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Anybody diagnosed with microscopic colitis?
Hi, wondering if anybody here has this for a dx. I have been having a flare for about two months, it is getting a little better with the meds but the doctor wants me to go on a short dose of steriods. I already have a muscle disease so hate to go the steriod route, (plus do not need to gain weight) lol. But if anyone has any hints for me I would appreciate it on how to control this. It is the longest flare I have had.
Susie
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@piemonte
Visbiome is an excellent probiotics. The doses run from 112.5 billion to 900 billion. I take the 112.5 billion. The Akkermansia is also very good for digestion and I take 100-150 billion. Both highly recommended by my GI. We also make our own kefir and I take lactose free, sugar free Fage yogurt. Very beneficial. I know it sounds like a lot of probiotics, but my G.I. assures me that with trillions of bacteria that we have in our gut, this isn’t too much. You do need to start each one slowly.
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2 Reactions@piemonte Visbiome is a probiotic. You can order it online: https://www.visbiome.com/products/visbiome-capsules-2-pack
@pichulita Thank you! I am always concerned about interacting with other medication.
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1 Reaction@janstur
I have the same issue. My friend turned me on to AlgaeCal. She's seen a 10% increase in bone density in six months. It's a calcium derived from algae. I took Fosomax before and that didn't help in the 4 years I took it so I thought what the heck, I'll try it. Have only been taking a couple of weeks so we'll see. I just weaned off Budesonide. Was taking every fourth day and my GI said it only lasts two days so what's the point? I don't have diarrhea so far so we'll see how I do. I've had stomach aches every day for probably a year but I've never changed my diet (I'm stubborn that way!). Have had MC for a year and a half now. I feel your pain!
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1 Reaction@janstur if your GI is inattentive, be cautious weaning off budesonide. My GI didn't mean me of properly. I was on B for 15 years. I took 1.5 months to wean and should have taken 6 months! I went into adrenal crisis and almost died! My GI then referred me to an endocrinologist to wean off. My adrenals were suppressed for 15 years with Budesonide taking over making cortisol, so I am fortunate that they started producing cortisol on their own again. That doesn't always happen when they are suppressed by meds for a long length of time.
@donnagail Thanks for the heads up. I think in my case, I was only on it for a year and a half and had already weaned myself off over a pretty long period of time (months) and I was only on 3 mg. every 4th day at the end. Still doing okay - fingers crossed. I hope you're doing well!
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3 ReactionsI was originally diagnosed with EPI. Was on Creon for two years with no relief. My gastroenterologist did tests snd determined I had Microscopic collagen colitis. Symptoms severe diarrhea (7 to 9) times a day, nothing else. Put on Budesonide 3 mg for three months snd weaned off. Did great for a short time snd relapsed. Put on Budesonide again for a month snd then relapsed. Wants to put me back on it along with a prescription for diarrhea medicine. My diarrhea is now waking me up at night. Is diet related to colitis? My doctor doesn’t communicate well.
First of all, find another GI. Yes, MC attacks are definitely affected by diet. When it flares up at first - BRAT diet. Doesn’t work on everyone. For me, about the only thing that works the first couple of weeks is Gatorade & Jello. Please don’t eat or drink anything that is red! Bananas are good & a great source of potassium, but eat green ones. Ripe ones will make it worse. Rice is good. Eggs are good. Slowly work your way up the carb table, do cut out all fiber, gluten, dairy. It will take quite a while before you can go back to fruits & vegetables, unfortunately.
@janstur I’ve had it for more than 35 years, which is longer than they knew what is was. I won’t take any type of steroids at my age, so I try to control mine mainly through diet. For years, stress was the main trigger of mine, but lately it seems to come out of remission more often for any number of reasons. However, I was warned that it does get worse as you age. Heat stress definitely affects it. Always has. Living here in Texas, I just stay inside all summer.
I’ve had lymphocytic colitis for 2 years. Been on budesonide and Cholestyramine. Helped a lot but I did gain 15 pounds on the steroid and I can’t stand it. Switching over to Entyvio infusions but will take a few months to kick in? When doc tried me off steroid I relapsed. Maybe with Entyvio I’ll be able to wean off? I think Remicade is similar.