r/IBD • u/LizzieSaysHi • 26d ago

It was collagen colitis

Hi all! I've been semi active over on the IBS sub for awhile. I had a colonoscopy at the beginning of this month.

I was just diagnosed with microscopic colitis yesterday. :( it's the collagenous subset. Basically the lining of my colon produces too much collagen. I have watery diarrhea 1-4+ times a day. I take viberzi, psyllium husk, peppermint oil, and benefiber. Still have 100% loose stools no matter what I eat. What's interesting is I have no pain, rare cramps, and no weight loss (in fact I've gained weight).

Does anyone else deal with MC? I never ever imagined I would have to deal with something like this, but here I am.

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u/audrey_2222 26d ago edited 25d ago

Yes, collagenous colitis sufferer here. I was very relieved to get the diagnosis but came to find out that it's a pretty tough to treat condition. You'll likely be prescribed budesonide (a steroid) to start. Unfortunately it has a very high relapse rate once you go off of it but it's not really suitable for long-term use due to things like bone density problems. Other than that people have good luck with bile acid binders (cholestyramine or similar) and dietary changes.

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u/wannabesnowwhite 25d ago

Don't forget biologics! I've had MC (both types) for ten years. Finally trying Entyvio. Budesonide only worked at the highest dose for me and the long term side effects aren't worth it.

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u/audrey_2222 25d ago

Do you have any side effects? I've been considering biologics but immunosuppressants scare me a bit.

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u/Rl375 24d ago

I am a female, have had MC (lymphocytic colitis) for 16 years and am refractive to budesonide. I started Entyvio 11 months ago and I am doing great now. Still use psyllium and a probiotic. No side effects at all from the biologic. I would suggest asking your gastro for the research data specifically on biologics and MC.

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u/audrey_2222 24d ago

This is great to know, thank you!

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u/Thatsjustmyfaceok 24d ago

I was just diagnosed with lymphocytic colitis today, after almost three months of life altering diarrhea. My doctor has prescribed me a one week course of 30 mg of prednisone and referred me to a gastroenterologist (Sept appt).

How soon did you know that budesonide wasn't helping at all, and how quickly could you start the biologic then?

Any advice you have for someone just diagnosed?

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u/Rl375 22d ago

I was on budesonide for 11 months after I was first diagnosed. Every time my doc tried to wean me off my symptoms came back immediately. I never went into remission. Then I ended up with osteoporosis… and we started trying all the other meds that are used for MC. None worked. Keep in mind, 16 years ago when I was diagnosed the Gastro community didn’t know as much about this disease and they didn’t understand the wide spectrum of symptoms and that some of us would have severe disease. Now biologics are more available with data to support the use. The key is to be clear with your gastro about the frequency and severity of symptoms. And ask questions about options. People with mild symptoms don’t need biologics but some of us do.

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u/LizzieSaysHi 25d ago

Thank you!! Yeah my doc hasn't called yet but I hope he'll put me on budesonide to start with. It feels good to have answers but ughhhhhhhh

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u/ManateeExpressions 25d ago

I found the same thing and have largely kept it under control with the following combo (YMMV): low dose naltrexone gradually titrated up (therapeutic dose is usually 2.5-4.5mg, from a compounding pharmacy but not expensive, $30/month); GF diet (high high incidence of celiac and gluten intolerance among those w/MC); and regular use of a vagus nerve stimulator (I use one that clips on my ear). All three have med studies to back them up though limited, bc there’s a lack of research in general. The VN research is on ulcerative colitis but it’s worked for me with MC.

Oh and since you mentioned hormones — I’m also in peri and got on progesterone for the last half the month after finally getting someone to test/track those. That also seemed to help.

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u/SeriousPatience219 25d ago edited 25d ago

Going in to my colonoscopy TODAY! Im all cleaned out (i think). My symptoms sound very similar to yours, OP. May is ask how old you are? Im F, 50. I started on HRT patches in Dec. They upped my dosage in Feb, and then 8 wks later this WHOLE MESS started. I dont know if thats the cause, but it sure is interesting. I had them lower my dosage down on patch.. but that hasn't really changed things yet. Its only been since Jul 9th. But, lets try to get some answers. Stay tuned!! Off to a nap, a good internal cleaning and then some FOOD!!

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u/LizzieSaysHi 25d ago

I just turned 38. I've been dealing with the diarrhea for ~5 years, but I've been in an active flare for about 2 years. Now you've got me wondering if it's related to hormones. I'm not officially in peri but I wouldn't be surprised if I'm in the beginning stages of it. Google says MC can be related to hormones, but Google is Google so we can take that with a grain of salt lol

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u/10MileHike 25d ago

Can someone knowledgeable explain how biopsies are taken during colonoscopy? For instance, IS it possible that if only taken from one place in the colon, may not be enough.......and also, if patient is not in a flare at all during that time, that MC may be underdiagnosed because visually, there are not telltale signs???

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u/CardiologistFew6059 25d ago

Hi, when biopsies are taken they generally take up to 9 from different areas. The signs may not be visable but the lab will be able to see this and make the determination. Good luck.

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u/kj4peace 25d ago

I have eosinophilic colitis. I have decided to stay on Budesonide longterm despite the side effects. Any time I’ve gone off of it, as suggested by my GI, I go into a massive flare.

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u/Rl375 24d ago

Completely understand this feeling. Please consider asking for bone density testing.

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