I strayed and now I'm paying for it :(

[LauraGld]

Morning to Tex and everyone.

I made a big mistake....I decided to explore the Low FODMAP diet in the hopes that I could expand my food choices. I had read many people on another MC support group that felt their digestive symptoms improved. The thought of being able to eat salad or even a piece of lettuce again enticed me. I began by reading endlessly about the Monash University approach...I bought the app with extensive information about the diet and decided to take a leap of faith and give it a try.

I added in a very very very small salad (a few pieces of soft bib lettuce and some olive oil and apple cider vinegar) with my first evening meal of a simple turkey burger and a very small slice of avocado. I still had some cholestyramine in my system so I didn't have any adverse symptoms. The next day I did the same...staying with my limited MC diet and a small salad. By the end of the 2nd day loose stools started to happen with major gurgles....by the third day I was in a full blown flair of WD and tiny urgent poos many times a day after the WD had cleaned me out. I have now been back to my simple diet of chicken/turkey, rice, no fruit or veg for now and will introduce veggies cooked until soft when the inflammation improves......sigh......

My GI had me on cholestyramine to help break a flare that had started when I got covid just before Thanksgiving. I took it for two days and then developed itchy hives all over my torso. My GI is now ordering pure cholestyramine without all the dyes and artificial sweeteners to see if I can take it without an allergic reaction. He does not want me to take this long term...just as needed if I get a flare that is particularly stubborn. It should arrive from a compounding pharmacy in a couple of days.

What do we think about cholestyramine? Tex do you have any thoughts?

I am angry with myself for trying something that clearly threw my body off course. Now I am back to my most limited diet while I try to bring the inflammation back... Christmas stress I know is a factor.....but the food really did me in :(

I feel like such an idiot.

Wishing everyone the best of the holidays

Laura

[tex]

Hello Laura,

Sorry to hear that you relapsed. The Low FODMAP Diet works for some MC patients, and it can be modified to work for most of us, but in its original form, it definitely will not work for all of us who have MC. I've been in remission for almost 18 years, now, so I could probably safely eat salads, but I'll never know, because I'm not likely to ever try a salad.

My thoughts on cholestyramine are that when carefully following the proper diet for a long enough period doesn't bring remission, bile acid malabsorption (BAM) is probably the remaining problem. In that situation, experimenting until you find the proper dose of cholestyramine should bring remission. Some MC'ers in that situation are able to wean off the colestyramine eventually, while others find it necessary to continue the treatment indefinitely. If you take the cholestyramine at least two hours after, or four hours before you eat your meals (or take any other medications), it shouldn't cause any problems by sequestering the nutrients in your food or reducing the effectiveness of your medications. If you schedule taking it so that it doesn't interfere with your meals or medications, the only long-term effect (which usually isn't negative) is that it will lower your cholesterol level.

I hope this helps.

Tex

[brandy]

Cholestyramine helps many many MCers.

I can eat small daily salads but I didn't even attempt them until around year 6 of recovery.

[LauraGld]

Thanks so much Tex. Thankfully after sticking close to my MC diet for the last two weeks I seem to be back on track. I believe I will also stay a way from salads for a very long time possibly forever. It really made a mess of my digestion. Feels so good not to be spending endless hours near the toilet and to have a normal poo for Christmas

I may not need the cholestramine but I will have it on hand just in case...my GI said I may be able to use it to pull out of a flare.

Thanks so much for your feedback and help.

All the best,
Laura

[LauraGld]

Thanks for the feedback Brandy....I am just coming up onto a year of following the MC protocol. Healing is clearly something that will take a very long time. To get some balance back into my life make it worth it.

All the best, Laura

[HockeyMom]

Can I ask why cholestyramine is the emergency drug to pull you out of a flare? Because of the itchy hive reaction?

If it works, it works! My extensive experience with it is it takes awhile to work and in my case I take a massive amount of it daily and have been for 6 years. I truly believe most people who need it either don’t take enough, don’t try it for long enough or maybe both.

Diet and budesonide didn’t fix me..believe me I tried for 2 solid years. The Plains Indian diet took me down to a skeletal 99# with continued diarrhea. I didn’t cheat either. I only cranked the cholestyramine up because it seemed to help some..and the two times I stopped taking it were disastrous.

We are all different. I also continue to need a decent amount of Betaine HCl with every meal...and I need digestive enzymes with each meal also. When I cut those two extras out, poop quality goes bad no matter how much cholestyramine I take. Blame it on my Swedish side I guess. I eat and drink whatever I want. 6 years ago my life was awful. Now I’m back to my normal weight . I don’t have any side effects with cholestyramine . I do take fat soluble vitamins and my magnesium ..but that’s it.

Laine

[LauraGld]

Hi Hockey Mom....sorry to get back to you so slowly.

I am managing fairly well with diet but sometimes a flare comes on and it's hard to pull out of it. My GI suggested Cholestyramine as a way to just stop the diarrhea while I got on track. I had a reaction to it....very itchy so I have found a compounding pharmacy that is making it up for me with no additives to see if I can tolerate it :)

So glad you're doing well now....I never heard of the Indian Plains Indian Diet?

I'm not flaring anymore...I added 2 psyllium capsules with my meals and it has made a huge difference. On day 3 I had a perfect poo!!!! Hoping it lasts

Stay well :)

Laura

[HockeyMom]

I kid about the Plains Indian diet. That’s what my co workers in Denver called my diet...game meats, no grains, gluten/dairy/egg/soy free. Basically what the Plains Indians could hunt and gather....extreme!

Laine

[LauraGld]

Very much like the paleo and MC diet...

Hope you doing ok :)

Laura