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Crohn's Disease Forum » Your Story » Middle-Age Onset CD


05-29-2017, 09:34 AM   #1
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Middle-Age Onset CD

Hey, folks! New Member. Hopefully, I'm doing this right. First off, I'm a 45-year old Caucasian male.

Anyway, my story might be a bit different from others, I'm not sure. I don't know many people with Crohn's, but the ones I do know have battled it their entire lives. My (as-of-this-writing preliminary) diagnosis of CD doesn't fit that pattern, but I know that can happen. Background:

I've always had rock-solid guts. I've never had food poisoning, rarely got nausea, only thing I ever vomited was (too much) whiskey once (my bad!). Fast forward to 2008 when I started experiencing a lot of back pain. I was diagnosed with a herniated L4/L5 (I know it's not really related, but stay with me!). Had the classic symptoms: weakness in leg, shooting pains down to shin, etc. Some drugs and exercise and that kind of lessened. Very little issues after that.

Fast forward to 2015 or so. Started encountering some strange pains in my lower abdomen, that went through to my back. "Strange" in that I was having a hard time localizing them; there was nowhere I could press that made it worse or better. I'd notice it when I was out hiking... almost a feeling of tugging/pulling and cramping. BM's started becoming a bit erratic... I rarely got diarrhea, but constipation popped up from time to time.

I didn't connect those latter symptoms to anything at the time. Since I couldn't tell if the pain was radiating from abdomen to back or vice versa, I assumed it was the latter and that my L4/5 issue was just flaring up again... albeit without the sciatica. Doc assumed that too and I went back on Gabapentin... months later things weren't better, but actually getting a bit worse. Instead of "mystery cramps" once a week, they were getting to be every few days. I couldn't just walk them off anymore... had to lie down, and a heating pad helped.

I had new MRI's of my back... inquired about kidney stones (they're in both sides of my family) but was told I'd KNOW if it was that... basically chased the issue around for about a year before I started having realllly bad episodes of pain and started suspecting something in my GI tract: sleeping poorly, more pain lying on left side, pain on rising in the morning lessened somewhat by eating (usually yogurt; I've turned into a Greek yogurt monster) but still a bit "random" after that during the day. A few times I left work to go to the ER due to the severity of the pain... but it subsided after a few hours. After X-Rays (which don't show much), the ER docs suspected either gall-bladder or duodenal ulcers and suggested I check into those with my GP.

Ran those new symptoms past her and she prescribed a PPI... assuming I had too much acid that was spilling into my duodenum and causing an ulcer there. Six months later... no improvement, and things are actually continuing to get worse. Another ER trip or two that were ultimately fruitless, but I eventually got in to see a GE specialist (Yay, socialized medicine!). He listened to my symptoms: unlocalized abdominal pain, lots of burping and gas, stop-go BMs (fluctuating between the extremes in consistency) and said it looked like IBS.

I'll admit my heart kind of sank a bit... because I know IBS is a bit fuzzy to define, and even fuzzier to treat. Thankfully he booked my for my first-ever colonoscopy: I was really happy someone was finally physically LOOKING with their own eyes to see what was going on. I was tired of not having a clue WHAT was going on.

My scope was booked for three weeks from then. A week before that appointment I woke up in the middle of the night (midnight) with cramps that were a bit worse than ever before. Sleeping was definitely out of the question. I went downstairs and laid on the couch... no sense tossing and turning and keeping my wife up too. Cramps got gradually worse; I could feel "fluid" sloshing back and forth in my abdomen when I moved. Not in the cute "haha I drank too much water" way, either. At 5am the cramps basically exploded into incredible pain the likes of which I have never experienced before in my life along with nausea.

I began violently vomiting what looked like mucus and bile (clear and yellow) with full-body sweats that kept me on the floor for an hour. My wife was up by that time (6am) and I told her to take me to the ER. As she got ready, the pain crept up even more (I couldn't imagine how they could) and I was gasping and hanging onto the bathroom doorframe while lying on my back. I told her forget the car and call me an ambulance.

*insert keystone cops-esque mini-adventure with 911 and ambulances*

Paramedics arrived and couldn't get my blood pressure; I was writhing too much. And I'm someone who prides themselves on their pain tolerance... At the hospital, they did the usual (took blood, temp, blood pressure, etc) and at last gave me some fentanyl/diluadid which killed the pain. They took another X-ray, but by that point I was feeling a lot better (noon-ish). I ate some applesauce and arrowroot and they released me without me learning anything new, other than HOLY CRAP THAT BETTER NOT HAPPEN AGAIN!?!?

I nervously waited for my colonoscopy date, and went through the *lovely* prep which I'm sure you all get to experience regularly. First dose went fine (though gross). Next morning dose I nearly had an attack similar to the ambulance-scenario... I could feel it "sticking" and sloshing and the cramps and nausea got fairly bad... but then passed within an hour.

The actual scope was a breeze. I've heard horror stories but I was out like a light and don't remember a thing. The GE doc met me afterwards and said my colon looked fine but they found several "large, deep ulcers" in my ileum, the extent of how far they could go. "That's Crohn's" he said. It wasn't a diagnosis I was expecting; I'd read about CD and the usual markers like 1) early onset 2) bloody diarrhea weren't thing I was encountering... I always felt I had ulcers, but assumed they were farther up. He'd taken samples of the tissue and sent it off to be checked (for what, I'm not 100% sure... probably to see if anything is pre-cancerous).

In the subsequent three weeks (until today) I've been wary of large, greasy meals... something I consider a contributor to my first attack. Maybe that's anecdotal... but I haven't eaten pizza in a month, and that's a big deal for me. I eat in smaller, more frequent "snacks" and my symptoms are back down to "normal", which means daily but low-grade cramps that come and go. I have experienced a noticeable amount of fatigue, though; I can sleep more than I ever have and am wiped by 9pm. I've also lost about 10lbs in the past few months.

I'm booked for a barium CT in a few days, maybe I'll learn more. I'll update this thread when I do. Right now, aside from the daily cramping; my guts are still kind of "stop-and-go"... not much action for a few days, then everything vacates. Eat anything I want... then... something doesn't agree with me and rockets through me. Very unpredictable. I half expect them to find more ulcers throughout my small intestine... I suspect a stricture was probably the cause of my two particularly traumatic episodes.

Anyone else have a later-in-life CD diagnosis? Are your symptoms any different than the textbook cases?
05-29-2017, 12:29 PM   #2
DougUte
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Hello Boos. I am a 53 year old caucasian male who was diagnosed in 2010. I was 47 when diagnosed. I had been misdiagnosed with IBS for 6 years before my Crohn's diagnosis. I have not had bloody stools except for an episode in my 20's that never got diagnosed. I definitely had a crohn's attack when I was diagnosed with IBS. I wouldn't recommend the GI I was going to at the time to anybody! The colonoscopy he performed found nothing, but for some reason he was unable to get it into the terminal ileum. I did not know this until 6 years later when I had another massive attack and the ER doc, after doing a CT scan, told me it was Crohn's Disease. I then went to my current GI and he, after doing a lot of tests, confirmed it was Crohn's. I had 3.5 ft of intestines removed. That was the best decision, having surgery to remove the very damaged terminal ileum and 6 inches of colon.
05-29-2017, 12:35 PM   #3
ronroush7
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Welcome. I am sorry for all you have been through. There is a support group in here for those diagnosed in their fifties. Looking forward to hearing more from you.
05-29-2017, 01:50 PM   #4
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I was 47 when diagnosed. I had been misdiagnosed with IBS for 6 years before my Crohn's diagnosis. I have not had bloody stools except for an episode in my 20's that never got diagnosed. I definitely had a crohn's attack when I was diagnosed with IBS.
Is the pattern of onset any different when you get it later? I know people who have had CD their whole life and by the time they are in their 30's they've had multiple resections and removals. I've read that those kinds of operations are almost inevitable with CD, but is the schedule delayed for late-onset CD? Or is it just compressed? I'm hoping the former...
DougUte said:
I wouldn't recommend the GI I was going to at the time to anybody! The colonoscopy he performed found nothing, but for some reason he was unable to get it into the terminal ileum.
I was initially not terribly impressed with the Gastroenterologist I got... he seemed "locked onto" IBS and "don't eat cheap, processed cheese" etc. only by poking me in the belly a few times. My fear was that during the colonoscopy they would find absolutely NOTHING and that I'd think it was all stress or something... It's messed up but I definitely had a feeling of vindication when he showed me the pictures of the ulcers he found.
DougUte said:
I did not know this until 6 years later when I had another massive attack and the ER doc, after doing a CT scan, told me it was Crohn's Disease. I then went to my current GI and he, after doing a lot of tests, confirmed it was Crohn's. I had 3.5 ft of intestines removed. That was the best decision, having surgery to remove the very damaged terminal ileum and 6 inches of colon.
I'm hoping my barium CT (in 2 days) can shed some light on the areas from stomach to ileum... as I stated before I'm pretty sure I've got other issues there as well. I'm looking forward to vindication #2. :P

If I do have a stricture, I'm not looking forward to managing that and/or having it removed, but if it helps me avoid midnight ER visits, I'm for it.

Thanks for sharing!
05-29-2017, 02:07 PM   #5
Jabee
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I'm a 56 year old female and didn't get crohn's until I was 43. Like you, I never had any problems with my guts except for chronic constipation, which didn't bother me. I was diagnosed with celiac disease after the birth of my third child, and crohn's a few years later. For what it's worth, my ulcers have been located only in the small bowel and seem to respond fairly well to the milder medications (prednisone and Entocort, although 6MP gave me pancreatitis). I've had no bloody diarrhea, just alternating constipation and rapid emptying like you, although I have been hospitalized for two obstructions. The barium CT should give your GI some good imaging of your small bowel; a capsule endoscopy might help as well.
05-30-2017, 07:27 AM   #6
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ronroush7 said:
Welcome. I am sorry for all you have been through. There is a support group in here for those diagnosed in their fifties. Looking forward to hearing more from you.
Thanks! From what I've read so far, most have it MUCH worse than I do, and have also suffered a lot longer.
I'm a 56 year old female and didn't get crohn's until I was 43. Like you, I never had any problems with my guts except for chronic constipation, which didn't bother me. I was diagnosed with celiac disease after the birth of my third child, and crohn's a few years later. For what it's worth, my ulcers have been located only in the small bowel and seem to respond fairly well to the milder medications (prednisone and Entocort, although 6MP gave me pancreatitis). I've had no bloody diarrhea, just alternating constipation and rapid emptying like you, although I have been hospitalized for two obstructions. The barium CT should give your GI some good imaging of your small bowel; a capsule endoscopy might help as well.
That sounds pretty similar to where I'm at. Symptoms could be a LOT worse, and I'm thankful they're not. Curious about the future, that's for sure.
05-30-2017, 05:15 PM   #7
Scipio
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Is the pattern of onset any different when you get it later? I know people who have had CD their whole life and by the time they are in their 30's they've had multiple resections and removals. I've read that those kinds of operations are almost inevitable with CD, but is the schedule delayed for late-onset CD? Or is it just compressed? I'm hoping the former...
One major rule of Crohn's is that everybody's case is different. There are no two exactly the same. However, there are trends that can be identified. And the trend in older-onset patients is for milder disease with slower progression and a lower rate of surgery. It tends to be the kids and young adults that get the raging, aggressive Crohn's. So there are no guarantees, but with a little luck you might have one of the milder cases and avoid some of the worst aspects of this disease.
05-31-2017, 12:26 PM   #8
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Update:

This morning was the barium/iodine CT scan the ER doc sent me in for. Given that I hadn't had my first colonoscopy yet (I was in the ER in April), the focus of the CT was just gall bladder, liver, pancreas, etc... not really small intestine.

That ER doc just called me (wow, 2 hour turnaround!) and said I've got kidney stones in both kidneys. LOL, when it rains it pours! So I guess when I was wondering if it was back pain coming through to abdomen, or abdomen pain going through to back... the answer was "both". :P

Now I've got to get all my Dr.'s information sync'd up...
05-31-2017, 12:33 PM   #9
ronroush7
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Sending support

05-31-2017, 02:15 PM   #10
DEmberton
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I hope 45 isn't "later in life" as I'm 45 and I still have one or two things I'd like to do.

It started for me at 23, and I had a similar attack you describe that landed me in hopsital for a night; "suspected appendicites" they said. After that some symptoms continues so I was checked out, but all they could say was IBS. It took until I was nearly 43 before they properly diagnosed me.

Good luck with it.
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08-08-2017, 01:02 PM   #11
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Update:

Five weeks ago I had what I THINK was my first real post-diagnosis flare... but I'm new to this, so I'm not sure... You tell me? I had cramping and utterly HORRIBLE diarrhea for about 5 days before I dragged myself to the ER. It got to the point where I'd drink a cup of water and it would "fall out" within 10 minutes. It took 4 litres of IV solution to rehydrate me. I was aching all over and having intermittent chills/fevers and headache.

ER doc said it might be an infection... a crohns complication made worse by my inflamed intestines. They sent me off with 14 days of ciprofloxacin and metronidazole (1000mg/day each). And thus begin the most nauseating 2 weeks I've ever seen, lol. Those things are NASTY. I think my insides basically got sterilized... Horrible effect on taste/smell, though. Ugh. Stomach cramping and runs have basically cleared up, though I'm not quite 100% yet. Lost 15 lbs all through that, and most is staying off. Appetite definitely reduced, which isn't horrible. The antibiotics might have nuked a sinus infection I had, though! (bright side)

Finally getting the stones looked at too... met with a Urologist a few weeks ago and he scheduled me for lithotripsy (blasting) in a few days... but gave me some slow release morphine to get me to there... of course had a fun stone attack a week after seeing him and the morphine did almost nothing. In the ER they took more X-rays and confirmed the "stones are on the march". Upgraded my pain meds to Oxy (which I only take when desperate) and they do work a lot better.

So now I'm with periodic (but managable, with Pentasa, it seems) lower-right gut pain and intermittent left/right back/groin pain. Hopefully the latter will mostly get fixed on Friday with the blasting.

Fingers crossed for getting one secondary issue resolved! Anyone else wrestling with a side of stones with their Crohns?
10-11-2017, 07:30 AM   #12
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Update (Hey, this is turning into a health diary...):

Lower GI stuff has settled down quite a bit, and the stones are steadily being whittled away via lithotripsy. However over the past few months my night time middle GI pain has gotten worse... I'll wake up anywhere between midnight and 4am with terrible cramping... like hunger pangs but much more severe. Lying on my left or right side makes it worse (right is slightly better than left) but it's impossible to sleep. Getting up and eating a bowl of cereal often helps quite a bit, but it's difficult getting up to eat in the middle of the night and then try to get back to rest afterwards. Meeting with my GE on Monday, I really hope he decides to take a look at my stomach/duodenum. I'm going crazy due to lack of sleep!
10-11-2017, 08:02 AM   #13
ronroush7
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Best to you
10-11-2017, 02:27 PM   #14
Lizzie
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I was diagnosed with Crohns at 60, though I think I've had it since my late 50s. My dad was diagnosed at a similar age to mine. He had pretty aggressive disease and surgery, despite this supposedly being less common in older people. However, he was a heavy drinker and I don't think this helped him control his illness, also he didn't stick to his medication regime.
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