I am looking for others diagnosed with microscopic colitis

Good for you Peggy, getting your shots.
I'm having trouble gaining any weight, don't know if its the infusions or old age, ha. I will gain a pound then loss it, pretty discouraging. I have lost over 60 lbs since I started these digestive issues. I walk twice a day, morning and evening and "pump iron" 3 times a week, could be part of the reason I don't gain any weight.
Take care.
Carol

Hi Carol, Yes indeed, exercise does seem to help weight loss, even when you don't want it to! About 6 years ago I lost a lot of weight when I was having continuous flareups. I felt nauseated for a good 3 years, couldn't eat, and had the accompanying diarrhea at intervals. I was hospitalized 4 times at monthly intervals in 2017. No one could help me except tell me I had IBD and that I needed my duodenum removed.. I was also weak so exercise wasn't something I was doing. Thank heavens for Mayo Clinic. Every state should have one and fortunately Arizona does. (I live near Phoenix.) I had many different tests and finally started to get answers. Crohn's Disease! Fortunately I started to respond to medication. I was initially on Humira but was diagnosed with chronic lymphocytic leukemia (CLL) in 2020 so my doc switched me to Entyvio, which has less of an immunosupressant factor. At some point with the Humira I began to get better. I regained the weight I had lost (now I want to lose a little weight!) and enjoy eating again. As for the leukemia, it is very stable. I never had any symptoms and am not requiring any treatment. I've been very fortunate.
I hope you are continuing todo well with the Entyvio. Your wt loss could be a result of the inflammatory process of Crohn's. If that gets under control, the weight may stabilize. Stay healthy!

Boy, Peggy, have you had your share of health issues !!!!
Thank goodness for Entyvio, I had been sick for 3 years, constant diarrhea, cramping and crippling fatigue. None of the medications prescribed worked for me. The gastroenterologist assured me this gastro problem would not kill me but I had my doubts.
I’m feeling 100% better than I have in the past.
My son lives in Bull Head City, AZ and owns an auto repair shop. I like Arizona, just a little too hot 🥵 for me. I live in Cerritos CA.
Good corresponding with you. Carol

It will be 6 months since my symptoms started before I can be seen at the Mayo in AZ. I was diagnosed on the 3rd of August and can’t be seen until Nov. 30. I have been a mayo patient for 13 years. I have done 6 weeks of imodium and a few weeks of pepto. I have budesonide and I guess I will have to start it soon. I am very discouraged. Some of you have done the Entyvio, is this something I can hang some hope on. Celiac Hashimotos and now Lymphocytic colitis. I have no idea or direction about this new diagnosis or what I am dealing with. I cannot get in anywhere else. Some offices won’t even treat colitis. I can't live like this. Any encouragement would be very appreciated.
Thanks

DEFINITELY consult the work of Wayne Persky of Persky Farms. In addition to his books on MC he also started an excellent discussion group for people with MC: Microscopic Colitis Discussion and Support Board.
(I can't share the site address because I am a new member, but just search for Persky Farms Microcolitis Discussion Forum.) I have collagenous microscopic colitis, diagnosed after six months of constant night-and-day liquid diarrhea misery after one of the gastroenterologists I was consulting finally ordered a colonoscopy with biopsy. Sticking to a simple, bland diet (and drinking only filtered water) is crucial. MC is caused by inflammation. Food sensitivities we develop over time cause histamine hysteria in the gut. Things you used to eat are no longer tolerable. THE SIMPLER YOU MAKE YOUR DIET, THE FASTER YOUR RECOVERY. To stay in remission, you may find it best to eat just five foods every day – a meat, potatoes and a few more items. Food is medicine. I was eating fruit and vegetables to try to get over the illness until my family doctor told me I needed to be eating only Yukon Gold potatoes and bland, baked meat - organic chicken and pork tenderloin - stopped one of my worst flareups. Experts say animal protein is the key element for healing the gut, so aim to eat large servings of protein at each meal. The type of protein depends upon what you find that you can digest with no drama. Organic or free-range is best because it is most likely to not contain inflammatory elements. We lose the ability to digest large (normal) amounts of sugar while our intestines are inflamed, so if we eat large amounts, most of it will pass into our colon undigested, where it is fermented by bacteria, producing gas, bloating, cramps, and diarrhea. Once you have identified the few safe foods for you, stick to a bland, simple diet of only those foods. If you try to add variety, you may never get to remission. If you're still hungry, or if you need to take in more calories, just eat larger helpings of the foods you have found to be OK - causing no gut issues. When you are at your worst, a bare-bones diet that focuses on eating of clean proteins and hydration with water is the most helpful. Meat contains all the essential amino acids needed for good health. A lot of protein is needed to heal the gut. Budesonide and other medicines can treat the inflammation but they are not a cure and are generally only prescribed for a few months time (although recent studies show that a maintenance dose of 4.5 mg of Budesonide is well-tolerated by most people). Persky's book and the MC discussion board on the Persky Farms site give practical, simple advice on lifestyle adjustments and also get into the nitty gritty of the gut issues that cause all types of MC. Most of the advice I have shared here came from poring over all of the contributions on the Persky Farms site. Hang in there, everyone!

I know exactly what you’re going through, please start the Budesonide, it may help until you can see the gastroenterologist. I suffered for 3 years before I was put on Entyvio. Make it clear to the doctor how much you are suffering.
All you want is your normal life back. I totally understand.

So the entyvio works good…no side effects?

Do you stay on entyvio indefinitely?

I have no side affects from the Entyvio infusions other than I can’t seem to gain any weight. It took awhile for the infusions to start working, about the second infusion before the diarrhea was under control and about 4 months before the cramping stopped. Entyvio is a God sent for me, I feel normal again.
If you have any other questions about it please let me know.

The gastroenterologist told me I would probably be on Entyvio for the rest of my life. I go to an infusion center every 8 weeks for the infusion, takes about 40 minutes. Small time out of my life to feel good again.