Borborygmus in spades

[volvox45]

I have systemic scleroderma which primarily affects my GI tract. The most embarrassing symptom is the very loud graunching, gurgling noises that my guts produce – loud enough to be heard across a room and turn heads. Does anyone else have similar problems – oh, and a solution would be good!

[Hidden]

Yes I do - but usually only after taking the laxative Linaclotide. That said I’ve been taking this for 4 years now and the waterfall noises are quite new! I also have gastroparesis but not sure if this is related. I mostly have systemic sclerosis in my gut as well. I didn’t know the waterfalls had a name?!

[volvox45 in reply to Hidden]

Oh, I just think borborygmus is such a lovely word! It just means gurgling innards. Laxatives are the last thing I need as I have four or five toilet visits a day – my guts are overactive due to Small Intestine Bacterial Overgrowth. We're all so different with this condition!

[Hidden in reply to volvox45]

I’m starting to think I have CIPO rather than SIBO although no one’s so far checked due to pandemic. But I’m toilet bound with diarrhoea due to the powerful laxative medication and otherwise I’m vomiting or rolling in agony due to severe gastroparesis so guts are definitely the worst thing this condition throws at me so far. Either extreme is evil but I think both would explain borborygymus and I’m going to copy and save this name to say to myself when it kicks off next and people’s heads turn!! Like a very babbling brook!! X

[volvox45]

Oh dear, that sounds just awful – I shall count my blessings that I have no pain or vomiting, just occasional discomfort. Every so often I take a course of antibiotics so I get three or four months without diarrhoea. The medics try, but they don't seem to know the details of this ridiculously diverse condition. I'm still waiting to find out just how – or not – bronchiectasis and SSc are connected.

[Hidden in reply to volvox45]

I do know that bronchiestasis is associated with all systemic autoimmune diseases including Sjögren's as well as SSc. I have Sjögren’s overlapping and know of quite friends who have pulmonary complications from Sjogrens.

[Sanmateogirl107]

have you tried probiotics, try eating mint altoids 1 hr before you eat and 1 hr after you eat. or mint tea. try eating softer foods, smaller portions as well i have the problem of choking on my food this works for me. make noise ask the doctor for help do not give up ok you have to advocate so speak up please do not sit there in pain. make them hear you. love julie

[volvox45 in reply to Sanmateogirl107]

I have tried probiotics (on the recommendation of my GI consultant no less) but they had no effect. I will definitely look out for mint altoids though! I do eat small portions – mostly because I feel full very quickly – but I will try softer foods too, that makes sense.

[Sanmateogirl107]

ok to help you sleep get a twig of rose mary crush it under a warm bath the smell will lull you into a nice sleep. if your in pain try (wild lettuce extract) mt rose herbs, ebay i take it works great 10 drops under the tongue and 10 at night you can go up to 35. hope you feel better love julie

[Chakula]

Has anyone investigated Stem Cell treatment for scleroderma via Swiss Medica? It is mentioned on their website as one of the conditions they treat at their clinics. V expensive but seems to be a reputable outfit.

[Sophiebun11]

All of us with Sclero could be in a crowded room with non-Sclero people and speak in a private gurgling lingo LOL.

It's is embarrassing, people always ask if I'm hungry. One day I'll tell the truth and say "No I'm about to have explosive diarrhea".

It used to be bad enough with regular diarrhea but now my Dr. started me on Megaclopramide to help my esophageal dysmotility and it helps that more than Omeprazole but the side effect is diarrhea.

Just what I needed Super Sonic Diarrhea added to the Sclero Diarrhea. Oh well. I have to laugh because there is a lot to get sad and upset about these autoimmune diseases.

Best wishes to all of you in dealing with your disease.