Advice please. Do you suffer from Collagenous Colitis? Have you found a site with good advice?

[Paper Roses]

I am not asking for medical advice, just a site that can give me good, not contradictory guidance. Maybe a book that is helpful with ideas about how to cope with this affliction.
I've been all over the internet and find information on one site that contradicts the info on another.
This is an awful affliction and I am having trouble finding what will work for me.
Send me a DU Mail if you can suggest a good on-line site to get some good advice. I've been to the "big" ones and there is contradictory information.

Any ideas would be a help, I hope this request does not violate the rules. If so, let me know and I will delete it.
Best to all.

[ProudMNDemocrat]

1. See your Doctor.

I am on a medication, a Non corticosteroid that does not absorb to quiet down my colon. It is 3mg 3 times a day.

I watch my caffeine intake, keep salads small, eat cooked veggies, limit raw veggies, avoid fried foods as much as possible.

It is also upper GI related as well. I take a 20mg genetic form of Prilosec each morning to control stomach acids so I do digest foods.

But do see your doctor, perhaps gave an upper and lower GI scope. Untreated could lead to Chron's. Not fun.

[Paper Roses]

2. THanks for your advice.

I've had a special (can't remember the name) colonoscopy and was diagnosed with this situation.
The meds prescribed were $970.00. I almost fainted. That was for 12 pills!
I stopped taking them but will be going back soon. Many health issues right now but this one is a real pain.

I'm most interested in the proper foods that will not cause further irritation. My list of things -not to eat- is long and boring!

[ProudMNDemocrat]

3. This is what I take....

Budesonide Ec caps 3mg

Generic for Entocort Ec.

I am covered by Medicare and Tri-Care.

I have had to realign my diet as well. Wheat. Corn, soy, beans, dairy, does me in. White Potatoes and Rice do me in. Brown rice on occassion.

[Paper Roses]

4. This is the same RX that was prescribed for me.

I admit I am not a great pill taker. Between this, Fosomax, Vitamin D and Calcium, I never know what to take. I'm going to start this Budesonide again starting tomorrow. Since I'm an old timer, it seems that everything is happening at once. Very discouraging. Add to this, I have restless leg and take Clonazepam in the evening to help me sleep. Holy mackerel, this is too much.
I have the same items on my 'do not eat' list.

Running out of ideas. I have allergies to all seafood so fish of any type is also off the list.
Getting bored with green salads and removing the seeds from all veggies, fresh or cooked.
No fried foods either. Phooey! Oh, no spicy foods either.

I have gained weight during these past few months. I blame it in Covid but I'm sure part of it is from my adjusted diet. Too many turkey sandwiches.

[Jilly_in_VA]

5. I don't suffer from that

but apparently from some other kind of colitis or maybe IBS that nobody's been able to do anything about, along with diverticulitis. I have around 18 inches of my "chitlins" removed in 2012 to no avail. I've tried a lot of other stuff including diet adjustment and different meds. What works for me is a real oldie....cholestyramine suspension, which I hate, but damn, it works! One scoop a day in water with a little squeeze of some kind of flavoring, chased with more water because it sticks to the inside of my mouth, and I've had no more problems. It's off-label because it's an old treatment for elevated cholesterol, but I no longer have problems with that either. A twofer! Also not terribly expensive.