Belly swelling after ileostomy - seeking advice

Has anyone experienced abdominal swelling that does not go away? I have had my ileostomy since August 1, 2015 and continue to have swelling of the belly. I am a small person and weigh an average of 95 lbs, eat healthy, and do abdominal exercises, but nothing helps. I had an ileostomy two years ago and had no problems like this before. I had a reversal done, which after ten months I decided to go back to the ileostomy. I have no colon, and I was always comfortable with the ileostomy until this time around. Any tips would be helpful.

Hi Sierra, is the swelling mostly on one side? If it is, it might be the start of a hernia. It's my understanding that stomach exercises aren't recommended for people with ostomies.

Hi Ron, the swelling is in the complete belly and not just one spot. My surgeon is actually the person who told me to start doing abdominal exercises. I had my first ileostomy 2 years ago. I do have a slight stoma prolapse but no hernia and was told unless it becomes a hernia or another issue, we will leave it alone.

Hey Sierra, I just read your post and am thinking maybe your belly is swelling because it is still healing. My stomach was swollen over 6 months after surgery. A healthcare professional told me that major surgery like ours takes over 2 years to completely heal. I really believe it because I was fatigued up until early spring. I am going on 3 years with my ostomy. Hope this helps. Good luck. LH

Hello Sierra. My belly was so swollen after surgery that I commented upon it to the stoma nurse. She told me it was 'normal' after surgery as they muscles and stuff would all have been disturbed and would go through a gradual process of healing. She recommended wearing a hernia belt to hold it all in a bit and as a preventative measure. It didn't prevent the hernia but it did make me look a bit more presentable from the outside! Best wishes Bill

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

I thank you, Ladyhope and Bill, for your responses. I had the reversal done in August of 2013 and went back to the ileostomy on June 23, 2015, and had two bowel obstructions between then and my second surgery on August 1, 2015, as the bowel had twisted in two places and the stoma was slightly twisted as well. I know when I had the ileostomy two years ago (which I got in August of 2012), that the swelling did go away in about a month. I have had several abdominal surgeries prior to that, so maybe that is why the swelling hasn't gone down yet. I'm very flat in the morning before taking in fluid, but as the day goes on, the swelling gets worse. I see my surgeon next week and would really like to have at least an X-ray to make sure everything is in its proper place, etcetera. Considering my history, it would give me peace of mind. Output and everything else is normal. The prolapsed stoma has not gotten any worse, and when I was examined a month ago, there was no hernia. Unless there is a problem due to the prolapse or if it gets longer, they don't do anything. I want to stay as far away from an OR suite as possible! Thanks again for your input.

Hi Sierra, I so agree with you....as far away as possible from the OR. I still can't believe how terrified I become when I go to the hospital to visit someone. The smells, the place, the rooms just plain scare me. I think it is PTSD...all those late night ER visits only to be told surgery is the next step...Ugh! I try not to think about it too much. Anyway, take care and good luck at your doctor's visit. I hope the x-ray is fine and the swelling is just because of the healing process. LH

I had a huge amount of fluid that went somewhere other than where it was supposed to (the body cavity) and it had to be suctioned out. It happened after the surgery and I had no repercussions, but I was stunned at the gallon plus they removed....I had no pain and no problem as the stitches had not closed and they could open a couple and get the tube in -- fascinating process to be honest!

However, I am not sure otherwise why the bulge unless as you refer to the other surgeries not holding any muscle tone --- I definitely did not look large or have any such issues after the stitches healed. I wish you well. I do not know if fluid masses show on the tests...

Hi Sierra.

I had an ileostomy in August 2014. I have had swelling ever since. It goes flat at night, but as soon as I've eaten or drunk anything, it starts to swell. By the end of the day, it's really uncomfortable.

To be honest, my local hospital (Pembury) has all but given up on me. They have tried antibiotics for a parasite that they think I may have picked up. That worked for a few days, but then the swelling came back. On my insistence, they then put me on another course (longer) of antibiotics which seemed to help after a week for a while. Then back to the swelling. They thought at one point that I had SIBO (look it up on Google). I had a breath test for this which came back as negative, but this test is only 80% accurate. I guarantee that I'm in the 20%. The second dose of antibiotics only works on 27% of people. You bet I'm in the other 73%.

I'm off to Guys in London in two days' time to have a camera shoved down my throat, through the stomach, and into the small intestines. Maybe they'll see something??? In a couple of weeks, I'm back for an MRI scan. Hopefully, after this, they may have an answer for me. I'll let you know. I've also been told that adhesions can cause bloating.

I know this isn't of much use to you, but there are a couple of things you can suggest to the surgeons.

NOT MANY KNOW ANYTHING ABOUT SIBO!!!!

All the best,

Pete

I have the camera deal every year and it is in a capsule and no issue --

In the future, have them use the body wrap - no adhesions -- I do wonder what the issue is and will be watching to see what you folks find out --- obviously something is pushing on organs and I would bet you will find there is a pocket of fluid --- I wish you folks well and the best of luck.

Hello pete b. Thanks for the post on SIBO I looked it up on Google and found the article fascinating.  You appear to fit the symptoms and the attempts at resolving the issues perfectly so let's hope the folks at Guys' can come up with something for you that works.  Please let us know the outcome.  Best wishes  Bill