new post...updates. looking for help

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armstrongpilot
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new post...updates. looking for help

Post by armstrongpilot »

hi everyone. Been reading posts for a while looking for answers. Was in solid remission for almost 5 years, now it has come back. Went to Dr and colonoscopy was normal, CT scan was normal except I was severe constipated, which caused d. . The time I was on chloystermine and 1 immodium a day. Dr had me stop all mess and do a colon prep to clean me out and see whats what. After a week of no meds, had very severe d come back. I feel fine during the day, at night time I start feeling abdominal pressure, then every morning I wake and have to rush to the toilet. After 2 or 3 episodes I'm usually good for rest of day. Always tons of mucus in my stool. All I'm eating is rice and turkey. Dr has me back on endocort. I tried Metamucil per doctor and all it did was increase my d volume by about 3x. Not sure what to do now. Back on doctors best magnesium and coconut oil vitamin d3. Also trying zyrtec as i feel congested always. Out off foods and feel like running out of time. I usually am a glass full kinda person, however after many may weeks of morning d I'm feeling hopeless again. Don't know what direction to go in.

Heaven forbid I have to cut rice.....I need calories and corn is forbidden.
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Post by tex »

Are colored potatoes (they're easier to digest than Russets) or sweet potatoes an option?

All I eat is pork and potatoes. Been doing that for many, many years.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by armstrongpilot »

Sweet potatoes kinda are ok....just increase stool volume right now. It seems I am just a big reaction so I am unable to know what is safe and what is not.

I'll never know what....but man I wish my remission hadn't ended.
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Post by tex »

Relapses can be harder to break than the original onset of the disease. If you haven't already done so, stop all supplements and non-essential medications. When we're in a flare, we often react to certain ingredients that we wouldn't normally react to when we're in remission.

Sometimes, taking an ordinary antihistamine daily can help many of us.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by CathyMe. »

I am So sorry you're struggling. I hope you find some relief soon. I know all too well the panic and distress that a flare can trigger. Anything that is causing you stress? Have you tried yoga or meditation?
I agree with tex, try to simplify everything, take every extra out and hopefully you'll be back to remission quickly.
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Post by Rosie »

Just a thought here about switching your meat from turkey to another safe meat like pork. I have found that many forms of turkey, and especially ground turkey, commonly contain additives like rosemary extract, celery extract, and other spice extracts that are minefields for containing soy oil. Or you can double check and make sure your turkey doesn't contain anything else but just the meat.

Flares are so frustrating to deal with...........

Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
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Post by armstrongpilot »

the turkey im eating is non ground from publix. Nothing in it but turkey. The only stress I have is my colitis acting up. Thankfully I'm not flying much due to covid. Maybe I'll stop the zyrtec and try Allegra. At this point I dunno what to do. I'm off of my cloyestramine because it was causing severe constipation at one packet a day. I'm either at one extreme or the other.
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Post by brandy »

armstrongpilot wrote: I'm off of my cloyestramine because it was causing severe constipation at one packet a day. I'm either at one extreme or the other.


Hi,

I found all I needed was a smidge of cholestyramine for it to work. I was only on it for about 30 days but
I only took about a 1/4 to a third of the sachet a day. I got down to where I measured it out by the teaspoon and I think I was taking something like a 1/4 or a 1/2 teaspoon a day. I don't believe I ever took a whole packet.

Do you have any left over that you could try a smidge of? Instead of a whole packet? I think a packet lasted me 4 days. I would roll the top over and reuse.

The cholestyramine worked a charm for me. I would have been severely constipated on a whole packet too.
Alas, I had to discontinue it after a month due to an unrelated side effect.
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Post by brandy »

PS. I'm not sure if cholestyramine should be taken concurrent with budesonide.

I think usually people take one or the other.
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Post by tex »

As far as I know, there are no interactions between budesonide and cholestyramine, but you need to take the budesonide at least 2 or 3 hours before you take any cholestyramine, or 4 or 5 hours after you take any cholestyramine in order to make sure that the cholestyramine doesn't sequester some of the budesonide, and thereby prevent it from working.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by armstrongpilot »

after this morning I am going to have to try and go back to chloyestrimine. Had severe water d as soon as I woke up. Can't get anything done or be useful in this situation.
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Post by armstrongpilot »

day number two back on cloyestrimine. Liquid d seems to be better....now it's long thin stool. Still tons of mucus....could this be c diff or something wierd like that? Im guessing that is an improvement. Waiting to see what tomorrow brings. It seems that what brought my remission years ago isn't doing the trick this time.
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Post by tex »

"Ribbon" stool is a common step on the way back to remission for many of us. Yes, it's definitely a big improvement over WD.

Some of us "gain" additional food sensitivities over the years.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by armstrongpilot »

with an already severely limited diet.....the thought of new sensitivities is alarming. How do we stop this?
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Post by tex »

That risk is usually primarily limited to the main problems (gluten, dairy, soy, chicken egg), or something like beef. In my case, I initially tested negative to soy, but after a few years passed, I became sensitive to soy and legumes. Wild type meats will always be safe, and certain carb sources will always remain safe. We gain most food sensitivities when we're reacting. When we're in remission that's much less likely to happen.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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