I am looking for others diagnosed with microscopic colitis

@petepat3234 - I was first diagnosed with collagenous colitis 10 years ago- out of the blue. None of the OTC meds did more than allowing me out of the house for a couple of hours. At one point it was so bad I could not leave my room/ bathroom. The GI doctor then treated me with methotrexate. I was also extremely weak from loss of fluids and electrolytes. I drank Gatorade and Pedialyte. The illness returned after a year or two- waxing and waning, leaving me very exhausted and weak at times. Budesonide took the edge off symptoms and prednisone made me feel normal- until I stopped it. Finally, 4 years ago, I was put on immunosuppressive Imuran for several months. It was rough but it worked.
I ended up with normal function, except IBS, but feeling extremely exhausted. In my mind it is the result of chronic”acute” stress for years when there was pain/ discomfort every day - like being burned out.

Hi! First of all, I am so sorry your son has UC. Yes it is a chronic condition, but there are several ways to treat it and some people do very well with first line treatment. I am assuming the doctor has prescribed mesalamine (some brand names are Lialda, Canasa, Asacol). These can be taken orally, rectally or both. If the UC is ulcerative proctitis, they usually start you with the mesalamine suppositories. Some people stay at that level and do well on these drugs for years! I started with proctitis but the UC continued to move up the lower intestine and became pancolitis. The oral mesalamine and suppositories worked well for me the first few months and I believe they would have continued to work well, but I developed drug induced pancreatitis and had to discontinue immediately. That's when things became worse quickly and it was a struggle and a learning curve to see what else would work.

I am hoping your son does well with the mesalamine! Next line would be steroids and they usually start you with budesonide, which is safer than prednisone, but either one is short term, just to calm things down; they are both available rectally too. I am currently on the biologic infusion, Entyvio, and that seems to be working well; however, I had started a plant based diet a week before starting the infusions and I am thrilled to report that things have been "normal" for almost 3 months! There has been NO bleeding, no diarrhea and bathroom visits have decreased from 12-15 daily to 2-3! I have also been maintaining weight (I had been losing a half pound a day!) Despite the science behind the biologic, my doctor strongly supports the plant based diet, and there is a lot of clinical evidence that it does indeed make a difference. If he starts out slowly, just eliminating dairy, and then meat... it may be less painful. I personally don't miss meat at all, but I do miss cheese and ice cream, but this new way of eating is a small price to pay after what I have been through. When my doctor told me a few months ago that the UC was fulminant, and recommended a colorectal surgeon, I was terrified.

So I would recommend that he try the mesalamine (I am assuming that's what he'll be taking). I hope and pray this will work for him and the UC will stay at this level!!! I am also taking the probiotic, VSL#3 (also recommended by my GI doc) twice a day. So, that, a plant based diet, and exercise are what I would advise, based on my experience. It is a horrible disease, but there is hope and there are many things out there that do work. Everyone is a little different in how they respond to different treatments. His doctor can monitor with labs (blood and stool) to check the inflammation markers and scope to check the mucosal lining, I wish you the very best of luck and hope I have answered some of your questions. Please don't hesitate to reach out if you have any other questions. It's amazing how much you learn when you have a condition like this, and you get to the point where you're not even embarrassed talking about poop. LOL
Good luck
Donna

Kristi, I was diagnosed about 4 months ago with Lymphocytic colitis after weeks of discomfort. I was able to get it under control with probiotics, decreasing my caffeine intake and watching what I ate. Another doctor recently put me on antibiotics for another problem and now the colitis has flared up again. Like you, I am new to this, and would appreciate any help others have to offer.

<p>I have MC. Drs. are saying it might be caused by an Autoimmune condition. Does anyone know about this.</p>

@washalien - You have been sick for a long time- I know how that feels. Life passing by so fast. I had collagenous colitis initially and later on nondescript patches of inflammation throughout my GI tract. At first there was a trial of medication elimination, food elimination- no change. Budesonide was the best except for prednisone. By the way, I had breast cancer many years ago. I had severe intestinal reaction to chemo which finally was thought to have caused my chronic microscopic colitis. I decided to try immunosuppressive medication because I just could not live like I did. I was on it for several months and it worked. I got monitored monthly. I did have many infections, which is why I stopped it.
I’m happy it worked