- Location
- Augsburg, Germany
Hi All,
My name is Jeff. I am 39 years old and was diagnosed with Crohn's in 1997 when I was stationed at Ft. Hood, Tx. in the U.S. Army. Being diagnosed with Crohn's in the Army is not just bad because you are being diagnosed with an incurable disease, it is also bad because it is a career killer. I had been in the Army for 6 years and was just about to be promoted to sergeant when they medically retired me. While they were diagnosing me in the Army, I had several severe flare-ups 3 colonoscopies and 1 exploratory surgery where they went in to make sure I didn't have a blockage. They removed my appendix during that surgery and only found a large portion of my small bowel to be inflamed. I was taking 20 or 30 capsules a day of either Pentasa or Asacol as well as Vicodin for pain.
It was a rather large shock to find out that I was sick and becoming a "disabled veteran" all together within a few months. I met my wife while I was stationed in Germany a year or so earlier. She was in a kind of shock. First she marries an American (she is German), then we moved to Central Texas 6 months later, and then a year and a half later all of this happens with my health. To top it off, the Army moved us back to where my family was in Oregon and she had to figure them out. She stuck with me though
The V.A. Hospital in Portland, Or. was where I started getting treated and for the most part, the care I received was first rate. For the first few months, I had to go in and see my GI doctor every few weeks and then wait for an hour or two in the pharmacy to get my meds. That waiting sucked but it also ended as soon as I was able to get signed up to have my prescriptions delivered to me. My condition stayed bad until I had a bowel resection done in 2001 and they took out my terminal ileum along with 20cm of my small intestine. I had started working in IT when I left the Army in 1998 and my employer was decent about not stressing me about missing work or anything like that. During my resection, they gave me an extra 4 weeks of paid vacation and then let me come back for half days for a while until I healed enough for full time. That surgery was life altering and I really didn't know how to be me afterwards. All of a sudden, I was without the constant, dull to intense pain in my gut that I had been living with for years. I could think clearly again because the white noise of the pain was gone. The only negative thing about that surgery was the morphine that they had given me afterwards. I had withdrawals for a few weeks and didn't know that they were from the morphine until I saw my GI doctor a month later and told her what was going on. It took me a few months to get used to life again and for my wife to get used to me doing things and being happy again.
After my body recovered from the resection surgery, I was in remission and it was awesome! Life went on and they had me on azathioprine a low dosage of Prednisone.
A few weeks after I had gone home, my bowel movements started getting looser and looser. I started running to the bathroom 3-5 times a day with no pain or anything. My doctor told me it was just my bowel getting used to things.
In 2004, we decided to move back to Germany so my wife could be closer to her ancient parents. The medical system in Germany is on par with the U.S. so I wasn't worried about health care. In 2005 I had my first flare-up since the resection and it scared the hell out of me. The loose stools had not gone away after the resection and I had grudgingly accepted them as my new normal. It was horrible to think that the pain I had from 1997 through 2001 was coming back. My GI doctor put me on a higher dosage of Prednisone and took me off of azathioprine (it never seemed to help at all anyway). My flare up ended after a week or so and they tapered me off of the Prednisone. That is how it continued until the middle of 2007. I would have a small flare-up, they would give me steroids, and then taper me off of them. The flare-ups had taken a toll on me and my appetite was non-existent. When I went to my GI doctor and told him I felt week and that I was worried about my weight (I was down from 180 to 155 Lbs and looked quite skinny). The doctor told me that I was still within he healthy range and sent me home with a box of Ensure plus. One night, the pain just kept getting worse and worse until I made my mother-in-law drive me to the ER. They told me that my electrolytes were dangerously low, I was way to skinny, and I needed to be checked into the hospital until my condition improved considerably. They also started me on some kind of pain medicine in an IV that made everything fantastic. I went in for an MRI that night and they found out that my pain was most likely being caused by a constriction near where my small bowel had been resected. The next day when my doctor came in, he brought a new IV bag and hooked it up. He let me know that it was going to be a while before I would be able to go home. When he left, I noticed that the IV bag had Prednisone 100mg written on it and about panicked. My doctors had only ever given me 30 or 40mg before and that had already given me moon face and mood swings; what was this going to do to me? As it turns out, it did it all to me. As they tapered me off of the Prednisone 10mg after the first week and then 10mg every we days, I developed a disgusting case of steroid acne that took over my face, ears, neck, and most of my chest. I had mood swings, moon face, a pounding in my ears, trouble breathing, and blurred vision. If there were any others, I didn't notice them. After the first week, they stopped giving me any pain medicine that worked. The stuff they did give me only dulled the pain a bit and didn't last very long. In order to get pain medicine that worked, I had to first call the nurses and have them give me the crappy stuff, then wait 2-3 hours and then tell them that I was still in pain. Sometimes they would just try to give me more of the crappy stuff until I told them to send the on-call doctor in to see me because I wanted to be able to sleep through the night without pain. That worked for a while and luckily, the pain started going away. The soft food that they had been giving me to gain wait had been giving my gut a chance to recover.
Eventually, I got out of the hospital and back to my normal life. They kept me on Prednisone and my first couple of weeks back to work were accompanied by my steroid acne. Awesome that was. When I got down below 30mg, the acne went away. The next MRI in 2008 showed that I had skip lesions mainly in the area of my resection. In 2009, 2011, 2012 the skip lesions were still there and I was starting to have more and more flare-ups with blood in my stool, pain, and night sweats. My wife and I had been thinking about having a baby so I had been trying to stay away from Crohn's medicine that didn't have any chance of birth defects listed in any literature. Our daughter was born healthy and happy in 2011. My doctor started me on Humira in 2012 and started tapering me off of Prednisone. My old GI doctor that had ignored my skinniness was fired and my new doctors were much more competent.
I have been on 40mg Humira per week, Pantozol for heartburn, Novalgin for mild to moderate pain, and Tramal for moderate to heavy pain since then. Starting 2 weeks ago, I have been experiencing a bad flare-up. My doctor took some blood to see if my body is fighting against the Humira. If it isn't, she is going to move me to Remicade. If my body is fighting the Humira, I am going to be stuck with Methotrexate (MTX). I haven't ever taken MTX before and I am kind of worried about the side effects.
That's my story. Thanks for reading!
-Jeff
My name is Jeff. I am 39 years old and was diagnosed with Crohn's in 1997 when I was stationed at Ft. Hood, Tx. in the U.S. Army. Being diagnosed with Crohn's in the Army is not just bad because you are being diagnosed with an incurable disease, it is also bad because it is a career killer. I had been in the Army for 6 years and was just about to be promoted to sergeant when they medically retired me. While they were diagnosing me in the Army, I had several severe flare-ups 3 colonoscopies and 1 exploratory surgery where they went in to make sure I didn't have a blockage. They removed my appendix during that surgery and only found a large portion of my small bowel to be inflamed. I was taking 20 or 30 capsules a day of either Pentasa or Asacol as well as Vicodin for pain.
It was a rather large shock to find out that I was sick and becoming a "disabled veteran" all together within a few months. I met my wife while I was stationed in Germany a year or so earlier. She was in a kind of shock. First she marries an American (she is German), then we moved to Central Texas 6 months later, and then a year and a half later all of this happens with my health. To top it off, the Army moved us back to where my family was in Oregon and she had to figure them out. She stuck with me though
The V.A. Hospital in Portland, Or. was where I started getting treated and for the most part, the care I received was first rate. For the first few months, I had to go in and see my GI doctor every few weeks and then wait for an hour or two in the pharmacy to get my meds. That waiting sucked but it also ended as soon as I was able to get signed up to have my prescriptions delivered to me. My condition stayed bad until I had a bowel resection done in 2001 and they took out my terminal ileum along with 20cm of my small intestine. I had started working in IT when I left the Army in 1998 and my employer was decent about not stressing me about missing work or anything like that. During my resection, they gave me an extra 4 weeks of paid vacation and then let me come back for half days for a while until I healed enough for full time. That surgery was life altering and I really didn't know how to be me afterwards. All of a sudden, I was without the constant, dull to intense pain in my gut that I had been living with for years. I could think clearly again because the white noise of the pain was gone. The only negative thing about that surgery was the morphine that they had given me afterwards. I had withdrawals for a few weeks and didn't know that they were from the morphine until I saw my GI doctor a month later and told her what was going on. It took me a few months to get used to life again and for my wife to get used to me doing things and being happy again.
After my body recovered from the resection surgery, I was in remission and it was awesome! Life went on and they had me on azathioprine a low dosage of Prednisone.
A few weeks after I had gone home, my bowel movements started getting looser and looser. I started running to the bathroom 3-5 times a day with no pain or anything. My doctor told me it was just my bowel getting used to things.
In 2004, we decided to move back to Germany so my wife could be closer to her ancient parents. The medical system in Germany is on par with the U.S. so I wasn't worried about health care. In 2005 I had my first flare-up since the resection and it scared the hell out of me. The loose stools had not gone away after the resection and I had grudgingly accepted them as my new normal. It was horrible to think that the pain I had from 1997 through 2001 was coming back. My GI doctor put me on a higher dosage of Prednisone and took me off of azathioprine (it never seemed to help at all anyway). My flare up ended after a week or so and they tapered me off of the Prednisone. That is how it continued until the middle of 2007. I would have a small flare-up, they would give me steroids, and then taper me off of them. The flare-ups had taken a toll on me and my appetite was non-existent. When I went to my GI doctor and told him I felt week and that I was worried about my weight (I was down from 180 to 155 Lbs and looked quite skinny). The doctor told me that I was still within he healthy range and sent me home with a box of Ensure plus. One night, the pain just kept getting worse and worse until I made my mother-in-law drive me to the ER. They told me that my electrolytes were dangerously low, I was way to skinny, and I needed to be checked into the hospital until my condition improved considerably. They also started me on some kind of pain medicine in an IV that made everything fantastic. I went in for an MRI that night and they found out that my pain was most likely being caused by a constriction near where my small bowel had been resected. The next day when my doctor came in, he brought a new IV bag and hooked it up. He let me know that it was going to be a while before I would be able to go home. When he left, I noticed that the IV bag had Prednisone 100mg written on it and about panicked. My doctors had only ever given me 30 or 40mg before and that had already given me moon face and mood swings; what was this going to do to me? As it turns out, it did it all to me. As they tapered me off of the Prednisone 10mg after the first week and then 10mg every we days, I developed a disgusting case of steroid acne that took over my face, ears, neck, and most of my chest. I had mood swings, moon face, a pounding in my ears, trouble breathing, and blurred vision. If there were any others, I didn't notice them. After the first week, they stopped giving me any pain medicine that worked. The stuff they did give me only dulled the pain a bit and didn't last very long. In order to get pain medicine that worked, I had to first call the nurses and have them give me the crappy stuff, then wait 2-3 hours and then tell them that I was still in pain. Sometimes they would just try to give me more of the crappy stuff until I told them to send the on-call doctor in to see me because I wanted to be able to sleep through the night without pain. That worked for a while and luckily, the pain started going away. The soft food that they had been giving me to gain wait had been giving my gut a chance to recover.
Eventually, I got out of the hospital and back to my normal life. They kept me on Prednisone and my first couple of weeks back to work were accompanied by my steroid acne. Awesome that was. When I got down below 30mg, the acne went away. The next MRI in 2008 showed that I had skip lesions mainly in the area of my resection. In 2009, 2011, 2012 the skip lesions were still there and I was starting to have more and more flare-ups with blood in my stool, pain, and night sweats. My wife and I had been thinking about having a baby so I had been trying to stay away from Crohn's medicine that didn't have any chance of birth defects listed in any literature. Our daughter was born healthy and happy in 2011. My doctor started me on Humira in 2012 and started tapering me off of Prednisone. My old GI doctor that had ignored my skinniness was fired and my new doctors were much more competent.
I have been on 40mg Humira per week, Pantozol for heartburn, Novalgin for mild to moderate pain, and Tramal for moderate to heavy pain since then. Starting 2 weeks ago, I have been experiencing a bad flare-up. My doctor took some blood to see if my body is fighting against the Humira. If it isn't, she is going to move me to Remicade. If my body is fighting the Humira, I am going to be stuck with Methotrexate (MTX). I haven't ever taken MTX before and I am kind of worried about the side effects.
That's my story. Thanks for reading!
-Jeff