I've been on rituximab and Lefludomide for about ten years and all is reasonably stable. However over about five years I've developed IBS symptoms - wont repeat them here. They do limit what I can do and wonder if anyone else has suffered from them. I'm not convinced the meds are to blame incidentally, I'm more interested in the experience and any treatment which works. I've just started peppermint oil capsules.
I have no other scary symptoms so would prefer you dont add to my normal anxiety with dire warnings. Just asking for peoples experiences.
Thanks for any responses
Cathie
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cathie
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I've had IBS-C for many years (from my 20s) and found that Colpermine (peppermint capsules) helped a bit. Eating porridge for breakfast seems to help too and avoiding my trigger foods - garlic and anything spicy for example. It went into overdrive with peri-menopause but thankfully HRT helped with that and the other horrible things I had.
More recently, I've found that it's been much better since Sulphasalzine was added to my other DMARDS 🤞😁
Thanks for that, I've just started the peppermint capsules although I understand they take a while to work. Have a 4+ hour car journey to the Highlands tomorrow and am hoping to keep things under control. My partner will be happy for me to join him with porridge for breakfast! I hope yours continues to be well controlled.
Although it's pretty unpleasant, I think that the C- version is probably easier to deal with when out and about! The cramps and yuckiness did spoil quite a few holidays over the years though 😔 At least it's better recognised now though; it wasn't accepted by many back in the 1980's, even medics.There was a book I found very useful - Irritable Bowel Solutions by Professor John Hunter. There's also a gastroenterologist called Dr Peter Whorwell at the South Manchester Functional Bowel Service who has done lots of groundbreaking work; I emailed him in desperation when wondering whether to start HRT and he was kind enough to reply with advice so it might be worth having a look at their website
Oh that's really interesting because sulfasalazine helped my IBS symptoms too. Unfortunately I developed other intolerable side effects that meant I abandoned it after 8 months and the tummy trouble returned.
I know SSZ is used to treat inflammatory bowel disease so I wondered if that meant my IBS was actually IBD - I have AxSpa/PsA which is stronly associated with IBD. But it's interesting that someone else has found IBS relief from sulfasalazine too.
I will check the S Manchester people thanks. If you have any hints about travelling they'll be welcome. Its a long, sometimes v disrupted road, but we know the various stopping possibiliities fairly well. The Highlands aren't exactly overendowed with services though - which is good in most ways!
Yes and I sympathise because mine is particularly bad at the moment but mine developed long before any medications I took. I have IBS-D (diarrhoea dominant) which is really having an impact on normal life right now.
I was prescribed buscopan many years ago, high strength tablets that were much better than the ones you can buy off the shelf. But to take it at high enough doses that it worked meant I suffered drowsiness. So they tried me on mebeverine. Not that effective and sent me a bit bananas. So since then I've just been tolerating it without medication. Peppermint oil capsules are good as I recall and I probably should try them again.
Elimination diets were fine at the start but now I find there's no predicting which foods will set me off. I do wonder if I have developed more of an inflammatory bowel disease (my IBS symptoms disappeared when I was on sulfasalazine) but I just want to sympathise because it is, literally, a pain in the arse.
I hear lots of positive things about a FODMAP diet for IBS but if you can work out a balanced diet based on FODMAP rules and stick to it, you're a better woman than I.
I’ve had IBS for years - I’d say I tend to lurch from D to C and it’s totally unpredictable. I’ll just suddenly know the C has arrived - very weird. I’m only taking hydroxychloroquine, I had IBS years before I started hydroxychloroquine and I don’t think that has made any difference to my IBS
The thing I have found that had the best result was go8ng totally gluten free when I was first diagnosed with inflammatory arthritis in 2014. I had just gone inti remission from Graves’ disease - autoimmune overactive thyroid with antibodies and I did it mainly to reduce my thyroid antibodies which it did, I tested at three month intervals and once they started to come down no way would I have gone back to eating gluten. I was never tested back then and I’m not going to eat gluten to be tested. I haven’t found it difficult or expensive to be totally GF - I had friends who were coeliac so I knew how to cater from them, I don’t eat GF cakes and biscuits etc and I’m lucky enough that I have time to can cook everything from scratch.
Anyway, as well as reducing my thyroid antibodies I realised that being totally GF had calmed down my IBS. I found peppermint capsules didn’t do it for me at all, I have used Buscopan if I need something and if I feel C coming on - no reason I’ll just know I’m constipated all of a sudden for goodness knows why - I like Fybogel to drink or I’ve discovered Fybogel tablets which seem to work well. Have to say I find IBS-D easier to deal with, I hate that really bloated stuffed up feeling I get with IBS -C where I try to eat everything I can think of to get me moving - yuk! I’ve also had a few attacks of diverticulitis in the last year or so which is why I particularly like to keep regular. Like rmros says it really is a pain in the a***e or for me more a pain in the gut. Hope you find your solution - think it’s probably highly individualised - I did read that kiwi fruits help.
It’s too late for you now but the best thing we ever had was when we had our camper - it was literally like having a mobile loo. 😉
I can’t comment on the effect of the RA drugs on ibs but had ibs for 40 years. I swear by dicycloverine. Prescription drug. Thankfully don’t need to take it too often now as learned how to adapt my lifestyle (such as standing/walking after eating) and which trigger foods/drinks to avoid. Good luck. Peppermint oil didn’t do it for me. I was offered it by hospital when I was first diagnosed as there was little else available then. PS following a bowel prolapse I live on lactulose. The gentlest by far. I can’t take other laxatives as they aggravate ibs.
Hi, I've had RA 28 years, and a few bowel issues through the years. Been on Rituximab since Feb 2019. Had Diverticulitis diagnosed in 2018. Bad flare mid 2021, after 2nd covid vaccine, needed antibiotics. Bloods also showed I had low folate. Course of 5mg from G.P helped. I now take a small dose 400ug, almost daily.
I can relate to this but I had IBS before I was diagnosed with RA however a year ago it got worse and a CT scan showed diverticulitis of the colon. Also I'm having a colonoscopy soon as RA is linked to microscopic colitis. Now before you start worrying this is my story not yours. I deal with it with prescribed Immoduim. I don't know how IBS affects you either bunged up or toilet trots. If the trots try immoduim for the journey and watch the diet. If it is MC which I hope it is I will have 3 months of steroids . If you find it's difficult to deal with see your GP.
If it goes on too long see GP for blood and sample tests.
I share your anguish here. I suffered too since 2014. Eventually after 2 yrs of suffering I was given anti biotics which helped enormously . However it left me with a long loopy bowel and I now get d or c. Try kefir, kimchi , and pro biotics. RA means inflammation. I suspect many of us have sensitive guts as a result.
hi, Cathie! I’ve had stomach issues since I was a child. I’m now 77 and still have issues. When I had my gallbladder removed I was running to the bathroom twIce after every meal, plus. I have peripheral neuropathy in both legs for which I take gabapentin. Mentioned to my dentist and he told me to ask my doctor for Cymbalta/duloxitine. I take 30 MG of duloxitine once a day and it really helps my legs get through the day. HOWEVER, a side effect is it helps control my bowels so that they are close to normal now. Who would have thought that a drug initially meant for anxiety would help both my legs and bowels. Just sharing my experience. You can ask your doctor what he/she thinks. Best wishes! 🤗
thanks everyone. Put my journey management skills to the test - 4 hr journey turned into nearer 6 when our 2 year old car broke down outside Inverness. My partner’s still waiting, he got me a taxi
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