Daily Swelling After Ileostomy: Could It Be SIBO?

Hi guys and gals ....

I had an ileostomy in August 2014, the good old NHS seemed to mess up just about everything they did to me.

I had one operation which was a colostomy, leaving some of my large intestine/bowel. It managed to twist my small intestine, which also had a couple of adhesions. After lots of pain and a distended belly, they decided to operate again, turning it into an ileostomy. I lost about a third of my body weight while in the hospital, very ill and almost met my maker, but the bar stewards couldn't kill me off ....lol

My main problem now is this........Every night I go to bed and wake up with a flat(ish) belly, then, as soon as I eat, it begins to swell up. By the end of the day, it's very uncomfortable, and some days my wound (another story) tries to split back open with the pressure. I've had a hydrogen breath test for SIBO which came back negative, and I wasn't at all surprised as the drink you have to take is for people with a colon and constipation. It's designed to go through the stomach and small intestine and end up in the large bowel, well I don't have one of those!!

I spoke to the "expert" at Guys Hospital and explained all of this, her response was "Well, we should be able to see something?"

This drink emptied into my pouch in about 45 minutes, the test (blowing into bags) lasts for 3 hours....So I wasn't surprised it came back negative!!!

Expert Doc says try the FODMAP diet and I'll see you in 3 months.....I can't afford to eat the stuff on a FODMAP diet!!.....and as Expert Doc said about wheat and gluten intolerance "If you didn't have it before the op you wouldn't have it now." The same must surely apply to FODMAP, I wasn't allergic to carbohydrates before so why should I be now???

I think I have SIBO .......

After that rant, I have a question for you lovely people ............At the weekend I went fishing with my brother, there are no toilet facilities at the lakeside, so I used a large pot with a sealed lid. Each time I emptied my pouch into the pot, I unscrewed the lid and there would be a hissing and the contents would be fermenting and almost bubbling.

Could this be happening in my small intestine???? which would explain the swelling........any ideas???? the experts haven't a clue!!!

Thanks for reading, people!!!

Pete b

Hi Pete,

Wow hissing.....did they run test on the urine and find anything? I sure hope you get some answers soon!

Hi Mrs A

No they havent done that .....they're pretty useless really....They got all excited about ripping out my colon, once thats was done they almost dont want to know anymore, or they just "dont know"..

 

Wow Pete I'm sorry to hear that. I hope someone that can help you comes along soon.

I've experienced my output bubbling and it seems to be when I eat certain food combinations.  If I eat anything with skin or foods that are harsh on the digestive system.  I typically stay with the low-residue diet or full liquid of I have trouble with blockage.  Keep a food journal so you can isolate the problem. Also journal any pain you are experiencing and mesaure the amount of output daily.  The average output for ileostomy patients is 700 to 1200 cc.

 

Hope this helps.

Debra

Words of Encouragement from Ostomy Advocates I Hollister