Diarrhoea!

[Tmontana]

Hi all .. I've now been properly diagnosed with systemic schleroderma and have the usual symptoms ie raynauds, ulcers etc . I am waiting to see a consultant about stomach and bowl issues .I've lost quite a lot of weight even though I eat a lot ! Was wondering if anyone has bowel problems such as having to go to empty bowels a lot ! Also I've noticed that if I have wine I've started to get awful diarrhoea the next day . Anyone else have this problem... I do like a glass of wine but looks like this disease might take that little pleasure away too 🙄

[OldTed60]

Bowel and stomach involvement is my most severe problem with systemic sclerosis so yes it can definitely cause various bowel problems. In my case I am diagnosed with GERD, Gastroparesis and slow transit colon - all classed as severe GI dysmotility. I have a stoma now (colostomy) but am still quite laxative dependent but this gives me diarrhoea. I haven’t found a compromise because if I don’t take laxatives and my motions normalise then I start vomiting so it’s between one end or the other! A glass of wine would be a no no for me but luckily I’m no drinker these days - in fact my diet is very bland and restricted and mostly soft/ liquid. It would be worth trying eliminating certain food groups such as gluten, dairy etc one at a time to see if you have developed an intolerance while you wait to see the gastroenterologist. Best of luck 🙂

[JuliannaGrandinetti]

I was diagnosed 10 years ago with ulcerative colitis until eight years later Were they still calling it? Moderate alert to colitis. Until I was in an emergency situation and had to receive an emergency total collect me. My inflammation and extent of colitis involvement were not showing up correctly on the scan. Until the surgeon had to open me up again two weeks after still being only diagnosed with mild/moderate colitis did the surgeon report there was absolutely no intestine to take out it had liquidated.

my point in making you read about my brief history with my guts specifically as I’ve also been diagnosed with sclera derma 10 years ago as well. Doesn’t anyway help anything except our nerves.

I blame the severity of my disease in the progression of all organs that, for now, have been affected- lungs, extremities, esophagus, large intestine, thyroid and heart on stress.

to be direct about your concern. It is the events that lead up to you wanting to enjoy that glass of wine. This may seem to be ignoring the causing effect of the diagnosis however I believe when we get stressed out our bodies shoot into auto mode and do nothing else but START to shut our organs down. It’s a classic auto immune response to the body and stress. Ultimately, I’m trying to warn you about the effects of any stress on the body, including change of temperature and loud noises and so many other things we can’t control. Please continue to reach out there. Is somebody else dealing with the same thing and I am not a doctor as you know, but I am a patient going through what you’re going through and I believe stressors make our (scleroderma patients) make our body go into fighter flight mode even if it’s it’s a simple weight at the grocery store or three cars in front of us in a traffic light, hearing from a friend/relative we haven’t heard from in a while as we try to find the words to say we’re not alright….I think you get it. To the point, my advice is as I said in the beginning alcohol helps literally nothing. It is the experience you encountered that made you feel like you needed or wanted a nice glass of wine that contribute the next day to your Change in bowel movements.

Of course, I am not a doctor, but I’ve been through medically particularly pertaining to the gastrointestinal organs more than you can imagine and honestly more than I’m willing to admit.

Please try to take things easy by knowing you stress triggers and put your mind over the matter. As well as reaching out on this app because it’s always good to know, someone else has been going through something like you.