I have a diagnosis...: Following my recent... - IBS Network

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I have a diagnosis...

BabsyWabsy profile image
17 Replies

Following my recent colonoscopy, I saw the consultant yesterday and it seems I have microscopic colitis. I was convinced it would be dismissed as 'just IBS', but no. Thankfully, it is the least serious form of inflammatory bowel disease and is treatable, I am told, with a specific type of corticosteroid. We shall see.

So I guess that makes me an impostor on this forum! :-) With this diagnosis, several other symptoms now make sense too, such as swollen joints and the occasional mouth ulcer.

BW

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BabsyWabsy
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17 Replies
EOLHPC profile image
EOLHPC

Good news! Wish none of us had immune dysfunction-related gastro illness, but, when we do have this, diagnosis is often hard to achieve. corticosteroids & immunosuppression meds can help hugely: They definitely do work well in my case!

Which inflammatory bowel disease have you been diagnosed with?

Wishing you every best wish

🍀🍀🍀🍀 coco

BabsyWabsy profile image
BabsyWabsy in reply toEOLHPC

Hi Coco,

That is encouraging. I am supposed to pick up new medication tomorrow, so interested to see if it works for me too.

My consultant says microscopic colitis, but did't differentiate between the two types, however, I think the meds I am getting are prescribed for the collagenous type. Until yesterday, I was unaware that there are two variants of microscopic colitis, so didn't think to ask.

Thanks for letting me know it works for you.

BW

EOLHPC profile image
EOLHPC in reply toBabsyWabsy

Thanks! 2 types of m.c. is new to me too....am glad research continues to refine diagnosis into variants...in my experience there is always lots of variation with these terms (eg my diagnoses include types of hypermobile ehlers danlos syndrome, lupus, sjogrens, vasculitis & primary immunodeficiency disease and more...and now gastroenterology is caring for me via NHS Crohns Disease protocols for Crohns-like IBD caused by my underlying immune dysfunction & connective tissue disorder diseases).

There seem quite a few of us here like me, diagnosed with AIDs & CTDs and being told they have IBS-like manifestations. But i seldom notice anyone who is prescribed corticosteroids for their IBS-like issues...although even officially published papers are discussing that some variants of IBS do show signs of involving inflammatory process. Meanwhile research continues....

BabsyWabsy profile image
BabsyWabsy in reply toEOLHPC

Goodness me, you do have a lot going on. It's a fascinating area of research. The more we know the more we realise we don't know.

b1b1b1 profile image
b1b1b1

Well, you're not an imposter, but there may be other sites on Health Unlocked that may deal with your specific condition. xx

TS1991 profile image
TS1991

Hi, good to hear that :)

What were your symptoms like? Was it cronic Diarrhea with weight loss, swelling of joints and dizziness? Or anything else...

BabsyWabsy profile image
BabsyWabsy in reply toTS1991

Hi,

Yes, all of those symptoms. One of the stranger ones is very sore lips, according to the GP who treated me for this, it is dermatitis. He arrived at this diagnosis before I had even sat down, so obviously did not consider any possible cause. All my symptoms make sense now.

TS1991 profile image
TS1991

I see, so was this your first colonoscopy or did they repete it because of ongoing symptoms.

I had similar symptoms but nothing came out in my first colonoscopy (an year back), further investigation was done a couple of months back however my GI didn’t replete the colonoscopy. Instead he repeated the endoscopy and asked me to go for capsule endoscopy (nothing came out).

Wondering if I need to repete the colonoscopy...

BabsyWabsy profile image
BabsyWabsy in reply toTS1991

Hi,

This was my first colonoscopy and no where near as bad as I expected. Microscopic Colitis is only diagnosed by taking biopsies and looking at the tissue under a microscope. It is not visible to the naked eye. I can confirm that because I watched the whole process on screen and no inflammation was showing.

Unless you had a biopsy and it was examined under a microscope, they would not have found microscopic colitis. It sounds like your symptoms are very similar. Maybe something you could discuss with your GP? I think it is often misdiagnosed as IBS from what I am reading.

TS1991 profile image
TS1991 in reply toBabsyWabsy

Ofcourse the biopsy was taken an year back, but was clean.

I’ll check if I need to repete it...

BabsyWabsy profile image
BabsyWabsy in reply toTS1991

Certainly worth asking the question. I think if they are not looking for it, they won't find it. Some stats have it as quite rare, 3-4 people in 100,000, but I don't know if this is accurate, as it is being found more often due to improvements in diagnostics.You can tell I've been doing my homework :-)

Eternity78 profile image
Eternity78

it is such a relief to finally get a clear diagnosis instead of the cloudy label of "just IBS " ..So is it like a subtype of Crohn's disease ?? i mean is it an Auto immune disorder where your immune system attacks its own tissues ???

BabsyWabsy profile image
BabsyWabsy in reply toEternity78

Hi,

Chances are it is autoimmune because I have other symptoms which I now realise are related. It is not as severe as Crohn's. My brother has Crohn's and we do compare notes. Also, inflammation is visible at colonoscopy with Crohn's.

Looks like autoimmune stuff runs in the family as we also have two type 1 diabetics who were both diagnosed aged about 11.

I hope the steroids work for me, but at the moment, I am struggling to get the prescription fulfilled, so fingers crossed for when I do get them.

Eternity78 profile image
Eternity78

Thank you for your reply ..i asked because i noticed in this forum that there are so many disease subtypes and other disorders that our local doctors here don't know about them or don't bother to test for them ..it's like either you have " just ibs " or Crohn's / Ulcerative Colitis ..but nothing in between !! and they don't like it when i explain to them the different possibilities that they may miss out ( doctor's pride refuse or feel humiliated to take guidance or hints from a regular patient )

Hope you get your prescription fulfilled and feel better soon ..Best of Luck 🌹

BabsyWabsy profile image
BabsyWabsy

I completely agree. My current GP, who referred me to the gastroenterologist admitted he knows nothing about this kind of thing. I suppose the clue is in the name 'general practitioner'. They have their areas of interest that they specialise in, but can't be experts in everything. They get precious little during their training on certain topics, such as nutrition or breastfeeding for example, so it is refreshing to find a GP who is honest about his lack of knowledge. Can be frustrating when they won't admit it. I am looking forward to the day when we start to be treated in a more holistic way, not as a series of separate ailments. But that's another discussion altogether.

kiwitaramerlin profile image
kiwitaramerlin

Glad you got the result. Hope you will get a good treatment.

BabsyWabsy profile image
BabsyWabsy in reply tokiwitaramerlin

Thank you. Just waiting to get my new tablets, which according to the consultant will give my guts a chance to heal. We shall see.

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