Mid-Life Crohn's Onset?

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Nancy Lee

Nancy Lee

Joined
Nov 7, 2006
Messages
2,161
Hi!

I am very interested in knowing if anyone else here was diagnosed with Crohn's disease later in their life. By 'later' I mean in their 40's or 50's and beyond.

If so, is there a difference in the extent and progression of the disease?

It appears at least on this forum that most members were diagnosed in their teens and early twenties. Not only does this make me feel old, but it raises questions as to why I did not develop the disease in my early years. Was it always there lying dormant?? What happened for it to become full blown at this time in my life?

Does anyone else know of someone who was diagnosed midlife and beyond?

Is there a member here in my age bracket? Over 50?

I would really appreciate some input on this....Thanks in advance everyone!

~Nancy
 
I have known of other people in their 40's or 50's who have just gotten Crohn's. They were on another forum but I do not like it much so I come here because I love the people here.

Did you change something you have done or did something traumatic happen when/before you were diagnosed.
 
Hi Jeff...My father passed away six months beforehand, but I have had many losses in my life, so I don't know whether that was a trigger or not.

I mean, I lost my mother when I was in my twenties, why didn't it 'rear its ugly head' then?

I think it had to have been there before because when I was finally diagnosed the Crohn's was well established in the entire length of the colon.

I appreciate the information...anyone else?
 
Inflammatory Bowel Disease is seen as having a bi-model diagnosis in the common population. The large one occurs in people around 12-28. Obviously it affects people a bit younger (down to birth) and older, but that is seen as about the range for most people getting diagnosed. A second increase in diagnosis occurs around 55-70.

Overall though it is possible for anyone at any age to be diagnosed. I once did a focus group where a gentlemen there was first diagnosed in his late 60's-70's, and it was under total control with medication.

I think the more probable reason for the demographics of this forum is that the internet has been more well received and understood by younger individuals. They would be more likely to search for different types of sites and to understand how to use an online forum. This is obviously a generalization (as we have members of all ages), but it appears to be true for the most part.

Hope that helps :).
 
I understand what you are saying Mike and appreciate your input!

Are there any other members here who had Crohn's onset in mid life I could talk to?

One thing I have noticed at my local Crohn's Chapter meetings is that those diagnosed in their 40's and 50's seem to get a faster handle on control of the disease.

It is so good to see most of you seemingly take things in stride.

Diagnosed earlier I don't know how or if I could have handled it as well.
But..I guess we do what we have to do. :smile:
 
I was almost 37 when diagnosed. Never had a single episode that could have even remotely been Crohn's, nothing. A couple months before my 37th birthday, boom. Chronic illness, life changing experience, ta da! Feel free to post, PM me, or e-mail me ([email protected]) if you want to talk about anything.
 
Thanks so much Cara. I will email you as soon as I get a free minute.
It would be great to talk to you. :)
 
I just found this old post but I have been wondering the same. Seems most of you are so much younger then me. I just had my 50th birthday and this was my gift lol

I used to have pains terrible when I was in my 20s. It was so dibilitating that I would sit in the floor and cry. Could not move! After a while, an hour or so I could move again although sore. Looking back I think that when that happened I blamed scar tissue from a tubal I had when I was 21 but Im rethinking that whole thing. I can remember thinking that my bowels were pushing on sore areas and would get much relief after a bowel movement. I had never even heard of Crohns until this past decade or so!
 
I was just diagnosed at 52 and it was definitely late onset. I was a garbage gut until I was 46 when I took Naproxen. After that no more obvious starches, but that was pretty easy since I didn't like it anyway and only took it to coat my stomach to take the Naproxen. At 49 I was transferred to Costa Rica where starch was in everything (including things I didn't know contained starch) and within two months I was in the hospital and the GP told me it was my colon. He sent me to a GI who did a colonoscopy/endoscopy and told me I had erosion in my esophagus and colon and two ulcers. No Crohn's and he did biopsies and tested for all kinds of things. I just had another colonoscopy/endoscopy and all kinds of blood tests and my GI in the US says I have Crohn's. I'm having more tests to figure out what type. On a good note, the erosion in my esophagus and my two ulcers are gone. Just waiting to see how she proposes to treat this.

I have to say, I was with Nancy and wondering if anyone else out there in my age bracket had developed it. I also don't have the common symptoms and that was pretty frustrating. The only time I've ever had diarrhea is the few times I've had the flu. I have the exact opposite problem and it's been that way from the start. The only reason I knew there was a major problem was because my right side stuck way out and hurt. I thought I had ovarian cancer. I didn't have a clue it was my colon. But when the doctor asked me what I'd been eating that I hadn't been eating before, I knew it was starch. That was the major change in my diet. He told to stop eating any kind of it immediately.
 
The only simularity I have in your story is that I was taking high doses of ibuprofen from october until my episode ( bad high stomach pains for 4 days). I was told it had nothing to do with what happened but to never take it again.
I had been taking it for back pain.
 
Interesting. Every doctor I've seen has either taken a look at the fact that I'm now allergic to Naproxen and asked if that's when the symptoms started or heard my story and told me it was the Naproxen. What I understand from them is that it's pretty well known as a trigger. Last week a doctor told them to put in my chart that I could never have any NSAIDs again. That would include Ibuprofen.

I had immediate problems from the first Naproxen I ever took. My stomach hurt and it made horrible noises. I was just on the over the counter kind. I took one every 12 hours. I took it for a soft tissue back injury from a car accident. Within a year I had an allergic reaction to it and had to stop taking it.
 
I find the simularity very interesting also. I was doing the same, using the ibuprofin. It was helping alot but there were days that I would take 6 of the 200mg a day, or 2 of the 800mg. When I got sick I had tapered myself down and was trying just to take a few in the evening to help me not be so stiff when I woke up. I had been on it 7 months like that.
 
I haven't read anything about that being a known trigger, but I do think everyone's sensitivity is different. There's no way I could have taken that much Naproxen. I could barely tolerate one over the counter tablet and I have a very high tolerance to pain meds as a whole.

It may be one of those cases where you know in the back of your mind that it did it, but you may never had that verified or it might come in 10 years.

I'd be very suspicious if they told you never to take it again. Maybe it's not proven so they feel they can't say it?

Honestly once I read that it was a trigger for various digestive problems (including Amylase Deficiency which causes the whole starch problem), I knew that's what it was. It made perfect sense as that was so clearly the turning point for me. I was more surprised that so many doctors confirmed it.
 
I was diagnosed in 1986 - I was 38 at the time and sick for 2 years before being diagnosed - doctor told me it was all in my head and gave me tranquilizers; also thought I was anorexic/bulemic; best thing she did was send me to a specialist who diagnosed me right away after a colonoscopy. I was relieved to finally have answers.
 
I developed Crohn's when I was 46. I was diagnosed with IBS in my 30's but I immediately knew that the Crohn's pain was something totally new. Two weeks before I experienced this for the first time, I had spent a week in Mexico. I firmly believe that I picked up some kind of bug that activated the Crohn's. I was very careful with what I ate and drank and didn't get sick at all while down there but it just seems too coincidental.
I am now 55 and had my first resection in April. The surgeon removed 23 inches of my small intestine and for the first time in 9 years I am mostly pain free. It's such a great feeling !
Donna
 
I was diagnosed last year after a perforated bowel requiring emergency surgery. I was sixty. I was a symptomatic.
 
I was diagnosed aged 40 after 12 months of symptoms.
2 difficult years on and still struggling to achieve remission but still feeling hopeful.
 
One thing becomes more obvious the more I read - every case of Crohn's is very different. I had no obvious problems until my mid thirties - some bad times and a couple of ops. Then from the age of forty until earlier this year I was in perfect health - apart from a frequency issue. I am fifty three. I am now on Azathioprine and have made some diet changes - so I expect at least another thirteen problem-free years - but who can tell!
 
I was just diagnosed in last month after a bowel obstruction in April that perforated and caused an abscess. I had problems with D off and on for about 6 years, diagnosed with IBS, then lactose intolerant. CT scan when I had the obstruction indicated Crohn's and biopsies during a colonoscopy in June confirmed that. I will be having a resection surgery on July 5th to remove the abscess and some scarred small intestine. I am 58.
Over the years I have looked at symptoms of IBS / IBD, and always thought I couldn't have Crohn's because my symptoms weren't as severe as what I read about this disease! I guess I am one of the "lucky" ones to have a mild case of Crohn's!
 
I was diagnosed a year ago at the age of 51. It was a bit of a Wham experience. I've been lucky enough to be really healthy, bar a couple of blips, all my life. Then Wham, I woke up one night with a weird stomach pain, the D and vomiting and things kept going downhill. Diagnosed after 8 months with Crohn's, battled an intestinal abscess and fistula which luckily my medical team managed to knock on the head.
 
I'm another mature age "Chronie" (now 57)- first real indication was 7 years ago. Had ~2 weeks of persistent D, followed by a proper right ankle arthritis and BAD bilateral iritis, and mild urethritis.
-> diagnosis of Reiter's Syndrome
Never imagined it could be Crohn's disease.. had always been plump and a bit constipated!
So didn't get around to a colonoscopy until a 2nd bout of D with some bright PR bleeding, and another bout of iritis.
Had taken NSAIDS on and off for tendinitis/RSI issues for years, long term low dose tetracycline for acne late teens/20's.
No family Hx of IBD, but an had aunt with bad rheumatoid arthritis, and had 12 months of recurrent crops of aphthous ulcers 30years ago just after my father passed away
With the "retrospectoscope" it fits together, but the diagnosis of Crohn's colitis came as a complete surprise.


HD
 
Hi Nancy Lee!

After 3 months of symptoms I was diagnosed just after my 41st birthday in 2011. No previous evidence of any bowel problems, so a bit of a bolt from the blue. Even my GP was stunned!

It did, however, start shortly after a couple of short periods of acute stress, which I'm sure were my trigger. Perhaps it was lying dormant for all this time. My Mum's side of the family have a variety of auto-immune type conditions, so I wouldn't be surprised if it was below the surface just waiting for that catalyst to set it off.

I'm so grateful that it has waited until now to rear it's ugly head, as I have got past the teenage years, and having children, which the younger members have to cope with. My children are 9yrs and 11yrs, and they are so understanding and able to care for themselves in most respects when I'm feeling rotten.
 
Hi, I had about 10 years of mystery stomach pain that I thought was rumbling appendix with vomiting and diarrohea, doc said it was gastro (I used to wonder, but you know, I thought i was eating too much fibre), i had other weird things like sub acute bowel obstructions, 3, anal sphincterotomy x 2 never really knew what it was but like a big blood blister the doc said, then my gall bladder collapsed and had that out, and in the middle of that, a specialist doctor said things dont add up, want to do a colonsocopy and gastroscopy, and for my 43rd birthday i basically got the gift of crohns, in my stomach duodenum and terminal ileum and all over the small bowel, ugh. What a journey! And so many fun and exciting experiences since... so it has been 15 years now! Hugs, Linda
 
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I was diagnosed a month before my 47th birthday. I did have a diagnoses of IBS for 20 yrs prior, I always felt there was more to it! Carol
 
Hi, I'm Graham in Perth Western Australia. I'm 64 years old, diagnosed with Crohn's disease in May of this year. I've had what I always thought of as a rumbling gut, at least since my 30s, that used to only give me problems occasionally. But in the last 5 to 10 years it got worse. I was only diagnosed after I told my Dr that I had also been having night sweats, as well as bouts of violent shivering during the day which triggered a battery of tests and uncovered crohns lesions.

One of the things I found really interesting when reading through all of your stories, is that NSAIDS seem to frequently play a role in the development of your Crohn's. I too was on NSAIDS for about 10 years before my diagnosis. I was taking MOBIC to help me with back pain.

My gastroenterologist immediately put me on prednisolone after my diagnosis, and then on to Imuran. However, I had a major problem with Imuran, instead of helping with my Crohn's, it catapulted me into a full-blown Crohn's flare, the likes of which I have never experienced before. It basically turned me into a semi-invalid overnight. I was all ready to book myself into the hospital, but then my GI called and told me to stop taking the Imuran immediately. Within a day or two the symptoms were gone.

This episode confirmed my worst fears about the drugs used to treat Crohn's, I'm currently tapering off prednisolone (down to 5 mg per day) planning on managing my Crohn's with diet and perhaps with alternative therapies such as naturopathy. I am seeing my gastroenterologist today and I'm going to tell him my decision. I'm hoping that he will decide to assist me in this, as it would be useful to continue having regular blood tests for CRP etc to make sure that my inflammation is not getting any worse. I'm also hoping that I can continue to have colonoscopy's etc. on a periodic basis for the same reason.
 
I was diagnosed with UC at the age of 49 in 2010 and appears to have developed after a bad stomach/intestinal virus. The diagnosis was changed to Crohn's in May 2012. Most seem to develop IBD's earlier in life so I was very surprised at my diagnosis.

Best wishes
 
I replied earlier on this thread, but the recent comments are interesting. Certainly the bimodal presentation of CD is evident. Also, the "mature" group seem to have a different disease course. There's an interesting paper by Prof Tom Borody quoted on another forum link, regarding his hypothesis that CD is an umbrella Dx for a number if similarly presenting granulomatous bowel conditions.
At my initial diagnosis I was started on 6mp, which I instinctively felt was a bit over zealous in relation to my Chron's symptoms (although the associated iritis was certainly significant!)
After some miscommunication and a change of GI's, the 6mp was ceased and sulphasalazine 3gm daily was prescribed. 2 years later, colonoscopy and CRP are apparently normal, I still work 30-40 hours/week, the eyes are quiet (MOST important!!), and the gut is a bit grumbly, sometimes. (nothing to complain about, but never thought I'd miss apples and lettuce!)
I'm convinced genetics + NSAIDs and antibiotics are significant.. Just wonder about the variable expression of CD different age groups. Is there something we're missing?

HD
 
I was reading the thread and wanted to chime in. After 5 years of being misdiagnosed and picking a new Dr. Today I had a colonoscopy/upper gi and afterward my Dr. said he believes I have Crohns disease of the small bowel. I am 50 yrs. Old and the last 5 yrs. Have been (bad word). Asacol doesn't. Work and every gi Dr. Have said that diet doesn't. Seem to matter. I believe they are wrong!!! You guys have at least given me some hope that I might feel better soon. Thank you!!!
 
SherryLynn said:
I find the simularity very interesting also. I was doing the same, using the ibuprofin. It was helping alot but there were days that I would take 6 of the 200mg a day, or 2 of the 800mg. When I got sick I had tapered myself down and was trying just to take a few in the evening to help me not be so stiff when I woke up. I had been on it 7 months like that.
Click to expand...

I just found this thread, I was diagnosed a few months ago at age 64 with Crohn's disease terminal ileum. Like you Sherry Lynn, when I was younger my 20s or 30s. I experienced a lot of stomach pain and I can remember nights sitting up nursing my stomach and trying to stop the pain.

Another commonality, before my diagnosis. I have been taking an NSAID drug for about 10 years as medication that was prescribed for me by my Dr for back pain, the brand name was Mobic. It was only last year when I develop some other symptoms primarily being night sweats as well as pain in the gut and diarrhoea, and had a colonoscopy and other tests which led to the diagnosis of Crohn's disease.

Also in recent years. I've been under quite a lot of stress, for about five or six years over the last eight years I was working for a woman who I usually referred to as the bitch from hell or the boss from hell, so I also have stress in common with many the other people on this list.

I know I used to have pains in my gut in my 20s and in my 30s, but I suspect that it is probably a combination of the Mobic and the stress, and also perhaps a bit of heredity which made it flare up again in recent years and led to my diagnosis.
 
I was diagnosed earlier this year at 50. Always trended more toward the "D" when stressed but no real problems until after a trip to Mexico in '07. The "D" became more frequent but stool tests showed nothing. Had 3 sbo's in the last 8 months and now waiting to see GI on Thursday for more testing to see if it's inflammation or stricture. Tried to do a CT enterography last week but couldn't keep the contrast in me.
 
I was diagnosed at 49 and am now 51. I probably had it they think since 20 when I had a ruptured appendix and peritonitis. I had several a dominal surgeries in my 20s then my 30s were very healthy..fast forward to 40 when I was in the peace corps in Africa and had been in India for 8 months doing work. They flew me home and bam!diagnosed with crohns disease.its been a very hard last 10 years. Overall I have had 10 abdominal surgeries,6 of which were bowel resections and 5 emergent.
I have been on all drugs for crohns except cimzia and I am switching to that this bec week from humira because I still have debilitating diarrhea, pain,and inability to sleep at night because of those symptoms.
I am also going to Chicago at the end of this month for a second opinion and have decided through my research and asking ppl on this forum,for an ileostomy. I have reached my limit on dealing with all these symtpoms and although I know it's not curative for crohns, I am hoping it will decrease the pain and need to be at home bear the toilet..I have incontinence of stool now..lovely!:(
Crohns can confound the best of clinicians AND us so nothing surprises me anymore where this disease is related!feel free to pm me anytime!:)
 
Nancy Lee said:
Hi!

I am very interested in knowing if anyone else here was diagnosed with Crohn's disease later in their life. By 'later' I mean in their 40's or 50's and beyond.

If so, is there a difference in the extent and progression of the disease?

It appears at least on this forum that most members were diagnosed in their teens and early twenties. Not only does this make me feel old, but it raises questions as to why I did not develop the disease in my early years. Was it always there lying dormant?? What happened for it to become full blown at this time in my life?

Does anyone else know of someone who was diagnosed midlife and beyond?

Is there a member here in my age bracket? Over 50?

I would really appreciate some input on this....Thanks in advance everyone!

~Nancy
Click to expand...
Hello Nancy Lee,
Yes I was diagnosed with crohns disease at age 53, I am now 63, so have had it for 10 years. It has been a very terrible journey. But am responding well on infliximab. Was hospitalised last year with fistulas. I do not know why I got it so late in life, but I am thankful I was free of it in my younger days. Wishing you well. :hug:
 
Im late joining this feed but I just turned 50 and had a recent diagnosis. Admittedly I have been having issues with cramps/night sweats/shivers/fevers and what I can only describe as painful/blocked bowel movements for aprox 5 years. But no diarrhea....until 3 months ago. But what I find most interesting about the comments is that due to a couple of whip lash experiences I have suffered from painful neck issues and had found over the counter naproxen (about 6 years ago) to be such a Godsend. I never took it that often but now Im so afraid that this is possibly why I have developed this condition. Uggh!!!
 
My Dad was diagnosed with Crohn's Disease in his 40's. He got very sick, before they finally figured it out. Once he was diagnosed, he was put on TPN (IV nutrition) and IV steroids. He got better a month after treatment and he has been pretty healthy ever since.

What I would recommend, is to get referred to a GI Specialist, and request a Colonoscopy and other tests, to see if you have Crohn's. Symptoms include: weight loss, diarrhea, nausea, bloody stools and abdominal pain. Good luck!
 
I'm 47 and there's a very good chance I'll soon be diagnosed with Crohn's. I failed the ASCA blood test and there is a "focal ileus" in middle-left quadrant that came up in a recent X-ray. GI appointment pending. Had an endoscopy and abdominal CT scan 8 years ago for mild, recurring abdominal pain. Both tests were normal.
 
I was diagnosed when I was 41 when I landed up in the ER and had a major abscess which led to a colostomy and a whole summer living in the hospital. Prior to that I lived with misery since my early 20's and simply lived and dealt with it. I remember going into the ER to get an abscess lanced that was as big as a golf ball and then going to work for the 4-12 shift. I had bills to pay, it was a long hard life, but I took the retirement package as soon as I had the colostomy surgery. This was a process in itself, being a bit young, but I went through the hoops and got my employer's retirement and then CPP disability approved which was another long process. I could not possibly cope with Crohn's, a colostomy together with working today, so the timing could not have been better.
 
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I was diagnosed in 2010 at the age of 52. On Remicade & methotrexate. No surgeries yet. Have managed to hold them off so far. Was diagnosed with severe Crohns so put on biologics immediately. Tried Humira and Stelara but both failed. Remicade is my miracle drug.
 
I was diagnosed aged 51 but honestly feel I was undiagnosed for at least a decade before that. It was repeated partial obstructions that landed me in hospital that finally resulted in getting a diagnosis of crohns. Had a resection surgery at the terminal ileum in September 2016 but unfortunately remission did not seem to last long, as I'm currently flaring I think. I may have to go down the biological meds route next, as I don't think I could face more surgery so soon, what I really hate about this disease is that I'm feeling so medicalised!!
 

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