Frustrated

[lehrskier]

I have had collagenous colitis for about 25 years. I've been on this board and the previous one on and off over the years (keep losing my emails).
Anyways, things haven't been good the past two years and really bad the past 3 months. Even with taking 8 imodium and 8 Lomotil per day (plus budesonide for two months), I have up to 30 bouts of diarrhea per day, a few accidents a week and vomiting a few times per week. I've been gluten free most of my life (my mother has Celiac disease). and have been dairy/soy/egg free the past month. I don't drink alcohol, no coffee. The past week I've switched to just rice, organic turkey and bananas. The diarrhea has dropped to about 5 times per day. But I'm losing weight rapidly. I can only eat so much of the same foods over and over again with being nauseated. I think a major part of the problem is that I started chemo medication two years ago. However, I have stage 4 cancer and will die if I don't take the chemo medication.
I feel fortunate though, that I'm still running/backpacking/paddle boarding (understanding friends and I've lost my embarrassment about accidents in public). Not sure where to go from here.

[tex]

I can understand your frustration — you're in a tough situation. And if you're that active, you're probably burning more calories than you're taking in, which can only lead to long-term weight loss. Have you looked at the newsletter published by the Microscopic Colitis Foundation a little over a year ago, that you can read or download at the link below? It might give you some ideas for alternative foods to consider. Also, can you tolerate avocados? They contain a lot of calories. Coconuts, and (100%) coconut milk contain a lot of calories, and are generally safe for most of us.

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

At that activity level, you probably need all the calories you can get.

Also, many medications deplete magnesium. Be sure your vitamin D and magnesium levels are adequate, in order to keep your immune system functioning properly.

Tex

[Gabes-Apg]

If the budesonide is not helping maybe you need to consider different type of medication?

agree with Tex, whilst your body is reacting to the Chemo meds, you may need to reduce activity amount / increase calorie intake
and increase VIt D3 and magnesium intake to help body cope with the inflammation levels

if the priority is to take the chemo medication and not lose too much more weight then other things in life such as the amount of physical activities you are doing may have to be reduced.
I am not saying to stop them completely moreso adjust the duration / physicality of them to reduce the amount of calories you are burning

read the article that Tex has posted the link to.

The sucky part of life with MC, is that we have to adapt and embrace change in various stages of our lives. add in something like cancer and chemo drugs and even moreso we have to do the mental and emotional work of embracing change.

all the best