Does anyone suffer from Crohn's or colitis?

I also had the onset around late fiftys with sudden vomiting and indigestion, I have gone through miserable years with flareups and running to ER every so often. Stelar infusion gave me some relief ( it has some bad adverse effects, research before infusion) still problems.My advice: watch your diet carefully, avoid rough food.and stay with a soft high protein/soft diet.

I don't have Chrons. I have celiac (14 years) and collagenous colitis (8 years) that I can control by diet, exercise, and (very important) minimizing stress. I've kept a food log for 14 years in which I mark symptoms and food/stress if I get a flare. With collagenous (microscopic) colitis one has to avoid all NSAIDs (aspirin, etc). Based on my log, legumes also kicked off flares, and gluten. So a mostly FODMAP diet. The Chrons diet is quite restrictive so adds stress both in eating and socializing. Escape from the stresses as much as you can. There is a grieving process with illness; it gets easier as time progresses.

Colitis !!! Mesalasine ,, also bad side effects,, been on it for seven month.
No slipping ,, dry throat ,, mouth,, nose,, and eyes.
Wonder where there is at treatment with less agressive side effected.??

I was diagnosed with Crohn’s at age 57, and I’m 71 now. Mesalamine, azathiaprine, Imuran didn’t work. Finally I went on a biologic, inflixamab, and it brought almost immediate remission. No adverse effects after all these years. I get an infusion every eight weeks. I know if you read the fine print warnings you will get scared, but living with Crohn’s symptoms is pretty bad too. Worth the risk for me.

I guess I'm sort of a success story. I was diagnosed with Crohn's in my early 30s and I am late 70s now with other autoimmune diseases and breast cancer but my Crohn's as been innactive since a normal 'scoping in early 2021. I am currently medication free of anything that would affect my Crohn's-accept Low Dose Naltrexone. I started it is mid 2019 and I am convinced it healed my small intestine which was full of small ulcers. I've stayed on it (2mg) ever since. My current rheummy lets me have it because she knows it won't hurt me and she wants to make me happy. (Her words.) I have other docs who are more supportive of LDN. Physicians vary, but I'm a believer.

I was diagnosed with UC in 2009 and in 2023 Crohns Disease! Mesalazine did not work so I was put on Entocort it was magic! I had a normal life until the 3 months was up and i started Entyvio Infusions. They arent working so they have added Entocort back into the mix to see if they can work together. After two weeks I don’t feel a difference. Not like the first time i was on Entocort🥲I eat mostly the Mediterranean Diet which i like. Going out for dinner is alwsys stressful / what can i eat that i won’t lose within an hour or two???? I go to a Personal Trainer once a week and go on my own the second day. Goal is for three days a week. I also have Spinal Stenosis so going slowly and carefully. Makes me feel good. Walking my dog makes me feel better too. Luckily they invented “Depends” to lessen stress when I’m out. Life is a process and this is our journey. Been reading a very helpful book to help my husband understand what I go through daily. The New Rules of Marriage by Terrence Real. It helps me explain in a good way how he can help me instead of coming from the depressed way of poor me helpless victim when I’m having a bad day. To my surprise it’s working-this relieves a lot of stress!
Good Luck everyone on this journey. PS So comforting to read how others are navigating their days.
Sharlene

I feel for you!

I was diagnosed in Nov ‘23
With candide and pilorie (sp?)

I was on strong antibiotics for 63 days. Screwed up my gut!

They ran scopes from top down and bottom up. Said I might have crohns but needed a pill cam to see.

They didn’t get around to running a pill cam until April of ‘24!

No idea why the delay. Much much pain in torso. Not their problem. Ha!

Then diagnosed with crohns!
Maybe also irritation from ibruprofin!

Forbade me from it and back pain increased!

Sent me to a spine doctor and I got spinal steroid injections. Helped but not a cure.

From April until June before they got me on inflexemab (remecore). First one helped almost immediately. Then not so much. Second infusion- no change. But overall, I am much better today than when I started! So?

But I have much more pain!
Abdominal cramps and pain.
And the shooting pain - severe! Like random wasp stings! So severe they cause me to shout out!

During the wait, I lost 120lbs!

I was so weak that I could barely stand up.

But now I’m gaining my strength back and I’ve gained 25 lbs.

Medicare (75 male) called me asking about the unreasonable delays!

I had no explanation so they said they were going to call the gastro and see. Never heard back.

I’ve been hauled to the ER twice. Once at mayo Rochester.

At mayo I got connected to one of the best doctors that I’ve ever had! Dr Wang. She is awesome and extremely caring! I love her!

If I didn’t live over 500 miles from Rochester mayo, she would be my gastro.

Saw my local gastro (actually assistant - I have never actually seen the real gastro) today. She’s gonna run another lab and then see me in a little over 8 weeks! Delay delay.

When I asked why the delay - she said because they were busy! But all the times that I’ve been to see her in the last 10 months - there’s never been many people in the waiting room. 1-3 people at the most! Maybe she should try working an actual 40 hour week??!!

I live in a remote western region. Where the ‘cream of the professional crop’ typically does not settle. I understood that when I moved here. But dang it! Do your job!!

So hang in there! Do as much research as you can, understanding that much of what you read on the internet is conflicting and not always the straight truth.

Check out who wrote the info.

Good (great) doctors are out there. Ya just have to dig to find them.

And even most of the great doctors, only really know as much as they learned from the last big pharma salesman!

I have learned that they don’t really get a commission on drug sales, but big pharma might pay them big bucks for putting on a seminar that no one actually attends or in a nice, plush location!

We have a daughter in law, who worked for big pharma and from other research we’ve done. And, we’ve learned

It’s your responsibility to stay alive! No one outside of great friends or family is gonna help much with that!

I ask a lot of pointed questions. I’m not anyone’s favorite patient.

I don’t care! It’s my job to stay alive and learn. And you can’t learn by not asking intelligent questions.

Sometimes it’s good to know the answer before you ask!

That way you can tell if they’re dealing off the top of the deck. Many times they are.

But it’s good to know the ones that aren’t!

I wanted to know why the constant push for RX’s?
Now I know!

Good luck and stay alive!

Thank you for that information and I agree 100 percent with everything you said .
I’m still searching after 10 years and 6 Gastro Dr’s , so many tests done ☑️ even over and over .
So many diagnoses , tried everything RX , holistic, supplements . My symptoms are getting worse every year . Esp the last year and esp last 6 months .
I’m at a loss .
Now just suffer through my days , can barely eat , throw up a lot . Had that doubled over diverticulitis pain yest that put me to my knees crying for hours .
Been to Mayo Clinic in Jacksonville in 2021 . Live 3 hrs away .
My most recent Gastro is 1 hr 15 min away but she’s all book smart only .
I’m not able to enjoy anything in this life anymore ( have such chronic fatigue now too ).
62 years old … lost a decade .
Looks like no one out there can actually help me .
Glad you are doing a bit better.
I’d take 1 day a week relief but it never happens.

Dr Wang’s first concern was with my pain!! Very refreshing to find someone who gives a damn!!

Our daughter has a form of A S, her husband, a great guy, has back pain. She recommended that I try Tylenol ER 8 hour for pain. It works for them.

Well, Tylenol has never done anything for me, maybe it helps with an headache, my local pfp, is another great doctor who really cares for me. He was willing to prescribe some oxycodone (Percocet) for my pain. It worked, but I hate taking it.

I was also prescribed some 40mg Duloxetine daily. I think that helped and I take a supplement- L-Arginine. I think that helps with nerve pain.

I’ve tried therapeutic massage and even acupuncture. No help. I even tried CBD pills. Also no help.

I was desperate!!

So we bought some Tylenol 8 hour tablets and tried it.

I’ll be danged if it didn’t work.
I have no idea why!!

It took down the pain to a manageable level.

Actually, for me it works if taken in advance before pain gets out of control. If pain is severe, it doesn’t help after the fact!

Try it. It works for me, but doesn’t mean it will work for you. Everyone is different.

Pain is awful. Just flipping awful!!

I will pray! Cold packs for me help too. Heat seems to exacerbate pain - for me.

Try it ! Follow the directions, don’t take more than 3900 grams per day.

And good luck.

I feel for ya!

I have started infusion with inflexemab or remicade.

The oldest biologic - so I’m told. They know more about it than other biologics.

Some not so good things in the possible side effects, but, I was told by people who I trust, not to spend much time/energy worrying about them.

Besides, my life was so deep in pain, I didn’t feel I had much to lose.

I’ve only had two ‘start up’ infusions my 3rd full dose infusion is on August 8th.

I am much better, except for the pain. No better but maybe even a little worse.

I’ve read that improvements only Come after the second or third infusion. So fingers crossed!

You might inquire about that.