I'm 26, have had a connected pouch since 2001, colectomy 2000 for presumed UC (Dx'd Crohn's last summer). For two years now, I've had a terrible drilling pain directly below the breastbone in the center of my abdomen as if someone is pushing a foot into my upper gut. It results in a feeling of early fullness, radiates into my center-upper back/neck and leans a little to the front Upper Right Quadrant. I'm also noticing deep belching after drinking water/eating. It feels like it's pulling me forward and I'm hunched over all day long.

My Dr. in Pittsburgh (Leonard Baidoo, UPMC Presby, Refractory GI) claims my Crohn's is totally under control with Humira after 2 pill cams, put me on Amitriptyline and told me to suck it up (have failed Neurontin therapy, 6mo of Omeprazole & others). Soon to be starting LDN over unease with Humira. I'm down to 100 lbs, have little appetite and need several Ultram at a time to function. The doctor has noticed the tenderness at examination. He's suggested causes including hernia, strictures & adhesions, but is unwilling to investigate further or operate.

My GP is very interested in sending me to Cleveland Clinic, who should I see if my Crohn's seems to be relatively under control, but I'm having undiagnosed pain possibly associated with my surgical history of colectomy/pouch? I need someone who sees lots of people with our surgical history and can recognize the specifics (Though my Dr. is highly skilled, he suggested to me this summer I read up on this thing called "Pouchitis" as if I hadn't been doing this for a decade *sigh*).

This has made me it's slave and as a father of a 10mo old, I'm ready to move on. Hard enough dealing with the Pouch & Crohn's as it is, right?

Has anyone ever mentioned gall bladder? It sounds like it could be because of the belching, and right quadrant pain. Maybe you need a sono of the gallbladder before you go and make a big trip.

I asked about that during the big ER visit last year leading to the Crohn's diagnosis. I had an ultrasound and everything looked good. Now current specialist is resisting more imaging, including the notion of an MRCP, just to prove that pancreas & biliary systems are okay. The pain is definitely centered and extends slightly to right.

I will most certainly ask again on my Sep 18th visit though, thanks for the suggestion stell.

Anyone else had to go to Cleveland to resolve undiagnosed symptoms?

I recommend Bo Shen if you can get in to see him.

I second stell's comment - it sounds like gall bladder to me too. They don't always catch it. If it's sludge I believe it doesn't show up an ultrasound. There are other procedures that may be more accurate. The radiating to the back is what I experienced. Have you noticed that it's worse after eating certain foods? Have they done an endoscopy? And just let me insert this here, any doctor who says to 'suck it up' because HE can't find the cause needs to be fired. Especially when he notices tenderness at examination and that your weight is done to 100 pounds. It sounds like you need to get to the bottom of the pain.

I hope you find the answer to this and you can get on with enjoying that 10 month old!

kathy

Before you travel, can you get immediate approval to see another gastro dr for a 2nd opinion?

I agree about seeing another Gastro for a second opinion. When I lived in Pittsburgh, I saw Howard Dubner at UPMC and I absolutely loved him (and still miss him now that I live out west). I even consulted with him via telephone when I had GI issues during pregnancy, as most of the GIs here know nothing about j-pouches.

Whatever you decide, I hope you get some relief and find solutions to your issues. Good luck.

Dr. Bo Shen at Cleveland is fantastic- and an expert in pouchitis. Definitely worth the trip.

I agree Dr. Bo Shen is Fantastic
I just got through a whole big process with the Doc's at UPMC.I was on remicade, and was having weird side effects from the drugs. Things only got better for me when I changed I went through 6 months of test with UPMC only for them to tell me I was a though case, and they were not sure what to do next. I finally went to Dr. Bo Shen at the Cleveland Clinic as the others have recommended. I'm getting the help I needed and feel much better. Don't waste time. It never hurts to get get a second opinion and you can always maintain you current doc.

Good Luck,
Carolyn

Thanks for the tips everyone. I'll;l definitely be taking action. This has really been debilitating. It's hard to have survived the whole colectomy/ostomy/j-pouch/then crohn's cycle, but doing that with terrible pain is the worst. I keep telling myself, after all that I've done so far, this shall not break me, but it's trying.

*UPDATE*

Scheduled a visit & pouchoscopy with Dr. Shen for mid-Oct. Had a Gallbladder Ultrasound (also covered a kidney, pancreas, liver & biliary tract) today under direction of local GI.

Technician wouldn't tell me much when I probed her, but ended up saying "I think this will lead them in the right direction". She had trouble finding gallbladder, it was just a tiny sliver when it showed up. I'm terrified of loosing it and having any additional bile salt diarrhea. What have been your experiences?

This message has been edited. Last edited by: michaelb,

I found that things were much better after my gall bladder was removed. This happened years and years before my j-pouch surgeries though. I think that most people who've had their gall bladders removed are doing much better. I don't think that its removal would cause additional diarrhea.

kathy

Thanks! Great to hear. I tend towards Chinese Medicine and believe it's all in there for a reason, but am also sick of the pain and wasting.

I see Bo Shen at Cleveland Clinic. He is the leading expert that has anything to do with a Jpouch. He is a very nice man and he will work to find out what is causing your problems.

I had my gallbladder removed a couple years after my pouch. I didn't really notice a big increase in diahrea that I can remember but there are a ton of things out there that can help keep that issue at bay should you develope that problem after GB removal.
If a ultrsound is inconclusive they will usually go to doing a HIDA Scan. If you have bialary sludge it will show up in the HIDA Scan. I had never heard of Bialary sludge and only thought about stones and such...Just goes to show one can learn new things everyday!
Hope they get to the bottom of this!
Hang in there and advocate for yourself as best as you can!
Julie