Whats sad is- I really hope it is because theres absolutely no other explanation for these symptoms:

-Bathroom about 12-15 times daily
-Demonic, gaseous rumbles in my stomach
-Feels like I could sit on the toilet for HOURS, and I'd still be passing gas
-Really bad pressure if I eat more than a fist-sized amount of food
-The volume of stool I pass is just HUGE...its like my body is just spontaneously forming stool out of nowhere!
-Whatever I eat, comes out in about 5-10 minutes...I'll need to go to the bathroom after five minutes of eating because I'm not even done with my meal, but I'm already passing it.
-Severe dehydration and exhaustion
-Not absobing any fats, and not gaining weight (I was on a steady diet of McDonalds and Burger King for about three weeks this summer during a very bad spell of depression, and I didn't gain a SINGLE pound.)
-Feeling hungry all the time, like I'm not absorbing anything
-If I take immodium or anything to slow things down, I can't pass stool AT ALL and its very, very painful
-Output of basically water, gas and bits of undigested food
-Tests were done, no signs of crohns, ulcers, or any other problems

Keep in mind I've had these exact symptoms every day for 6 years, since takedown. I was on flagyl a lot in the beginning for one week periods, but it never helped at all, so I kind of gave up with meds. Helps, suggest meds???

PS!!!!!

My glands are swollen 24/7! My neck looks ridiculous with these freaking lumps on the sides!

Have you ever seen an endocrinologist for a workup? It could be thyroid issues like Grave's Disease, depending on where the swollen glands are. That can really mess with all of your other systems.

You might try one or 2 metamucil wafers spaced out during the day (without the liquid it says to drink...that's for the people with colons). It might help absorb the liquid without slowing you down.

Keep asking, you'll eventually get some answers!!

Keep us posted....Lori

my thyroids' been checked, theres nothing wrong there

Hi Chelsea,
Sorry to hear about your situation. I really empathize with what you are going through. After reading some of your symptoms, it sounds like you should be worked up for possible malabsorption syndromes, including as someone suggested before soemthing like Celiac Disease or Whipple's (a bacterial infection of the small intestine). You may need to get a endoscopy with biopsies. Also, your symptoms could be related to possible pouchitis as you said. I know you've tried Flagyl multiple times, but did you try Cipro or another antibiotic such as Xifaxan? If you are having that kind of stool output make sure you stay well-hydrated.
On the side, if you are having "lumps" in your neck, I would definitely bring that to your doctor's attention. How long have you had those? Do you know if they are associated with any other symptoms like cough or fever?
Lastly, it sounds like you really should seek another doctor's opinion - both GI and surgery. I think it would provide a fresh perspective on things. Feel free to PM me.

I've had the swollen glands since I had mono last june...I had it REALLY bad, and my glands never went down from it...so I dont know if the mono aggrivated my possible pouchitis. I've noticed I've never quite recovered from it- all my symptoms got a lot worse after it. It's obvious I don't have mono anymore, because I've been on antibiotics for a kidney infection, so I obviously would have had a reaction if I still had the mono in my system. But even when I've been on antibiotics, all that happens is I get TERRIBLE diahrrea.

my body is so complicated

ps; I've tried probiotics...no help there. and I've tried metamucil, it does the same thing as the immodium...very painful

OK, gross question, but what color is your stool usually?

Also, since you had mono, you might want to see an infectious disease doc to check you out to make sure you don't have any latent bugs causing trouble. I'm just throwing things out here. Someone is going to read all of the posts and all of the answers and hopefully have an AHA! moment and suggest the culprit, or the next avenue of exploration to find the culprit.

I agree that another doc's opinion might be warranted. Maybe a teaching hospital where you'll have access to multiple disciplines at one shot.

Sorry I'm not more help.

Lori

My stool is usually colored with whatever I eat. So its never really brown per say, unless I eat all colorless foods that day. Sometimes I scare the crap out of myself when I forget that I drank red koolaid that day- its like colitis scares all over again haha

Chelsea, when you talk about the pain trying to pass formed stool, is it possibly because there is a narrowing somewhere along the line perhaps from scar tissue? I was worried about using metimucil and imodium to much. It seemed when I had any formed (even just like toothpaste) I really had to strain to pass the stool and it would take me several sitting to completely empty the pouch. when did you have your last scope? Sarah

I'm going to shoot for a malabsorption issue or pouchitis, since you say your stool is never really brown. The number of years since your surgery are ample for adaptation and by now your stools should be brownish, even if liquid. The only time my stools are out of the brown range is when I have a very fast transit, such as with food poisoning or overeating the wrong food for me, but it is not an ongoing thing. You may have just not had the right treatment. However, if you have had negative scopes when you are symptomatic, then time to think of something else.

Also, you may indeed still be troubled by chronic mono. Mononucleosis is caused by the Epstein-Barr virus and is not affected by antibiotics. Epstein-Barr can lay dormant life long and can reactivate, particularly if you are immune deficient.
http://www.mayoclinic.com/health/mononucleosis/AN01375

Jan