I am feeling hopeless with Colleagues Colitis

[Donna55]

I started having diarrhea in March 2021. I had a colonoscopy done in May 2021 and the dx. is Colleagues Colitis. I have been on every medication you can think of and absolutely nothing has worked for me. Today my GI Dr. called and she feels that I have Refractory Colleagues Colitis. I am not sure what the difference is between Colleagues Colitis and Refractory Colleagues Colitis. So if anyone know the difference, can you please let me know??

Today she ordered yet another med. called Azathioprine. I have never heard of this med., if anyone has been on this med. please let me know your thoughts on this med. I am still having diarrhea every day and night. I run to the toilet at least 15 times during the day and at least 4 times through the night. I am 55 yrs. old and now wearing a diaper 24/7 due to having so many accidents.

My husband and I are very active with hiking and traveling. I have had this since March, my life has been mainly at home due to needing to use the bathroom so many times. This disease has really put a strain on my life. I am at a loss........

[tex]

Hi,

Welcome to the group. Refractive collagenous colitis simply refers to collagenous colitis (CC) that doesn't respond to medical treatment. And that's because the medical treatment doesn't work at all for many of us. You'll be better off treating yourself, if you want to control the disease. Azathioprine is an immune system suppressant that was originally developed for organ transplant recipients. Personally, I wouldn't even consider taking an immune system suppressant during a Covid pandemic,unless I had no alternatives, because it will greatly increase your risk of dying from the virus. Fortunately, you have an alternative. Why don't you simply change your diet, like the rest of us. If you don't eat any foods that cause your immune system to produce antibodies against them, the inflammation will fade away, and your CC will go into remission.

A good place to start is the multi-page discussion at the link below:

viewtopic.php?f=79&t=22328

And this issue of the newsletter published by the Microscopic Colitis Foundation, that can be found at the link below, should be helpful.

https://www.microscopiccolitisfoundatio ... 479987.pdf

You don't need a doctor. You can stop the diarrhea yourself, by being very careful about what you eat.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Gabes-Apg]

donna
welcome to the group and sympathies that you had to find us. (and that you are wearing diapers 24/7)

You can go hiking again!
if you are willing to embrace the suggestions and guidelines that have helped thousands of people here.

I was age 40 when Dx'd. and we have many members in their 20's, 30's etc.
with the diet and lifestyle changes I have minimal symptoms lifestyle.

12 years on I only get loose motions about 1-4 times a year and it does not last more than 2 days. Generally it is only if I get flu/virus. and recently from having to take antibiotics after a procedure.

Read the articles that Tex provided the links to - take some time to read the posts aimed at new people / and also success stories area, you will see what others have done, what worked, what didn't and how long it took.

I can assure you that every ounce of effort and time to make the changes is worth it!

[brandy]

Hi Donna,

Yes, you will get better.

Read everything you can on this website. Do you have a copy of Tex's book? The link to purchase is at the top of the website. It is worth every penny.

Diet changes are very key. If you feel like you need meds generally the first meds that are prescribed are:

budesonide (entocort), uceris (another version of budesonide, cholestyramine, or pepto bismol protocol (over the counter)

Again, diet is key.

I've been in remission for 9-1/2 years and hiked extensively in Montana during that period. I have been on no meds during the last 9-1/2 years.

[brandy]

Hi Donna,

Sorry, I just read that you have been on a lot of meds.

Again, diet is key. Eliminate OTC supplements for now is key. Some unrelated prescription meds will prevent going into remission. Look into getting off of other prescription meds if your doctor approves.

[jessica329]

I totally understand your feelings! When I was first diagnosed 9 years ago, I was going 20-25x a day. I can tell you that this disease will wax and wane. Diet is HUGE and I had to eliminate my triggers (for me that's all alcohol, gluten, dairy, fatty foods, all processed foods and no eating out). I keep a daily detailed health journal to identify triggers (I find that if I don't get 9-10 hours of sleep, I'm more prone to flaring).

[Marcia K]

Hi, Donna. When I found this group 7 years ago, it was difficult to believe that I would get my life back. But with their help and Tex's book, I have been in remission by the Pepto protocol & dietary changes. I never cheat, it isn't worth it. I walk, hike, kayak, etc. You will be able to as well. Hang in there!

Marcia