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Microscopic Colitis - training & treatment
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Hi there – I’m a UK based triathlete and runner who was diagnosed with Microscopic Colitis (Collagenous) about 5 years ago. I do Olympic and 70.3 distance (and half marathons).
Basically, nothing helps my colitis except the steroid Budesonide (Entocort). For me, it’s a miracle drug, and I've done several courses of it with no side effects, tapering from 9mg pd to 3mg. I often have to take a course before big races to stop diarrhoea. But symptoms always return on stopping the drug.
Now, my Drs now want to put me on an immune suppressing drug called azathioprine, and I have a hospital appointment next week to discuss this.
Do any triathletes take this drug? It’s meant to massively increase sun sensitivity, leading to a big increase in non-malignant skin cancer. The advice to keep covered up and always wear factor 50 isn’t really practical for triathletes, and we all know that sunscreens aren’t 100% effective.

If anyone reading this has a similar condition, what drugs have they found helped them? Has anyone done a long term maintenance course of Budesonide?

I appreciate this is a slightly niche topic, but thanks for any advice you might have - and have a great season racing!
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Re: Microscopic Colitis - training & treatment [Lndntriathlete] [ In reply to ]
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Not sure if this will be helpful or not but my wife has pretty severe Crohn's and has been on nearly every medication you can think of (Imuran, Remicade, Humira, Prednosone, etc.) with varying degrees of success. The only thing that has worked for her long-term with no real side effects is Entyvio. She has a monthly infusion in our home which is covered by our insurance. I'm definitely not a medical professional but I know Entyvio can be used to treat UC (not sure about microscopic colitis specifically), so it may be something worth discussing with your doc. Good luck and feel free to PM me if you have any specific questions.
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Re: Microscopic Colitis - training & treatment [Dgconner154] [ In reply to ]
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Thanks very much for the reply - I'll certainly ask my Dr about Entyvio. I'm really glad to hear it's worked for your wife. Have a great weekend and season!
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Re: Microscopic Colitis - training & treatment [Lndntriathlete] [ In reply to ]
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Might be a long shot but reach out to the Chrohns and Colitis Foundation in the US. They have a group called Team Challenge that fundraise through endurance events. Many of these groups have athletes that have faced or are dealing with similar issues. May not be identical but may be helpful. Best of luck.



I miss you "Sports Night"
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Re: Microscopic Colitis - training & treatment [Quo Vadimus] [ In reply to ]
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Quo Vadimus wrote:
Might be a long shot but reach out to the Chrohns and Colitis Foundation in the US. They have a group called Team Challenge that fundraise through endurance events. Many of these groups have athletes that have faced or are dealing with similar issues. May not be identical but may be helpful. Best of luck.

^^^This too. CCFA and Team Challenge are a great resource to learn about treatment options and connect with other athletes with Crohn's & colitis.
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Re: Microscopic Colitis - training & treatment [Quo Vadimus] [ In reply to ]
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That's a great suggestion. Thanks for the tip.
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Re: Microscopic Colitis - training & treatment [Lndntriathlete] [ In reply to ]
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Long-time ulcerative colitis "sufferer" here (in quotes because I've had several flare-ups, but can't really say I "suffer" on a continual basis). Originally diagnosed in 1997. I started out on prednisone to control the flare-up, and typical ASA-5 series medications. Eventually got to balsalazide disodium (Colazal) and immuran (azathioprine), which kept things at bay for the most part. The azathioprine is a long-term concern, though. In certain age groups and after certain treatment durations, there is a huge jump in the risk for lymphoma. I'm not 3 doses into a transition to Entyvio (0, 2, and 6 week infusions done, next is on 1/27 and will continue every 8 weeks thereafter). I'm still on the Colazal and Imuran, but will be going off those after we get past the loading doses of Entyvio. No side effects that I've noticed.

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Re: Microscopic Colitis - training & treatment [Lndntriathlete] [ In reply to ]
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I swear by diluted oil of oregano. It cured me and is my go to for a wide range of things. It's relatively benign diluted.

Found it on this site. https://listentoyourgut.com/ulcerative-colitis/ Just put some up there before going to bed, etc.

I am not a doctor and this is not medical advice.

https://www.ncbi.nlm.nih.gov/...articles/PMC2233768/

Indoor Triathlete - I thought I was right, until I realized I was wrong.
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Re: Microscopic Colitis - training & treatment [brider] [ In reply to ]
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Thank you! Good to know that AZA worked for you, but yes, I'm worried about the skin cancer risk and (less) the lymphoma risk. As a triathlete, the risk of exposure to sunlight is more immediate.

Anyway, I have a Dr's appointment this evening, so will see what they say.
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Re: Microscopic Colitis - training & treatment [IT] [ In reply to ]
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Thanks for the heads up about Oregano oil. I hadn't heard of it as being a possible solution, but will look into it more.
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Re: Microscopic Colitis - training & treatment [Lndntriathlete] [ In reply to ]
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Hope your appointment went well. GI doc specializing in IBD. Wanted to see if I could provide any additional input.

First I wanted to applaud you for your apparent knowledge base regarding your disease. As your GI has likely noted, the long-term effects of budesonide are unfortunately not well described yet, and we remain concerned that, over time, it may eventually contribute to systemic steroid-related side effects. For microscopic colitis, the best data (and they are limited) is probably for thiopurines such as azathioprine. This is most likely a consequence of azathioprine being on the market for so long than any relative efficacy in comparison to other agents. That being said, it's typically my first choice as a steroid sparing agent as well. I'd unfortunately only consider vedolizumab in specific situations where azathioprine is contraindicated for microscopic colitis, as we just don'[t know if it would work. No harm in bringing it up with your doctor to see if he'd be willing to try it, but you'd want to come in understanding we really don't know the efficacy in your specific disease outside of case reports.

While the initial laboratory monitoring is a bit intensive with azathioprine, there should be no other contraindications to you continuing to train or race. I advise all of my patients to be liberal with sunscreen, but don't generally advise sun avoidance. Non-melanoma skin cancer (NMSC) is the most common form of skin cancer in general, which is actually a bit problematic in that we don't completely understand it's baseline incidence. However, in some well conducted studies, it appears that the incidence with azathioprine use is about 3-4 fold higher than in those who are not using azathioprine. Clinically, this translates in having your moles and freckles looked at every 6 to 12 months (I usually advise this be done by a dermatologist), but as a triathlete with significant sun exposure, you likely should be considering this anyway. With appropriate screening, these lesions can be removed in a timely manner before spreading elsewhere.

The lymphoma (Non-hodgkin's lymphoma) risk is considerably better defined. It appears that azathioprine use increases the relative risk of lymphoma by about 5 fold. The really important part of that sentence, though is "relative". For a middle aged male or female (30ish), the baseline risk of these types of lymphoma is actually really low, estimated to be in the less than 1 in 2000 range. These risks appear to increase as we get older than 50, though, so it's important to keep that in mind.

If there is anything else I can help with, happy to assist.
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Re: Microscopic Colitis - training & treatment [frankis] [ In reply to ]
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Hi Frankis - thanks so much for your reply. I really appreciate you taking the time to post such a detailed response. The lymphoma risk with Aziathioprine was one I was already happy to take on - and your very triathlete specific guide to melanoma was extremely helpful.

I had my follow up appointment yesterday. Unfortunately, I didn't have a chance to read your reply before I went in. I'm on the NHS in the UK, which is a wonderful institution, but one of the downsides is that (for my condition anyway) you see whichever consultant is available on a particular day - and the one yesterday was different from the Dr who suggested azathioprine.

This Dr immediately said he uses AZA very sparingly, and didn't think it was right for me - I didn't really even have a chance to bring up my questions about it. Instead, he wants to start me on budesonide again, then taper over 3 months to 3mg....and keep me on that as a maintenance dose, possibly going as low as 3mg every other day. While I'm on it, he wants to perform another endoscopy and biopsy, as I haven't had one for 4 years.

I know Budesonide works for me - but I'd be lying if I said I didn't have concerns about long term side effects (I'm a 51 yr old man btw). The consultant said it was largely safe, and there was only a minimal risk of steroid related side effects such as cataracts and bone density reduction (my two biggest worries). From what I've read - and obviously, I'm not an expert - the science seems a bit divided on how much (or indeed if) Budesonide affects bone density, and how much safer it is than more systemic steroids, especially at a low maintenance dose.

I think I'm going to go down this route, but it probably makes sense for me to monitor my own bone density. I'll pay for a baseline DEXA scan, and repeat it every 6 months or so while I'm on budesonide. My eyes - touchwood - are ok. I just changed my prescription and an eye test showed nothing out of the ordinary. I may need to revisit Aza in the future though. We'll see.

Anyway, the upside of all this is that I can crack on with training for 70.3 Estonia in June and several half marathons, including Hawaii, before then.

Again - thanks for your thoughtful reply. I see you live in CO - one of my favourite parts of the world! Have been fortunate enough to ski there a lot, and many years ago had revision knee surgery from the miracle worker Dr Steadman in Vail. It's thanks to him that I'm still running 14 years or so later.

Have a fantastic season.
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Re: Microscopic Colitis - training & treatment [Lndntriathlete] [ In reply to ]
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Just wanted to thank you for posting here! I was just diagnosed with Collagenous Colitis, and hearing you are able to train and race gives me hope that I might be able to get back to it. I was an elite national team athlete a couple of years ago, and have barely been able to manage 30-60min at 80W this year. I had been having some mental health stuff so it was thought this was all stress and IBS until I finally had a colonoscopy/biopsies this month. I'm in my 30's and this is one of the only posts I've been able to find about CC (or MC) and sports, so thank you!!
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Re: Microscopic Colitis - training & treatment [frankis] [ In reply to ]
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frankis wrote:
Hope your appointment went well. GI doc specializing in IBD. Wanted to see if I could provide any additional input.

First I wanted to applaud you for your apparent knowledge base regarding your disease. As your GI has likely noted, the long-term effects of budesonide are unfortunately not well described yet, and we remain concerned that, over time, it may eventually contribute to systemic steroid-related side effects. For microscopic colitis, the best data (and they are limited) is probably for thiopurines such as azathioprine. This is most likely a consequence of azathioprine being on the market for so long than any relative efficacy in comparison to other agents. That being said, it's typically my first choice as a steroid sparing agent as well. I'd unfortunately only consider vedolizumab in specific situations where azathioprine is contraindicated for microscopic colitis, as we just don'[t know if it would work. No harm in bringing it up with your doctor to see if he'd be willing to try it, but you'd want to come in understanding we really don't know the efficacy in your specific disease outside of case reports.

While the initial laboratory monitoring is a bit intensive with azathioprine, there should be no other contraindications to you continuing to train or race. I advise all of my patients to be liberal with sunscreen, but don't generally advise sun avoidance. Non-melanoma skin cancer (NMSC) is the most common form of skin cancer in general, which is actually a bit problematic in that we don't completely understand it's baseline incidence. However, in some well conducted studies, it appears that the incidence with azathioprine use is about 3-4 fold higher than in those who are not using azathioprine. Clinically, this translates in having your moles and freckles looked at every 6 to 12 months (I usually advise this be done by a dermatologist), but as a triathlete with significant sun exposure, you likely should be considering this anyway. With appropriate screening, these lesions can be removed in a timely manner before spreading elsewhere.

The lymphoma (Non-hodgkin's lymphoma) risk is considerably better defined. It appears that azathioprine use increases the relative risk of lymphoma by about 5 fold. The really important part of that sentence, though is "relative". For a middle aged male or female (30ish), the baseline risk of these types of lymphoma is actually really low, estimated to be in the less than 1 in 2000 range. These risks appear to increase as we get older than 50, though, so it's important to keep that in mind.

If there is anything else I can help with, happy to assist.

Thank you.
This is one of the benefits of this forum, you can actually talk with experienced sub specialty doctors who are also athletes and understand the intricacies associated with training and racing.
From one MD to another, appreciate your valued contribution.
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Re: Microscopic Colitis - training & treatment [Lndntriathlete] [ In reply to ]
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I have had colitis for about 7 years now. I went through multiple rounds of Prednisone going form 50mg down to 0 over a decent bit of time and this always helped, until it didn't and the doc said it was no longer an option for clear reasons. I have been taking azathioprine for a solid 6 years now and just was taken off of Lialda as it did not indicate a reduction in the chances of colon cancer. I also take an Iron and B12 supplement daily. The Aza, for me, has been a life changer. I spent about 5 days in the hospital nearly 4 years ago and was told that if this didn't work a J Cup was in my future. Long term, I am not thrilled for the slight increase in chances of lymphoma but as already mentioned they are minor already. Aza gave me a life again. I hope you find something that works and would be more than glad to share more of my journey if desired.
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