Diagnosed after 40?? Anyone???

[Ldncrad]

I’m 41. In the process of ruling other things out. I’m curious if anyone here was diagnosed between the ages of 35-45-ish??? I know there tends to be a spike in diagnoses after the age of 60, but I feel like I’m right outside of both of the ‘typical’ age groups for Crohn’s diagnoses. That said, I have pain low down on my right side, urgency, frequency (but not really diarrhea - just very soft stool). No blood. Sometimes my abdomen feels tender to touch all over.... the pain doesn’t seem to be in one specific place. It feels like ALL of my intestines are sore, if that makes sense. My blood work is fine. The hoops you have to jump through in Canada to see a GI specialist are ridiculous. I finally saw one in the summer and he declined the colonoscopy b/c I was asymptomatic at the time and the test for occult blood in the stool and fecal calproctin came back normal. I’m considering going privately to have a ‘virtual colonscopy’ (basically MRI of the colon following prep for colonscopy), but I’m not sure how accurate they are. Any thoughts?? TIA!

 

[Scipio]

I got my diagnosis later - at age 60, in the second bump of the bimodal distribution. But my symptoms were very much like yours: low right side abdominal pain, no blood, normal blood tests (until eventually the anemia hit), no diarrhea to speak of, and my colonoscopy was normal too. What turned out to be the key test in my case was the capsule camera endoscopy. That's how the doc first saw the ulcers in my ileum and diagnosed Crohn's.

No matter whether you get colonsocopy or MRI, you need to look beyond the colon. The disease might be confined to the small bowel. Is capsule camera endoscopy a possibility for you you? It worked for me.

 

[Tastemaker]

I started experiencing symptoms around 37 and diagnosed at 41.

 

[Ldncrad]

I started experiencing symptoms around 37 and diagnosed at 41.

Can you tell me what your symptoms were like?

 

[Tastemaker]

Can you tell me what your symptoms were like?

My first thing that happened was the development of a fistula. It became infected and I eventually had a fistulotomy to fix it. The healing process didn't go smoothly. The surgeon kept telling me "these things just happen" and there wasn't anything I did to cause it. That fistula was an on/off irritated area for a couple years before it broke open again. After a heavy couple rounds of antibiotics it closed up, but then other symptoms started cropping up over the following year - horrible gas, bloating, escalating frequency, mucus in stool (w/rare instances of minor blood). Other than the fistula, the mucus was the worst symptom. It got so bad that I began having instances where I would think I had to pass gas and would soil myself in mucus instead. A colonoscopy eventually confirmed what I already suspected.

 

[Tastemaker]

My first thing that happened was the development of a fistula. It became infected and I eventually had a fistulotomy to fix it. The healing process didn't go smoothly. The surgeon kept telling me "these things just happen" and there wasn't anything I did to cause it. That fistula was an on/off irritated area for a couple years before it broke open again. After a heavy couple rounds of antibiotics it closed up, but then other symptoms started cropping up over the following year - horrible gas, bloating, escalating frequency, mucus in stool (w/rare instances of minor blood). Other than the fistula, the mucus was the worst symptom. It got so bad that I began having instances where I would think I had to pass gas and would soil myself in mucus instead. A colonoscopy eventually confirmed what I already suspected.

Oh, also my blood work showed really high Sed Rate and CRP at that time. I only mention it because you said your bloodwork was fine. Mine revealed clear signals of inflammation, but I know there are people with Crohns who do not show elevated levels in their blood.

 

[curlywurly]

I was diagnosed at the age of 54 with Crohns after 6 weeks of the runs and right side lower quadrant pain.
I lost a stone in weight I had blood tests that showed inflammation some where in my body.
I was sent to see a consultant gastro who did a calprotectin test and my inflamatary markers were very high this was followed by a colonoscopy which
revealed inflammation in my large colon.

 

[Ldncrad]

My first thing that happened was the development of a fistula. It became infected and I eventually had a fistulotomy to fix it. The healing process didn't go smoothly. The surgeon kept telling me "these things just happen" and there wasn't anything I did to cause it. That fistula was an on/off irritated area for a couple years before it broke open again. After a heavy couple rounds of antibiotics it closed up, but then other symptoms started cropping up over the following year - horrible gas, bloating, escalating frequency, mucus in stool (w/rare instances of minor blood). Other than the fistula, the mucus was the worst symptom. It got so bad that I began having instances where I would think I had to pass gas and would soil myself in mucus instead. A colonoscopy eventually confirmed what I already suspected.

That sounds awful! I hope you’ve been able to resolve the fistula with medication. Thank you for sharing.

 

[D Bergy]

I was diagnosed around my mid forties, but in retrospect I had some sporadic symptoms since my mid twenties. Nothing too serious prior to my mid forties.

I have never had an MRI of my guts but plenty of CT scans. I have a slight glow at night. Not really. It is my understanding that the CT scans with contrast fluid are more revealing than an MRI for most diagnostic tests but I don’t know that for certain in your case.

Hope you can get some good answers.

Dan

 

[Ldncrad]

I was diagnosed around my mid forties, but in retrospect I had some sporadic symptoms since my mid twenties. Nothing too serious prior to my mid forties.

I have never had an MRI of my guts but plenty of CT scans. I have a slight glow at night. Not really. It is my understanding that the CT scans with contrast fluid are more revealing than an MRI for most diagnostic tests but I don’t know that for certain in your case.

Hope you can get some good answers.

Dan

I have also had symptoms sporadically throughout my life. They have never been severe and have always disappeared on their own, but things have been more persistent over the past 12 months. Can I ask you what changed in your 40’s?

 

[D Bergy]

I have also had symptoms sporadically throughout my life. They have never been severe and have always disappeared on their own, but things have been more persistent over the past 12 months. Can I ask you what changed in your 40’s?

Well, just getting older in itself causes some changes which include a less effective immune response and slower recovery from pretty much anything. I was under a record amount of stress also at that time which further lowers immune response. Those things contributed to the disease progressing faster than they would have otherwise to some degree but certainly are not the cause of the disease.

The disease is a mix of genetic susceptibility and environmental exposures to the microbes that cause what is the description of Crohn's Disease.
Not everyone with the genetic profile gets Crohn's just as everyone who is exposed to the microbes that cause the inflammatory process will not develop the disease. When both of those factors are present, I think odds are pretty good the disease will exist to some degree. The lucky ones will not get full blown Crohn's but something less as we had in our earlier years. That is a little simplistic but I think is basically how it works.

I focus on eliminating pathogens that cause my symptoms and with less confidence, attempting to bring my immune system back to something in line with a normal person. It is all trial and error, with lots of error, but I believe and have some evidence that the disease can be reversed to some degree. More time in remission will either prove or disprove my treatments but certainly doing far better than I was nine years ago. Actually other than the after effects of my prior surgeries, I do not have any current symptoms related to the disease.

Don't feel life is over even if you get a solid Crohn's diagnosis. There are many avenues of treatment both conventional and the unconventional.

Keep us posted on your story.

Good Luck

Dan

 

[Tastemaker]

That sounds awful! I hope you’ve been able to resolve the fistula with medication. Thank you for sharing.

Everything is good now, Thanks. My last fistula was luckily able to be closed up with a heavy round of antibiotics. I have since eliminated my other symptoms as well and my blood/stool tests show I am currently in remission.

 

[The Real MC]

First symptoms and diagnosis in 2005 at age 42. Symptoms started right after a bad flu. That virus messed with my system, there is a suspected connection between the flu virus and crohns.

 

[JoanneH]

I was diagnosed at around age 41, around menopause and within 3 months of courses of too many antibiotics for dental surgery. Incidentally my mother also was diagnosed with an autoimmune disease at the time of menopause (MS). I think hormones are involved. Both of us could recall mild symptoms earlier in life, like in our 20s, but we got royally zapped in our 40s. As for me, I blamed the antibiotics at the time. Maybe they were just a complication that helped to trigger everything.

 

[Adam1971]

I was diagnosed at age 41. Like others, i had mild symptoms since my teens in retrospect, but then it got worse quickly. I basically had TI stricture at time if dx and needed surgery several months later after no relief from humira. Symptoms included lower right quarter pain, pain under ribs when breathing in, bloating, some diarrhea. Surgery improved things until just recently.

 

[paulk]

I was diagnosed at 32. The first decade I had very mild symptoms, and could almost ignore it. Than I had 3 years from hell with a constant flare up. It got better now, but not perfect.

According to my doctor, he noticed that as his patients get older the disease gets milder. The immune system reaction gets weaker. Not scientific, just based on his observation, but gives me hope for the future.

 

[JasonBourne]

I was dx after 40, though had tests come through sooner, or various GPs/GI’s recognized and tested appropriately/timeLy a decade or more ago I probably would have been dx then.

FYI My blood then and now is generally good, or slightly out of tolerance. Even in the worst flare of my life (blood in stool every day for months), and previous visits about ongoing lethargy, my CRP was elevated, but not terribly suspecting. By the time I had my Dx I mentioned this to the GI, who said, “yeah, those aren’t particularly useful”. Off hand, maybe got up to 30 once.

I have my story here.

I’m 41. In the process of ruling other things out. I’m curious if anyone here was diagnosed between the ages of 35-45-ish??? I know there tends to be a spike in diagnoses after the age of 60, but I feel like I’m right outside of both of the ‘typical’ age groups for Crohn’s diagnoses. That said, I have pain low down on my right side, urgency, frequency (but not really diarrhea - just very soft stool). No blood. Sometimes my abdomen feels tender to touch all over.... the pain doesn’t seem to be in one specific place. It feels like ALL of my intestines are sore, if that makes sense. My blood work is fine. The hoops you have to jump through in Canada to see a GI specialist are ridiculous. I finally saw one in the summer and he declined the colonoscopy b/c I was asymptomatic at the time and the test for occult blood in the stool and fecal calproctin came back normal. I’m considering going privately to have a ‘virtual colonscopy’ (basically MRI of the colon following prep for colonscopy), but I’m not sure how accurate they are. Any thoughts?? TIA!

 

[Merv S]

Just before the age of 50 following acute appendicitis, appendectomy, and peritonitis. Gma set and match. That was 26 years ago and counting.