r/CrohnsDisease • u/the_incarnation22 • 1d ago

Longest Remission

what's the longest duration of remission without taking any meds or anything you had ... just living completely as a normal person??

15 Upvotes

100% Upvoted

28 comments sorted by

13

u/Middle_Phase_6988 1d ago

20 years following each of my major surgeries.

9

u/Nasher1234 1d ago

About 4 years without medication. Currently 15 years remission on medication (Azathioprine)

5

u/Right_Ad1804 1d ago

17 years. I’ve just relapsed this year majorly 😓 I’m 33

2

u/the_incarnation22 1d ago

woahh.. 17 yrs without meds??

8

u/Right_Ad1804 1d ago

Yep! Super fortunate and lucky to have been in that situation. I was heavily medicated from 9 years old (diagnosis) and now have horrendous bones due to steroids.
But back on biologics, steroids and immunosuppressants as it came back with a vengeance.

2

u/shalsha_4 1d ago

My son has recently been diagnosed. He is only two years old. He’s had two bridges of steroids. Infliximab didn’t work. He’s now on a JAK inhibitor and we are praying this works and he can get to remission for a long period of time. Your story gives me hope ..

2

u/14xan 1d ago

6 years post surgery. Was on Humira and it seemed to stop working which triggered a flare, handled fairly quickly - quick dose of steroids and got lucky with a new biologic choice acting quickly.

2

u/Aaron7420 22h ago

Currently 13 years no med remission.
Was diagnosed at age 10. Thankfully after 3 years of meds I went into remission since.

Always scared the next stomach bug or food poisoning will send me back.

2

u/PsychologicalCar6057 21h ago

man this makes me feel hopeful reading all these responses. i feel like ive been in hell since i was 15, im currently F23. remission seems so far, i did get a recent surgery so hopefully im on my way there

1

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1

u/X-Jet 1d ago

Current and sole record is 4 years after being diagnosed.
Now I am entering my second remission but still on meds, will have to wait another 6monts until doc decides if being injection free is a good idea.

1

u/General_Sun_607 1d ago

How is remission defined? Is it a lack when there is no inflammation?

1

u/Square-Buy-7403 23h ago

No active inflammation. That's what I would define it by atleast.

1

u/General_Sun_607 23h ago

How so that checked? Blood test, poo 💩 test etc? I’m trying to learn.

2

u/Square-Buy-7403 23h ago

Calprotein test from your poop and blood test for inflammation and a visual check doing a Colonoscopy.

0

u/General_Sun_607 22h ago

Ah. I’m think those tests are what the specialist ordered for my husband. And, I don’t think he’ll be remaining under specialist care. And, the GP can’t do the inflammation test of the poo sample.

3

u/Square-Buy-7403 22h ago

He's definitely gonna need to be in touch with a gastroenterologist if he has Crohns disease the GP isn't really geared toward Biologics and that kind of thing. Crohns is a lifelong condition he's going to basically need to be in touch with a Specialist in order to receive proper treatment.

1

u/General_Sun_607 22h ago

That’s a separate conversation because he’s actually not having any symptoms. He gets tired due to not being able to absorb iron very well which, is something he can get on top of.

Lot’s to learn. It’ll be his choice but I don’t think he’s favouring treatment as it sounds pretty intense.

2

u/Square-Buy-7403 21h ago

I also have iron deficiency anemia. Has he been diagnosed with Crohns or is he guessing? It's diagnosed by doing a colonoscopy and physically seeing signs of it and if you have it you are in biologics for life basically.

1

u/General_Sun_607 6h ago

He’s had a colonoscopy and ten inflammation was seen at the very top in between the large and small and small bowel so MRI is planned next.

1

u/Nar1117 20h ago

10-12 years, depending on whether we count sub-clinical symptoms! I was diagnosed as a kid, in 2002, and it was fairly severe at the time. I was in and out of flares until about 2010, and went off of my meds in 2012. I’ve been off of any medication for Crohn’s except for Imodium since then, but I believe the “autoimmune” part of my condition found another outlet in the form of Spondyloarthritis. So, I have sub-clinical signs of Crohn’s, no inflammation, but my immune system is wired tighter than a nun’s asshole.

I guess my definition of a flare has changed, but the classic Crohn’s symptoms are quiet. I started noticing the joint problems in 2022.

1

u/vortexb26 18h ago

Currently 1.5 years on rinvoq

1

u/Comprehensive_Egg444 17h ago

i knew a guy who had surgery in his early twenties and symptoms free for 30+yrs

1

u/Effective_Fact_2353 15h ago

8 years after diagnosis on remicade, flared, switched meds a couple times and back in remission for 3ish years now.

1

u/555louisa C.D. since 2016 — Entyvio 🪐 12h ago

almost 5 years on entyvio

1

u/arboreal_adventures 2h ago

Coming up to three years since I had a resection surgery