Anyone here have it as well?
How has it affected you?
Mine was stage 4 before my sore ass got to the right doctor. Mostly my fault, I thought I just had irritable bowel until I didn't just have that.
I'm wondering for real life, long term experience.

I had a gf that had it. She had to be careful what she ate...

I’ve been dealing with UC since the 80s. Finding out new things all the time. Hope the meds work for you, I’m still looking for the right combo, and new drugs/research coming all the time, stay positive.

I got to the point an abscess opened and left a fistula.
I'm still recovering.
I hope to get my gunsmith shop set back up. Nothing but a hobby, but I enjoy bringing old guns back. I get better and my VA disability claim is ever settled...

My brother had it for many years. Each bout doctors progressively removed part of his and intestines. He had to be very careful of any foods he ate, and had constant diarrhea.

Besides a lot of other things he died for 3 weeks ago.He had so much of his colon removed , they finally said he had to get a bag. is one side was mostly paralyzed from strokes and he could not change the bag out. He ended up that with out much of his intestines, his body could not get proper nutrients. one was potassium. His kidneys shut down and because of other problems they could not do the dialysis.

All in all, cashed out hard.

Do not underestimate what Crohns can do to you

Eliminate carbohydrates from your food, as carbs cause inflammation.

Try a carnivore diet.

UC here
12 years now
Daily meds and doing my best to keep stress to a minimum keeps it at bay.
Colonoscopy # 4 on tap for this spring.

Wow, that isn't all encouraging. I hope I get better than that. I'm on anti inflammatory steroids and some sort of thing I mix with water.

I suffered terribly from Chrone's back in 2020 at the tail end of a couple years of it nagging me in a relatively minor way, almost killed me when it finally went full bore. Finally got to the point where they re-sectioned about a foot of small intestine from the junction with the colon backwards. Two years now after the operation and life is normal, at least in that regard. Eating anything and everything now, stuff that would've (and did) put me in the ER a couple times during that terrible summer/fall two years ago. If such a deal is offered as a "cure", take it, as we can get by just fine with a foot or two of small intestine missing. No particular dietary restriction now, but I do inject myself with Humira every two weeks as an aid to prevention of a recurrence.

Chrone's has many levels of severity and can effect different areas of the gut. Find a good GI doctor and follow advice. Don't be afraid to seek out second opinions either. My first doctor was content to string things along and approached it with dietary restrictions. "You'll never eat pizza again. Deal with it", was one advisement. A second doc stepped in (during the third hospitalization contiguous with ER visits) and took a more aggressive approach and said "My advice- let me cut that sh*t out of you and we both get on with our lives." I said ok, she did, and life is good again.

12 years of being on meds and functional would be doable, compared to the last year.

Get your butt off of the steroids and get it fixed properly. My first doc had me eating them like jelly beans for six months in a vain effort to control it. They just postponed the inevitable, didn't actually cure anything, and had side effects that plagued me too. (My ophthalmologist theorizes that those massive amounts of steroids at least exacerbated the cataract that bloomed in my right eye that had to be cut out a couple months ago.)

I have seen a few youtubes by doctors saying that.

My Brother was diagnosed with it in 1968. They virtually new nothing about it back then. Other than the symptoms basically. He was used as a Guinea pig and test subject for a few years being transported to several hospitals around the country. He’s 70 now and has had to deal with it his entire life obviously. He almost died in ‘89 from complications stemming from scar tissue and blockage in his intestines. He’s had several surgeries over the years and has had probably 9’+ of his intestines removed. But remarkably he’s fought through it and is still going strong. One of the treatments that has seemed to help him a great deal is drinking aloe vera. I would recommend anyone with the disease to look into it and research it.

I don’t have Crohn’s but I can vouch for the low carb diet. When I am doing low carb, my time on the commode is drastically reduced. You sit down and it comes out in a nice firm form and you get up. No need for a book, barely a need to wipe.

If you ever wondered how primitive humans stayed clean without a lot of modern hygienic innovations, I think there is part of your answer. If they were following a diet without lots of carbs and refined sugars while being high in fat and protein, they just didn’t have to worry about it nearly as much.

The steroids have helped immensely. Drainage finally has let off and a lot of stuff drained that hadn't in almost a year of having the fistula. I'm not in constant pain / discomfort. It now is mostly toilet time related and an abrasive white "sand" when the Crohn's flairs. It's a med related thing. I very stupidly had chicken noodle soup and cereal yesterday. I'm still figuring this out.

My brother has Crohn's, he has very little of his intestines left. Twice he's had major surgery, to remove more intestines. I have a great deal of sympathy for people with Crohn's. He takes enzymes for digestive support, and a couple other pills. I hope you find a good Dr. and follow the Dr advice! He says diet is the most frustrating part. Becauze he has to eat constantly, and crap constantly. No bag yet, he's 69 and still very active!

Nessmuk, sorry to hear about your medical adventures. Good luck getting the problem addressed satisfactorily. And good luck starting up the smithing thing too.

Not Crohn's, but I've got lymphocytic colitis.

Started with a constant battle with the runs a few years back. The "Best Medical System in the World" did as someone else here mentioned, tried to treat the symptoms instead of trying to figure it out. Trips to the Docs with a try this "FODMAP" diet. Oh, maybe you're allergic to gluten. Scheidt in this and bring us back a sample, nope no parasites, no blood. Did that twice (I knew it wasn't giardia as I've had that. Twice)

Finally, after 7 + months of not knowing when it was going to hit, carrying TP or papertowels in my back pocket so I could just drop trou like I was living in a third world country (or a homeless camp) I was "allowed" (by the insurance companies) to go to the specialist that has done a few colonoscopies on me.

Fuggers, Not the gastroenterologist, but all them other fuggers. I even switched primary care over all that diet and "we don't know" scheidt. The new doc got the process started to get scoped.

That gastro dude took a biopsy, called me back a day later, told me what it was and said we have an easy fix. Budesonide, 3mg pills, start at 3 per day for a couple of weeks, then try two for a bit, then try one if that works. I've been taking one a day for awhile now. Back to my regular self with just that.

Imagine going to the auto shop because you have a wobble at 60MPH. And you get answers like this. "well, let's try inflating your tires a bit more" "well, that didn't work, let's try rotating the tires" " well, maybe we should rebalance them" " Hmmm, we're stumped, maybe just don't drive at 60 MPH, hit 58 and speed up fast to 65" And then you get the OK by the powers that be to put the thing up on a rack and check the front end parts and discover a bad ball joint.

Let's not look for a cause, let's just treat symptoms. That seems to be the way the "Best Medical System in the World" works most times.

Drinking more water and staying hydrated helps a lot.

no grains, no beans no carbs

Try a carnivore diet with some greens. Do intermittent fasting every day. Listen to your body

The quickest way to solve this is to do a fast with an elimination diet. Start back with bone broth and add glutamine for the stomach. The slowly introduce foods starting with boiled meat and drink the broth. Some real full fat yogurt, kefir, fermented veggies.

and like squidgy says drink a lot of water, broth every day. No sodas, milk, booze


Of course Drs won't tell you this

yep But people are generally lazy and want to keep eating crapthey ate their entire lives and rely on meds which can be very bad long term

I had the runs for about 6 weeks after eating a whopper at Burger King. Thought for sure I had it.
Got a bad enough time with my guts from transplant meds.

there is a simple solution

Diagnosed with Crohn's about 5 years ago at age 45. Gastro dude got me on humira right away. I still have my days but overall, I guess it could be worse.

Diet sucks. Basically if it taste good or something I used to really like, I can't have it.

Gotta go in for colonoscopy #2 this month.

When I was first diagnosed, the hospital in Grand Rapids actually has a Crohn's specialist and all she does is consult and advise, crap like that. She actually took the time to show me the proof and explain a lot that it was indeed Crohn's.

Both of my son's have Crohn's. The oldest was diagnosed with it at 10 yo....the younger at 8. They are now 28 and 26 so we have dealt with it for a long time. For the younger it has been under control for most of his life. All he needs is daily immunosuppressant and anti-inflammatory pills and things are pretty normal for him.

On the other hand, the older has struggled with it. He was initially prescribed Remicade, a periodic infusion, but was found to be allergic to it. Later he was prescibed Cymzia, but moved on to Humira when Cymzia no longer worked. The Humira also ceased to be effective for him after a while. Apparently his body eventually develops some immunity to the medications, causing them to stop working for him. He is now on Stelara, a periodic injection, but according to him it's effectiveness also appears to be waning. What he has done that works for him is to turn himself into a fitness maniac. Watches his diet religiously and works out daily by running, biking, cross-country skiing, etc. A short run for him is no less than 10 miles and he participates in every extreme event that comes along. He has skied a couple of 100 mile wilderness cross-country races and last summer he ran three marathons of 26 miles each on three successive weekends! He's now training for the next 100 mile event, which can be skied, biked or ran, coming up in March. He refuses to let the Crohn's defeat him.

Wife has it. She does pretty well most of the time but it gets to her sometimes. She is 'the toughest person I've ever met and I mean that in a good way.

We did the diet elimination thing and discovered that there was basically nothing I could safely eat regularly. High fiber stuff: out. Carbs: out. Whole grains: out. Spices/herbs: out. Onions/peppers: out. Meat: only bland boiled/steamed stuff, like chicken. Red meat with any fattiness/grease: out. Life started to suck on a diet of Ensure, eggs, chicken, and peanut butter, but it beat the living hell out of enduring the gut attacks which doubled me over and made me wish for death. I lost 75 pounds during the last couple months before I let them cut me - from my normal 225 down to 150. Put all those pounds back on in the first few months after the operation. Eating everything under the sun now, except Brussel's Sprouts (but I didn't eat them before either)!

One weird dietary thing: beer didn't effect me. Some days I subsisted on beer because I was often truly afraid to put any kind of solid food whatsoever into my system. It's a helluva note when food in general scares you.

I'm having more frequent flare ups and I'm down to 160. Only lost about 20lbs but still.... Had labs down, body isn't getting immune to the humira so that's why I get to have camera up my arse.....again... whatever, I hope they see something that will point them in another direction.

My gastro dude is very concerned about the weight issue and the more flare ups.

Crohn’s Dz is an inflammatory disease of the intestines and can be managed but not typically cured. gnoahhh wisely points out that the manifestations are extremely valuable. Your course will likely be very different from someone else’s. Work closely with your GI doc as treatments are constantly evolving. The condition is not rare and treatments will continue to improve. Best of luck to you.

My 19 year old son has Crohn’s. Crohn’s is an autoimmune disease that causes the body to attack itself causing gastrointestinal inflammation. My son’s started when he was 10. It’s severe and he was in and out of hospitals for extended stays and missed diagnosis. His appendix burst as a result of Crohn’s infections but the doctors initially thought that his problems were related to complications from his appendix.

A Doctor at a local hospital that was part of Michigan Mott Children’s Hospital system referred him to Mott Children’s Hospital. They diagnosed what it was over a few weeks of outpatient testing.

I can’t say enough good things about that hospital. Absolutely great doctors and nurses. Very compassionate and great at what they do.

He had several fistulas that he had to have cut out and he spent several weeks total over an 18 month span in the hospital before being diagnosed and then after his final surgeries.

He takes daily meds and gets a Remicade infusion at home every 8 weeks. He’s had zero Health problems since getting on Remicade. It’s an immune suppressant which sucks. He gets a few colds per year but has had no Crohn’s related problems for about 8 years now. He’s a big strong healthy kid and doing really well since being diagnosed and treated with the right meds. The only side effects for him have been being more susceptible to colds.

My son shortly before being released after his final surgery. The UM athletes would come see the kids every week in addition to magic shows, crafts, ect. Pictured in back is ex Michigan QB Devin Gardner. Gardner was a first rate person that went out of his way to spend extra time getting to know my son and talking football with him.

One of my hobbies I’m into are natural health products. Interestingly, one of the products I sell has something in the patent wording like : regulating the mucosa cells. Those cells help protect the stomach and gut lining. Gotta say we’re getting good results with a friend with crohns. Product is Tetrahydrocurcumin.

Don't ignore the dietary necessities after having part of your intestines removed. The disease only ends up attacking more of it. It is till in your body. Those promoting all meat diets forget the high cholesterol results of that

Reading this thread, shows you don't appreciate having good health, until you read about others who don't have it.

only know of one family member who ever had Crohns Disease.. when she passed at 89 y/o, she was the longest known survivor of living with Crohn's disease....

Sorry to hear that Slum.

Take a lot of Liposomal Vit C to try to stave off cataracts from the steroids. God bless.

It can be a challenge

Biggest fear is getting caught in town 20 miles from the house. I have a hi-rise Kohler Cimmaron designer terlot.

My nuttsack is so gi-normous, my hognuts dip the water in alla these fuggin Yankee toilets in town.
Have to race home and try NOT to get stopped by lawdog sittin passed the old dumpster pull-off.
I dumped to 15-20lb of roofing nails off on there to help humanity. Ain’t seen the little neckbeard pos deputy in there for a while.

It's encouraging to know so many people have managed with it. It's discouraging how many have had poor luck managing it.
I've lost 40 lbs last weigh-in.
Unfortunately, I don't look any better.

That is what i hear doctors on youtube saying.

This is very good news. I’m glad that your son is doing so much better. Nothing is worse than having a sick kid.

For me the biggest obstacle is the diet. It changes.

For instance yesterday at work we had a pizza party for new years. Same place we always get it from, no issues but yesterday it tore me up. Last 4 hours of the day was rough.

What changed? That's my biggest problem. Foods that were safe might not be next week.

Sadly, that's what the system has become.

I knew a woman in a different part of the country who was a real hoot---funny, smart, and gorgeous and she had Crohn's. After I'd vacated that area for about 10 years she started having really bad episodes and life got really bad for her. She ended up breaking into my departed uncle's wife's house, found a loaded revolver and shot up the house somewhat before putting a bullet in her own head. I never understood how and why that all came about. I can just assume that the disease made her life a living hell.

Is cholesterol bad for you?

I've had it since my late twenties. Been in mostly remission for a couple years. Steroids are often necessary, but you'll pay the price for taking them. Had cataracts removed when I was 42 due to prednisone. Smoking does not help. Eating a high protein low carb diet seems helpful in my experience. Limit fiber to as little as possible.

There are better steroids now. Not 5he side effects of Prednisone.
I find I 5oo can drink beer. I think it actually helps, as anxiety and tension aggravate my stomach.
Maybe something anti anxiety would be good.
Edibles, THC maybe? Honestly not having tried that 8n 35 years. Doc had me on oxycodone post hospital. I don't need that anymore. I did ask for hydrocodone, you'd think it was worse than the oxy.
I could trade the dammed oxy for a nice 10-22, but 8 don't want it in the house even, ( the oxy that is,). Where I live it's just thief bate.
Excuse the typing, fat fingers, small phone, no glasses...

There is a bio-treatment available in Mexico, originally developed in Greece. I'm uncertain if it is just for cancer or for UC as well. Mostly if not entirely diet based. It's a process tho, requiring ( I think) more than one visit- several weeks at a time.

I know several people who went this route, rather than radiation for cancer (one of them 40 years ago- still well, and old!). A fellow down the road I think had UC or Cronins, maybe colon cancer? - Docs wanted to take several feet of hi intestine out - the bio-treatment cured him and he could eat stuff like bananas which he had always been alergic to.

AMA hates them.

It's very expensive, and insurance won't cover it. As with most things, best if caught early.

Steve McQueen tried them as a last resort, and it was. Possibly because he left it too late.

OK- I googled it - looks like it is for cancer, but would not hurt to check.

Pentasa
Budesonide
Cholestyramine
Those are what I'm on.
The wonderful VA l, in all its veteran supporting glory, delayed my approval for them for a month.
My doctor arranged for the meds to be covered out of their pharmacy.
The local VA could rot in hell, except it is hell.
The local clinic is better though.
Many local vets drive 2-3 hours to go to a better VA hospital.
I know the one time I went there will be the last time I go there for care. I wound up lodging complaints with both the VA inspector general and the white house veteran abuse hotline. Never again.

[img]http://https://photos.app.goo.gl/EJfhgWteYfVSU8qE6[/img]

https://photos.app.goo.gl/EJfhgWteYfVSU8qE6

My best therapy.

When it is over 200, plaque builds up in your arteries.Heart disease is sure to follow,

A serious question.
Can I use CBD with Crohn's?
Any time I get even the least bit tense, my whole gut feels sick.
I would like to see if the CBD helps.

I'd go with full on THC[honestly].

I good friend of mine had terrible UC for years.

CBD gummies really helped. If it's not a problem for work, I Agree with Raeford

I like that carnivore diet approach. Although I have a bit of an addiction to an afternoon soda. A little fructose to screw up the works.

I had what I think was Covid before it was recognized as "Covid" several years ago. My guts have been in an "uproar" ever since. I have found that yogurt of pretty much any kind has helped the issue. I also use a probiotic and limit the carbo's.

Although, I really doubt I have anything like some of you guys have been walking around with. I do not envy you all one bit. I wonder if this is one of those places Metformin can help ?? I will pass on the THC and CBD.

kwg

https://www.medicalnewstoday.com/articles/280725

Just FYI- CBD is a hoax, nothing more.

Crohns AND an ass boil??

My Lort….the curse of the snappin turla

bless ya heart baby

Back boil, shoulder blade area, and yes, fate is very giving of late.