chron's or pouchitis?

I have inflammation in my Pouch which we have been treating for 20 years. For years they could not decide whether it was Crohn's or Pouchitis, despite numerous diagnostic tests including Prometheus Blood Tests, CT Enterography, MRI Enterography. My current GI finally concluded it's likely pouchitis, even though I do have inflammation in my ileum above the pouch. The reason why is that the pattern of inflammation is suggestive of backwash stool from my pouch.

He thinks the main problem causing all of this is small intestine bacterial overgrowth (SIBO). It is best controlled through exactly what you are doing, dietary modification (elimination of carbs and sugars or at least reduction of them) and probiotics, and antibiotics if diet and probiotics don't work.

The diagnosis is irrelevant, what matters is how you respond to treatments which are basically all the same regardless of what label you slap on it. They basically gave up on diagnosing me and concentrated on finding proper treatment. That is what you need to do. It's inflammation and it needs to be treated.

Ulcerations are typical with pouchitis and I have had them on every scope for 20 years running. Your symptoms sound similar to mine and you may also benefit from taking antibiotics.

Ditto what ct barrister has said. I have ulcers in my distal pouch that also bleed. I take canasa as needed and cipro at minimal dose possible. I also have issues with bacterial overgrowth as my anastomoses is narrowed from scarring and repeat inflammation. I do not bleed when passing stools but if I insert a Canasa up above the anastomoses
I often see blood on the tissue after. I have had my pouch for almost four years and this is ongoing.

yes i agree with jeans and ct barrister.. do not panic..after a while you get that its just the treatment and which works..labels mean nothing..crazy but the way it is with pouch life..

Thank you, guys..trying not to panic....but when I think of the times I had UC, I just don't ever ever want to go back there again. Trying to stay optimistic but having a hard time. Writing on here really helps.

Does white mucous come out with pouchitis? When I had UC, I used to have a lot of mucous come out and they say mucous is supposed to come out of your bum but with me, it always used to come out from my vagina (sorry for the tmi...). I never had mucous coming out with a j-pouch, but just today, after I had a BM, a lot of mucous came out of my vagina after I strained to push out stool.

On a more positive note, I was having bad pain around the tail-end near my bum but it seems that pain has subsided a lot. I hear people with pouchitis get pain there and I was definitely getting it.

I'm so craving for coffee right now - used to drink one cup a day and I had stopped about 12 days ago.

Thank you for telling me about staying away from carbs and sugars. I love pastries and I had been eating them every day and wonder if that's what may have caused all this. Does yeast play a role in something like this?

So many questions...I wonder how people deal with this. I mean, after going through so much, you get surgery and then you end up with pouchitis or whatever .......there's got to be people in a much worse situation as I'm in....I really admire those that go through all this...gotta be strong to deal with something like this.

To me pouchitis is nowhere near as bad and much more treatable than UC, so the way I look at it I "traded up" in diseases, sort of like "upgrading" my IBD, as you would do with a hotel room. I was a dead man with the colon-it was nearly dissolving when it came out. With pouchitis I am able to treat it with antibiotics, keep it in a "simmering" state, control my BMs, and live a relatively normal life, except I go to the bathroom a little more than most people, which would still be the case if my pouch was perfectly healthy. I have worked the last 20 years full time as an attorney, never missed time from work, and honestly I am probably the single most productive attorney at the firm I work at in terms of billable hours. I let others make the rain LOL.

I think your main concern at this time should be getting proper treatment. What you have may be treatable and you might have a long productive life with the pouch. My scope pics actually look worse than what my symptoms feel like- I am not in a lot of pain like I was with UC. With UC I had significant pain. Pouchitis is a far different disease.

Thanks for sharing your story It's funny - I also used to work at a law firm, although not as an attorney. Wow, so you've come a long way, then. How is your diet like now? Just curious as to how people with pouchitis eat.

Yes, I certainly hope this is treatable. Otherwise, I think I'm just going to run for the hills, whatever that means.

The probiotics that my surgeon prescribed are definitely helping and the steroid enemas for my hemmie are also helping. I think the hemmie will heal in about two more days.

Can't wait to hear results on Tuesday.

I try not to eat dinner so that I can put the enemas in and won't have to worry about any output. I normally take the probiotics after breakfast and lunch but I don't know if it's because I don't take any at night time that my stools become very acidic and hurts my bum. All that must be from pouchitis.

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How is your diet like now? Just curious as to how people with pouchitis eat.

Although I have battled chronic pouchitis since about 1994/1995, things deteriorated very substantially in the 2 years between my scope in the summer of 2010 and my scope in the summer of 2012. What happened during those 2 years is that a client of mine got me involved in a dinner club he had organized, some time in 2010. I discovered that there was an "inner foodie" inside me that had never fully been released upon the world, and joining my client's dinner club is the event that triggered the unleashing of this beast. I began frequently dining at 5 star restaurants in lower Fairfield County and Westchester County (places like Equus at the Castle on the Hudson in Tarrytown, NY, at the time ranked #26 restaurant in the USA by Zagat. I remember after an unbelievable dinner there the chef came out of the kitchen and spoke about the various culinary offerings he had prepared and the whole club gave him a standing ovation).

The result of this lifestyle was that my scope in 2012 showed my inflammation had extended, gotten worse, and the inlet to my J Pouch had been badly narrowed by inflammation. My doctors told me that the pattern of inflammation suggested SIBO in my pouch and that dietary modification would be a good idea, especially cutting down on sugars and carbs.

I thereafter went on a modified Paleo diet, cutting out all processed carbs and sugars and most dairy, although I do occasionally have yogurt and cheese. It took some time but in 6 months my weight went from 200 to 170 pounds, my pouch function improved, and my 2013 scope then showed improvement in the areas of concern. I basically went back to my pre-2010 baseline, which was chronic, "simmering" pouchitis which is controlled by antibiotics, but never cured. We also managed to reduce the amount of my meds, however, I was unable to get off antibiotics and I have rotated them for 20 years. I can only go 7-10 days without antibiotics, even if I consume the max dosage of VSL#3 DX, and then boom!!!- full blown, out of control pouchitis. However, I have survived OK with the chronic pouchitis for 20 years and it has been a lot better than the 20 years I spent with UC.

I have discovered a new world of Paleo cuisine. For example, I started baking banana bread with almond flour. I am now experimenting with the same recipe using coconut flour, after also having tried sorghum flour. Unfortunately my oven sucks, and the one thing I have learned is that a convection oven makes a big difference when doing this type of baking.

IMHO if you have pouchitis that is chronic, you need to watch your intake on sugar and carbs because that will fuel SIBO. The SCD, Fodmap, Paleo and UMass IBD diets all operate on the central premise of reducing certain carbs/sugars. These diets have the same central tenets but differ in the particulars; for example Paleo is focused not just on reducing carbs and sugars, but eliminating all processed foods. I still have not figured out the logic behind the UMass IBD diet, but since it was conceived by doctors and dieticians who are medical professionals, I assume there is a logic behind it. The UMass IBD diet is less restrictive than the Paleo or low Fodmap diets, and there appears to be internal contradictions within the recipe plans that I cannot explain.

One of the low-carb diets (paleo, FODMAPS, etc.) can be a very worthwhile thing to try for chronic pouchitis. It doesn't work for everyone, but you'll probably have a reasonable idea how effective it is for you after a couple of months of it, as long as you don't slip a lot of problematic carbohydrates in that you've "exempted" for one reason or another. And you probably don't need to drop carb intake to zero to see results (if it works), but it seems like you need to make an appreciable change.

I haven't done it yet, at least not in earnest. I would certainly try it if I were in daily distress, but so far I've been able to manage that satisfactorily with medications. Either choice involves trade-offs that can be very personal. How important is it to you to be off of antibiotics (or at least reduce them to the lowest possible dose)? How much distress are you in? How much control do you (or could you) have over your meal ingredients? How much of your social life involves carbohydrate-rich foods, and do you have reasonable alternatives without making significant social changes? Like any dietary change, it requires significant commitment to maintain.

The theory behind this is that carbohydrates (maybe only selected ones) in the gut provide nutrients that shift the mix of bacteria unfavorably, leading ultimately to pouchitis. Heck, tinkering with the bacterial balance is the theory behind antibiotic therapy, too.

Do the people with chronic pouchitis have inflammation also as a symptom - as measured through calprotectin, CRP or sed rate? A higher inflammation level has been one factor causing our drs to diagnose crohns or continuing UC ( as too much rectum left) as opposed to just pouchitis?

Also, Penny471, what probiotics are you taking and how much? thank you.

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Do the people with chronic pouchitis have inflammation also as a symptom - as measured through calprotectin, CRP or sed rate?

Inflammation has been seen on my scopes every year since 1995 and it is measured with visual descriptions in my reports like mild, moderate, etc. The inflammation has been in the pouch, at the pouch inlet and just above the pouch, but what is just above the pouch has been characterized as an irregular swath inconsistent with Crohn's and consistent with "backwash stool" and SIBO.

My docs have always been more concerned with where the inflammation is (location) and what the biopsies of the inflammation show. I have never heard of the measuring tools you mentioned in conjunction with my own case; they may be fairly new.

As I mentioned previously, I don't know if the diagnosis is particularly important when the treatments are going to be the same regardless of how the inflammation is characterized. What is most important is finding a treatment that controls the symptoms and the inflammation. If nothing else is working, people with either Crohn's or chronic pouchitis all end up taking biologics, so in the final analysis, the diagnosis is kind of irrelevant. There are a lot of people who go nuts over the distinction and I really don't get it. It seems to be a colossal waste of time, money and energy and I know that it was in my case.

What you should be asking the doctor is this: "if you determine it is Crohn's as opposed to pouchitis, is the treatment plan going to be any different?" And see what his/her answer is. A long time ago I asked my GI this question and he said, "we are treating you as if we are dealing with Crohn's." Yet 15 years later, I am still taking all the meds that are the "first line of treatment" for patients with chronic pouchitis (antibiotics), and they are still working. Possibly the only difference that might be made by a definitive Crohn's diagnosis is that they will be quicker to use biologics. But if the first and second line treatments are not working for someone with chronic pouchitis, guess what, they too get put on biologics.

My C Reactive Protiens were elevated with pouchitis, and of course, inflammation was also evident upon scope. My Vit D levels were also low, although they don't know enough yet to know if low Vit D leads to inflammation or if inflammation leads to low Vit D.

Agree that diagnosis is pretty arbitrary. If antibiotics/diet don't help it suggests the cause of inflammation is not bacterial overgrowth in nature, so next they try using the IBD drugs, because it all looks, feels and responds (so far!) as if I have IBD of the pouch-technically the pouch is not large intestine, so technically they can't call it "UC" but at least for me, where there has never been any involvement in small bowel or above it also doesn't fit with "Crohn's per sey either. Doc said once first line pouchitis treatments fail they will treat me "as if I have Crohn's of the pouch" but I have never been given a "Crohns" diagnosis. I basically consider myself to have "IBD of the pouch." Those of us with "old" pouches that are now starting to flare up are kind of breaking the ground on this.

Agree-The treatment is more important than the diagnosis.

Just wondering, with all of these diets that eliminate sugar and carbs, is it possible to gain weight? I have lost a significant amount of weight due to a combination of having some problems with my pouch and also anxiety. I am now trying to gain weight which is a very slow process. I have lost a total of nearly 15 lbs. and am trying to gain some of it back, which seems to be a very slow process. Any ideas of what I can eat yet try to stay off of sugar and carbs. I would love to try a diet with the hopes that some of my pouch problems will get a bit better.

Mema

On most of these diets monounsaturated fats are allowed. You may want to increase your intake of natural fats. For example, natural peanut butter, the kind with peanut oil not removed. You may also want to slightly increase the portions of the proteins you are consuming. Because of differences in metabolism and nutritional needs I would recommend consulting a registered dietician.

It could be that the anxiety has reduced your appetite and you just aren't eating enough. Try snacking on bananas between meals. It is a great natural snack.

Thanks, CT....I eat loads of peanut butter, unfortunately, it's usually on "BREAD" or a bagel. I cannot eat bananas as they usually give me blockages...I think that going to a nutritionist is a great idea and one that I have been toying with for a while.

I am also trying to increase my protein intake as well and am trying to each lunch, something that I haven't done for awhile.

The more I eat, the more I have to empty my pouch, and butt burn here I come. I feel as though I'm chasing my tail at this point.