Ken-

There are lots of possibilities, including plenty that have nothing to do with your pouch. You don’t describe the pain in any detail (location, duration, constant vs. varying), and your surgeon might have done a preliminary work-up to rule out some things. Are you having lots of gas? Without that SIBO is unlikely. In addition to pouch possibilities you could have partial obstructions that come and go, gall bladder issues, pancreatitis, etc., etc.  You do need someone who can think beyond the pouch. Good luck!

 I am not poor,  but far from wealthy,  and I would never go with doctors that were not in my plan. It is possible to get out of network coverage, but generally there has to be no in-network option. Most likely you’d have to have an in-network second opinion before they would approve coverage out of network.

Depending on where you are, you should have multiple options. Scans don’t tell the whole story, so a scope is in order if you have not had one recently. I have not seen a surgeon for my j-pouch in over two decades. One thing to consider is that this is not j-pouch related at all. A good GI doc will look at your history, do screening bloodwork, and do some sleuthing. The GI sysytem is pretty vast, so there are many things this could be. I hope you get this sorted out soon.

Jan

Hi Scott & Jan,

I appreciate both of your replies!  To answer some of the questions, the pain is usually higher up (surrounding belly button) and then sometimes towards the right.  It is a dull achy pain/cramp, sometimes more severe, and I am getting it in spurts of a few days at a time.  When it is bad, I don't feel like getting off the couch.  Sometimes it even seems to worsen after a BM.  I would say it might  be gas, but if it is, it is mostly trapped, as it doesn't pass too often.

Jan - I agree regarding insurance; If anything, I will contact my surgeon and ask for other in-network options.  The notion that this has nothing to do with my pouch is actually nice, as I would rather not have to worry about that.  However, I would imagine any initial sleuthing would include a full scope, and I'd feel better if that was done by someone recommended by my surgeon.  As for the other possibilities (gall bladder, pancreas, etc), would a GI still be the place to go?  

I've also spoke to my chiropractor, also a nutritionist, who recommends a supplement called Atrantil (developed by a GI) for bloating and/or methane based SIBO.  I'm thinking about that, as well as if fiber would benefit.  My course of ABs is over in a week and I'd like to have a plan, as I don't think that is going to help.

Thanks!

Ken

Ken-

A GI should be able to figure this out. The only other common possibilities where you’re describing the pain are kidney and gyn, and I’m guessing we can rule out gyn.

The right of the belly button sounds like it's near the join from ostomy to j-jouch?  I get this sort of pain here of I take fibre or don't drink enough water.  

I'm planning on going back to fibre at some point and trying s few different things, but at present I'm better off it

There’s no “join” from the old ostomy site to the J-pouch. The loop ileostomy is an opening along the side of the small intestine as it makes its way to the pouch. When it gets closed up (along with the abdominal wall) during takedown adhesions can form, which is why it’s a common site for obstructions. That’s the right location for Ken’s discomfort, but the timing isn’t a great match for what he’s describing.

Yes, Scott - we can rule out gyn!  Its interesting you mention kidney.  When I was much younger, I was prone to kidney infections and I believe I do have one kidney that is somewhat atrophied as a result.  However, my more current health issues (UC, pouch, etc) and location of pain I think would kind of make a kidney issue unlikely.

I've never really had any type of adhesion issue, and my pain is not constantly to the right near my stoma scar, so I don't think that'd be the issue, either.  The fact that I go days feeling OK and then days feeling real bad is very puzzling.  Today (so far) is a good day.  

I've noticed that, especially when feeling lousy, my transit time for BM is much longer.  I didn't end up using the rest room until this morning after eating dinner last night....that is somewhat abnormal for me.  

For now, still taking ABs for possible SIBO, ordering supplements as mentioned above and mulling over a new GI.

Thanks all 
-Ken

hi ken ! hope all is well. did this finally diagnose and resolve ? any tips ?

@KennyJG44 Have you had a CT scan done of your abdomen? The reason I ask is because I used to have similar pain and what they found out was even though I was having 10 or more bms a day, I still had stool higher up in my intestines. So I was actually constipated. This made no sense to me since I was always going to the bathroom but I was told watery or loose stool was slowly coming down but the more solid stool was not and that was causing some of my achy pains and gas.

@SadieM1210 what did they end up doing for that issue??

@KennyJG44 I ended up doing a liquid diet for a day and then drank a colon prep (laxative) like you would if you were going in for an endoscope. I repeated it a few times.