I guess I have to wait it out. Since the day I had surgery insane amount of gas has been my problem. More so than anyone else in the wing. I would just lay in the bed sobbing in extreme pain (on 2 pain killers, cipro and gasx) while doctors tried to figure out why I was in so much pain. I honestly felt like the pain management doctor thought I was a drug addict or something. I also had my gallbladder removed not sure if that would make a difference.
Anyway, I am 6 months post op as of yesterday and yes the pain is better but I am not that optimistic anymore that I will be even more better. I have pouchitis symptoms but the scope and biopsy showed no pouchitis, actually if I didn't know better I would think I was looking at a healthy colon in the images! My valve hugged the scope perfectly, etc. I then had a small bowel barium xray and the radiologist said my pouch looked good and I had BEAUTIFUL intestines. Ugh, want to trade doc?
The worst is the gas/pouchitis symptoms. I rotate antibiotics and I def can't go off them but I have no pouchitis. It is also I think a 2% chance someone with FAP even gets pouchitis so people were puzzled over the symptoms. My GI thought maybe I have overgrowth of bacteria and to switch to VSL. I tried the VSL and it worked good for about 2 weeks then I was bad again. My stool started to smell like diesel fuel was coming out of me. If I eat a salad I get the same smell.
My upper scope was not good on the other hand and I have bad esophigitis and gastritis and some polyps removed from the duodenum and Ampulla. I have FAP and Interstitial Cystits so the pouch causes my bladder to flip out and flare. Just a real nightmare lately. I hope n another 6 months things have changed. I guess similar to people who come on here and complain about the jpouch, I have my own issues and I feel very doom and gloom.
On the other hand I still think this surgery was the best option since I still only drain 3 times a day, 4 if the "pouchitis" symptoms are bad.
I am not sure if any of you have read this http://www.amazon.com/COLITIS-...ervoir/dp/1461114845
book? A man who has UC and the BCIR wrote it. It is hard for me to relate to someone with UC but I read it prior the continent ileo surgery to see if it was for me. He talks a lot about adhesions he has and pouchitis then started going to a Rolfer for Visceral Manipulation and that fixed all his problems so he swears by it. Of course Insurance doesn't cover it and you need a few sessions just like you would going for acupuncture, cupping, massages, etc. So I couldn't afford him just yet but now I am thinking I should try, maybe it will help.
Survival tip #7 talks about it on his site. BCIR Advocate
Sex usually hurts me, as if everything is sealed shut inside so I don't do it often. other day I was having an ok day so thought my poor husband might want some sex, bad enough he has been dealing with my IC issues for years now this. So not to get to graphic, the first minute I had all this loud gas and movement go into my pouch from my small intestine, I could feel it all move in a big wave with penetration and it hurt really bad then it was huge relief so maybe something needs to be "rolfed" out!
Other than that I am planning my 12 day vacation to Portland in August, screw it. I was in NYC 2 times, once at the 3 month post op date then again at the 4 month. I refuse to have this pouch control me.