Intolerancies

Is the only thing that happens when you eat these foods that your stool consistency changes? (I’m assuming it becomes looser, perhaps watery). I don’t pay much attention to my stool consistency as long as I don’t have frequency or urgency.

Yes, that changes a bit. The problem is, that a small change in stools is already a big change for me. I usually go 2 times a day. I had my pouchitis with 4-5 stools a day. So 3 is already strange. If the stools are loose I usually have to go in the morning already (normally at 4 pm is early) and I would have leakages at night.

My Calprotektin was around 40 the last times, if that helps you.

I understand that eating these things creates a change, but why do you care? What you describe sounds quite reasonable to me.

Because last year Spinach and Wholegrain Pasta was the best I could eat. Nowadays I even would have leakages during the day. The same goes for most breads. This is a development to the worse and something must have gone wrong.

Okay, daytime leakage is a big deal, but I think this is the first time you’ve mentioned it. When leakage starts I usually think pouchitis has developed, rather than a food intolerance. If pouchitis is what’s going on 10-14 days of Cipro or Flagyl usually clears it up.

Question?  How do you know you have pouchitis?? Are you calling diarrhea and rectal ulcers  and rectal  bleeding pouchitis?? I leak when exercising or from food that causes me diarrhea.  I can control that with half or a whole Imodium.  Are you calling any of this POUCHITIS?? Thanks... Together we learn!

Pouchitis doesn’t usually bleed, though it sometimes can. It can be tricky to figure out what might be “normal” leakage, but certainly watery stool plus sudden (perhaps unexpected) abdominal pressure can make many people leak, with or without a colon. Many (most?) J-pouchers will have watery stools at least occasionally - I don’t even call that diarrhea unless there’s urgency and/or frequency. Unless you’ve had recurring bouts of pouchitis with confirmation by pouchoscopy (and can thus reliably diagnose yourself) then symptoms just give you an indication that it’s time for your doctor to take a look. So I’m not calling leakage pouchitis, I’m saying that leakage is a very common signal that pouchitis may have developed and should probably be investigated. Leakage is not a common signal of a food intolerance.

WOW! How do they do a Pouchoscopy???  Scott, you are controlled by Cipro and Flagyl.  What do they do??

Leakage and nighttime incontinence are definitely signs of flaring or poorly controlled pouchitis. Chronic refractory pouchitis can be confirmed by pouchoscopy. I had about 25 consecutive annual scopes that showed it before Remicade eventually dialed back the pouch inflammation.

Like Scott I would be way more suspicious of pouchitis than a "food intolerance". And if the pouchitis doesn't get treated on the belief that something else is going on, it will get worse. Unfortunately this is the road many people go down with pouchitis, where it becomes very serious before anyone gets their head wrapped around what's really going on. It's sort of like the gastrointestinal equivalent of a rip tide. You do not want to get caught in one and if you are, you have to recognize what you are in.

@Drbev603 posted:

WOW! How do they do a Pouchoscopy???  Scott, you are controlled by Cipro and Flagyl.  What do they do??

Cipro and Flagyl control the inflammation of my pouch - in my case it’s chronic pouchitis and comes back if I stop the medicine. Without the medication I have frequency, urgency, and leakage. With the medication I feel great and eat whatever I want.

A pouchoscopy is a fairly quick peek inside the pouch with a scope (usually a flexible sigmoidoscope). It can reveal obvious inflammation or ulcers visually, and biopsies can be taken to identify more subtle inflammation. Most people do it with no sedation, but others prefer to be sedated.

So when I had  Sygmoid exam for my bleeding, (totally different group of GI Drs. ) they may have gone into the pouch and it could have been pouchitis? They just didn't call it a pouchoscopy? And that they were checking for pouchitis??

@Drbev603 posted:

So when I had  Sygmoid exam for my bleeding, (totally different group of GI Drs. ) they may have gone into the pouch and it could have been pouchitis? They just didn't call it a pouchoscopy? And that they were checking for pouchitis??

Since our sigmoid colon is removed along with the rest of our colon, we can’t really have a sigmoidoscopy, even though the same scope is used. As soon as the scope passes through the anal canal it’s in the J-pouch and they are doing a pouchoscopy. I can’t say for sure what your doctors were looking for, but it should have included an assessment of any pouch inflammation. Bleeding is more often a sign of cuffitis than pouchitis, though.

Thank you all  I think I need to be followed by a GI THAT  does this type of surgery! My surgery was done at a previous facility . I'm trying to get my medical records.  I'm not sure i have  a J-pouch. When I saw it during a lower Gi xray, it looks just like a bladder  Thanks for all of your help!

@GerdMüller  I agree to Scott F that your apparently food related problems are not necessarily intolerancies. Perhaps it is a kind of irritable pouch / bowel syndrome which is just showing up clearer if you eat certain foods.

As you said pouchoscopy showed no signs of inflammation, so it is not a pouchitis (by the way, why did they three pouchoscopys this year if everything looked all right?). But you could rule out that there is still some invisible inflammation by taking budesonide (Entocort) or antibiotics for a short period and see if symptoms get better.