THE FISH OIL ! (if you haven't tried that already )

oh, and per the link i posted the other day, how much exercise are you getting ?

"What’s the reason for ditching the fish oil? "


same reason i carry my smith & wesson > you just never know ~

and many folks find it a problem - so why not give it a break for a month and see if it helps - don't think it will hurt you - do you ?

Since you seem to only respond to diet modification, why not take it a step further and go full on SCD, employing the stages? It might take weeks, or months, before it works, if it does work. It is rather laborious preparing enough food to keep yourself fed, especially if you work full time.

In addition while in the early stages the diet is very limited. Like chicken and carrots and not much else to start. The full diet is not too restrictive, but it can take awhile to heal enough to tolerate all legal foods, and it is still a lot of work. I lost weight the first few weeks, but then I seemed to heal quite a bit, and I could tolerate a wider range of food. I actually started to gain a bunch of weight. I went from diarrhea to being kinda constipated, which was weird.

You can combine GAPS SCD and FODMAPS to find something that works for you. You've tried pretty much everything else short of surgery. The cult like ultra-rigid aspect of these diets is a major turn off for me, but I can understand people being such fervent believers when diet changes work for them where other methods failed.