Ever since my takedown to a J-Pouch, I have had severe gas that is only getting worse. Due to our plumbing/physics I have to get down on my knees/tummy to release gas. At its worst, I can release gas over 200 (seriously) times within a 30-40 minute window. It has gotten so bad that I don't know what to do. I have been treated for pouchitis, sibo, eat low sugar/low carb. I have tried eliminating dairy, gluten, etc. I also am having SEVERE Diarrhea, peanut butter tears me up, bananas give me gas. I need help getting the gas/diarrhea under control. I am taking a lot of Immodium with no results. Im starting to think the gas is coming from a Chron's flare. Does anyone else have increased gas during a flare? Pretzels used to help me with bulking things up however now they seem ineffective. I am definitely suffering from short bowel syndrome however it has not been this bad, at least not in a long time.
Sometimes that much gas can be a sign of SIBO. Doxycycline or Xifaxan could get that under control (if it’s SIBO).
I have been treated for sibo several times with no results. I took Xyfaxin for nearly 3 months with no improvements. Please help me, please reply with any advice anyone.
Did you try doxycycline? That’s the one that worked for me.
I’ve been trying to request it from my GI. He said it’s too powerful and doesn’t want to prescribe it. I’m in the ER now so I will ask the doctor if we can try it before being discharged. What symptoms were you having? I can pass gas 200 times in one sitting(laying in my stomach/all fours), several times a day. It’s bad.
I was having excessive gas. It really doesn’t matter what position I was in while doing so. A couple of months of doxycycline sorted it out.
You ask if anyone else has this problem, the lack of response suggests they have not (rather than indifference to your suffering). usually the forum is a prelude to a doctor visit, but it sounds as if you have already exhausted doctor's advice so you can't really expect the forum to have immediate answers for you I'm afraid.
You say your doc has treated you for all the common issues like sibo and pouchitis, Scott has recommend a specific drug you could ask to try.
Then you say you have tried the diet changes, such as excluding dairy and gluten. What happens if you fast? Ie just drinking water. Does the gas improve or get worse? Presumably that would indicate if it was related to the intake of food. If it doesn't improve I guess it would have to be something like sibo or you are gulping air without realising it (perhaps in sleep?)
I'm sure you've tried this but do high dose probiotics help? Which one did you try? Digestive enzymes (proper ones not Beano) might help too.
Have you tried playing with fibre? Benefibre gave me terrible gas, but on psyllium and inulin it often firms me enough so I can pass gas sitting or even walking which might be a boon in your situation.
Please don't think people on the forum don't want to help, but it seems you have tried a lot of the stuff we would advise anyway and people probally don't want to post just to say they don't have any advice for you.
I hope you find the solution to this soon
Thank you for the response. My doctors won’t give me the specific recommended drug as I mentioned above. When I fast the gas does not improve. It is a possibility that I’m taking in some air while sleeping I will have to look into this further. High dose probiotics such as VSL 3 do not seem to help. I have not experimented with fiber much, I’m afraid of psyllium husk causing blockage. Do you take powder or capsule & powder or “full husks” as they say (which is still a powder). I disagree I understand that gas is an extremely common complaint/issue of j pouchers and everyone has different solutions. Also I will look into digestive enzymes. I’m not a fan of beano anyways as it’s ineffective other than eating it with beans or crucifurious veggies and I do not eat those foods. Ironically beano contains sorbitol is known to cause gas and diarrhea. Thank you.
Update I am in the hospital now with a “Chrons like flare” and fistula. Coprocessor/flagyl, blood transfusion, iron infusion, insulin shot, budesonide, prednisolone, Canasa suppositories, I came in because my body cannot take it anymore. I think Chrons or UC could be causing the gas.
So sorry to hear this. Hopefully you are on the road to recovery!!
@Pouchbro how are you doing now?