HealingWell
Search Close Search
☰

How long since you were diagnosed?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/23/2023 3:59 AM (GMT 0)
Hey everyone! I'm coming up on 40 years since I was diagnosed. Back then there was like 3 drugs to take, steroids,sulfasalazine , and imuran. As you longtime members know, I've been there and done that on most if not all Crohn's symptoms, tests, surgeries, complications etc...
I wonder sometimes what would have been different had all these newer meds been available decades ago or if I had been born 30 years earlier with the same progression of my illness I most likely would not have lived past 30.
Posted 6/23/2023 2:31 PM (GMT 0)
21 years for me on July 4! I was fortunate to be put on Remicade 2 years after an emergency small bowel resection & a complete blockage.

Treatment for crohns disease has certainly come a long way with so many choices of medications.
Posted 6/24/2023 3:45 AM (GMT 0)
8 years ago I was diagnosed after almost 3 years of searching for answers and the doctors thinking I was making it up. It's the only time I've been relieved to have a fistula occur...
Posted 6/26/2023 4:22 PM (GMT 0)
Diagnosed December 2005 as I nearly died from the Crohn's. Acquired Crohn's disease April 1997. So it was about 17 and a half years ago I was diagnosed.
Posted 6/26/2023 8:02 PM (GMT 0)
Isn't it ironic how well we all remember being diagnosed with Crohn's?

It's such an unrelenting disease, and most of us have so many struggles.... But we can all tell you when we developed it.

Clo
Posted 6/26/2023 11:26 PM (GMT 0)

clo2014 said...
Isn't it ironic how well we all remember being diagnosed with Crohn's?

It's such an unrelenting disease, and most of us have so many struggles.... But we can all tell you when we developed it.

Clo

Clo,

I was just thinking the exact same thing. Being diagnosed with Crohn's is a pretty significant event in ones life. Similar to remembering where you were the day a historic event took place.
Posted 6/27/2023 3:49 AM (GMT 0)
73Monte,

It really is. I may forget the exact order of the struggles I've gone thru after being diagnosed but the beginning is so very clear.

I sometimes wonder if they found a cure... Would that timeframe be as clear to us? I hope it happens so we all get to find out.

Clo
Posted 6/27/2023 4:10 AM (GMT 0)
I was diagnosed in 1994. So 29 years ago. I remember every detail leading up to my diagnosis and the years afterwards. I guess refined sugar, or exposure to some toxin, or stress or a combination of some sort contributed to the development of my disease.
Posted 6/27/2023 6:06 AM (GMT 0)
Ok, so now the next question is how many of us have blood relatives that are crohnies?
That I know of just a 1/2 cousin on my moms side and he was almost as bad as me , back in the day, but I have not heard from him in 30 years.

Any fathers,mothers, siblings?
Posted 6/27/2023 5:38 PM (GMT 0)
You know I'm always looking at that. No one else diagnosed in my family. No one else will admit to any problems or issues. When I ask they all get very very uncomfortable.

But then I start really thinking on it and wonder..

My Grandmother would have days when she would be bloated... But I never knew if that was "female stuff" or what. There were days when she wouldn't eat... And she was a picky eater--would only eat certain brands....(I mean throw a fit if you brought her the wrong brand... Have to go back out and get the correct brand..)

Everyone in my family has a 5 minute button. We don't know until it's time to go go.... LOL... And we all have to go after a large meal.....

So I always wonder.

Clo
Posted 6/27/2023 8:25 PM (GMT 0)
I was officially diagnosed on my 54th birthday, 19 years ago. However, the GI was able to establish that I likely had active disease at least 30 year prior from all the incidences of extra-intestinal manifestations like kidney stones and uveitis/iritis I had in my mid 20s.

To answer your second question, Randy - my mother was diagnosed with ulcerative colitis at age 75. He brother was diagnosed with UC in his 60s.

PS Hello everyone!
Posted 6/28/2023 12:43 PM (GMT 0)
I don't have anyone in my family with crohns. My dad & sister had RA, both have since passed on from other medical issues.
Posted 6/29/2023 4:32 PM (GMT 0)
Randy,

Hope you are doing well!

Off topic but wondering... Didn't you have a blog about your journey? I can't find it anywhere.

Clo
Posted 6/30/2023 1:14 AM (GMT 0)
Yeah clo. I lost it when yahoo shut down geocities 15+ years ago. I've been thinking of redoing one and fill it with all the crap from the last 20 yrs!😋 if I knew how. Maybe ill write it out long hand and have it converted to digital.

As for me generaly, kidney stones, liver problems from 23 yrs on TPN and general aches and pains.
Posted 7/1/2023 12:53 PM (GMT 0)
I have not been counting the years because Crohn’s has been with me most of my life but your post got me doing the math and I am at 44 years since diagnosis! Was on prednisone for the first ten years. The sulfa meds gave me headaches so steroids were the only option. We have come so far with the medications. Stelara is failing me now and I am trying to decide between Skyrizi and Rinvoq.
Posted 7/8/2023 3:03 PM (GMT 0)
A second reply, I was diagnosed December 2005 for Crohn's and my two brothers were diagnosed for Colitis at the same age as me at age 38. All 3 of us were diagnosed at the same age 38. My sister is the only one without Crohn's or Colitis. My father had Colitis.
Posted 7/8/2023 4:26 PM (GMT 0)
17 years (that is crazy to think about!) I had had mild bloating symptoms and nothing really else but that year got a botched root canal where they loaded me w antibiotics, got the flu, then a switch just flipped and after completed spiraling with all these new debilitating symptoms I ended up w a Crohn’s flare that landed me in the hospital for a month. So crazy to think about that time and how things have gone since! Definitely right it’s a time burned into your memory like nothing else.
Posted 7/10/2023 9:14 PM (GMT 0)
i was diagnosed in 83,started with methotrexate,Immuran,Sulfasalazine.after 4 yrs i had my first resection,then changed to Remicade and methotrexate.this and diet seemed to change my outlook on life .fast forward to 5 more resections and Humira instead of Remicade.countless uses of steroids for inflammation.became immune to humira after a couple years and then placed on Entivio after two infusions i needed yet another resections.i was then placed on Cimzia which appears to be doing its job(i hate those injections every 28 days),this past march i had my 7th and hopefully last resection.they removed 85% of my small intestine,now even though i feel good i am also showing signs of short gut syndrome,will see gastro doc in a few weeks and ask her what is down the road for me
Posted 7/11/2023 12:56 AM (GMT 0)
Hey john, I was hoping number 7 was my last one too! But there were 5 more in the next 9 months back in 2000. Am holding steady at 14. 😋 been on TPN since Dec 99 for extreme short bowel. Glad your doing ok now.
Posted 7/12/2023 10:20 AM (GMT 0)
Sixteen years since my diagnosis but have only started Remicade in 2016 after exhausting all meds out there. Remicade was a life saver but failed it due to an allergic reaction in November 2022. Started Stelara February 2023 but tbh, it's not comparable to Remicade. For me, Stelara is not as effective as Remicade. My GI commented twice that he is thinkin of changing it though my trough level is 9. Currently, I'm scheduled for an MRI to rule out a new fistula.
Posted 7/15/2023 3:48 AM (GMT 0)
I began having alot of intestinal issues in 2014. But it wasn't until April 2015 that I was officially diagnosed with crohns. I was put on methotrexate and budesonide at first. Did well for a few years. Then #€!! broke loose and I was put on humara. That worked for awhile. Then 2 years ago I was switched to remicade and Imuran. I was doing infusions every 8 weeks. Then I began having flares before 8weeks. So they moved it to every 6 weeks. After awhile had issues again so now it's every 4 weeks. I'm not due til next week and I've already got another flare up.
My grandfather passed away 50 years ago from an intestinal blockage that caused an eruption. He was never diagnosed with crohns but it probably was crohns
Posted 7/15/2023 4:18 AM (GMT 0)
Hey bucko, my moms father died at a youngish age . all they knew was he had stomach trouble. I'm talking like 80 years ago, so yeah don't think they knew much back then.
Posted 7/17/2023 6:09 AM (GMT 0)
I was diagnosed seven years ago at the age of 56, but frankly it wouldn’t have surprised me if the diagnosis had come twenty years sooner. By the time it was diagnosed, I had pretty well learned to manage things and my gut had not been giving me nearly as much grief as it had in previous years. The thing that got me was anemia. The search for the cause of that led to abdominal CT, upper GI, and a couple colonoscopies, which identified a stricture In the terminal ileum and…. Crohn’s. Started on Imuran and Entocort. Transitioned to Imuran only with a few switches back and forth to mercaptopurine because insurance gave me a better deal on one or the other at different times. Everything seemed generally good for seven years until the end of May when I had my first small bowel obstruction. Two days in the hospital and back home. Tapering prednisone starting at 40 mg/day. A week and a half later, SBO #2. Five days in the hospital and back home. Prednisone up to 60mg/day. Colonoscopy last week and my doc thinks I’m done with Imuran and is recommending Entyvio. A little unsure about that but… now lots of research and soul searching.
Posted 7/24/2023 11:44 PM (GMT 0)
I’m about to hit 20 years since my Dx in the fall. Made it without surgery or biologics. I feel like a dinosaur to doctors. But time and the disease caught up. My strictures will be coming out.
Posted 7/26/2023 2:55 PM (GMT 0)
I got Crohn's disease through food poisoning back in April 1997 when I was 38 and a half years old. It looks like I'm one of the few who can say my intestines and bowel health and overall health was perfect even better than most healthy people before I got poisoned.
✚ New Topic ✚ Reply
12