What age were you when diagnosed

[gillmc]

Hello

Recently joined the forum and am interested in what age everyone was when diagnosed. I was 45 but had symptoms for 3 years prior to that, put down to IBS until a final colonoscopy into the small bowel and a barium found the narrowing of the ileum and ulcers.

I do believe Crohns is more commonly diagnosed in childhood but in my case my GI said it's probably always been there and laid dormant for the most part since childhood.

I would be interested to hear you dx stories

Gill

x:ysmile:

 

[upsetmom]

My daughter was 14 . She was sick for a year before being diagnosed...

 

[xSuzy]

I was 35 years old, had been sick for almost three years and was weighting between six and seven stone.

 

[xmdmom]

My son was 19 and was diagnosed after 3 months of diarrhea and 10 lb weight loss and anemia, but had years of minor gi issues prior to that.

 

[afidz]

Hello!
I was DX at 18 but I started getting sick around 16 or 17, I was constantly in the E.R. with suspected appendicitis. After they took that out and I still was not feeling good, I went to a GI and was diagnosed shortly after
Are you on any meds?

 

[muppet]

I was diagnosed at 6, and my daughter was diagnosed at 3, but from what I understand from my GI, most people are diagnosed in their 20s with Crohn's. I'm not sure if that statistic still bears out "nowadays", because I see an awful lot of kids' cases showing up on this forum, but then, those are the areas of the forum where I tend to hang out, so my perspective is probably a little skewed.

EDIT - for accuracy's sake, I should say, I was diagnosed at 6 with Ulcerative Colitis, but my diagnosis was updated to Crohn's at around age 25 as a result of a biopsy.

 

[ctrl z]

I was 32 when officially diagnosed (in 2010) but I've had GI issues since I was in high school.

 

[Avw]

18

 

[exit4]

I was diagnosed with UC at 24. 2 years ego at 47 my diagnosis was changed to Crohn's.

 

[ryanps]

Dx when I was 35.

 

[SarahBear]

I was diagnosed a month before I turned 17. I began showing mild symptoms at age 8; they got severe at 14 or 15.

 

[Ozboz]

I was DX at 24 bout 3 months before my 25th birtday

 

[gillmc]

Hello!
I was DX at 18 but I started getting sick around 16 or 17, I was constantly in the E.R. with suspected appendicitis. After they took that out and I still was not feeling good, I went to a GI and was diagnosed shortly after
Are you on any meds?

Hi Afidz

No, Im not currently on any meds....my last meds finshed back in Match this year, which were Imuran and Budesonide. I tapered off the Budesonide and carried on with the Imuran for about 2 months but found they werent helping so I stopped them. Prior to that I was first on Azathioprine but these badly affected my liver and was advised to stop ASAP.

I am waiting for a further appt for another barium as my diarrhea has been pretty bad (for me) over the past couple of months. I also have an ectopic heartbeat (PVC) which seems to get really bad when my Crohns is flaring up...dunno if this is related but it seems to be with me!

Im not sure which meds will be next.

Gill

x

 

[muppet]

I'm a little distressed to hear that you're currently without any meds and flaring. When do you see your specialist again?

What about prednisolone? You might also want to ask your doctor about trying the azathioprine with allopurinol, which MAY address the liver problem.

The heavy hitters are Remicade and Humira and you should ask your doctor about them. Some people have a good result from "lesser" drugs like 5-ASA (colazal, asacol, sulfasalazine...) but there are risks associated with trying those with Crohn's, but ask your doctor!!

Definitely don't try to go for too long without any meds, that's bad news!!

You should also ask your doctor or see a dietician about dietary modifications that may help with your Crohn's. I use a low-residue, no-dairy diet and I do pretty well with that. Other people use more exotic diets like modified keto/paleo diets or the specific carbohydrate diet, the latter which is backed up by some good research (but is hard to stick with). Diet is pretty important with Crohn's, probably as important as your meds, and shouldn't be ignored.

I hope you feel better soon.

 

[gillmc]

Hiya Muppet, thanks

I saw my GI two weeks ago, and he has referred me for another barium. I had bloods taken which showed 'some' inflammation so I have no idea what he plans to do next. No on has ever suggested a modified diet, plus I can't pinpoint anything I currently eat with a flare. I have told him I do not want to go back on to steroids as I have issues with depression/anxiety (as im sure a lot of folks have with Crohns) as it is and I feel they would make it worse.

So until the barium has been done, I'm pretty much in limbo I'm afraid

Gill

 

[muppet]

I also have depression/axiety issues with Prednisone, even paranoia, but I find it preferable to flaring and the damage it can do, unfortunately.

Even if you can't pinpoint your trigger foods yet, a low-residue diet is probably the easiest of all options to follow and I'd recommend you try one and see if it helps. When I was diagnosed in 1983 most doctors said "eat whatever you want" but my parents persisted with a dietician and it probably saved my colon if not my life. I get a lot of relief from it. I admit I don't always follow it when I'm feeling well, though.

 

[ktp112]

I was diagnosed at 19, but was getting symptoms that I just ignored for about a year before that. It took a really bad flare, probably brought on by too much alcohol (haha I'm an irresponsible college student, okay?) before I actually went and saw a doctor and had it confirmed with a colonoscopy.

 

[seebee]

Hi, I saw that you were on Azathioprine and then Imuran. I was wondering if you noticed a major difference between the generic (aza) and the brand (imuran)?

 

[gillmc]

Hi, I saw that you were on Azathioprine and then Imuran. I was wondering if you noticed a major difference between the generic (aza) and the brand (imuran)?

Hiya

Sorry I meant I was on Azathioprine then Mercaptopurine.......a 'doh' moment there!!! :ywow:

 

[emmaaaargh]

I was diagnosed when I was 9. It was pretty much then that my symptoms started - I think it was about a month or two from the D starting to my diagnosis. Five years, go me. *blows unenthusiastically on a noisemaker*.

 

[Dukeis]

I was finally diagnosed when I was 28, but had problems for 10 years before that.

 

[muppet]

Ack I think I confused Aza with mercaptopurine up above, too. I think the allopurinol "trick" works with merc, not aza. Sorry about that. Could be both? I always get these non-ASA, non-biological drugs confused.

 

[2thFairy]

Diagnosed with UC at 41 after about 18 years of misdiagnosis.

 

[Emily]

My first flare started literally on the day of my seventh birthday, at my birthday party
I was diagnosed soon after at age 7. There's such a range!

 

[CrohnsChicago]

Diagnosed this year at 28 but had symptoms/manifestations for a few years prior.

 

[FullM3lt]

Symptoms at 9, diagnosed at 11

 

[motheroftwins]

Symptoms started when I was 23, diagnosed when I was 40.

 

[KayleighMeek]

I was diagnosed at 18 but ever since I was a child I had stomach issues, having severe constipation as a child and being monitored for my weight and height as I was under by a lot. So I think I have always had it but as awareness had increased I think the dr's started to pay more attention leading to my diagnosis many years after the first symptoms. X

 

[gillmc]

Has anyone had the weight loss to go with their Crohns dx? I have never lost any weight (unfortunately as I could do with losing a stone or two!) That's 16 lb for those of you who don't use stones I don't mean to sound flippant for those of you who struggle with weight loss, but I have never had an issue with it......I did bring it up with my GI and he said it's not everyone who loses weight with Crohns dx

Interesting to know

Gill

 

[Dukeis]

I lost over 20 pounds in a little over a week years ago doing a raging flare. Nearly killed me because it threw all my electrolytes out of whack. Spent almost 2 weeks in the hospital with that one. That is no way a good weight loss system. :thumbdown:

 

[upsetmom]

Yep my daughter lost 6kg when she first got sick.
Now she's losing weight again. She not a big girl to start with so any weight loss is noticeable .

 

[Misty-Eyed]

9 but had stomach problems since I was 6

 

[muppet]

Prednisone use has made me heavier than I was before I think. I can never seem to lose weight.

 

[Latte]

38 only diagnosed two weeks ago

 

[Polaris]

I was diagnosed at 28, but had mild symptoms for about 2 years prior.

 

[2thFairy]

Bummer on the diagnosis, but welcome to the forum, Latte!

 

[Absentminded]

I was diagnosed when I was 23 but was misdiagnosed with IBS for five years before that.

 

[Calypso]

I had just turned 20 when I was diagnosed, although my problems started when i was 14/15 - I am 27 now.

 

[Sailorluna]

I started having issues when was around 19. Went through a variety of explanations. Was finally diagnosed with crohns on the operating table when I was 36.

 

[enumeras]

I was dxed at 14 but was suffering from it since I was 12.

 

[gillmc]

How do I start a new thread?

 

[upsetmom]

Click on crohns disease forum at the top of the page.
Click where you want to start a new thread...like general discussion, your story...etc
Then at the top left side you'll see a blue box that says new thread..click on that and your ready to go..

 

[Kip1]

Diagnosed at 40 but had symptoms for years. Mum was 17 when she was diagnosed.

 

[xSophiexx]

wow what a range of ages! i was 21, 22 now
strangely enough my nan was diagnosed the year before at 70!
just goes to show that it can be any age. poor us

 

[gillmc]

wow what a range of ages! i was 21, 22 now
strangely enough my nan was diagnosed the year before at 70!
just goes to show that it can be any age. poor us

Wow 70!!! :ywow: Yeah I always thought Crohns was diagnosed in childhood, just shows how wrong ya can be eh?

Like you Sophie I couldn't tolerate Azathioprine either, I was on them for about 5 weeks and had bloods taken every week. My liver work came back at over 400 (whatever that means) my GP said it should have been 14!! I had a strange pain in my liver/pancreas area which felt like a huge ball stuck under my ribs, even when I was walking it felt like my liver was massive and bouncing about!! So I was told to stop taking them ASAP.

Im currently on no meds but having a real hard time with my symptoms, pain in the gut and diarrhea :frown: waiting for a barium so hopefully will get started on something else soon.

Oh on another note........does anyone have any remedies for 'sore bum' syndrome when you've been on the loo a dozen times? Something that will ease the sting?

Gill

Hugs

 

[2thFairy]

Calmoseptine is wonderful for sore bum syndrome, otherwise known as butt burn.

 

[exit4]

I agree - Calmoseptine is my life - rather - my butt saver!

 

[gillmc]

lmao.....you guys are great thanks, a huge jar of Calmoseptine with my name on it beckons tomorrow!!

Gill

 

[cleuger]

Diagnosed with UC at 41 after about 18 years of misdiagnosis.

This sounds like me. I've gone about 20 years being told I had IBS and now at age 48 I'm told I have Crohn's Imagine that. My symptoms had progressively gotten worse over the last 5 years.

 

[muppet]

Aza inflamed my liver and gave me pancreatitis. When I went to the ER they assumed I was a habitual drunk and left me in a room 12 hours to dry out. Delirious with fever and impacted from dehydration. They laughed at my complaints and told me to sober up. I was half mad with the fever and the late hour so I guess I looked the part.

 

[2thFairy]

GEEEEZE LOUISE!! No way! How horrible.

Aza gave me pancreatitis also, but luckily my GI already knew I didn't drink. The GI I went to before surgery just for a second opinion, however, was persistent in her line of thinking that alcohol had something to do with the issue.

 

[acheallova]

Diagnosed officially at 37 in May, but mis- diagnosed with ibs finally at 17, had symptoms since 5. ( Doc thinks I've been struggling with crohns from pathology, scopes, documented symptoms and test ever since i was 5) ..ugh

 

[Calypso]

Aza inflamed my liver and gave me pancreatitis. When I went to the ER they assumed I was a habitual drunk and left me in a room 12 hours to dry out. Delirious with fever and impacted from dehydration. They laughed at my complaints and told me to sober up. I was half mad with the fever and the late hour so I guess I looked the part.

What is Aza? That is a horrible story, so sorry they treated you that way.

 

[Latte]

Although I was only diagnosed three weeks ago at 38 we think I have probably had symptoms etc since I was 8 or earlier. I gave up meat and poultry at 16 in 1990 due to the horrendous effect it had on my body so another late diagnosis but I never pushed or asked for one as I just thought I had a delicate stomach and it was only after my symptoms and pain got worse and the known endometriosis was ruled out that for the first time in my life I was referred to a gastro specialist and lo and behold I have Crohns

 

[2thFairy]

What is Aza? That is a horrible story, so sorry they treated you that way.

Azathioprine or Imuran.

 

[xSophiexx]

I don't know what Aza has done to me other than it made why white blood cells platelets and red blood cells dangerously low (may need blood transfusion) and made me sick as a dog! doc said my TPMT levels suggested i would be able to tolerate it andthis happening was a 1in300 chance - must be special!!
Gillmc Sudocrem works a charm ;-)
take care
x

 

[IAmTheWalrus]

I was 20, for a couple of years prior, every now and again I'd pass blood and to say I was terrified was an understatement, the first thought is bowel cancer, I remember going to see my GP after putting it off and the wait was excruciating, I mentioned to him that every now and again I pass blood and I was scared, etc. He had a look at my back passage and said I had a big oul internal Hemorrhoid and breathed the biggest sigh of relief.

Fast forward a few weeks later, around this time 4 years ago and I went back to my GP, complaining of diarrhoea, he put down to my diet, which wasn't particularly great and sent me off, then, after 4 weeks of constant pooping, like 7-8 times a day, I went back to him and he kinda gasped when he looked at me (extreme weight loss), I told him had constant D, my joints were painful, I literally couldn't move my legs without agony, my appetite was gone, even the smell of food was enough to make me sick, and this supposed pile up my bum is like a golf ball! (Was a perianal abscess).

He sent me for a referral but it was too much, even my mum started crying saying how she's scared something serious is going on, which in turn made me tremor in fear, all I could think about was cancer .... so I went to the A & E, got checked out and almost immediately, with all the symptoms I had, they suspected IBD ... and tbh, it was a huge sigh of relief.

So after losing 36lbs in a month and a half, I got treatment and surgery for my abscess, spent two weeks in hospital, and I left with a new mental fortitude, if there is one positive of this ailment, it's that it will toughen you up, mentally, I know it did me.

Whoa, sorry for the sermon, went off on a tangent there.

 

[enumeras]

I don't know what Aza has done to me other than it made why white blood cells platelets and red blood cells dangerously low (may need blood transfusion) and made me sick as a dog! doc said my TPMT levels suggested i would be able to tolerate it andthis happening was a 1in300 chance - must be special!!
Gillmc Sudocrem works a charm ;-)
take care
x

lol we're part of the same club. Drs are always astounded by all the extremely rare side effects I get from drugs. When I tell them that my RBC's sank because of Imuran, all I get is "you're the first in my career to experience that" and it's like winning the lottery from hell, lol. But my dosage was increased prior to the existence TPMT tests. Sorry to hear you had to go through that.

 

[xSophiexx]

enumeras we must just be special! hope your doing better now im awaiting blood test results to see if its come back up again! fingers crossed

 

[acheallova]

Good luck you two!! Toes crossed too. hugs-

 

[SarahChoueiry]

I was diagnosed at 14 but suffered from symptoms since 12, took them a couple years to figure it out

 

[LondonSnow]

20, but I was 19 when my symptoms got REALLY bad. Besides that, I have no idea how long I've had Crohn's for. I've always gotten ill really easily, and I've always been skeleton-thin despite eating more than several of the people I know combined. Who knows what my calorie count is. Right before and in my early teens, I'd get mouth ulcers by the bucketloads. A week where I didn't have an ulcer was a miracle between 12-13 years. I was very prone to what I thought were stomach bugs, I'd get the runs and throw up about once a year, but those could well have been Crohn's also.

So yeah. Diagnosed at 20, who knows when the onset of my disease was. All I know is I was very very chubby for a five year old.

 

[MendyVarner]

I was diagnosed at 32 but had problems for a few years prior...starting at around age 30

 

[debbie261]

I was 23 when I was Dx.I was sick for a year before Dx and lost a massive amount of weight in a small amount of time.

 

[scl]

Diagnosed at 53 after going to the hospital with severe abdominal pain which I had never experienced before. Had an obstruction and was diagnosed with Crohn's. Had chronic diarrhea but no other symptoms for 30 years. No pain, no fatigue.

 

[Mary:)]

40