Hello Everyone, I haven't been on here for a while now but I've been recently diagnosed with IBD or Crohns (they haven't decided yet!) and I wondered if anyone else out there has this problem alongside their arthritis? I've been referred for urgent appointment with gastro clinic and am awaiting that but I wondered if I could make changes to my diet in the meantime that might help? I've been wheat and dairy free for many years now and eat very little red meat - has anyone else found changes to their diet has helped and if so, what have they done? Any help, tips or advice would be most welcome - this diagnosis seems to have knocked me for six as it's just one more thing I have to deal with on top of the arthritis (which is bad enough!) Thanks everyone......Allison

BTW there is an organisation to support sufferers, Google 'Crohns and Colitis UK'

Hi Alison

I am sorry to hear you may have IBD or Crohns on top of the arthritis, it's not fair is it? If it is Crohns the same drugs used for rheumatoid will help the crohns, especially the anti-tnf therapies, I don't suppose you are taking an anti-tnf drug?

I've had bowel issues on and off over the years but never any diagnosis. But considering that over half our immune system lives in the gut no wonder alot of us get bowel issues. I had some food allergy tests done through higher nature last year because my symptoms were quite bad, I had a few intolerances to certain foods i.e milk, pineapple, yeast. Since removing them from my diet it has helped alot and it seems to have settled again. The low residue diet that Paul has recommended sounds a good idea, have you found probiotics help Paul?

I hope you can find a way forward Alison, best of luck.

Rebecca

Thanks everyone - especially Paul - what you say is very interesting and I will look into low residue diet. Yes, I am on anti biologic - simponi as well as mtx, which I know are the same treatments as for crohns and ibd....so I'm not sure what else the gastro clinic can do to help. As I mentioned, my diet is already fairly restricted but I'm willing to try anything that may help! Thanks all.

Hi Paul, I was put on sulfalazine when first diagnosed with RA but couldn't tolerate it. I have read that manuka honey can be good for an inflamed gut - have you tried this? Many thanks, Allison

Haha! I, too, have a sweet tooth Paul! I'm just wondering if reducing sugar may show some positive results - just reading up on dietary info on the Crohn's and Colitis UK website at the moment......thank you for the link - it's a great website.

Hi Alison

I am getting some relief at the moment but not in the best of ways. About 15 months ago I was put on MTX oral which had no effect so in March 13 I was switched to MTX injectable. The first dose made feel weird, the second weirder still and the third dose put me in hospital. A few weeks later I had the mother of all flares and ended up in A&E again. Out of desperation they put me on a very large dose of steroids (40mg) which certainly helped . The Rheumies wanted to start me on Humira but before they could get approval they needed to see an MRI of my lower back showing the inflammation. They could not get that because the steroids masked it. Since then I have been on a step reduction programme to get me off the steroids. It has not been easy, and several times I have been forced to go back up and then reduce more slowly.

So to cut a long story short I am not yet on any kind of permanent treatment plan. The enthesitis pain really gets to you doesn't it? At any time pain can appear in almost any part of your body.

I have had some acupuncture which helps.

Yes, I am on naproxen and I believe that's what has kicked off my gut issues. I am on slow release morphine and Oramorph too but still at the tweaking stage to get the combination right - at the moment it's 30mg twice daily with other painkillers thrown in. I can't take steroids of any kind as they give me crystal flares which are incredibly painful. Like you say, it's a real struggle not to let the pain of enthesitis get you down as there seems to be no real treatment for it. My rheumie has been trying for years, talking to consultants from all over the world to try and find a treatment that will work but has found nothing so far. It's a case of managing the pain as best as possible I feel. Do you mind me asking how much morphgesic you are on and how much do you too that up with Oramorph? I'm a bit shocked to be honest at how much I seem to need - I don't expect to be pain free but I would like to be able to live life just a little bit normally! You've been so helpful Paul - thank you so much.

I'm still waiting for an urgent appointment with gastro consultant - apparently, the urgent waiting list is 6 months! I have tried to come off the naproxen myself but I simply cannot function without it. But I have had several gastro issues since starting it a year ago. I was on disclofenac before that and had no trouble at all but they weren't happy to keep me on it due to the heart risks associated with it. It really is a huge experiment isn't it to find the right cocktail of drugs?

Diclofenac is also an NSAID so is contra indicated for people like us. The interesting thing in your case is to know whether the IBD is a direct consequence of the NSAIDs or is a primary condition that is being exacerbated by them.