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I've been gone a while. Sad to be back but glad to be among friends (m)

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Ulcerative Colitis
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Posted 2/24/2017 5:29 PM (GMT 0)
I had a heck of a good run with a 4 year remission. That ended a couple of years ago (around the time I took a healingwell break). My IBD returned slowly and maliciously in a sneak attack and I finally had another scope last summer. I knew I had rectal inflammation and had been treating it with Canasa, but my GI wanted to see what was going on.

He found inflammation throughout the colon. None of it was particularly bad, but he said the pathology showed "microscopic inflammation" everywhere.

He took zero biopsies in the TI which really, really pissed me off. I've had inflammation there before but because he couldn't SEE any he took zero samples. He also couldn't see any inflammation past the splenic flexure but he took those biopsies, thank goodness.

Anyway. He prescribed Uceris and thought I'd need a month to feel better and then a couple of weeks to taper. That was 6+ months ago. I cannot get off Uceris without symptoms returning.

Because I've never been that ill I have never seriously considered stepping up the meds. I really don't want to be on Uceris, but I don't have any steroid side effects and so far it seems to be effective (as long as I take it). The worst things have gotten in this flare is for me to have pretty bad upper GI discomfort, diarrhea and some mucous. I have seen zero blood.

Suggestions?
Posted 2/24/2017 5:56 PM (GMT 0)
Hi....sucks you're back! 😐

Have you had stool samples done? And are you on probiotics?

What is the reason you switched from Pentasa to Colazal?

q
Posted 2/24/2017 6:31 PM (GMT 0)
I gave up Pentasa after my ears started ringing. That was a few months after I went GF. My guess is that I suddenly started absorbing too much of the salycilates.

I'm not taking any probiotics. I have a hard time believing they do anything except cost $. But I do eat yogurt a couple of times a week!

I haven't had any stool samples done. Like occult blood? Or looking for pathogens?
Posted 2/24/2017 6:34 PM (GMT 0)
Welcome back Kaz!

You once said that going gluten-free back in 2011 has really helped you. But if you are like many of us as we get older there can be more foods that get added onto our personal verboten list. Maybe you should try a food diary to see if you need to avoid other foods besides gluten.
Posted 2/24/2017 6:43 PM (GMT 0)
glad you're back - sorry for the reason why sad

i agree with IAC - if you have seen results from eliminating one food, it's probably time to look at other possibilities - as i'm sure you know, i didn't find the way to a happy gut till i got rid of all grains -

certainly look at adding some fermented foods if you're not already - gotta fix that gut -

good luck - and stick around for a bit smile
Posted 2/24/2017 7:10 PM (GMT 0)
I did pay attention to eating fermented foods for a while at the very beginning of this flare, well I guess that wasn't the secret.

For all of my life I've pretty much eaten what it seems like I want. I've tried being vegetarian and stuck that out for a few years before I developed intense cravings for red meat. Now I eat red meat about twice a month and that seems about right according to my brain. Fermented foods, including yogurt, which I have enjoyed for decades, are just not making the cut in terms of desire. I just don't want to eat them. At all.

I suppose I could eliminate more grains, but all that's left are oats, rice and corn, which some occasional forays into quinoa and teff. Frankly I have a hard time seeing how those can cause inflammation, but I know there are some people here who feel strongly that these are culprits for them. I'll consider it, thanks.
Posted 2/25/2017 12:21 AM (GMT 0)
Welcome back kazbern but sorry to hear you're flaring. It's time to consider immunomodulators at just a low dose. I was diagnosed with osteopenia recently due to steroids. I'd try not to be on even a delayed release one that long...
Posted 2/25/2017 4:51 PM (GMT 0)
Can't say I have great evidence for improving but I did when at my worse cut out all supplements. B vit supplements for instance were a culprit for me which is the last thing I expected. Psyllium also was too rough for me. So one potential area to try is to cut out all supplements for a month and then add back in one by one?
Posted 2/25/2017 4:57 PM (GMT 0)
i agree with LL - sometimes it's best to re-boot -
Posted 2/26/2017 8:41 PM (GMT 0)
Thanks for the responses, LL and soynomore. My signature isn't quite up to date - I haven't been able to tolerate psyllium for about a year, folic acid went by the wayside a while back too. I still do take flax seed oil.
Posted 2/27/2017 2:56 PM (GMT 0)
Kaz so sorry to hear you're not feeling well. Hopefully it's not much longer. I agree with iPoop. The uceris even tho a different steroid is still a steroid. Have you tried a steroid enema to maybe help taper the uceris? Then try and taper those? You may need a new stronger med. I'm so sorry. I know no one wants to do it but for me at least once I got it all under control I realized how much better I felt. I tried everything I could before moving up the ladder.
Posted 2/28/2017 3:15 AM (GMT 0)
Where are you again? It sounds like you need to change gastros RE the biopsy shortfall from last c-scope. His explanation for skipping sounds totally lame-- or did he think you have Crohn's? Best wishes for you to get back on the remission track soon! / Old Hat (36 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 2/28/2017 2:03 PM (GMT 0)

the OP said...
Frankly I have a hard time seeing how those can cause inflammation

Some foods contain large amounts of antinutrients such as phytates and lectins that can damage your digestive lining to cause inflammation. This can be aggravated by dysbiosis, an imbalance between beneficial and harmful species of bacteria in your gut. Once your protective intestinal lining is shredded the bad bacteria can invade to cause 'leaky gut' which activates your immune system.

IMO everyone should keep a food diary. This is from NIH's PubMed:

/www.ncbi.nlm.nih.gov/pmc/articles/PMC1115436/
Lectins are carbohydrate binding proteins present in most plants, especially seeds and tubers like cereals, potatoes, and beans...
in the past two decades we have realised that many lectins are (a) toxic, inflammatory, or both; (b) resistant to cooking and digestive enzymes; and (c) present in much of our food.2 It is thus no surprise that they sometimes cause “food poisoning...”

Among the effects observed in the small intestine of lectin fed rodents is stripping away of the mucous coat to expose naked mucosa and overgrowth of the mucosa by abnormal bacteria and protozoa...

Many lectins are powerful allergens, and prohevein, the principal allergen of rubber latex, is one. It has been engineered into transgenic tomatoes for its fungistatic properties, so we can expect an outbreak of tomato allergy in the near future among latex sensitive individuals...
Posted 2/28/2017 4:15 PM (GMT 0)
I am all about enemas, and in fact asked my GI for Rowasa but he preferred I stick with Canasa. Canasa worked well for the proctitis, but the fact that I had microscopic colitis throughout my bowel is what drove him to recommend Uceris.

I will schedule a follow-up with him to discuss. I think he's probably going to recommend I ditch the generic balsalazide and try Lialda. It seems that people on this board like Lialda more than other ASAs, so maybe it's worth the $$$. I also recall from this board that ASAs are not that effective, really, so I'm not that enthused. But perhaps it will keep me from needing an immune modulator.

I agree that his skipping the TI biopsies is almost unforgivable. He's getting old and will probably retire soon. This might be an opportunity for me to establish a relationship with a new GI. I'm just feeling overwhelmed by the idea of looking for a new doc and moving my treatment. BUT I have a new GP and maybe she will have some recommendations. This conversation just convinced me.
Posted 2/28/2017 7:59 PM (GMT 0)

kazbern said...
I gave up Pentasa after my ears started ringing. That was a few months after I went GF. My guess is that I suddenly started absorbing too much of the salicylates.

I'm not taking any probiotics. I have a hard time believing they do anything except cost $. But I do eat yogurt a couple of times a week!

I haven't had any stool samples done. Like occult blood? Or looking for pathogens?

You are bang on!! I had to stop Pentasa, I now have a problem with aspirin. The salicylates in the drug then went on to cause me problems with salicylates in food. And, one of the worse symptoms is ear ringing!

Sorry you are back, but you are amongst friends!
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