Microscopic Colitis

The Microscopic Colitis Foundation is the BEST help for us with MC until GIs can find more helpful knowledge from a medical perspective…….
It is tough…… we need to support each other!!!! No others really understand!!!!

Hi Deb
Kayaking is lots of fun as long as you don't have diarrhea - then it is not fun at all!
Margot

To teresadean
I’m sure all people are different. That being said, I also know my MC is caused from using ALEVE for many many years twice a day. The reason I know this is because all I have to do is take one ALEVE and the MC is back.
As far as the budesonide is concerned I had such good results it was amazing for me. It stopped the diarrhea almost immediately. I only took it for a month when it was actually prescribed for three months. As I said, we are all different and the chemicals in our bodies are different and going to react differently in every person.
As far as diet goes I limited fiber only. I never gave that Wayne P. Diet a try. My microscopic colitis was short lived as soon as my doctor said it was being caused by constant daily over use of ALEVE. The one and only pain reliever I can take now is Tylenol. It doesn’t work as well but I have to live with that.
I hope you find out what is causing your MC. Pay attention to all medication and pain relievers you take. Microscopic Colitis is caused by inflammation in the colon. So it makes sense that it’s something we are ingesting. But I’m not a doctor so this is just my experience. It certainly can be different for you.

@margot6425
So much is fun but not when we have diarrhea!!!

So sorry for everything you've gone through! I am 65 and was diagnosed this year. I have lost 14 pounds and was already skinny. I can't seem to gain any weight. At first people thought I was anorexic which was really annoying. I have a good appetite and eat healthy foods. I had a bad reaction to Ensure a while back and don't want to take that. I was prescribed Budesonide the first time but 9 mg was too much. After the last flare-up they said take 6 mg. and that's doing the trick except for constipation off and on - just not everything in there. I've been reading on this forum about how people go off Budesonide and get a flare up so I'm really concerned that will happen to me too. I do drink kefir everyday which I think is really helpful, but pretty depressed overall.

@kjane322
That is great that your MC is in remission from leaving off the Aleve. It is basically an OTC NSAID and NSAIDs can certainly cause MC and GI bleeds too! My husband has RA since he was 25 …. He had a close to death GI bleed from the treatment of RA so many years ago (1977) he was diagnosed with RA and the first treatment at that time was 16 aspirin a day! Then NSAIDS were created and probably he took those at least 10 years. 9 units of blood as quickly as they could transfuse into him. The surgeon wasn’t hasty to perform surgery and the bleeding stopped in about 3 days (the surgeon said to us “he is a healing son of a gun”)! NSAIDS were removed from his medications and he was referred to a rheumatologist. So many medications over the years to help with RA inflammation and pain….. (even opioids). 2 years ago he stopped the opioids cold turkey (he never had any withdrawal symptoms, not that he could tell and I didn’t know he had stopped them). All the newest meds (no more NSAIDS) he has had many….one of the first was gold salts injections, so many I can’t recall them all. He takes a biologic infusion now, Actamera. He has had other biologics too. Eventually each medication he takes they stop helping and his rheumatologist prescribes another.
To have MC and GIs are so lax to find something other than Budesonide to treat the symptoms for me to eat as Wayne Persky says has been the best way to treat MC for me.
My husband occasionally has to take prednisone for flare ups but he hates how it causes him to feel…… the effects of steroids aren’t a good thing for us but I take budesonide when I have to.
I am soooooo Thankful that budesonide is now available when a person is diagnosed with MC and the symptoms are 24/7….. mine were and I am grateful my GI had my biopsies tested for MC…..no way could I havre continued to thrive with the 24/7 diarrhea that controlled every moment for 7 months of my life…….. the budesonide as you said got the MC under control after 4 months from start to weaning.
Now to keep flare ups at bay or away is my goal!!!!
Vomiting had become an issue and that caused me to adhere to the foods that Wayne Persky says are the only way to heal the inflammation. I am not a big eater (always a bit of a picky eater)…… I know I certainly cannot loose any more weight and likely won’t gain much unless I have to depend on a steroid to keep me from flaring up. I don’t know if that is a side effect of budesonide but I know weight gain is a side effect of many steroids.
I am so glad the budesonide works so well for you plus the elimination of Aleve. A known issue for MC are medications…… PPIs are another but GIs prescribe them as though they don’t know they are an issue for patients with MC……
*A portion of a newsletter from the MC foundation:

Take 3 capsules each morning and see me in 6 months.
As part of their treatment recommendations, most gastroenterologists advise MC patients to avoid certain drugs that are known to be commonly associated with the onset of microscopic colitis.
One of the first classes of medications recognized to cause microscopic colitis is known as nonsteroidal anti-inflammatory drugs (NSAIDs). Since then, additional drugs have been added to the list, including antibiotics, proton pump inhibitors (PPls), selective serotonin reuptake inhibitors (SSR|s), serotonin-norepinephrine reuptake inhibitors
(SNRIs), tricyclic antidepressants, angiotensin-converting enzyme (ACE) inhibitors, beta blockers, statins, and bisphosphonates, There are surely others that have not yet been identified

*My GI prescribed me omeprazole for the reflux that became vomiting……..
Sad that they treat patients with drugs known to cause MC…….

@janstur
A couple of weeks ago at Church an older than me lady sitting behind me & my husband at church raised up and asked my husband……
“Do you feed her”? I didn’t hear her and asked my husband what she said……(they smiled at each other).
I turned to tell her ….I eat but my food doesn’t stay with me …..I told her and her family I have colitis.
People have no idea (GIs either) how HARD this IBD is for us (GIs seem to not care)……..
I pray I don’t get sick with any thing else…… No weight reserve for any more sickness
I am sorry for the issues MC is causing you too!!!!!
Teresa

Wow, the audacity of some people! I can't imagine someone actually saying that out loud! So sorry! Yes, no one understands. And yes, no weight reserve for any more sicknesses! I am 5'4" and used to weigh 105. Now I'm hovering around 92. Can't gain!

I was diagnosed with MC last July and I was down to 85 lbs. I honestly thought I was going to die.

I spent several months w/a dietician who helped me navigate foods to help me gain a little weight and get my stools more normal.

I found a functional medicine doc and he's WONDERFUL! He tested my micronutrients in March and we found I was very deficient in many nutrients so he gave me some natural supplements and THAT'S when the weight came on. I was up to 98 lbs last month. One of the things I am taking is cell salts and trace minerals. I've lost a few pounds due to a minor flare, but my stools are now consistently normal and I hope to gain at least another 5 lbs to start. My usual weight before MC was 97 - 100 lbs. Maybe your body is lacking in something and that's why it's not uptaking nutrition. Good luck!

@pichulita
I sure wish I knew a dietitian and a functional medicine Dr to see. I live in North GA and it’s been 3 years and no Dr to date seems to care……. It is truly frightening to think they seem to let you die and do little to help you…… I don’t know what to do??? I fear everything I eat and I have followed strictly a diet that is recommended by Wayne Persky who founded the Microscopic Colitis Foundation. I truly feel he knows the diet that can keep MC in remission but it is so hard to do it causes unnecessary anxiety ….. and that enhances the issues caused by MC. I feel quite distressed presently and very confused….puccinia
I sure wish I knew a dietitian and a functional medicine Dr to see. I live in North GA and it’s been 3 years and no Dr to date seems to care……. It is truly frightening to think they seem to let you die and do little to help you…… I don’t know what to do??? I fear everything I eat and I have followed strictly a diet that is recommended by Wayne Persky who founded the Microscopic Colitis Foundation. I truly feel he knows the diet that can keep MC in remission but it is so hard to do it causes unnecessary anxiety ….. and that enhances the issues caused by MC. I feel quite distressed presently and very confused…..