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Crohns ... What Works For You?

LooneyTech

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Some light chemo for some minor skin stuff seems to have lit it off.



I was getting thru things pretty well, but shit's getting ugly recently.

CT shows inflammation over large areas of the terminal ilieum, confirmed with an illeocolonscopy.


Doctors are doing what doctors do

... hiding behind big words, doing a lot of bloodwork and doing a lot of testing, but they sure as hell haven't kept me in the loop or explained things well.



They want to use some seriously nasty drugs to turn the immune system down, because they say it's the problem.

I seem to have pissed the doctor off when I asked why we can't just go after what the immune system is going after, and communication with them is now rather difficult.

I know I'm not very smart, but I've always felt that if you can't explain a topic to a five year old,you don't really understand it yourself.





I'm hoping some folks will share their experiences.

What works,and what didn't.


Thanks for sharing!
 

Rooney77

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Meds are the only thing that has worked for me. I've been on Remicade, Humira and all the other big ones but they didn't do a whole lot. I'm now in a drug trial for upadacitinib and it's working better than anything else ever has. I'm the best I've been in almost 20 yrs.

Nothing otc can touch mine, it's just too severe.

And your doc is right. It's an immune system disorder so you shut off the immune system to treat it. Your immune system attacks your digestive tract. Not much you can do about that.

So if you went after what your immune system is going after you'd be attacking your digestive tract. Gotta shut off the immune system.
 

TiTRD

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Ulcerative Colitis here.

Nothing worked; shit blood 20 times a day. My colon was a mixture of dead black and ground hamburger. Lost 40 pounds down to 123#. At 6' tall I looked horrible. Decided J-Pouch surgery was the answer. Been fairly healthy in the 7 years it's been done.

No colon anymore. No pain. Still shit out my ass, though it's about 10 times per day and not solid. Life is much better though.

Edit: good luck, I don't wish these diseases on anyone.
 
Last edited:

woods

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Wife has UC. She's on Azacol(sp?) and Imuran. Avoid stuff like corn. Before she got pregnant, she was going to the bathroom 50 times a day. I can't tell you how many times we backed out of the driveway and back in. It'd sometimes take us 2h to leave. During her pregnancy, 100% better. Not a single symptom. Amazingly, she's still great. Few flare ups now and then, but nothing major.

The two meds she's on work well. She can tell when she doesn't take it.
 

Lawless

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Meds are the only thing that has worked for me. I've been on Remicade, Humira and all the other big ones but they didn't do a whole lot. I'm now in a drug trial for upadacitinib and it's working better than anything else ever has. I'm the best I've been in almost 20 yrs.

Nothing otc can touch mine, it's just too severe.

And your doc is right. It's an immune system disorder so you shut off the immune system to treat it. Your immune system attacks your digestive tract. Not much you can do about that.

So if you went after what your immune system is going after you'd be attacking your digestive tract. Gotta shut off the immune system.

End the thread here Rooney nailed it.

I will add my 2 cents to it though. STRESS is a big player with this shit so try to keep it to a minimum. A lot of people this IDGAF about anything, they are partly right. I GAF about what really matters and don't stress over it much and it sure helps big time.
 

woods

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Humira is that epipen looking thing, right? Wife was on that for two months. She looked like a zombie. That stuff was worse for her than the UC. Eyes were all sucked back, lethargic, no appetite, nauseous, and felt like shit.
 

LooneyTech

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Looks like this forum got all the good guys posting right off the hop, and I appreciate all the replies!.

...especially Rooney chiming in with that excellent post!

I'm doing some chores right now, but will be back a little later to ask a few specific questions.

I really want to do my homework on this because many of the treatment regimines have many downsides and many have drastic side effects.

I'd like to put together a very good treatment plan,

... or at least not get it very wrong


Thank you all very much for posting your personal experiences!
 

Lawless

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Humira is that epipen looking thing, right? Wife was on that for two months. She looked like a zombie. That stuff was worse for her than the UC. Eyes were all sucked back, lethargic, no appetite, nauseous, and felt like shit.

She quit it after two months? It takes longer than that to get your body up to speed with it. Just out of curiosity what is she on now if anything?
 

woods

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She quit it after two months? It takes longer than that to get your body up to speed with it. Just out of curiosity what is she on now if anything?

After the two months, she was miserable. It felt like it was just poisoning her. Just awful.

She's on Asacol and Imuran now. Does just fine. The craziest thing was her pregnancy cleared her right up. She's not even close to how bad she was before then.
 

Rooney77

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After the two months, she was miserable. It felt like it was just poisoning her. Just awful.

She's on Asacol and Imuran now. Does just fine. The craziest thing was her pregnancy cleared her right up. She's not even close to how bad she was before then.

That's awesome those work for her. Humira didn't do a whole lot for me. Much like the Remicade. They made improvements but just never felt it was under control.

None of the hundreds of meds I've taken have given me any side effects. Well, not that I've noticed. Excluding steroids, those suck.

To date, the trial drug has been the best, hands down. Best part is it's a pill. No shots, no iffusions and just flat out works.
 

woods

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That's awesome those work for her. Humira didn't do a whole lot for me. Much like the Remicade. They made improvements but just never felt it was under control.

None of the hundreds of meds I've taken have given me any side effects. Well, not that I've noticed. Excluding steroids, those suck.

To date, the trial drug has been the best, hands down. Best part is it's a pill. No shots, no iffusions and just flat out works.

Yea, she didn't care for the injections at all. That was a bit for her.

Good to hear about the trial drug. I've been on a new med for my hemophilia myself. Haven't had a bleed in over a year. Cheap too. Started off at $9800 a week and now just under $20k a week. :laughing:
 

TiTRD

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That's awesome those work for her. Humira didn't do a whole lot for me. Much like the Remicade. They made improvements but just never felt it was under control.

None of the hundreds of meds I've taken have given me any side effects. Well, not that I've noticed. Excluding steroids, those suck.

To date, the trial drug has been the best, hands down. Best part is it's a pill. No shots, no iffusions and just flat out works.

Remicade I think was actually my demise.

Prednisone is nasty. I never had zits even through puberty. That shit gave me zits all over my back. I'm covered in scars now from it.
 

woods

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Remicade rings a bell. I think my wife was on that for a bit. :confused:
 

woods

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It's an infusion. You sit at the hospital for 2-4 hours every 2 weeks.

Ah. Yea, she was going to do that but then decided against it.
 

Lurker

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Have any of you guys tried getting rid of grains and excessive sugar? I started keto two years ago, very limited sugars and grains, eating as clean as possible while feeding 3 kids and a wife. My wife was diagnosed with RA at 28, used several of the nasty meds that are used to treat crohns and still had not found much that worked and didn't make her feel like total shit. I understand it it is not crohns, but it is an autoimmune disease that can be treated similarly. Well, she is off most meds, the Dr did keep her on a low dose that also helps suppress lupus (yay). She will still have some minor flares during lots of stress from her job, but that is usually 2 times a year max. Now, before you blast me, hear me out. I am only asking a question with the hopes of helping. I am not a doctor, nor do I want to be. I have found the lack of grains really helps in the elimination of inflammation. Also, I lost 120lbs in the first year, I was able to keep it off the following year. Our lives are different and much more enjoyable now. I hope this helps.
 

Grendel

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My son went complete vegetarian and does a lot of bacteria introducing foods, like real yogurt and Kombucha tea. He is on Remicade (maintenance) every 2 months now, just to keep it in his system

Hasn't had a flare up since doing this. About 2 years.
 
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