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I am having a bout of "something" and I'm not sure what.  

I have joint/bone pain, fatigue, and diarrhea (watery with bits of food).  Pretty much all the time however all symptoms  get especially bad right after I eat.  I have to go lie down and if I do, I'll fall asleep.  This has been going on for a couple months but it's gotten a lot worse lately. I feel terrible and I think I'm starting to get actual depression from it. I also have brain fog and frankly am barely able to work - I'm just sitting there looking at my computer screen.

When I've had pouchitis in the past (I've had it a handful of times in 17 years of the pouch, not a lot), I've had urgency - I don't have that.

The other thing is the joint pain is different than it used to be.  It used to (in UC days and in other bouts of pouchitis) be shooting pains in my joints.  Now I have those pains not just in my joints, but in addition it'll be like midway up my arm - it's like in my bones.  I also feel a generalized burning pain, especially when I wake up in the morning (although it goes away and I've tested negative for RA).  Everything is worse if I drink alcohol.

Does this sound like it could be pouchitis, or something else?  

I am going to my GI tomorrow but wanted to hear what you guys say.  I also have celiac but I'm GF of course and haven't had this kind of flare since I was diagnosed 5 years ago.

Frankly I want it to be pouchitis because maybe it can fixed with Cipro.  I hate going to the GI because I know he'll want to scope but I can't bear it any longer :-(  

Writing this is making me realize how bad things have been, I'm glad I'm going in tomorrow.  

Thanks in advance for any questions/ideas you think might help with my doctor visit.

Diagnosed UC 1995; J-pouch 2002; celiac diagnosis 2014

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It sounds like inflammation.  Arthritis would explain the joint pain and also the tiredness... Alcohol is also a common trigger for arthritis flare and arthritis is a fairly common concern for people with pouches. Any increase in bowel activity as you say is most likely due to some sort of inflammation.. but why you have this inflammation is anyone's guess.

Perhaps try an anti inflammatory diet?

I have exactly the same symptoms Kat, to the point where my finger joints are starting to swell. I am only in my early 30s and went back to see my surgeon to take a look at my pouch a few weeks ago. He says it looks fine so not sure what is going on. 

 

Please could you you let us know how you get on with the GI? 

 

Thanks,

Heather 

Hi...   I suffer from chronic Pouchitis and encounter same symptoms.  Besides Cipro and Flagyl (and Tinture of Opium for the chronic diarrhea), doctors haven't offered me much.  I have chronic fissure/hemmorhoid burning/itch which is caused/exacerbated by it.

I have (slowly) found that an AIP (Auto Immune Protocol)/Whole30 type diet does help.  No nightshade vegetables (though white potato doesn't bother me), no refined sugars, no bread (Gluten-free sometimes ok).....   It sux  (I'm Italian and can't enjoy tomatoes nor bread anymore), but there is definitely some control over the disease if I eat very carefully. 

To good health.....Mike

Hi.  If I recall, it started within a year of takedown.  I don’t recall ever having complete ‘joy’ with this Pouch.  All tests reveal signs of pouchitis and/or symptoms of irritable pouch.  I just started my day with 250mg Cipro and 250mg Flagyl.

the Pouch is well constructed and no fistulas.  If I eat strict AIP/Whole 30, it behaves better. I just find it hard to stick 100% to the dietary guidelines.  I traded bleeding colitis and constant prednisone  for this; it was a good compromise; all things considered.

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