Thanks Sewingchick, I for one have been grateful for your posts as I have had some weird things happening with by bladder and bowel for ages now. Not major problems, thankfully but enough to think ’ is this normal?'. Now I feel it’s not all in my head and that it is ms related.
Mags xx
Sewingchick, this Is the one safe place where there is no too much information keep talking to us. I hope people have given you the support you needed. Just wondered if you had looked into lemetra, there is a fb page and people seem to have seen some good improvements in there bladder, bowel issues. I know this isnt for everyone and knowing how informed you are you may have already discussed this xxx
I’m not bothered; maybe too much for some people, but I can totally relate to the vagaries of bladder and bowels and live in eternal fear of embarrassing incidents. Realising that I’ve been engrossed with something at work, and suddenly realising that I need the loo, and it’s debatable whether I’ll make it along the corridor to the facilities in time…! Thanks for having the bravery to be so honest.
Sewing chick - I am glad you started this thread.
I was normally as regular as clockwork pre MS but following the big relapse that led to diagnosis everything changed. I was numb from the waist down for some time, I think my brain lost contact with my bowels for a while and I suffered from constipation despite a reasonably healthy diet. I had to cut out caffeine because it wreaks havoc with my bladder but it turns out it’s good for my bowels so sometimes I’ll have a strong coffee to get things moving. The worst thing for me is the flatulence that happens when I’m constipated. I discussed it with my MS nurse once and her only comment was ‘constipation does have a particular smell, doesn’t it?’. Yeah, so bad you want the ground to open up and swallow you.
Things were just settling down when I had 2 further relapses about 2 1/2 years ago again affecting my lower limbs. I have been struggling with GI and bowel issues ever since. I even had a gastroscopy and endoscopy but they were clear. I kept a food diary and eliminated the foods that caused me the most issues. I am now gradually reintroducing some foods as things are beginning to settle down and I’m nearly back to normal.
I am beginning to think it must have been an MS thing because I can now see a pattern. It seems to take a full 2-3 years after a relapse for my digestive system to settle down. I really hope Gilenya continues to keep working for me because I’m just beginning to get my confidence back. It’s strange how fear of an accident or flatulence can really affect your mood.
Tracey x
Hi i am new to this site. But have had M.S for 15 years now. What a brilliant site.
I too suffer with bowel problems. I was also been diagnose with ulcerative colitis about 6 years ago. So its a bit of a war of the worlds some days. I was told not to eat the peel or pip’s of any fruit, or tomato’s. This has helped. But after a flare it does take a while to get back to a near normal as possible. And it is very, very painful, and tiring.
It is nice to know we can talk openly about our bodily problems.
Sewing chick thanks for sharing with us . Nice to know we are not alone , Some things are hard(scuse the pun) to talk about with family members.
Senora