Football Belly

[Lorfal]

I have intestinal failure due to gastro involvement with scleroderma. My stomach is huge and I look about 8 months pregnant. I'm told this is bacterial gas but have been offered no treatment to lessen size of tummy. Does anyone else suffer with this

[OldTed60]

Hi there. I’m so sorry you have GI failure - presumably now on TPN? I have severe gastroparesis and a stoma from slow transit bowel and my stomach is much larger than my low in range weight implies - but it’s soft to palpate so drs aren’t concerned. From a brief look at your profile it’s hard to tell but I assume you’ve had full investigations to exclude GAVE ie watermelon stomach, which I believe can be associated with some types of systemic sclerosis? For SIBO they usually prescribe an antibiotic such Rifaxamin. I don’t know how it is where you live but in my hospital the lack of gastro input for scleroderma patients is a disgrace. I am just back from a stoma nurse appointment 3 months post surgery. I asked if it would be possible to see the colorectal consultant surgeon again following surgery 3 months ago. She said “no we only follow up cancer patients here - you will have to see your GP otherwise”. I was shocked and quite indignant about this considering that many longterm, non-malignant conditions are incurable and as progressive but still treatable if caught in time and followed up on properly. I do hope things aren’t as bad in your area and you can get full investigations to discover what’s causing your abdominal distension.

[Lorfal in reply to OldTed60]

Thanks for that. Yeah tummy is soft but can sometimes go into spasm and really hurts. I am on TPN as I am classed as having complete intestinal failure. Just disappointed that nobody seems to understand how distressing it is to have such a large tummy and getting suitable clothing is a nightmare

[OldTed60 in reply to Lorfal]

That must be very hard. Could TPN and GI failure be actually causing this very bloated tummy perhaps? Also I’m wondering about hernia? I’ve assumed that my large saggy tummy, despite major weightloss, is part fluid retention, part old adipose. I get a lot of noise - like my plumbing has gone mad- but don’t have complete GI failure yet very thankfully. However my large bowel and rectum have failed leading to stoma. I wear support wear (a vest and pants to hopefully prevent parastomal hernia) from Vanilla Blush - a medical supply underwear company. I’m not sure whether this would work for you but here’s a link list in case:

vblush.com/en

[Lorfal in reply to OldTed60]

Thanks I'll have a look

[George369 in reply to Lorfal]

Hi Loral

I had complete intestinal failure two years ago, my stomach bloated like a huge balloon for weeks, doctors first tried antibiotics, but nothing would help, tbey put a cable up my nose to remove liquids and i had this continuous feeling of helplessness. Initially doctors said it was diverticula in the intestine but later was diagnosed with systemic scleroderma. They performed 2 surgeries to remove the damaged part of the intestine, including stoma, which was a terribly painful experience, but fortunately all went well and gave me immediate relief and i can say that i am much better now almost back to normal, although suffering from other complications like low protein absoption, stomach ulcers, acid reflux, and post-surgery fissures, etc. which are all related to scleroderma, also related to side effects of toxic medicines given to treat scleroderma.

First step was to try antibiotics to stop the inflammation and bloating, and also to try walk as much as possible to get the intestine working again. In my case i could not avoid surgery. Again everyone's case is different, so its difficult to compare and give advice, I just wanted to say i know what this feels like, and i prayed a lot, this helped me also.