Hi everyone
I have scleroderma and my bowels seem to have taken over. When I feel the urge to go i must go immediately otherwise there is an accident. I have had a colonoscopy and nothing was found except for diverticular disease. I have to see the doctor on Monday as the hospital has suggested going on an anticoagulant which i am not keen on. Anyone else had problems like this
Pennypetra
Yes I have. My rheumatologist gives me extra strong antibiotics every 6 months to kill off the bugs that way all new ones grow and I am fine for 5 months or so. Interesting but it works. I do end up with thrush each time which I have to deal with though. Anyone else have this cure? I thought it would lower my immune system even further but seems not. Rheumy did give me an explanation but I have forgotten what it was
Hope this helps
She is a Rheumy at the Royal Free one day a week so they obviously are using this treatment
Thanks for that. I see Prof Denton once a year but have never been given that. I will have to ask
Tell him one of Dr Derret-Smiths patients told you about it
SIBO? (Small intestine bacterial overgrowth)
Hi, I'm sorry to hear about your symptoms as I have been there too. I now have a sacral nerve stimulator which helps to prevent the incontinence alongside imodium to make everything firm, if you get my meaning! My rheumatologist referred me to the colorectal surgeon who started the process. A colonoscopy was clear, but I was referred for tests of the muscle sphincter strength, which was really poor. I tried bio feedback which didn't help and then was referred for the nerve stimulator trials, which were successful, so I had a permanent one fitted. Once I got it working I have had very few issues with any of the symptoms. It all took a while, but has been worth it. Good luck with getting your symptoms under control! 😊
Thank you so much for your help. I saw the colorectal surgeon when I had my colonoscopy but he did not arrange for a follow up only with my own doctor
Anyway that’s another thing to put on my list to ask.
All information is so welcome so thanks again
I asked the nurse who monitors my implant if this was available everywhere and she thought it wasn't country wide, but might be if you ask. The surgeon put my symptoms down as possible childbirth injuries, but the rheumatologist thought it was probably scleroderma, so I'm not sure what the cause is, but I don't mind as long as I have the stimulator!!
Good luck with getting there. X 👋
Hi Pennypetra I have Scleroderma and I am suffering the same mine is bowels and bladder. Great fun, not.
I have just been to the hospital this morning about it and not really getting anywhere at the moment. Still waiting for an appointment for the Royal London Free. I had an colonoscopy years ago and found I had diverticular disease. Ok I can cope with that, we have too but the last couple of years the bowels and bladder problems have got worse. it is becoming an embrassment to go out.
Yes it can be very embarrassing especially when you are out. royal free is a good hospital. I see Prof Denton but only once a year as it is at an outreach clinic. I too have diverticular disease but it doesn’t bother me too much
Hope this helps. My diahrea seems to be as a result of food I eat. I also have Primary Sclerosing cholangitis, a liver disease and I too have diverticular disease .
About an hour after eating food with a fat or oil component (anything described as creamy such as seafood chowder, pizza, fried food, even something such as a small rasher of bacon or a small piece of salmon with skin on), I have to rush to the toilet with explosive diahrrea and sometimes have to go back to the toilet several times after that with more diahrrea and there is lots of farting. There is no warning - no bloating or pain, its almost as if when fat or oil arrives in my stomach it sets my whole digestive system into a panic! Sometimes, but not often, I get a wave of nausea before the diahrrea. The diahrrrea is a horrible smell.
The same thing happens, but it takes a couple of hours, with christmas cake, wholegrain bread, raspberries, fruit with skins, beans, in fact anything high in fibre and the diahrrea is not as explosive, but still bad.
I think I am going to end up eating only, mashed potato, pumpkin and silver beet!
I cannot eat food with chilli, pepper, anything even mildly spicy it burns my tounge and mouth, is this indicitive of what the rest of my digestive system is like?
best wishes Heather
Poor you sounds awful. I am trying a gluten free diet at the moment. Seems to help a bit but it’s early days yet.
Trouble is that I really love my biscuit and cake especially buns
Thanks so much for your reply
Pennypetra x
Hi Pennypetra, I think a gluten free diet will help you. It definitely settled my digestion. T takes time to adjust while eating healthy.
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