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Bowel issues anyone?

I've had awful gastric problems for well over two years. A colonoscopy a year ago ruled out any of the usual suspects. I have now been referred to gastro ( thank goodness!).

I have had chronic loose (not watery) motions. Also wake up with terrible headache and vomiting. There's pain when I eat. I also had blood when I went to the loo the other day. This freaked me out!

Doc gave me the usual examination (not a barrel of laughs!). I got distinct impression he didn't believe a word I said. He's not that worried since colonoscopy was OK last year, which is fair enough.

I can't help feeling it's all tied in with the inflammatory disorder. I don't see gastro until August. Rheumy tomorrow.

I have so many symptoms these days I feel doctors switch off when they see me. It's tricky when you don't fit a particular pattern.

Anyone else have gastro issues alongside the inflammatory problem?

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What medictations are you taking? I had the same problem when taking leflunomide and mtx at separate times. My Rheumatologist in the UK stopped mtx as I was vilently sick and spent most of the day on the loo

Here in Canada my Rheumatologist stopped leflunomide felt sick but unable to leave the house needing the bathroom all day

It could be the side effects of one or more of your meds. I checked the side effects list that comes with the mediction.

Good luck hope you find out what is causing the problem soon.

Sue

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Thanks so much for reply.

The issue started before I started dmards. Though the gastroenterologist write to GP suggesting I stop the leflunomide. I've only been on it a few months, however I've stopped it anyway.

I do wonder if it is drug related. I stopped taking a drug I'd been on for years, two years ago. This particular drug is well known for causing gastric issues, including pancreatic problems. Interestingly, my pancreas isn't producing quite enough enzymes.

Also interesting, though probably coincidentally, all my autoimmune issues started after I stopped drug.

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Suspect drug nothing to do with autoimmune issue. I was on it for ten years!

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When I had bowl problems I put a message on here and several people responded saying they had serious problems and had to stop leflunomide right away. I haven't had a problem since I came off the medication. Sulfasalazine is effecting my INR tests as it causes your blood to become thinner. I was on Apixabam the gov't here only pay for 6 months so back taking warfarin again.

Good luck Sue

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Yes I have tummy issues and have done for many years. Mainly ibsC.

However this year it all changed and I started with right side abdominal pain just under my ribs and diarrorea. I had an u/s scan to rule out gall bladder problems etc. After a couple of months pains got worse, then nausea started. The nausea was awful, even putting a toothbrush in my mouth would make me gag. I'd wake up with it and it would last all day. Eating tiny amounts often helped (but not good on waistline!).

Finally I had a gastroscopy. All was healthy and the gastrologist suggested I try the FODMAP elimination diet, see if that helped. Two days without gluten or dairy and all my pains and nausea went and they haven't come back. I'm just starting to add dairy back in and so far so good. Worth a try to see if anything is irritating your digestive system. I had two biopsys taken for coeliac during the gastroscopy, both came back negative, although I know I have a problem with fibre in wheat based products (cereals, bread). Going gluten and dairy free didn't help my Rheumatoid disease in the slightest though.

Many of the medications we take, especially oral steroids and antiinflammatories can cause digestive system problems. Could that be a factor for you? I'd been taking an acid reducing tablet, Lansoprazole, for a long time and it was also suggested I stop that (I no longer take steroids or anti inflammatories). Maybe stopping that tablet helped me, I don't know.

I hope things improve for you soon. It's miserable having to cope with this on top of Rheumatoid disease.

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The RA meds are hard on your gut, there is no way getting around this but instead of increasing your arsenal of meds, that most probably have adverse effects and so on, you could try nontoxic ways to protect and support your gut. Diet change being a central one. Taking Colostrum powder every morning on an empty stomach often helps. Eating grated carrots daily helps enormously both with enzymes and gut function.

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Hi Nettac. Wondering what's happening with your diagnosis? Looking back, I think you've gone from RA, to PsA to undifferentiated arthritis and also had fibromyalgia tacked on for a while.

What occurs to me is that PsA is very often associated with GI issues and as for the loss of toenails which you mention in a previous post, that is classic PsA territory. And I think (I'll check) that 'undifferentiated arthritis' is pretty much a cagey PsA diagnosis anyway. Do you list all these symptoms at your rheumy appointments? They definitely need to be presented as a collection.

I'm not trying to push you in the direction of PsA. I hope you do not have it, I have no professional knowledge etc. etc. However as someone with PsA I reckon it would be a good idea to mug up on PsA and, if you agree that all these symptoms COULD fit under that umbrella, to strongly ask your rheumy what he or she thinks about that possibility.

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Okay, looks like 'undifferentiated arthritis' basically means they don't know. There's no more of a link with PsA than there is with RA from what I've found. But anyway, some rheumys have a very, very annoying 'PsA blind spot'. And therefore need to be pushed to thoroughly consider it. Then there's the option of a referral to a different rheumy. Never an easy process, often a very rewarding one.

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Hi there

I personally think I have PsA. Ive also had dactylis (sp?). I'm really not sure why everyone is faffing about with diagnosis to be honest...but what the heck do I know!!

Seeing rheumatologist today,as ortho, plus GP asked me to be seen earier than my Aygust appointment.

I now also have bilateral hip damage, swelling and fluid on the knee. Weird rash on palm of hands, back pain, and burning sensation down right thigh. Apart from that, I'm fine!

I have this morning looked at all my blood tests over past couple of years, and will be asking questiins about these results.

My bloods were all fairly big standard normal until about 3 years ago. Crp bounces around, but has never been higher than 73.

FBCs often out of range including lymphocytes, haemetocrit and RBC. HMHC is frequently out of range. I wouldn't be worried if this was normal for me, or just the odd fluctuation.

To say I'm a bit fed up is an understatement. I can't wait to see the gastroenterologist. I just feel there's something not quite right.

Thanks everyone for thoughtful responses.

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I feel there's 'something not quite right' too! If it's PsA you should be able to progress to biologics pretty quickly I'd have thought. If you get blown off again, I'd say seriously consider a second opinion i.e. change rheumys.

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Hi - I have developed IBS-c over the past few years, after my diagnosis of RA and while I was off all related medications. I think, in my case, the trigger was the removal of my gallbladder, a period on steroids for six months followed by an episode Guadiasis caused by untreated water. However I was rediagnosed with primary Sjögren's last year and my new rheumatologist thinks my problems are caused by dysmotility - not just related dryness - but apparently my autonomic nervous system is affected by Sjogren's meaning that things don't happen as they should for many with my disease.

Similarly to what Postle says about PsA, many rheumies have a Sjögren's blind spot, particularly if it's secondary to RA or Lupus.

IBS can be a common add on with all connective tissue diseases she explained to me. This would maybe explain why it came on when I was off all immunesuppressive drugs and steroids. Many other diseases and conditions cause IBS d or c (or both) - especially those affecting the autonomic nervous system such as Diabetes, Parkinson's, MS, Sjögren's and Lupus, PsA and sometimes RA too. Basically my brain and peripheral nerves don't always trigger the correct responses to enable me to swallow, digest, poo or pee or sweat. Maybe same for you. In my case this results in haemorrhoids hence the occasional bleeds. I rely heavily on Lactulose and liquid Senna and stick to a Fodmap type diet. These all really help.

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Yes. Although I had watery, bloody diarrhoea. I had a colonoscopy with biopsies. The gastroenterologist said all looked well but he sent off the biopsies and it turned out that I have lymphocytic colitis. It can only be seen under a microscope. And when I told the rheumatologist, he said that tied in with Spondyloarthropathy/PsA. Also, never prescribed Leflunamide because he said he was concerned that would cause the colitis to flare. Clemmie

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Thanks Barrister

I feel totally deflated today after rheumatologist appointment. I clearly have both osteo and inflammatory arthritis in hips a knees. Also had bikateral Achilles tendonitis, plus rotator cuff tears both shoulders, and toe issue already mentioned.

I have not seen gastro yet, but he sent a letter to GP, who had sent test results on to him. Gastro said there was a lot going in and suggested stopping leflunomide. I discussed with GP and the decision was to stop given my bowel problems.

Rheumy today said I should go back on it because I'm running out of options. I just couldn't be bother to argue with her. I just took the prescription and left. Seriously? Out of options after two dmards? I can't take methotrexate, but there are other things surely?

I'm not taking the leflunomide until I've seen the gastroenterologist. The darn stuff will still be in my system when I cark it anyway! I can't believe I'm expected to take a drug with gastro side effects, when I clearly have something going on with my stomach.

I've been on leflunomide for a good few months, and in that time had swollen painful joints, even after it was increased. Since I've been on in there has been hip damage. Makes no sense.

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Apologies. Quite tired and grumpy.

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No apology necessary, sometimes it's like banging your head against a brick wall. I would say that even without your stomach problems, the Leflunamide isn't working as it should be. Maybe, after you've seen the Gastroenterologist, your rheumatologist will be a bit more helpful and if not, ask for a referral elsewhere. Clemmie

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Oh yes. My rheumy has me on Prilosec. I have to eat slowly to prevent indigestion. It doesn't work. My bowels get blocked from time to time as though they are twisted or swollen. Just more auto-immume symtoms. I have RA.

Colonoscopy was normal.

Doctors are unconcerned.

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Sorry you're struggling. 😞 Has anyone told you about a leflunomide wash out treatment?

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Rheumy wants me to stay on the wretched stuff. On the one hand I'm told it stays in the system for yonks, and on the other that I should feel better after stopping it for ten days!

Rock and a hard place..

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I wonder why (if its stays in the system) I have to take it daily? I'm contemplating just taking it twice a week to see if it's better.

I was told I'm running out of options, and feel disinclined to rock the boat, incase I'm dumped!

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Hi

I'm seeing gastro in August. It looks like I might not be producing quite enough enzymes (something to do with pancreas) though not proved yet. I won't take anything until I've seen gastro.

Interestingly, my gut feels better if I just eat blended veg soup!

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If all comes back clear I might try the products you mention.

Thanks so much.

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Did your gastro check your digestive system from the top as well i.e. an endoscopy? Pain when you eat, bowel trouble etc could be an eosinophilic disorder. I have these two things and have eosinophilic oesophagitis. Some have a colitis version which causes bleeding. Just an idea

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Hello.

I don't see gastro until August. I'm hoping he'll be thorough.

From bloods, it looks like my faecal elastase is on low side. Apart from that, none the wiser until I see gastr.

Thanks for reply.

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Hi Nettac, I can see this is an old post but was curious how long you were on leflunomide? I have RA and have had chronic Diarrhea for 6 weeks now, I’m awaiting colonoscopy. As I’ve been on this drug for around 5 years they have disregarded this being the problem. But I have had severe reactions to other dmards after being on them for a number of years, so I wouldn’t say this is impossible? Hope by now you have a diagnosis and health has improved.

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