A Rare Bird

I had a check-up with the gastroenterologist this morning to get the results of the tests I had a couple of weeks ago. I’d hardly sat down in his consulting room when he announced “I’ve got the answer to your problem”.  I could have hugged him there and then. You see, after two months of struggling with constant diarrhoea and pain, I’d reached a stage where I didn’t care what diagnosis was made as long as treatment was available.  As it turns out, I’m not just a fine old bird, I’m a rare one as well!

Ever heard of microscopic colitis? I certainly hadn’t until today. I know about ulcerative colitis and Crohn’s and coeliac disease but no, Steph had to go and get something much rarer. The biopsies and blood tests have confirmed that I’ve developed an inflammatory bowel condition known as microscopic colitis (MC). The cause of MC is currently unknown. One theory is that the use of non-steroidal-anti-inflammatory drugs (NSAIDs) may contribute to the development of the condition. Another theory is that MC is caused by an autoimmune response where the body’s immune system attacks other tissues in the body. This is similar to the autoimmune disorders that cause chronic ulcerative colitis and Crohn’s disease. It’s also thought that bacteria or viruses may play a role in the development of MC but the exact relationship is unknown. As I’ve been on NSAIDs for years, have a long history of problems with autoimmunity and appear to be riddled with bacteria, it seems I was a sitting duck to develop this condition. My EDS is also thought likely to be a predisposing factor.

The symptoms of microscopic colitis are chronic, watery diarrhoea, accompanied by cramps and abdominal pain. Other symptoms include fever, joint pain, and fatigue. I’ve had them all unfortunately. The condition has been known to resolve spontaneously after several years but most patients have recurrent symptoms. Treatment varies depending on the severity of the symptoms. Anti-diarrhoeal and anti-spasmodic agents are the first line of treatment but as they’ve failed to work for me so far, I’ve been started on the same anti-inflammatory drug used to treat ulcerative colitis and Crohn’s. If this treatment fails, I will move onto corticosteroids but hopefully this won’t be necessary. Steroids and Steph do not go well together.

Living with any form of colitis is never easy but today at least, has felt positive. I’m very fortunate to have been thoroughly investigated and diagnosed in a matter of weeks. Some people have to wait years for a diagnosis. The tests might have drawn a blank leaving limited treatment options or worse, the diagnosis could have been very much more serious. Next week, I head to the UK for investigations of a very different kind but that’s a story for another day. In the meantime, thanks to an upstart airline, I’m off in a few days to dip my toes in the Med. I might not return.

20 Responses to A Rare Bird

  1. Annb says:

    Hope they pay, rare birds like you due respect out there in the Med!

    Enjoy, but lay off the foreign food, now may not be the best time to experiment with the culinary delights of the Med, what with the new itis and all!

  2. Grannymar says:

    Knowing the enemy always makes the fight easier.

    Enjoy the tip to France, but please come back to play.

  3. + 1 …. you are definitely a rare bird Steph!

  4. Steph says:

    Mornin’ folks! Do you lot not have beds to go to? 😉

    Ann – Hubby and I are lucky enough to have been invited to stay with a relative who lives only a stone’s hop away from the Med. All we have to do is get there and the rest is organised for us. Our host knows the score and wants us just to relax and enjoy. Flights to the sun @ €30 return are hard to resist!

    Grannymar – You’re so right as usual. Getting a firm diagnosis is the key to getting the right treatment.

    I’m hoping that if I take enough codeine before the flight, I won’t have to spend most of it in the dunny! I promise to come back to play… sometime 😉

    Paddy – Thanks for leaving out the ‘old’ bit!

    I’ve been told all my life that medically I’m an oddity so yesterday was no surprise really. Most people strive to be ‘different’ but I long to be told I’m just the same as everyone else!

  5. Bendy Girl says:

    I’m glad you’ve found the cause of these problems. I read the information you linked to, seems like collagen plays a significant role in this, doesn’t it always with us?!
    Hope your holiday does you the world of good and you’re feeling better very soon, good luck with the next round of investigations too
    BG x x

  6. Ian says:

    One GP advised a colleague to stock up on all his medications while away dipping his toes in the Med!

  7. Steph says:

    Hi! Ian

    I use the Drugs Payment Scheme to cope with the cost of medication. We pay out €100 per month for the whole family after which all prescribed medication is free of charge (that is, until Harney gets her hands on the scheme grrr!). As my own basic prescriptions cost well over that limit and others in the family are also on repeat prescriptions, I always feel that for once we are getting some help from the State. We also claim tax relief on our drugs expense (12 x €100) every year. Under this scheme, I don’t see how it would help to buy cheaper medication abroad?

  8. Baino says:

    Most excellent news, let’s hope the medications work and you can have a poo free trip! I must say it’s fairly typical of you to tax medical minds and come up with some rare condition!

  9. Steph says:

    Bendy – Sorry, I omitted to reply to you yesterday.

    You’re right about the collagen. When I read up on the condition after my appointment, I could clearly see the link with EDS. Oh well, another name to add to the pile 🙄

    Baino – You got stuck in the spam bin again.

    Finger on the pulse as always. Those who know me well, know that Steph doesn’t do things according to the book. I had a more comfortable night last night so I’m hoping that the medication has begun to hit home. And you’re right, it was fantastic to get a diagnosis. I’d be in an awful state if no help was forthcoming.

  10. achelois says:

    I am pleased for you that you have an accurate diagnosis. Still doesn’t make living with the condition any easier I imagine. Having just had a diagnosis about my eye it seems wonky collagen plays a factor in just about every part of our EDS bodies. Hope you have a wonderful holiday and agree that codeine should help abate ‘symptoms’ I am an EDESER who does not really agree with the constant use of NSAID’s unless their is active inflammation as I read an article years ago that said their was doubt whether they ‘may’ not actually help with EDS as if there is no inflammation they make make joints more vulnerable to injury. Thankfully I am allergic to them so never have to have this discussion with a gp/pain specialist I just say they make me itch and thats it. So I take dihydrocodeine and oramorph for breakthrough pain, bizarrely the dihydrocodeine actually seems to help with my sometimes very severe IBS. Obviously not nearly as distressing as your condition but as a fellow EDESER I do understand how many of our symptoms seem related to the collagen factor. Take Care.

  11. Ian says:

    Steph,

    Unless you are going to pass the €100 a month mark, some of the savings can be significant. A friend will buy me half a dozen Ventolins for €24 in Spain as against €55 here – I’m told they can be had for €2 each in some countries. Even with tax relief, the Irish price is still far higher.

  12. Steph says:

    I’m back!

    achelois – Hello and welcome! It’s lovely to hear from another EDSer (thanks to Bendy!).

    I welcome your views on NSAIDs. I have a long history of inflammatory problems and with a strong family history of rheumatoid arthritis, my GP obviously feels NSAIDs are appropriate. However, as a gastric ulcer and colitis have been added to my medical history in the past year, I think perhaps it’s time my medication was revised. Thanks for giving me the push needed.

    I’m sorry to hear about your eye problem. I’ve been lucky enough to have perfect vision all my life (one of the few bits of me that works normally) but over the last couple of years, I’ve gradually become short sighted. At my age (52), I should be becoming long sighted but of course I’m doing things the wrong way around! I had wondered if EDS was playing a part in it and now after what you say, it seems quite likely that faulty collagen is to blame. We EDSers don’t get much luck do we?

  13. Steph says:

    Ian – Sorry! I should have acknowledged that fact. I’m so wrapped up in my own woes at the moment, I didn’t stop to consider others. I would do the exact same if it meant a saving.

  14. […] • Blog: microscopic colitis & EDS […]

  15. […] threatening. Prevention and treatment is heavily dependent on antibiotics. I suffer from a form of microscopic colitis called collagenous colitis (CC) which has developed in response to antibiotic treatment for my head […]

  16. Anna Waldher says:

    Hi.. just found your site. I was recently dx with CC after six weeks of chronic diarrhea. I knew of colitis, but thought of it as an “elderly” disease (although I am getting older…44 and I am an RN), but truly never thought it could be me????? I have felt truly sorry for myself, even though I should feel fortunate because it could be much worse. I just want to say thank you for sharing your story.

    Anna

  17. Steph says:

    Anna – Lovely to hear from and thank you for your kind comment.

    It’s always nice to hear from someone who has been on a similar journey. I hope your CC has been successfully treated? My colitis is now well-controlled with a moderate dose of Asacolon and I no longer require steroids (Enterocort) to reduce inflammation.

    I’d be very interested to hear from you again, with a progress update.

  18. Kelly says:

    Hey, I just found this online and wanted to say that I too have EDS and MC. I was diagnosed when I was a child with the MC (32) now. Glad you found out what was wrong!

    • Steph says:

      Hi! Kelly

      Thanks for leaving me a comment. It’s always good to hear from other EDS’rs and you’re the first one I’ve heard from who has MC as well.

      It’s now almost 3 years since I was diagnosed with microscopic colitis and I remain on a relatively high dose of Asacolon to keep the symptoms under control. I’ve also had steroids (Enterocort) added a couple of times when the MC has relapsed and been hard to control.

      Having benefitted greatly from the treatment for MC (I was 52 when diagnosed), I now realise what I’d been putting up with for years. Hindsight is a fine thing!

  19. Percy Kinkel says:

    Like Crohn’s disease, another common IBD, ulcerative colitis can be debilitating and sometimes can lead to life-threatening complications. Because ulcerative colitis is a chronic condition, symptoms usually develop over time, rather than suddenly.

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