- Joined
- May 29, 2017
- Messages
- 6
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?
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?
