Briefly. About three years ago I started suffering from continuous watery diarrhoea which got worse and worse and I was going to the loo fifteen to twenty times per day, but mostly at night. I suffer from IBS, which is part of the condition and I lost a lot of weight, and was, and still am almost constantly tired. I was diagnosed with microscopic colitis, both lymphocytic and collagenous, (there are only two types) which my consultant told me was “interesting” since in his fifteen odd years as a gastroenterologist was the first time he had come across it. The vast majority have only one type. I won’t bore you all with more details, suffice it to say I get up mostly about four or five times per night (often more, occasionally less) with diarrhoea. I came across an article on a BBC website about a month ago, (which unfortunately I now can’t find) saying that microscopic colitis is probably the most under-diagnosed condition around, with about 70,000 sufferers diagnosed, and many more undiagnosed. Which is by any standards, a lot. It is a further problem, because I believe that with so much diarrhoea, it must be difficult for the gut to absorb the nutrients it needs for us to remain healthy. I’m about to try and see the consultant again in order to discuss this problem, which at the time two years ago, didn’t seem to bother him. Well, its bothering me now.
My question is this, with so many sufferers around, a lot undiagnosed (a colonoscopy alone is not enough, there needs to be biopsies taken since, speaking personally, my large intestine appeared to be perfectly healthy) might it be an idea to start a forum dealing with microscopic colitis, and if so, how do we go about it? Any thoughts from microscopic colitis sufferers out there, and also any IBS sufferers who would like to pursue this. It is a chronic problem, with not a lot to be done, (there is a treatment, but once the treatment is over the condition usually returns) but my feeling is if there were a forum on here with the same problem, there’d be an awful lot more help from the forum than from the medics. I suffered from polymyalgia rheumatica about five years ago, and got far more help from the forum on HealthUnlocked.com than I did from the medics, so I speak of that which I know!
BSG.org.uk is the website that gives information about the condition, (amongst many other gut related conditions) and there is a brief video by a Professor Chris Probert about the treatments for microscopic colitis which might be of interest.
Any takers?
Written by
IzzysGran
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Thank you so much for sharing your story and highlighting the possibility of a cause for many people with IBS -D .You definitely aren't boring us with your story , in fact , it might help people whom are suffering like you to learn more about your experience of how it was diagnosed , what to ask the GP or Specialist to look for and test, what the treatment was for you , and what tips you have to keep it under the best control you can. So more posts from you on this would be amazing. You are right about the worries concerning our nutrition and the possibility of becoming deficient in things we need which could trigger more health issues.
It is so common to get that nonchalant response from doctors whom seem to forget it would be better for us all to prevent new health problems rather than shrugging off tackling it and only dealing with the problem when it arrives.
I have various metabolic and absorption issues from my Ehlers Danlos and it's effect on my gastric system which has caused IBS- C , slow gastric motility , a gall bladder removal and the reduced metabolism of nutrients , eventually being found to be B12 Deficiency Anaemia and Vitamin D and Folate deficiency which over many years effected how my body worked altogether. I noticed when I had become more knowledgeable ,and checked over two decades of notes, that borderline low and deficient results had always shown up in my blood but they were either brushed off as possibly a blip because of dehydration or an infection , or, just treated short term with oral supplements that I still wasn't absorbing. Even though you could clearly see from my blood results that standard oral supplements weren't working and I was noted to be malnourished. They assumed that was because I was thin and probably not eating , not that I was thin because of metabolic malnourishment despite eating.
Yes. the illnesses had made me very thin , but part of that was not because I wasn't eating as healthily as I could , but because I wasn't getting the nutrients I needed from the food I ate which made managing my symptoms , pain and fatigue so much harder , and it eventually triggered more severe issues with my heart , circulation and muscles.
I now receive B 12 injections , two monthly because of my neurological symptoms, but within weeks on the loading doses my energy soared and pain and numbness reduced.
I started on iron infusions but don't need those now because the B 12 and Folates do the job again to help me absorb more of my nutrients and medications including Active Iron. I get Vitamin A for my Dry Eye Syndrome via a nighttime eye lid gel because I am not good at processing any fat soluble vitamins. I take many single supplements in the right combinations after the right foods in a meal to maximize the most absorption from them. I use a Vitamin D and K 2 and Magnesium oral spray because it has more chance of entering the body than a tablet . I take probiotics to also improve the time food is in my gut and to reduce bad bacteria causing more inflammation preventing nutrient absorption .
All of my supplements are in their most Active , or Simple form. These are easier to absorb or reduces the need for one of the metabolic steps which is often the one we aren't good at with digestive issues. Particularly useful if you have IBS-D , fluctuating IBS, or other digestive or connective tissue issues that effect metabolism or passage of nutrients over the intestinal lining.
If the supplements in the right form are available via health care I get it prescribed , if not , that's the ones I pay for to reduce how much I need to spend.
If it isn't working I get the injections or infusions for it from what is available for people with metabolic issues via health care by being able to prove the need from having blood tests done before and after trying various oral routes. If I could afford it I would be able to do more.
I have had to push for most of my changes , pushing the NHS NICE guidelines for treatments I wasn't being offered politely , but firmly, under the noses of my health providers to get the preventative, long term help I need to stop the rot. Bizarrely , although there are preventative IV vitamin cocktails and infusions available on the NHS which would help people with chronic health issues that cause malabsorption, they are usually only prescribed for a very few critical diseases or while recovering from kidney issues, dialysis or cancer rather than sensibly being used earlier on patients to prevent them getting to the point of needing dialysis or feeding tubes etc earlier than may have been necessary. In the end it isn't just bad for the patient , it's a false economy for the health service as big pay outs of more complex treatments years ahead cost far more than a monthly amount on prevention.
I had to do most of my changes by myself , as I was never sent to a Dietitian even though that would help people a lot with IBS and other undiagnosed digestion problems.
When I did get to one I had already done the hard work and unfortunately, as is often the case in a pick and mix health care system , the dietician I saw had no experience beyond the basics. So I say ask to be referred to a dietitian for help by your GP or gastroenterologist but read up a little first so that you are armed with a list of things you want to try when you arrive. Dietitian's will at least order the surgery to do the tests that often GPs refuse to , like stool analysis , more detailed biopsies at a colonoscopy, lesser used blood tests.
So, any more information from you and the links you have included are very helpful and please keep them coming. Thanks,Bee
Wow Bee Thank you. I am trying to manage my IBS-D, without much help from my GP. The only person that has shown any interest is my Diabetic nurse. Your post has given me lots of practical information I can work from. I watched a video with Dr William Chey, Grastroenterologist for over 35yrs who stated that it's pointless to do a Colonoscopy without taking micro biopsies.
Brilliant post, thank you. I was told I had non-specific colitis a few years ago, whatever that means. The most successful thing that has worked for me recently is a course of co-amoxiclav which has kept me good for months now. I am not saying that bacterial infection is the cause of your condition, I don't know that, but the connection interests me. What is the treatment that you mention please?
Hi Stuart, the treatment I was told about is Budesonide, which is a corticosteroid, and since I was on Prednisolone for PMR and chronic eczema at the time of my diagnosis, I decided to forgo the treatment, although Budesonide apparently does not affect the bones in the same way that Pred does. If you go to the website BSDG.org.uk as suggested in my first post you’ll find the short video by Professor Chris Probert, which is helpful. It’s meant for the medics, but easily understood by we mere mortals. I have had three auto immune conditions, Polymyalgia rheumatica, which currently is in remission, chronic eczema, for which I now have excellent treatment, and now this awful microscopic colitis. Hope this is helpful.
Hi IzzysGran, I am a very long time sufferer of Lymphocytic Colitis. I am 73 years old now and have had chronic bowel problems most of my life. Due to living in the country and dealing with country medicos, including Gastroenterologist (who are jack of all trades where I live), and having numerous Colonoscopies and mainly outcomes of IBS/Diverticulos I travelled further to our major city and chose a highly reviewed Gastroenterologist who took biopsies of my large bowel which showed up the Microscopic Lymphocytic Colitis. He then placed me on a medication called Entocort. Up until then I was experiencing extreme Diarrhoea which was just water, and I spent a lot of time in hospital being rehydrated. I lost so much weight and was in general a very ill person. In short, the entocort which I have been on for years did actually get my diarrhoea under control. This all happened about 10 years ago and I am now being weaned off the Entocort and I still have all the same problems though not as bad as Lymphocytic Colitis. If I have a flare up, I take a couple of Loperamide, and are supposed to take 4 a day but I only take 1, otherwise I'll get constipated. That's how I manage this rotten complaint after all these years!
Hi there, I’m so sorry to hear you’ve been a sufferer for such a long time, and thank you for sharing your story. I’m intrigued to hear about Entocort, and shall look it up since it was not offered to me! I know what you mean about Loperamide. I find if I take it, it slows everything down, including the wind that causes a lot of pain, so all that happens is that the pain lasts longer, and when I eventually go, I still get diarrhoea! It’s a lose, lose situation as far as I’m concerned. Unfortunately for all of us with microscopic colitis, it seems that once you’ve got it, its a lifelong condition. It just has to be managed. I only wish there was a treatment which is as good as the treatment which I have for chronic eczema, which also used to keep me up at night! I wish you all the best, and thank you again for sharing your story.
I would be up for this. I was diagnosed with microscopic colitis in 2018. Not sure which type, I will have to see if I can find it in my medical record. I was put on a course of steroids, I think it was budesonide for several weeks on a reducing dose. This worked well and I was much better for a long time. Even now, I am not as bad as I was in 2018, but it may be that I have learned to manage it better. Too much fibre is a big no no for me for example.
Hi there, I was interested to hear that the treatment worked for you. Thanks for sharing that, and I’m the same, too much fibre is a problem, especially these days when fibre is something we are all encouraged to eat to improve our gut biome!
Hiya, thank you so much for sharing your story and the valuable information contained in your post. I would be quite interested in some kind of dedicated forum for future reference. I myself am currently waiting on biopsy results as I have had chronic diahorrea since April 2022 and my bowel has been inflammed ever since. I was really poorly in March and April this year, my calprotectin went up to 1500 but my gastroenterologist has never addressed the inflammation. I have a provisional diagnosis of bile acid malabsorption which I am on medication for but still waiting on yet more tests and results. My bowel is more settled but I still only eat a very limited diet and have build up drinks to supplement my diet. I see a dietitian regularly too but have lost so much weight I look anorexic and very little strength or energy to do things. I think I may have bile acid malabsorption, possibly a touch of IBS and microscopic colitis to. I hopefully get some results in July but at the latest I may have a diagnosis by the end of the year. When I am poorly my calprotectin goes through the roof and I go to the toilet 10 times a day or more both day and night. I have tried to find forums to help me understand this more and gain more information but cant find very much at all. I so far have not come across many people with microscopic colitis. I have so far found this thread really interesting and informative. I feel that any of these conditions are really life limiting, I am unable to go out and do what I enjoy plus unable to eat what I want anymore. I am hoping that more people come forward with this as regards diagnosis, management and treatment. I have had two colonoscopies which both appeared normal but biopsies show inflammation as well as having raised calprotectin. I do hope that I get some answers soon as at the moment it is hard for me to tell what is wrong with me and my health is deteriorating due to the lack of nutrition and exercise or doing normal activities. I hope this is helpful for anyone out there and I hope we all get answers and management soon to have a fulfilling life.
Hi Sarah, I’m so sorry to hear that you’ve been suffering so much. I really understand the need to go to the loo ten times a day and more. It’s the same for me, and I would give a lot for a good seven hours uninterrupted sleep. I have no idea what calprotectin is…must look it up. As to not many people having microscopic colitis, the BBC thread which I read stated there were about 70,000…also that it is probably one of the most undiagnosed conditions. Did you read Blearyeyed’s post? She has a lot of useful information which might be of help to you. Take care, and good luck with getting answers that will help you.
Calprotectin is an inflammation marker. In my area (N Yorks), this is not tested in over 60's . The rationale being that beyond that age, you will have inflammation somewhere anyway.
Thanks for that BabsyWabsy, saves me looking it up. Since I’m 76 (mentally about 18) I guess they’re right about inflammation somewhere, however, it seems to me that knowing just how much inflammation is in one’s body might be helpful in pinpointing a problem, and therefore perhaps a remedy/treatment of some kind! Or is that completely unrealistic of me. Heigh ho! All the best.
I have had my calprotectin tested due to the fact I am only in my late 40's and at first I did not understand what it was or meant but it is indeed an inflammatory marker. Everytime my symptoms are really bad my calprotectin is always very raised. Given my age mine should ideally be in the normal range of being around 50 but every time I do a test it is always raised. I have had my calprotectin tested around 6 times in the last year and it has always been raised which is indicative of inflammation. My inflammation is definately within my bowel due to all the symptoms that I have been suffering. I originally got diagnosed as post infective IBS but the medication that was prescribed didn't work which is why I ended up so poorly again in March and April this year. I did indeed read blearyeyes post which was very interesting and informative. I think it is sometimes a matter of piecing everything together to get a diagnosis. If I look up the symptoms of bile acid malabsorption and microscopic colitis is describes exactly how I have suffered over the last year. I personally think I possibly need a small dose of steroid but will have to wait and see what the rest of my tests and results show up. Hopefully we will all get some answers soon and start to feel much better.
Hi Sarah, poor you, I’m so sorry. What I have found is that you have to push and push to get the the treatment that you need. Once you get your results, don’t let them fob you off. Keep pushing until you get a treatment that works, or that at least helps to mitigate the problem. I know how it is to feel permanently tired. Take care, and all the best.
Thank you so much for your reply, I will indeed keep pushing for the right diagnosis and treatment. Hopefully I will get some answers soon as I cant continue to live my life as it is presently, so need some kind of management and appropriate treatment. Take care of yourself and all the best to you to.
II have suffered from very watery diarrhea for nearly 20 years. My diagnosis is IBS.
I also saw the bbc article and I have a colonoscopy this Saturday to check for Microscopic colitis.
How were you diagnosed, via colonoscopy taking biopsy? If so, do know how if multiple biopsies were taken? How long did it take to get the results? Can you think of anything else worth knowing beforehand? Do you still have your gallbladder?
I'm not gonna lie, I'm praying for a positive result.
From that I've seen, a steroid called Budesonide can send people diagnosed with Microscopic colitis into remission.
P.s. I can see you have chronic eczema. I have chronic, severe psoriasis all over my body. My hope is treatment for Microscopic colitis will improve both conditions.
Hi Brigsy, I was diagnosed with both Lymphocytic and Collagenous microscopic colitis by colonoscopy, with four biopsies taken from four different points in my large bowel. A colonoscopy without biopsies is pointless, because as I understand it, neither type of Microscopic colitis is visible to the naked eye. In fact, my bowel looked remarkably healthy, apparently. I can’t remember how long it took to get the results, sorry. I do still have my gall bladder, but I also have Pancreatic cysts for which I have been having occasional MRI scans. I don’t think there is anything I can offer in the way of pre knowledge. The only thing I would say is ensure that you take the medication to clear your bowel to make sure that it is absolutely clear before the colonoscopy. My understanding is it makes the scan much more effective.
I’m really sorry to hear about your psoriasis. It’s a miserable condition. I went through several medications for my chronic eczema, including various immunosuppressants but I had to cease them for various side effects, my kidneys didn’t like one, although it cleared the eczema, the others had to stop for other reasons. Eventually, after going through all the hoops that one has to go through, I am currently on an amazing medication. I inject myself once a fortnight, and the active agents only affect the particular part of my immune system which cause the eczema. Ergo, no side effects. It’s amazing, but I understand very expensive. Might I suggest that you go to your dermatologist and press extremely hard for a treatment which should be there for psoriasis. My dermatologist told me three years ago that the eczema treatment was “on the way” hard on the heels of the psoriasis medication which was already in use. You just have to prove that you have tried other medications which have been unsuccessful. I’m not sure that the treatment for Microscopic colitis will help with the psoriasis, but then I’m no medic.
I wish you all the very best, and please let us know if you do have Microscopic colitis. The more people who can join to tell their stories, the better.
Thanks so much for your reply. I to have had negative colonoscopy, as well as negative endoscopy and video capsule endoscopy. Everything looked completely fine.
I never heard of microscopic colitis until the bbc article recently. My colonoscopy is booked for this Saturday and multiple biopsies will be taken to check for Microscopic colitis.
I will respond back here when I have my results.
Personally I feel that people with severe diarrhea, diagnosed as IBS and do not see an improvement on the low fodmap diet, will have actually been misdiagnosed with microscopic colitis or bile acid malabsorption.
I am finding this all very interesting as I have had two colonoscopies and both came back as having a remarkably healthy bowel but all my biopsies so far have shown inflammation. For my last colonoscopy I had 10 biopsies taken so fingers crossed this shows more than my last lot of biopsies. I think I am waiting around 8 weeks for my biopsy results but I obviously don't get my results until I have an appointment with my gastroenterologist which means I possibly wait quite a while as my appointments are around every 4-5 months. I am just hoping that these biopsy results show microscopic colitis. I have had several tests a gastroscopy, two colonoscopies and a capsular endoscopy which appeared all to be normal and healthy. I have just recently had a small bowel MRI study and am awaiting the results of this. I have literally had all my intestines checked and all I have is a raised calprotectin and biopsies which show inflammation. I wish I had seen the bbc article as I would have found that interesting plus I can quite well believe that microscopic colitis is under diagnosed. Unfortunately there are a lot of conditions that are under diagnosed. The medication I take for bile acid malabsortpion helps my symptoms a bit but my tummy is still very unpredictable and I have to be very careful what I eat. I cant touch anything that is pre-packed or processed. I am still experimenting with what foods I can and cant eat. I do hope you all get some answers soon. Take care everyone!
Indeed it is Meleber, thank you so much for the link. And I realise that I was wrong, it appears that 17,000 people a year are diagnosed, which I suppose means that there must be at least 70,000 living with the condition, since some of the people on here appear to have had Microscopic colitis for ten years or so. Thanks again.
I was diagnosed with collagenous colitis last month. I have fairly mild symptoms and am currently treating with Imodium daily. I too had Polymyalgia Rheumatica and found the forum here on HealthUnlocked to be an excellent source of information and support.
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