Microscopic Colitis (aka not all that runs is radiation)

LisaPizza
LisaPizza Member Posts: 358 Member
in Uterine/Endometrial Cancer #1

We have lots of symptoms we have to live with after treatment, and doctors don't always get it or believe it's treatment related, or sometimes don't believe or suspect that it *isn't* treatment related.

 

I found this guideline from the UK (so not all tests translate to the USA or other countries), but I thought it was so nice. Just Google "The practical management of the gastrointestinal symptoms of pelvic radiation disease," and it seems to he available as a pdf download in many places. It's for healthcare providers, but is not too overly technical. 

 

I've been having diarrhea since the very beginning of radiation in May 2018. In retrospect, that was the first clue ... radiation doesn't act that fast. Still, we thought it was stress. It's fluctuated some, but this fall/winter it's been, to be frank, pooping water. And accidents.

 

Now I've had a colonoscopy and biopsies, and there was no radiation damage, instead the real culprit ... microscopic colitis. Guess what the classic description of that is ... middle aged woman with chronic watery diarrhea, with crazy urgency and accidents. Might apply to a few of us :)

 

It's a type of inflammatory bowel disease, like Crohn's disease and ulcerative colitis ... but thankfully without the horrible damage those can cause. I'll take an oral steroid for 8 weeks (it's poorly absorbed, so usually no systemic side effects), then try to taper off. Unfortunately relapse rate is very high, but I'm going to think positive, and there are a number of options :)

 

Anyway, keep taking care of your health, it's not always cancer or treatment related!

Comments

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #2
    I'm glad it's something you

    I'm glad it's something you can fix. My dad had it and relapsed once 4-5 years later. The second time he knew just what it was, so the Dr was able to take care of it quickly.

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    #3
    Thanks for the post!

    Yes it can be very frustrating when a doc dismisses something that is very important to us and affects our quality of life. Lisa I hope the steroids help and puts an end to your GI symptoms... gosh I feel for you having to deal with that. The oral chemo I am on right now causes diarrhea first thing in the morning so I always plan my appointments for the afternoon but I am not complaining because your symptoms are so much worse. Plus you have been dealing with this for far too long. So all the best and keep us posted. xo

  • MoeKay
    MoeKay Member Posts: 493 Member
    #4
    I have microscopic colitis also

    Yes, it seems that pelvic radiation tends to get blamed for just about any abdominal issues that people have afterwards.  I've posted about this a number of times before, but I too have microscopic colitis.  As I've previously stated, I strongly suspect, but cannot prove that I developed microscopic colitis after being given a very long course of Levaquin after being told in the ER in 2009 that I had bacterial pneumonia.  Well, I was also told by the ER doctor that I had metastatic cancer to the lung, but that's another story, and I won't digress.  When my condition did not improve after several months on Levaquin, further testing was done (including lung biopsies during which my lung was punctured), and it was ultimately deterimined that I had eosinophilic pneumonia, not bacterial pneumonia (and no metastatic cancer to the lung).  Eosinophilic pneumonia is treated with steroids, so I was on prednisone for 8 1/2 months before the condition resolved and my immune system finally returned to normal. 

    I started having bowel issues that turned out to be microscopic colitis around the same time period as I was on Levaquin.  However, the microscopic colitis was not diagnosed until my 2013 colonoscopy when the gastroenterologist performed biopsies of my colon, which is the only way microscopic colitis can be definitively diagnosed. 

    While cancer and cancer treatment do cause a lot of issues, it's important to remember that there are a lot of other health issues and illnesses out there that are not related to our cancer or its treatment!!

    Good luck, Lisa, I hope the steroids do the trick for you! 

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #5
    MoeKay said:

    I have microscopic colitis also

    Yes, it seems that pelvic radiation tends to get blamed for just about any abdominal issues that people have afterwards.  I've posted about this a number of times before, but I too have microscopic colitis.  As I've previously stated, I strongly suspect, but cannot prove that I developed microscopic colitis after being given a very long course of Levaquin after being told in the ER in 2009 that I had bacterial pneumonia.  Well, I was also told by the ER doctor that I had metastatic cancer to the lung, but that's another story, and I won't digress.  When my condition did not improve after several months on Levaquin, further testing was done (including lung biopsies during which my lung was punctured), and it was ultimately deterimined that I had eosinophilic pneumonia, not bacterial pneumonia (and no metastatic cancer to the lung).  Eosinophilic pneumonia is treated with steroids, so I was on prednisone for 8 1/2 months before the condition resolved and my immune system finally returned to normal. 

    I started having bowel issues that turned out to be microscopic colitis around the same time period as I was on Levaquin.  However, the microscopic colitis was not diagnosed until my 2013 colonoscopy when the gastroenterologist performed biopsies of my colon, which is the only way microscopic colitis can be definitively diagnosed. 

    While cancer and cancer treatment do cause a lot of issues, it's important to remember that there are a lot of other health issues and illnesses out there that are not related to our cancer or its treatment!!

    Good luck, Lisa, I hope the steroids do the trick for you! 

    So glad your lungs didn't

    So glad your lungs didn't have mets :) 

  • Soup52
    Soup52 Member Posts: 908 Member
    #6
    I must be the oddball here

    I must be the oddball here but my problem has been constipation which probably mildlyexisted before diagnosis,but has progressively gotten worse. I’ve worked with a gastro PA and have come up with some temporary solutions that I have to be careful about lest they work too well and sudden urge to go to restroomthat doesn’t always turn out well. I suspect some adhesions from prior abdominal surgeries may be the culprit but who knows, just the fear that cancer will go there too.

     

     

     

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