Has anyone experienced microscopic colitis alongside PMR, GCA/LVV?
I have been struggling with bowel and bladder symptoms for a few months now and in spite of examinations, a scan and Fit tests also blood test results so far have been inconclusive apart from UTI’s that respond to antibiotics initially. I experience bloating and stomach cramps with urgent diahorrea especially after eating, the mild pain in my lower abdomen is constant now, it starts on the lower right of my abdomen. The stool is orange. All this has led my own research to Microscopic Colitis which is yet another autoimmune disease. The trail goes cold with the GP when tests are negative. Any shared experience would be very welcome. Sorry if this feels irrelevant but it does seem to be related to the drugs we take and lowered immunity.
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SheffieldJane
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Hi SheffieldJane. I was diagnosed with Microscopic Colitis back in August having been diagnosed with PMR in January 2021, under control now thankfully! If you check out Guts UK they have a very good video from the British Society of Gastroenterology listed meds which can cause MC: gutscharity.org.uk/advice-a...
Thank you so much for posting this link. I have been struggling with unrelenting diarrhoea for more than for weeks and blood and stool tests have all come back negative. The GP decided to treat me for diverticulitis but a course of antibiotics made little difference and now I’m back to square one. At least when I speak to the GP now I can mention the possibility of microscopic colitis, something I had no idea about before. Wishing you and Sheffield Jane better and thank you both for sharing your information.
Thank you! I hoped it would be of use to someone else. As we get older we all have a bit of diverticulitis apparently. Have a look at Yealink’s link about the Gut charity. It’s really useful. ( above).
Yes I was diagnosed with GCA 2019 January in July started getting very bad diarrhoea taken into hospital 4 times over 4months tested fir bowel cancer infant everything then had colonoscopy and told had ulcerated colitis I am now on mezalasine and cholestryine which seems to work When I was discharged was 6st 2lbs!! They also discovered from MRI S had tumours on pancreas great but so far benign No one suggested connection between ,GCA and colitis but still take steroids as have PMR too.Just turned 80yrs but still managing to do 3 workouts a week if you sit still you deteriorat rapidly as my sister has...if you can keep going as long as possible definitely helps mentally as well
Your story is interesting. They treat colitis with steroids I’ve learned. You are so right about keeping up healthy routines and keeping interested. You are inspiring! 🧘🏼
Not at all irrelevant, Jane. Anything that comes alongside PMR may well be linked.I have no experience or knowledge of microscopic colitis but want to send my sympathy and wishes that your problem is resolved soon. 💐
PMR 2014, Celiac disease 2019, microscopic colitis 2021. As far as I know the only way to test for microscopic colitis is by biopsy taken during a colonoscopy. I believe it's a bit tricky to find as well based on my experience. Colitis was tested for during my first colonoscopy in 2019 with negative results, but positive for celiac disease. Going gluten free relieved the worst of my symptoms, but others persisted so I was further tested last summer and tested positive for collagenous microscopic colitis.
As to this being related to PMR or the drugs we take, all of my bowel issues were with me many, many years before being diagnosed with PMR. It just took this long for a GP to finally listen to me and refer me to the Gastrointestinal Specialist! So, was celiac disease my first autoimmune disease? I'll never know.
I never had "orange" bowel movements. Perhaps a referral to a GI specialist should be your next step.
Best of luck to you, I know how miserable these conditions can be.
Thank you so much for taking the trouble to write. As for the orange/tan bowel movements apparently it is because the gallbladder does not have the chance to contribute to the digestive process. I have wondered about Celiac disease, I don’t tolerate wheat well, like you though, symptoms persist without it.
I am not sure what the latest range of blood tests were. I fit the background profile though and am thirsty constantly. Thank you. I will ask my GP about this possibility.
I have had a stool FIT test - does this just look for blood eg cancer? Is a stool culture different? A Colonoscopy and possible biopsy remains on the horizon.
I need to ask if I have. My surgery gives no feedback if tests are negative. I don’t know how we are expected to monitor our own health, as we seem to have to do these days. I see a different GP each time and there is no continuity or joining up the dots. One GP just says “ what do you want me to do”? I think they are broken.
It’s like different people doing a jigsaw puzzle and coming in to do one piece, by the time they have checked the picture on the box to see where to put that piece, time’s up. You’d probably remember having to collect a potful of poop. Anyone coming in with a history of loose stool that persists should get one. It’s relatively cheap, crosses off various causes and is non invasive unless you regard fiddling about with cling film or a box in your toilet pan as invasive enough!
Yes, but if I have understood you and PMRPro correctly, there is one test that looks for microscopic blood particles and another that does a bacterial analysis. This was not explained prior to my recent tests consequently I don’t know which test was “fine”. I suspect the blood one.
The blood poo tests are usually either smearing on a card or dipping a wand into it with a stick thing that goes in a vial type pot. Cultures usually need a good few dollops into a plain pot that comes with a scoop.
Hi SJ, Sorry to hear you are still struggling. I haven’t any information on your suspected issues, but I can commiserate as it all sounds very similar to Crohns, which is my issue. Not fun! As they are both inflammatory issues, you might find eating a low residue diet helpful. Choose low fibre foods to relax the bowel. When I have flares, I normally replace one of my meals with Complan which does seem to help.
Hi Jane . Hope you are getting some relief . Just a thought - but when in relation to the vaccine did your symptoms appear ? Some reports of colitis post vaccine . I’m tuned into all this just because of my myocarditis / pericarditis reaction post Pfizer . The good news is if it’s a reaction is that it will ease with time .
That hadn’t occurred to me but I have had 2 AstraZeneca and then 1 Pfizer in October and this symptom has been acute for about 2 months. Do you remember where the reference to Colitis was? Thank you, that would be good news er wouldn’t it? Due my 4th soon, I hope it’s AZ no reaction to that. My husband has had a return of the Eczema since his that has been clear since his 20’s.
Hi Jane . Will have a look where I read that and forward but also I know from my sister in law who is a gastroenterologist that she has had a few patients who’s chrons and ulcerative colitis flared immediately post Pfizer vaccine . It does settle . Just a thought that it could be related .
Does not sound fun at all. It's not fair is it, when it just seems like one thing after another. I suspect worrying about what it might be isn't helping either. My sympathies indeed!
Drawing a long bow here perhaps, but you mentioned in another post that you and Tocilizumab don't get along all that well? Could it be a cumulative contributing factor perhaps?
And the constantly thirsty could be lots of things of course, not least of which could be dehydration from the frequent diarrhoea maybe?
Hope you get some answers and relief very, very soon.
Thank you! Yes, I am highly suspicious of Tocilizumab, I have felt much worse in general since being on it, yet it is my best hope to get off Pred or at least down to an insignificant dose. I keep thinking that if I can just hold out a bit longer then maybe the GCA will go into remission. At this rate my health will be destroyed. Thank you for your kind thoughts. Dehydration is a listed symptom of microscopic colic and steroid induced diabetes which I teeter on the edge of.
Hi, I’ve just had a similar experience, stomach pains that double me up and recently so bad it felt the same as when I had appendicitis.I had been having night sweats along with the pain, GP examined me and gave me antibiotics as I also had a temperature and he thought I must have an infection in my intestine as it was so tender.
It cleared up but after a week I can feel it starting up again.
I’ve got an appointment tomorrow morning so I shall mention microscopic colitis.
Thank you Tina. I am on my third course of antibiotics that do seem to offer temporary relief. I am always hot and often get head sweats and feel feverish. The constant pain is in my lower right abdomen and I think that the appendix is situated there. Good luck with getting relief, the pain is sometimes agonising. My doctor said that she didn’t think it was Pred or Tocilizumab side effects and she thought she knew what it was. I can’t think why I didn’t say what? Do you get cystitis symptoms with the gut symptoms?
Hello I have been suffering from constant UTI's since beginning July last year and just given repeat prescriptions for anti-biotics. Finally (December) found a GP within my practice who has taken me seriously and referred me to a consultant. Long story short was given a list of consultants and told to organise my own appointment which I did and have since already had 2 appointments, one procedure and another one due on 9th February for a "procedure"!!! Local BMI, but paid for by the NHS. Wish I'd joined BUPA when I was young and fit!!!!! UTI under control at the moment, my own original GP still not interested but at least I'm getting somewhere with the BMI.
What was the outcome of the investigations? Did you pay privately for this attention? Perhaps this is an example of the Goldstar treatment we should be able to expect.
I just want to commiserate! I am sorry for your GI problems. I have had a sensitive gut for years but nothing I couldn’t control with food choices until the past two years. I finally got into a GI doc and was initially dx with celiac by blood tests and dna marker. I am still waiting on a colonoscopy/endoscopy to see what else is going on. The celiac is an auto immune of the small intestine but based on my bloodwork I also have something going on in the large intestine. The endoscopy can be used to dx celiac but I am having it mainly for reflux issues that also started recently. Removing the gluten has helped the headaches and fatigue but I still have constant diarrhea (tmi sorry!) so my doc is sure there is more issues in the large intestine. I had a clear colonoscopy 10 years ago so all this is newly developed. See if you can get a GI referral.
Thank you! All useful information. I do think Prednisalone can make these conditions worse. I will aim for a GI referral. Good luck with their findings. My son believes that he has celiac disease and behaves as if he does, diet etc. He doesn’t want to go back to wheat in order to obtain the definitive diagnosis because the symptoms are so disabling.
Good plan for him! Once you stop gluten entirely, it’s very dangerous to go back on it. It has been about 3 months since I have been off gluten. Last week I had an exposure from eating out. It was soooooo awful. Made me want to only eat out where I can watch them assemble my food! ❤️ Hope you get some answers and relief!
Yes, even foods that have no wheat in the listed ingredients have given him horrible symptoms. My husband is our chef and it’s getting ridiculously complicated. My son doesn’t eat meat or fish, I have to avoid carbs and sugar then there is the gluten. I hope he doesn’t quit, he still manages delicious meals for us all.
Hi Jane so sorry to hear that you are still having all these horrible things to contend with. It's just a thought and knowing your background you have more in depth understanding than I do. You mentioned urticaria a few weeks ago, I always got terrible stomach problems after a bout of urticaria like the body was trying to purge itself of the substance it had reacted to. I hope you get some answers soon best wishes and good luck
I am a great believer in everything being linked in some way. I had decided that I’d had slapped cheek syndrome due to cuddling small people and hadn’t thought it might be linked but the abdominal/ bowel symptoms were present for a few weeks prior.
So sorry to hear your problems, I remember when I worked the director was having similar problems to yours and after 18 months the verdict was a milk intolerance , needles to say it just rang it’s course and eventually it stopped .He had every test going but nothing was ever found to be the course.
I hope you can find a solution to your problems and send my best wishes
Yes, I was diagnosed with microscopic colitis a few years before PMR, in my case I didn't notice anything orange, and pain was negligible...my symptoms were simply frequent and explosive. My symptoms were controlled by budesonide. I was having occasional attacks every 9 months or so, but have only had one recurrence since diagnosis with PMR in June 2020. Good luck with finding some ease of symptoms. Hope this is some help.
I had Microscopic Colitis years ago. It was diagnosed with a colonoscopy. The only way they can diagnose is if it shows up on the microscope. I was put on Asacol, but believe there is something better now. Bio yogurt and Manuka honey helped me as well.
I do have PMR which is now in recession having been treated with Pred. I was also advised to use Imodium syrup(meant for babies so only available on prescription) which can be taken in tiny doses to slow down stool visits rather than drastically stopping with adult doses. Avoid spices and anything you know triggers it.
Hi SheffieldJane yes me! Had all kinds of coloured stools, orange, yellow etc. Had FIT stool tests and CT virtual colonoscopy more recently....nothing other than a kidney stone found.My gastroentorologist believes it to be microscopic colitis but most likely a result of PPIs (I took lansoprazole) with the pred. Off both now so we shall see. Stools still not right but often better, consistency and colour can be a problem but no pain (at the moment).
I like the sound of a virtual colonoscopy. How is that done?I saw that Omeprazole and other PPIs were a triggering factor and we are automatically prescribed them.
Hi Sheffield Jane, yes, PPIs are often the culprit so my gastroentorologist told me, they can start these problems and it can take a long time to settle. We worked together and tried wheat free but messing about with my diet caused weight loss! After many tests he went for the CT (virtual) colonoscopy which apparently is the gold standard. This particular scan covers the other abdominal organs as well, so the pancreas, liver, gallbladder, kidneys etc are all checked.
The prep isn't very pleasant, but again less aggressive than colonoscopy. I had to drink gastrogaffin on the Saturday and Sunday evening which really clears you out! It is also a dye that helps to give best possible pictures.
When the scan takes place they insert a flexible tube just 2 inches into the bowel and then they inflate your intestines with air. Honestly, it wasn't really uncomfortable and didn't bother me. They then put a cannula in and inject iodine which gives a warm feeling for a few minutes. The whole process takes about 15 mins and us far less invasive than the traditional colonoscopy. No sedation and very little risk of bowel perforation
Sheffield Jane, where do you live? I believe they may be. Sometimes they are referred to as a CT colonography. Google it. I had mine done privately as my company's cash plan covered it but they are available on the NHS in the UK
I just did £1500 all told. Privately. My location is Sheffield. I doubt you can request one without extenuating circumstances. It sounds a much kinder procedure.
I had terrible stomach cramps with diahorea and bleeding. Taken to hospital but ambulance and they did lots off tests and they thought I had microscopic colitis so I had a pill cam but it wasn’t. Next time I had an episode I had a scan and it was ischaemic colitis. Have had 4 attacks about every15 months but haven’t had any for for 23 months. Got PMR in 2010 and it lasted 4 years and now have it back again since last August. I started on 20mg prednisone and I am now down to 6.5mg.
Sorry for the pain, Jane. I had microscopic colitis 20 years ago, and like Squiggie and Nuigini it was hard to ID, and only during colonoscopy with a microscope. I've had several periods of explosive awful bouts since, and recently had another bout for a couple weeks, but tests were negative. Then it stopped. My PMR is about 3 years old and I never thought to associate the two -- but if you have one autoimmune disease, why not several?
My son, incidentally, went gluten-free after years of tummy trouble and like magic, he is a new person.
Wishing you a magic discovery, too (or even a realistic solution).
Thank you for this. My own son is so much better since he gave up gluten too. Foods have been so modified for transportation and longevity rather than for the health of the end user. These food sensitivities seem epidemic . The rise of autoimmune diseases is an urgent sign that all is not well with human health for many reasons to do with modern life and the relentless pursuit of profit.
About 30 years ago I was diagnosed with Lymphocytic (microscopic) Colitis. Almost couldn’t leave home for a year. On the toilet 20 times a day. Lots of tests. GI doc said there was no treatment and not much research because it’s so rare. He he gave me meds for Ulcerative Colitis. No improvement. I found a study done at John’s Hopkins University. 12 patients with Lymphocytic Colitis were given Pepto Bismol, 2 tablets every 6 hours, for 3 months. 9 of the patients had full recovery. I tried it and after a month I was having normal stools. Just searched for the article and can’t find it.A couple times, such as right now, when I’ve reduced prednisone to 1 or 1.5mg I’ve had watery stool, without pain or urgency, and just one or twice in the morning. So maybe something is still lingering
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