Hi, first time posting here but desperately need some advice. I’ve suffered from IBS for over 20yrs. I’ve had loads of blood tests, scopes, (last colonoscopy 19 months ago), loads of biopsies and everything is clear. I believe mine is stress related, I’m on sertraline (anxiety) and amitriptyline (bowel) and can usual manage with Imodium but nothing seems to be working at present. I can’t seem to get the dosage right as I either have one good day then I’m back to the same problems.
I contacted my GP recently, but she said there was little they could do as all tests fine, but I’m struggling to leave the house. I’m having to rush to the loo with cramps and it’s just water initially, then very loose albeit more of an effort to get rid of. I’m also getting a lot of mucus & occasional blood, not uncommon for me.
I’m convinced it’s IBD as I now also have chronic uveitis which is inflammation in the eyes due to immune system. This condition is linked with IBD but tests are always clear. I reiterated this with the GP but she was not concerned despite my eyesight now beginning to deteriorate. I tend to have a nasty ibs flare at same time as uveitis.
Has anyone else experienced the above or could advise taking Imodium please?? Is it better to just take the same amount a day or as and when? I’m worried I’ll end up with a blockage, especially with current watery stools and then not feeling everything is out? Does anyone else have uveitis & IBS??
Really appreciate you reading this essay, my stomach has never been this bad!!!
Thank you
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Scout
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I wonder if you should try a different doctor. I assume you are seeing uveitis specialist as well. Discuss the situation with him and see what he thinks. There is always the possibility that you have developed IBD since the tests were done.
Thank you so much for responding.Don’t worry, I will not be seeing the same doctor again! I see an eye specialist in hospital as an emergency for every uveitis flare and have steroid drops. I’m waiting to see a specialist to discuss the frequency of attacks, especially as they can see the steroid drops are effecting my eyesight. At the moment I am keeping a good diary and trying to get on top of my IBS before seeing the GP again. Thanks again.
If you persistently get back low calprotecin from your stool tests it is unlikely to be IBD. Since your last test was 19 months ago, you could ask for another stool sample test for calprotecin now, just to put your mind at rest. Assuming you have IBS-D and not IBD, I will pm you some tips.
Thank you so much for responding. I’m currently being very careful what I eat, to try and get on top of this IBS flare whilst attending hospital for my eyes. Thankfully my eye specialist is on the ball. I will request a calprotein test again as it’s been a couple of years since my last.
Hi Scout, After all my tests came back negative I have been taking sertraline for 6 months now and mood and ibs improved. Not had any eye problems as side effect. I wouldn’t have imagined anxiety could make you feel pain but it appears it does. I now meditate every day - not easy to get into at first but well worth the perseverance. Lots of free trials online and you tube have some specifically for ibs.
I take fybrogel alternate days to regulate BM and Imodium now and again if I need to. GP referred me to bowel clinic who were very helpful in assisting me to recognise food or emotional triggers and other cbt support.
I’d see Doc or optician with your eye problem though. Hope you get some respite soon.
Thank you so much for responding. Like you, sertraline has helped enormously with my anxiety but not so much with my tummy! I am very keen on mindfulness and yoga which help too.
At the moment, I’ve stopped taking loperamide to try and get a natural rhythm back into my bowels. I still have to go several times a day but feel a bit better. Plus watching what I eat, and keeping a good diary so I have more ammunition to take back to a different doctor!
Thankfully I have brilliant care from my optician. They refer me to the hospital every flare and I’m seen straight away. I’m currently into my 4th week of steroid drops and go back to see the specialist on Thursday. Ironically they are the ones pushing for the link between my tummy problems & eyes. They’ve referred me for many tests unlike the GP!
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Thank you so much for posting these links. The articles were really interesting and good for thought. I’m going to raise it with my eye specialist in the hospital this Thursday and see whether it’s worth looking into further. The eye team have been incredibly proactive in comparison to the GP! Funnily enough I have cut down on my coffee consumption recently. I should probably work on my tea next!
Thanks again, I found all articles really insightful and a big help.
Scout, as a followup, with emphasis on vision health, these links offer additional information that I hope provide insights and open your thinking for further researching in directions to connect the dots for your health.
Hi Scott, it's very important you see an eye specialist, or at the very least start with an optician, ideally one who has a special camera that can see the back of your eyes. Please, please, however much you have read, don't make an amateur diagnosis about your eyes.
IBS is most often related to food intolerances that can develop over time. Of course anxiety is also relevant, as that can affect your gut. Imodium is mostly used as an occasional medication, I think. I don't know whether taking it every dau can make it become less effective in the long term.
I think meditation, as suggested - going to a course - is a good idea. But even more important, it sounds as if your healthy flora is in serious disarray. Kefir - cultured milk sold near the yoghurt counter in supermarkets, or maybe in health food shops, has helped me a lot. There are two BUTS: firstly you would need to start with maybe a teaspoonful and increase the amount very gradually, as your gut sounds as it's highly sensitised. Also - most kefir is made with milk, so you need to be sure you're not lactose intolerant. It may be possible to get kefir made with water instead of milk?
You are very anxious about your problems. That's totalky understandable. But being anxious, it's not the best time to self-diagnose causes. You are making assumptions which may be wrong. A link with eye problems would be very rare, but doesn't mean it's impossible. Self diagnosis I feel is a mistake.
The correct process for IBS is to start with an exclusion diet, and gradually reintroduce foods which might be causing problems. The Monash University App can be downloaded to get information about diet and there are other resources. Ideally you should see a dietician. You can read up about low fodmap diets.
I think you should seriously consider changing your GP. And although tests probably were necessary, every time you have a colonoscopy, you're further disrupting vital gut flora. If you can't take kefir, very gradually build to at least half a glass a day, and drink daily for about 4 months, then you could try prebiotics, probiotics like Alflorex.. Kefir works best for me - but obviously, if your guts react badly, discontinue or build up the amount very much more slowly.
Although amytriptaline can relax muscles, including the gut, Buscopan is a more usual treatment for IBS. I get that plus peppermint oil pills from my GP.
I also feel that you need counselling to help you cope with the stress and anxiety. You are right, it's a mind/ body situation. But if you are consuming foods that are triggers, that of course also needs to be sorted. The facts that tests are clear is good. But you still have a condition that needs tresting.
Anxious people with IBS need the help of someone more objective and medically qualified. You need a better GP, I feel.
Above all else - it's your gut flora that's the problem just now, I feel.
I do hope things improve very soon for you! I try to avoid both imodium and laxatives when I can. They are aclast resort, because they tend to cause further swings between constipation and diareah. I appreciate you HAVE needed Imodium, but it's a sticking plaster when the real problem includes disrupted gut flora. It's worrying that you have some blood with stools. If you can see blood, it comes from the lower part of the digestive tract, usually, or from hemeroids. Anyone seeing blood with stools should have further investigation. I appreciate this might mean a further colonoscopy or similar. But after that you would need to improve gut flora again.
Thank you so much for responding to my post!I’m trying to avoid loperamide at the moment to let my gut get itself into its own rhythm despite multiple trips to the toilet! I’m also keeping a good diary and watching what I eat so I have more ammunition for when I go to a different doctor.
Yes, totally agree, the whole thing makes me very anxious, not being able to get outside and do the normal stuff, plan things . Ironically it’s probably my bowel that’s making me more anxious than anything else at present.
I’m under a brilliant eye team, and have immediate access to the hospital eye casualty as and when I have a uveitis flare. I’m currently on week four of steroid drops and back to hospital on Thursday. It was the eye team who referred me for colonoscopy, bloods and lung scan as they are certain it’s all linked due to severity of eyes & bowel problems. It’s all rather strange but it’s scary knowing you might lose your sight due to the condition or the prolonged use of steroids.
I run (badly), practise mindfulness and do yoga. I’ve had countless counselling sessions. My daughter fell seriously ill 7yrs ago ending up in hospital for 4 months, had a liver transplant and a slow recovery. They think the stress, poor diet, sleep deprivation and subsequent anxiety has resulted in PTSD and tummy problems. I had similar issues when I nursed my mum with cancer, then dad cancer. I try really hard to eat well albeit not always easy when a hospital stay can happen at any time. We have to find our own food, usually fast or microwavable. It’s strange as I never have an attack whilst in the thick of it. Adrenaline keeps me going then boom, my bowels go nuts.
This recent flare has been far more intense and relentless. I have no idea if the eyes set off the bowel or vice versa. I’ve heard good things about Kefir and will investigate further as I totally agree, my gut needs some help. I’m still getting small amounts of blood probably from where my lower colon is inflamed or a haemorrhoid. I will persist with a different dr though once I’ve kept the good diary for longer.
It’s crazy how intricately the brain & bowel are linked. The bowel is complicated thing. Friends of ours who have had bowel transplants, have a rough ride compared to others!
Thanks again for your advice and support, I’m very grateful.
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