1. < Autoimmune Diseases

Does anyone suffer from Crohn's or colitis?

Posted by blu15 @blu15, Feb 18 8:32am

I got diagnosed with Chrons disease back in January I’m 56 years old got it unexpectedly from eating something that caused food poisoning and I never got better. Ended up in the ER in December and my body just shut down. I’m on the mend getting better everyday but I’m skeptical about the medication they put me on! Bad side effects!

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suetex | @suetex | Aug 8 4:53pm

There is certainly more to it than that. And I would suggest anyone interested do more research than that. However, if you are using opiates you can not use LDN. It will render them inaffective. Even surgical situations need to be thought about carefully. There is a lot to learn. BTW: LDN doesn't have any of the effects on the body like morphine and you can't overdose on it. And a Dr. doesn't have to any specially training to perscribe it.

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pb50 | @pb50 | 1 day ago
In reply to @astaingegerdm "I took Imuran for a few months until I had too many infections. What I didn’t..." + (show)
@astaingegerdm

I took Imuran for a few months until I had too many infections.
What I didn’t realize was that side effects could be lymphoma- not yet!- and skin cancer. Later on I had more than my share of skin cancers- basal cell and squamous cell. Now I’ll have the second one removed from my nose.

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Update: All was well on this course of Budesonide - round two for me. But 11 days after I tapered off I relapsed again. So I’ve begun round three at minimal effective dose (3mg/ day). I follow up with him in a month to describe status.
So back to low fiber, fat, and sugar …I’m thinking i will be on maintenance dose of this forever.
If it keeps working.

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1 reply
kayabbott | @kayabbott | 21 hours ago

I have had collagenous colitis for 8 years (celiac for 15). I had 3 months of flares this summer due mostly to high stress and being on low-dose Lisinopril (Ace II) for (new) chronic kidney disease, not blood pressure. I'm 70 and collecting diseases is not a good hobby. The flares tailed off a couple of weeks off the Lisinopril. I've never taken meds for the colitis (partly due to being sensitive to too many with microscopic colitis). I've kept a food journal for 15 years and figured out that I am sensitive to legumes, NSAIDs, gluten, and dairy. I've been low sugar/salt/processed foods for years. I have a high fiber diet; psyllium husk combines insoluble and soluble fiber that helps to bulk unformed stuff and feeds the (mostly friendly) bacteria. Stress has a big impact on GI problems so controlling that, getting enough sleep, exercise, diet, and finding things to look forward to every day is important.

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1 reply
ghelen | @ghelen | 21 hours ago

I was diagnosed 5 years ago - it's a roller coaster - my advice is to get a gastro doc who is a specialist in crohns and get a good therapist who specializes is helping people with chronic disease. It's one way to manage the stress.

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1 reply
suetex | @suetex | 18 hours ago
In reply to @pb50 "Update: All was well on this course of Budesonide - round two for me. But 11..." + (show)
@pb50

Update: All was well on this course of Budesonide - round two for me. But 11 days after I tapered off I relapsed again. So I’ve begun round three at minimal effective dose (3mg/ day). I follow up with him in a month to describe status.
So back to low fiber, fat, and sugar …I’m thinking i will be on maintenance dose of this forever.
If it keeps working.

Jump to this post

Please find a dr. who will try Low Dose Naltrexone. It healed my small intestine when many bouts of Budesimide wouldn't. Now several years later I am symptom and medication (except for LDN) free. And I eat almost a normal diet.

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pb50 | @pb50 | 9 hours ago
In reply to @kayabbott "I have had collagenous colitis for 8 years (celiac for 15). I had 3 months of..." + (show)
@kayabbott

I have had collagenous colitis for 8 years (celiac for 15). I had 3 months of flares this summer due mostly to high stress and being on low-dose Lisinopril (Ace II) for (new) chronic kidney disease, not blood pressure. I'm 70 and collecting diseases is not a good hobby. The flares tailed off a couple of weeks off the Lisinopril. I've never taken meds for the colitis (partly due to being sensitive to too many with microscopic colitis). I've kept a food journal for 15 years and figured out that I am sensitive to legumes, NSAIDs, gluten, and dairy. I've been low sugar/salt/processed foods for years. I have a high fiber diet; psyllium husk combines insoluble and soluble fiber that helps to bulk unformed stuff and feeds the (mostly friendly) bacteria. Stress has a big impact on GI problems so controlling that, getting enough sleep, exercise, diet, and finding things to look forward to every day is important.

Jump to this post

Its such a Journey. I am off nsaids, ssri, PPIs, and statins. We will see if this maintenance level dose does the trick

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pb50 | @pb50 | 9 hours ago
In reply to @ghelen "I was diagnosed 5 years ago - it's a roller coaster - my advice is to..." + (show)
@ghelen

I was diagnosed 5 years ago - it's a roller coaster - my advice is to get a gastro doc who is a specialist in crohns and get a good therapist who specializes is helping people with chronic disease. It's one way to manage the stress.

Jump to this post

I have a good gastro doc and he has a lot of microscopic colitis patients. And i have had RA for 12 years. Chronic maladies take their toll.

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