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Crohn's Disease Forum » Your Story » Crohn's sucks. There I said it :)


07-07-2014, 04:51 PM   #1
Funkwecker
 
Join Date: Jul 2014
Location: Augsburg, Germany
Crohn's sucks. There I said it :)

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
07-09-2014, 12:13 AM   #2
araceli
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Join Date: Nov 2012
Location: El paso, Texas

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Hello and welcome to the forum. I hope you feel better soon.
We have no experience with Humira or MTX but a lot of members use that combination. Sending support your way.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
07-09-2014, 10:33 AM   #3
valleysangel92
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Join Date: Dec 2012
Location: United Kingdom

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Hello and welcome to the forum, you've certainly been on quite a journey with this!

I can totally understand the worry with side effects. I had steroid IVs when I was in hospital recently and you do get all sorts of effects, but they kicked my crohns flare and stopped it developing into anything worse and now I'm back home on oral Pred, still hating the side effects, but grateful for the effect they have on my gut.

Any medication has potential side effects, even the mildest painkillers can have devastating effects if used incorrectly, but they are only a maybe not a definite. The effects of untreated or undermanaged crohns are often much worse than the medications. I can see you've already seen it's dark side more than once and want to reassure you that while the medications are harsh, they are a better option than that.

If you do struggle with side effects then be honest with your doctor about it, they might be able to tweak your dosage to where it stops the worst side effects but still has the desired effect on the crohns, or they might be able to offer you ways to avoid or control the side effects.

I hope you find this forum helpful, we're all in this together and even if we can't answer everything we can at least support you through this.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
07-09-2014, 05:29 PM   #4
Funkwecker
 
Join Date: Jul 2014
Location: Augsburg, Germany
Thanks Araceli and Nicola for your replies! I can see that you two have also been through your own medical adventures. I have an update! My doctor called me on 8 July and told me to start taking Salofalk again and I experienced an improvement in the past 2 days. My body is not fighting off the Humira so I am still taking that. I am glad that I have found this forum, I have already learned a lot from reading many of the posts. All the best to you and I hope we can all achieve remission and stay there
07-09-2014, 07:34 PM   #5
HARVinTX
 
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Join Date: Oct 2012
Location: San Antonio, Texas
Jeff,

Welcome to the forum! I think you found a great place for resources and to get things off your chest.

We share some commonalities. I was stationed in Bitburg from 1985-92 (I miss the food and people terribly!). I began having abdominal pain in April of '91 and a year later was diagnosed with Crohn's. The diagnosis came right after I checked into my duty station at Dyess AFB (Abilene, TX). I started the 40mg prednisone and stayed at that dose for 3 months, which led to me having to use crutches to walk because the swelling was so bad. If I only knew then to lay off the salt!!!

I also was on Asacol. Didn't help a bit. Who does that work for???

I was medically boarded in October 1993 after 9 years of service. I had planned on staying in for the long haul. Obviously didn't work out...

I stayed in Abilene and went to school. Did 2 years of classes in 15 months so that I could apply for a program in San Antonio. The stress with all of those classes led to a crazy bad flare. I recovered and moved to San Antonio to finish my degree. Yep, more flares from the stress but eventually I had a few years of moderate peace in my gut.

I would have the colonoscopies every 3 years and knew I had strictures in my large bowel. In early 2002 I had my first obstruction. That was crazy ass pain. A few months later I repeated with another obstruction and off to the surgeon I went. I had a resection December 2002 with removal of about 16 cm of my large bowel. The first couple of days of recovery were brutal and I remember saying I would never go through that again.

I had a few more years of relative calm and then flared at the end of 2006. Got that under control and then started having obstructions again in either '08 or '09. I was able to manage those obstructions at home (total of 6 through September 2012 when I had my last one). I would know when an obstruction was occurring because I would start feeling "unwell", then get cold/shivers, then warm, then I would need to pace until I threw up. That could be 4-12 hours. It got ugly but I knew they would just admit me with an IV and some pain meds and keep me in the bed NPO so I figured I could do all of that (minus the IV) at home.

I started biologics in 2012. First Cimzia (I obstructed on that and never really felt it was effective.). That's when I had a CT Enterography and they noted severe stricturing of the inferior half of my ileum. My GI did not want me to have surgery because he thought too much bowel would need to be removed. I was 47 at the time.

So I moved on to Remicade. It did help but I developed antibodies against it in less than a year and had to stop it. Its based on a mouse protein and its not unusual to develop antibodies.

Next was Humira from JAN14 to a few weeks ago. It helped for a few months but my strictures were too far advanced to make much of difference for very long. There is also a thought that as the biologic heals the inflammation, additional scar tissue is laid down. As it cycles from inflammation to controlled, it continues on and on worsening the stricture.

That is where I am today. Sitting on my deck in San Antonio, writing to you because your story was so familiar to me. I stopped the Humira at the direction of my surgeon who is going to remove part of my ileum and ileocecal valve on Tuesday, July 15th. I changed surgeons as my previous one did not use laporscopic and because I think he could have managed me better post-op so I did not feel as terrible as I did. My GI said I can restart the Humira after I recover from surgery.

So, you are not alone. We all may separated by miles or oceans but we are one big community that have much in common. Again welcome to the forum!

Darin
07-12-2014, 05:48 PM   #6
Funkwecker
 
Join Date: Jul 2014
Location: Augsburg, Germany
Thanks Darin! I wish you the best of luck with your surgery on the 15th! I was in San Antonio for my first Army MOS (Medic). I LOVED it there. I think I would have problems if I lived there though. I love Tex-Mex and the food there was crazy good. Of course, the last time I was there, I was healthy and could eat everything. Those are good memories!

Don't let the man get you down! I will be watching to hear about your resection.

-Jeff
07-12-2014, 06:28 PM   #7
my little penguin
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Join Date: Apr 2012

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Glad to hear the 5-ASA was the boast your humira needed.
DS has been on humira for over a year and just added Mtx to it.
Keep that in mind as an option . You can aslo take humira every week if need be.

Hope things stay calm .
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