Looking for opinions I am 44 yo and have had problems with diarrhoea since I was 18. At 18 I had a very severe case of glandular fever and I have had problems ever since with fatigue, the diarrhoea, painful joints, dizziness, the list goes on...
I was continually seeing my GP, I couldn't go out much (definitely not like my 18 year old mates!), the diarrhoea was a real problem - up to 10 or more times a day, running to loo during meals or straight after, woken in the night with it - always diarrhoea, never constipation. I had stool samples tested and I had a camera up my bottom and told both were normal and that I had IBS then left to get on with it.
During the intervening years I've had 2 children and coped as well as I could. However, last year I very noticeably lost weight and started to look very ill. I've never been big and am classed as underweight anyway, so I'm not sure how much weight I actually lost, but it was enough that friends and family started to say I should really go to see my GP.
Fast forward to 2 weeks ago when I was diagnosed with ankylosing spondylitis - an MRI showed it very clearly, I was offered the heavy duty drugs immediately. I've obviously been living with it for a very long time. I declined to go on the big boys yet though as I have been taking naproxen and omeprazole and that has improved the fatigue no end. My condition is only going to get worse, so I want to keep the heavy stuff for later when I really need it! I do (and have done for years) yoga and this has been helping my condition considerably.
Many people with AS have IBD and this is why I am pondering - IBS or IBD? I told my rheumy that I had a camera up my bottom and she wrote to my GP that I had a colonoscopy that was entirely normal. I haven't - I had (from what I can gather) a sigmoidoscopy. My test took 10 mins max, I had no sedation and I did not have to drink anything beforehand to clear me out, so I know it was not a colonoscopy!
The (I presume) omeprazole has also completely stopped all my diarrhoea. Since starting it (5 months ago) I have had 2 episodes when I had to run to the loo and since cutting out all alliums and pork plus peas (a prolonged food diary I was doing showed eating these seemed to correspond with really urgent diarrhoea as opposed to just fairly loose stool that wasn't so urgent) I have had no problems. I raised this with my rheumy but she's a rheumy not a gastro so she couldn't offer any explanation. I could just keep taking the omeprazole but when I come off the naproxen for the anti-tnf drugs, I'm not sure if I will be able to just keep taking it? And if I have IBD then really I want to know and see the correct specialist to get the right treatment!
Does just 2 tests, warrant a diagnosis of IBS or should I request further investigation? I have never had bloody stools, just very loose, urgent, lots of mucus, highly fragrant, explosive (it's just lovely talking about this isn't it?!) and I am not clear if the lack of blood rules out IBD?
How active is the diarrhoea at the moment? there is a stool test called a faecal calprotectin test that measures the inflammation in the bowel from cells passed in faeces. however if you are in remission it will come back with a low result that wont show anything.
you def need a full colonoscopy with biopsies to help diagnose IBD, unfortunately many IBD sufferers are misdiagnosed with IBS for many years. As you have said, AS is linked with IBD, so I think you should be investigated further. interestingly you say that you were getting up in the night, IBS does not cause nocturnal stooling - or even weight loss. Have you ever passed blood? again this does not happen with IBS.
The omeprazole wont help with the diarrhoea, but if you had excess stomach acid this will of definitely contributed to the diarrhoea as the acid is a massive irritant to the bowel, so by reducing the amount of acid you produce will help in reducing the diarrhoea. Unfortunately if you were to have a flare up of IBD the diarrhoea will continue regardless
You can take omeprazole with anti TNF, and in fact anti TNF meds are used in the treatment of IBD. so it may be worth considering the anti TNF, it will def be a great help with the AS. Also naproxen is not a good idea if you do have IBD - sorry!
Hello - yes definitely helps thank you! I have no diarrhoea at all at the moment and haven't apart from the 2 episodes in the past 5 months while being on the omeprazole and naproxen. I need to discuss the anti-tnfs further with my rheumy - I was so relieved to be finally told there was something that was causing my symptoms and it was emphatically NOT all in my head that I didn't ask many during my last appointment!
I do not and have not passed blood ever in a stool. I'm leaning towards it being an acid issue... I just found an article on bile acid and diarrhoea and the case discussed sounded like me My father has had severe issues, I guess linked to stomach acid: he had a hiatus hernia and a duodenal ulcer and had to go on a cocktail of drugs that was at the experimental stage as conventional treatments were not working. I will definitely speak to my rheumy about referring to gastro to discuss further, hopefully she can do it and not my rather useless GP surgery! Thanks for your answer! x
Hello, I would reconsider the anti-TNF/Biologics drugs for your Ankylosing Spondylitis if that was the treatment suggested, there is a chance of other issues can develop, it can also affect the eyes, heart, lungs, and occasionally the kidneys. I think your situation requires a more thorough investigation by a gastroenterologist, I would push to get an appointment, a colonoscopy can at least rule out or rule in other disease. Good Luck!
Hello! Rheum was happy for me to stay on the nsaids for the moment and gave me leaflets regarding the drugs on offer. Takes a while to get your head around it all! I see her again in January and by then I should be better informed so I can properly discuss the treatments on offer. I've joined the NASS and just waiting for my info pack to come through - hoping that will be a mine of valuable information! I've decided to visit my GP anyway as I need to be referred for special insoles for my feet so will also request gastro referral at same time. The upside of being diagnosed now is that suddenly all these medical types are taking me much more seriously
I believe it is very common to have IBS and UC together. I suffer from constipation and told IBS for years. Then diagnosed with UC this year after a colonoscopy. Gastro advised me to try the FODMAP diet under a dietitian. Things have improved considerably.
Hi not having blood in your stools does not rule out ibd i have mild ulcerative pan colitis no blood ever but have had mucus, to check if you have ibd is usually checked bye having a colonoscopy with a completely empty bowel
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I am 44 yo and have had problems with diarrhoea since I was 18. At 18 I had a very severe case of glandular fever and I have had problems ever since with fatigue, the diarrhoea, painful joints, dizziness, the list goes on...
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Causes of high calprotecin levels?
