Your tips on how to live with Lymphocytic Colitis/Collagenous Colitis

@astaingegerdm I’ve had it for more than 35 years, but was finally diagnosed only about 10 years ago. Part of the reason was research wasn’t started for looking for different types of colitis until the late 1980’s, and a rush wasn’t put on it (mostly women get it). Also, the only way to reach a diagnosis is by biopsy of the colon lining in several places. Anyway, What is important to know is it isn’t going to kill you, though it may feel like it at 3:00 am. Try to identify what the main trigger is for your flare ups. For me it’s usually stress, heat stress at the top of the list. When I discovered that, I went into remission and stayed in remission for years. As I got older, I began to have other, major high stress events in my life so it came out of remission again. Sometimes it flares up for no reason at all. My flare ups usually last about 2 weeks then it goes back into remission, but it will happen again the next year. It could be a change in age. Sadly, I’m out of remission right now and most likely will drop at least 20-30 pounds over the next 2 weeks.

For those of you who take Psyllium Husk to manage symptoms, when and how do you take it? I'm specifically interested in whether you take it with or near meals and other medications, or do you take it on an empty stomach?

@debhammel I discovered Citricel that worked even better for me than the Psyllium Husk that I took every morning with food. I do the same thing with Citricel. 2 in the morning with breakfast. You can take with other meals too. I just didn't need it and it stopped months of chronic diarrhea. At first, I had to take 1-3 tablets of Imodium about 30 minutes before a meal then the Citricel with breakfast. Now, I take Imodium when needed, usually when I eat the wrong foods.

I got my diagnosis 8-10 years ago but didn’t get any help in how to manage this. I think my liquid stools haven’t been as frequent as some that I’ve heard of but I did have a fecal incontinence event earlier this year that spurred me on to doing more research. I did an elimination diet for 2 weeks then started adding in foods every 5 days to see what works and what doesn’t. I found out early that yogurt (dairy) didn’t work; raw fruits and vegetables can be a problem (I peel vegetables before cooking); I’m avoiding nightshade vegetables except for red-skinned potatoes; I’ve eliminated caffeine and drastically reduced alcohol. I keep a thorough food diary - I write down everything I eat and I also keep track of the stools that I have - S=solid, L=liquid. I’ve had really good results. I feel like the gut inflammation has been reduced although I think I still have a ways to go. And if I have to do this for the rest of my life then so be it. Good luck!

@jepeters333
Did your insurance cover the powder shakes? I am going to ask my doctor today if he will write a prescription for a 3 week supply in case I have SIBO. Did you use a registered dietitian to help guide you through the food reintroduction phrase? I am thinking about using baby food for the food phrase of reintroduction.

@donnagail I haven’t used powder shakes at all; and I also haven’t used a dietician. As far as introducing foods is concerned I did do some research to find fruits and vegetables that are gentler on the colon (lower fiber and lower fructose).

@jepeters333
I also did not use dietician or shakes. I use the Costco brand of Psyllium fiber powder and Costco fiber gummies. I would be interested in what you found out on the fruits and vegetables that work for you. I think this is key.