Just trying to find some help because the doctor's haven't been able to do much for me. A little background, about a year ago I had an ileostomy and j-pouch surgery to get rid of my colitis. Had it reversed and had one major surgery for blockage but since then, things concerning my bowels have been decent. My small intestine seems to have finally learned what to do.

Unfortunately, my Gastric reflux got WAY worse and because of that, I now have massive diarrhea.. and can't do anything.. again. (Whenever I get bad acid my stool starts smelling very acidic, similar to when I had the bag, and then I get massive diarrhea.)
I'd had a stomach ulcer years ago when I was about 22. I'm 27 now. Nexium and similar medicines had always worked well for me at the normal small dose. I would take them on and off, as prescribed by my gastro doctor.
All of a sudden I just couldn't stop vomiting. It didn't really feel like any sort of acid problem to me and the doctors didn't seem very concerned.

Finally, when my butt suddenly became so sore that I couldn't sit down and had I lost nearly 20 lbs the doctors decided to really look into it.
They did an endoscopy and colonoscopy and found that I had an ulcer in my J-Pouch. They put me back on the nexium and antibiotics which fixed the ulcer. I was ok for a little while but then the acid started getting bad again.
I was eventually having to take the nexium 3 times a day. When that stopped working we tried Prilosec 3 times a day, then Protonix, then Protonix and Zantac, then Protonix & Zantac 3 times a day, and Carafate liquid 4 times a day. I stopped the carafate about 2 days after starting it
because I started getting a lot more pain in my belly, mostly when I ate, and I was vomiting almost everything up. I'm still having some pain now but the vomiting has mostly stopped.

So I'm stuck here.. I feel the acid and I know I need to eat something to relieve it, but when I eat something, it sometimes makes my belly hurt quite a bit. I can handle it most of the time - My epidural didn't work well after the ileostomy and I survived that, right? Just so sick of pain and don't want to ask for more painkillers. Growing up with everyone thinking I'm 'faking' my colitis and pain have made me wary of asking for stuff.

Thanks to the acid, my throat is killing me and gets so dry I choke on food/pills and now, like it always does, the diarrhea has gotten horrible.
((On a good note, I have developed this really sexy Demi Moore voice from the damage it's doing to my throat. ))
I can't do anything. I've stopped eating chocolate, caffeine, citrus & spicy foods. Just stopped dairy today. I was a vegetarian for about 14 years but I am slowly adding meat to my diet again because I think, with my health so poor, I need all the help I can get. And also, all of a sudden meat has started smelling really good to me..and making me hungry. I think my body is telling me I need it.. and I'm gonna listen!! (so far only broth.. so I don't think it's related to the problems)
The doctor wants me to have another Upper Gastrointestinal Series (UGI) xray series done to make sure my esophagus and stomach are ok. She also mentioned some sort of device that could be attached to my nose and then hung down into my stomach to detect acid levels at different times... if I still don't get better. That sounds almost as pleasant as Stanley the Stoma.
Another thing, I had stopped taking my anxiety meds (buspirone) because I'm already on so many medicines and my regular doctor said he hoped I wouldn't have to stay on them forever. My GI doc suggested that could be the cause of the acid flare up.. tactfully saying it's in my head.. I guess that could be it too.. we'll see in 2 weeks when they kick in.
Does anyone have any other suggestions for me? Or has anyone else experienced a problem with gastric reflux after the j-pouch? I get 1- 2 weeks of decent health and then something like this happens and I'm so miserable I just want to give up.. I was even working again this time! For almost 2 weeks!

Sarah

I get terrible acid reflux...if I eat more than a handful of food, it feels like its slowly eating up my esophagus. What sucks is, I can't burp. No idea why, I physically just can't burp so it mostly just sits there and makes me miserable. I also have duodenal ulcers, which is apparently from my smoking, I however say BS to that.

And as for feeling like you're "faking it"- god
I know what you mean. Not only do I feel as if doctors don't believe me, I feel like they're CONSPIRING against me. My doc tried to put me on all these anxiety meds (and hes a gastro, not a freaking psychologist!) just to shut me up. But, you can't settle for that. Just keep searching, asking questions, trying new things....they'll figure it out somehow. You just gotta make sure you fight for it.

My heart goes out to both of you girls. My son had pain for 10 months and they tried the anti depressant route and I vehemently said NO.
He is not depressed, just angry. You may hear from Jan on this. She is so knowledgeable and surley will have suggestions.
Being here is the first step to sanity through this and everyone is great so keep coming back with questions.

Hi Sarah,
So orry you have so much pain. Refux esophagitis can be really bad and you seem to be at that end of the spectrum where none of the meds seem to be helping. There is a surgical procedure called Nissen's Fundoplication, done laproscopically for intractable reflux disease with excellent results. You do not want to develop complications from constant acid reflux, so perhap you can talk to your GI or surgeon regarding this procedure.
In the meantime ask for pain meds and let them believe what they like.
Rani