Crohn's Disease Forum » Your Story » My adventures with Crohn's (and other things) with a high pain tolerance

02-20-2014, 01:25 AM   #1
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Location: Scio, Oregon

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My adventures with Crohn's (and other things) with a high pain tolerance

Hello all, just stumbled upon this forum, figured I'd tell my story!

Some background: Before about a year and a half ago, I hadn't ever really had anything interesting happen medically (never been to the ER, etc).

My adventures begin in the summer of 2012. In late June, I started getting a mild cramp in my lower right abdomen. On the 1-10 scale the hospital makes me use, I'd put it at a 1 or 2, barely noticable. Didn't think too much of it, but considering the effected area I kept track of it.

A few weeks later, the cramp is still there, but I get nausea, lack of appetite, and a low fever (99F-101F depending on time of day) out of nowhere, so I decided to go to the doctor in case it was appendicitis. Due to a combination of procrastination and my lack of medical activity, my doctor from when I was a kid had dropped me, so I went in to urgent care. They took one look at me at the reception desk, and said something to the effect of "You should go to the ER with the way you look and where your cramp is."

I go to the Salem ER, they take a blood sample, and poke me a ton where the cramp was (with no reaction from me). Blood work says white blood cell count is slightly elevated, ER doctor says it's stomach flu, refers me to a general physician if the symptoms go away.

Another few days pass, and I'm starting to feel pretty sick. Still no pain, but just not feeling well. Also, my right leg doesn't want to work right. So I get set up with the physician, he takes a look at me, and thinks it's an ulcer, so he sends me in for an ultrasound. Also pokes me a bunch where the cramp is, still no real pain.

Ultrasound technician checks the area doesn't see anything. Since I have the cramps in my abdomen, he checks there too. Doesn't see anything there either, but he asked if I had had my appendix removed. I asked why, and he said because he couldn't find my appendix. After that, I get send home.

Later that night, dinner was so good that I ignored my suppressed appetite. 3:45am that night: Pain! No longer just a cramp, now I have a decent amount of pain in my lower-right abdomen. Maybe a 6-7 on the pain scale.

To the ER we go! A different ER this time, Stayton, since the previous ER was further away. By the time we get there, my pain is gone again. ER doctor is concerned, pokes me where my cramp was. No pain. After a bit more poking and prodding, he decides he's not going to let me go until he knows what's going on, so he orders a CT scan.

Results from the CT scan come back: Appendix is ruptured, infection all over the place. Surgeon gets called in, takes a look at the results, and starts fuming. She calls up Salem ER, and rakes them over the coals. Apparently not only was my appendix ruptured, but it had been ruptured for long enough that scar tissue was growing back. She thinks that it ruptured when I first got the fever and went into the previous ER, and they just let me walk out.

The infection is bad enough she doesn't want to perform surgery in case it spreads the infection further, so off to Salem Hospital for a procedure to drain the infection out of the abscess, plus a dose of antibiotics. Then back to Stayton for a few nights stay with a drain tube.

About a week later, I get the drain tube out, and the surgeon tells me if I get even a low (100.5F) fever, she wants me back in the ER ASAP in case of reinfection. Everything's going ok until the last day of antibiotics... take my temperature, 101F.

Back to the Stayton ER again, ER is under orders from surgeon to take a CT scan no questions asked. CT results come in... I have appendicitis (again). Abscesses all over, infection, etc.

Nurses start getting me ready for surgery. Hook up a yellow IV bag (apparently vitamins and the like, they called it a banana bag/rally bag). They start the IV and *BAM* I see white stars everywhere, and all of my muscles sieze up. Can't see, can't breathe. They stop the IV, and after about 30 seconds I'm able to control my muscles enough to draw a breath. Apparently my body went in to shock, nurses and ER doctor say they've never seen that from a vitamin bag before. They hook me up to a potassium bag and everything's ok, so off to surgery I go.

After the surgery, the surgeon says she was able to get everything cleaned up inside me, and that there was a possibility that I might have something called "Crohn's Disease", which didn't mean a thing to me.

Fast forward to Feb 2013. I start getting this stabbing/knife turning feeling in my gut, for maybe 10 seconds at a time, 4 times a day. Pain level 4 or so on the 1-10 scale during the duration. Slightly suppressed appetite. After a week of it not getting better, I go into the doctor (previous adventures made me decide to get set up with a PCP). He's not sure what's going on, orders some blood work. That night: Good dinner again (same one as appendicitis adventures, cream of mushroom soup + noodles), I ignore suppressed appetite. A few hours later: Pain! Worst pain I've ever felt, I just about pass out.

To the ER again! As usual, pain is gone by the time I get to the ER. Get poked and prodded a bunch, eventually ER doctor decides to run a CT scan. Results come back: Bowel obstruction. This isn't considered immediately life threatening, so they send me home, but wanted me admitted to hosptial first thing next day.

Next day: Surgeon comes in (same one as appendicitus adventures), looks at the CT scan, says she's pretty certain it's Crohn's now. Does a resection, sends the removed chunk in for testing, and yup, it's Crohn's. While healing up in the hospital, I get yelled at some for walking too much, apparently I started bleeding from walking too much. Surgeon says I have an extremely high tolerance for pain. Warns me that it might make it difficult for doctors to properly diagnose things, and that I should warn any doctor about it. Puts me on Asacol to start out with for the Crohn's.

A few months after surgery, I'm having cramps in my lower right abdomen again, so surgeon refers me to a GI in Salem since Crohn's isn't her specialty. He decides to do a colonoscopy, after doing a CT scan to make sure that I don't have another bowel obstruction going on. Fortunately, everything looks ok in both CT and colonoscopy, hooray! Sets me up for a scheduled visit Feb 2014.

Onwards to Christmas 2013: I work at a school working on computers, and I get Christmas break off along with the students. I end up playing video games sitting on a hard wooden chair for week and a half, and I notice a minor pain (1-2 on pain scale) around my tailbone. I assume that I bruised my tailbone.

The pain doesn't go away after about a week, so I call up the my PCP, he says keep an eye on it, come in if it gets worse. Well, about a week or two later, it gets worse. Lots of swelling, and it's started leaking fluid. I go in, he says it's an abscess plus some cellulitis. Puts me on antibiotics for 10 days. I go back in for a checkup, he pokes me with a scalpel to drain things, and I go on my merry way.

Now it's Feb 2014, and I have my scheduled visit with my GI. We chat, I mention my thing with the abscess. He immediately goes on the alert, and asks if my PCP knows I have Crohn's. I say "Yes, why?" and he says that it's because in Crohn's, it's really common for an abscess to be (or become) a fistula, so he immediately orders a CT scan. Got the results in today, and yup, it's a fistula. My GI gave me a nickname, "Captain Stoic", due to my pain tolerance.

Well, memory dump went on for a bit longer than I expected.

TLDR; Appendicitis twice, bowel obstruction, diagnosed with Crohn's, and got a fistula all within a year and a half, and mostly without pain.
02-20-2014, 09:15 AM   #2
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Kero's Avatar
Join Date: Dec 2013
Location: Edmonton, Alberta

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Wow! So glad you have found us Great bunch of peeps on here, lots of advice and info Don't be afraid to ask questions, someone who has gone through it will usually chime in and try to help.
02-20-2014, 11:18 AM   #3
KFleshman's Avatar
Join Date: Feb 2014
Location: Scio, Oregon

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Thanks for the welcome! Fortunately, somebody else that I work with has Crohn's too, and couple of others have relatives with Crohn's, so people have been pretty understanding at work. Having that many people at work being familiar with Crohn's seems kind of amazing to me, considering there's only approximately 80 employees total.
02-20-2014, 12:41 PM   #4
Senior Member
pink&green's Avatar
Hello Captain Stoic and you definitely came to the right place lot's of support and advice on here. Your story sounds similar to my hubby his PCP thought he had a stomach virus as well a few months later he's in ER with an ruptured appendix. Make sure you visit the Fistulas, Fissures and Abscesses Support Group.
Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

02-21-2014, 11:24 PM   #5
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Join Date: Feb 2014
Location: South bend, Indiana

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Hey Captain Stoic! I also have a very high pain tolerance and it's hasnt served me very well through this either. It's so difficult to communicate "something's wrong" and still be honest on that pain scale!

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