Collagenous Colitis and sticky stool

[greenorest]

Hello everyone,

I was diagnosed with collagenous colitis a few weeks ago after about 6 weeks with really bad diarrhea (f, 36 years, otherwise healthy). Treatment is budesonide (9mg, for 6 weeks, then 4 weeks of tapering, now is week 4). Budesonide stopped the diarrhea within hours(!). I feel great since then. Apart from the budesonide, I do not take medication and have extremely rarely during my whole life.

However, I noticed one peculiar thing:

The consistency of my stool completely changed since I take the budesonide. For as long as I can remember, my stool had a peculiar "sticky" consistency which made me use a lot of toilet paper.
Now (with budesonide, starting with day 1) the stool is formed perfectly and I virtually do not need toilet paper. One sheet does the job. I never had as good a status of my digestive system during my whole life.

Has anyone noticed something similar? I would guess that the "sticky" stool I had all my life was never really normal. Does anyone have ideas about the reason behind this? May there be a connection to bile acids or maldigestion? Did I have a "mild" form of my collagenous colitis all my life?

I was tested negative for celiac (igA blood test: Transglutaminase negative, total igA normal) and fructose intolerance by my doctor. I did experiment with gluten free diet. During the phase with diarrhea, ~14 days of gluten free food did not change anything. I did work with a dietitian, detailed protocols and so on. Nothing I changed made any(!) difference in symptoms. The only thing that helped the diarrhea was fasting
I continued the food "testing" while taking the budesonide. 2 week I used gluten free, after that 2 weeks with gluten. There was no difference. I feel great no matter what I eat.

Another thing that was diagnosed was a Vit D deficiency. I now supplement Vit D and try to be out in the sun as much as possible. (Not always easy, living in Germany where weather is often not sunny).

I'm looking for good options of long-term management of CC. I want to avoid long-term use of Budesonide if at all possible. (Possible side effects, plus its on the doping list and therefore I cant start in sports events (amateur)..)

Best regards, Tina

[tex]

Hello Tina,

Welcome to the group. Interesting observation about stool consistency. I have no idea what the cause might have been. I suppose it's possible that it might have been bile, because budesonide does have the potential to enhance bile acid uptake (reabsorption). Another possibility is that you had preexisting chronic inflammation that contributed to the problem. I don't recall anyone ever mentioning that issue in a post before.

The reason why you never saw a response to the gluten-free diet is because for most of us, it takes at least a month or so for the diet to begin showing results. And you can't just avoid gluten — certain other foods must also be avoided, or the diet won't work (in most cases). A few of us see results in a few days, but most or us require much more time than that.

If you want to live the rest of your life with the disease in remission while taking no drugs, you'll need to learn how to modify your diet to avoid all the foods (and medications) that cause your immune system to produce antibodies against them. Otherwise, published medical research shows that 85 % of MC patients relapse when a budesonide treatment is ended.

You can adopt an exclusion diet (that avoids all the common problems), and then find which foods are a problem by trial and error after the budesonide is out of your system, or you can order stool tests from EnteroLab in Dallas, Texas. Those test results will show you exactly which foods you need to avoid.

I agree, at your relatively young age you certainly don't want to be taking a corticosteroid as a long-term treatment, because the side effects would eventually cause you many problems. But fortunately we've found that with the proper diet changes, we can easily maintain remission indefinitely. For example, I've been in remission over 15 years now, and I don't expect that to change in the future.

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

Tex

[dottydog1959]

Hi Tina
Last time I looked budesonide was only on the WADA "banned in competition" list rather than banned both in and out of competition. It's listed under S9 glucocorticoids. I'm on 3mg/day and I have qualified to compete in international age group events which are drug tested. My understanding is that as long as I don't take it within 12 hours of the start that's ok. So I just miss the dose on the morning of the event. If I get tested (I haven't yet) I must declare that I take it. But obviously check doping regulations for your event yourself.

[armstrongpilot]

I've had the sticky tp thing as well.....when I'm not flaring it goes away. Currently flaring....baby wipes help

[brandy]

Tina and Dotty,

Impressive that you all are doing international sporting athletic events!