Crohn's Disease Forum » Your Story » Hello Crohn's Sufferers

07-13-2015, 04:08 PM   #1
Join Date: Jul 2015
Hello Crohn's Sufferers

Hello, My name is Colby. My story starts off in the summer of 2003 I was 19 at the time I had just found out my then girlfriend was pregnant with my son. So as most responsible young males do I put on my big boy pants and started working my ass off in preparation of my new child. I would work a under the table masonry job during the day come home and wash and gear up to work at Domino's Pizza in the evening. Everything was going fairly well until one day as I was preparing for my shift at Domino's, I started experiencing sharp gut wrenching pain in my lower right abdomen preceded by a strong urge to defecate. Well defecate I did it was like a mucus like explosion in my toilet as I was done the pain was relieved so i continued my day. As soon as I arrived at work the pain and the urge to defecate returned. I rushed to the bathroom to relieve myself as not to mess my pants. I continued to work through the night bouncing from my work station to the bathroom by the time I got home I must have gone to the bathroom at least 15 times, well needless to say my night continued much of the same. Much exhausted from my long day and many bathroom trips I decided to retire to bed. I caught a few hours of sleep before being woken by what had plagued me earlier in the evening after another liquid explosion I tried once again to sleep. It had must have been 45 minutes before my next bathroom trip as I was sitting on the toilet I had wondered what it was that I ate or what kind of bug it was that I was experiencing that was causing all this CRAP. I took the next day off of work to recover, You know rest and fluids. That day was alot of the same this went on for 3 or 4 days before I finally broke down and went to the hospital. They tested me up and down for parasites this and that and everything under the sun to no avail. Gave me a lollipop smacked me on the ass and sent me home, "You have a stomach bug, plenty of rest, fluids and a B.R.A.T diet". So after a few days of sticking to nothing but fluids I had become quite hungry. So i thought I would make some toast and peanut butter to attempt and curb the hunger well not more than a minute longer than I had swallowed the first bite of toast the pain in my gut returned and this time followed by my body being enveloped in cold chills I instantly vomited but as I did I also shit myself from the tightening of my abdominal muscles. A few more days and nights went on either vomiting or defecating before once again I tried the hospital only to be again sent home without any indication of what might be wrong. I then scheduled an appointment with my family pediatrician who refered me to a gastro doc. A colonoscopy/endoscopy was scheduled and preformed about a week after meeting the gastro. Two days had passed and I was called into the gastroenterologist's office and was diagnosed ever so gently with crohn's ileocolitis. I asked if it would ever go away and the doctor responded with this is not something there is a cure for though it can be managed with the right meds. So started the trail and failure of many drugs over about a year span until the fda approved Remicade for the use of crohn's disease. So after weighing 220 of mostly muscle I dropped to a sickly 115 I was merely skin and bone but the remicade for the time being was providing relief until it wasn't.... Well a couple years later Well my body decided that it now wanted to create and Immunity to Remicade so again began the struggle of finding something else that could keep my severe to moderate crohn's ileocolitis in check. After about 8 months of trial and error with pentasa, 6-mp, prednisone tapers, entocort etc.. My doctor was suggested a new drug humira by a college so I began my experimenting with humira and so far i'm in check with the occasional mild flare up and inflammation and the steady dose of pain after eating. I'm currently in mid flare and wanted to join the community for some reassurance that there are others who feel like shit like me. So thanks for letting me share my story and I look forward to listening to the all of you and maybe helping someone who needs some assurance themselves.
07-13-2015, 05:51 PM   #2
Join Date: Nov 2014
Location: Missouri

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Welcome, linkdead! Glad to have you in the community, and sorry to hear about the flare. Thanks for sharing your story! You certainly aren't the only one.
Dx: Crohn's Disease, SpA, May 2004 (age 11); POTS, 2012 (Age 19)
Currently taking: Remicade (Crohn's); MTX (SpA); Florinef, Midodrine, Klonopin (POTS); Iron (Anemia)
Past Meds: Prednisone, 5-ASA, 6-MP, Imuran, Flagyl, Bentyl, name it!
Other issues: POTS, SpA, Anemia
07-13-2015, 09:10 PM   #3
Senior Member
teeny5's Avatar
Join Date: Jul 2008
Location: California

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Welcome to the forum! At the very beginning I was told to try the B.R.A.T diet too. I hope you find a medicine combo that works for you.
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.

"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
07-13-2015, 09:48 PM   #4
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Justanothercp's Avatar
Join Date: Aug 2013
Location: Sacramento

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My advice (for what it's worth) is look into the different diets that people purport help relieve their symptoms. You will not find a general consensus, different people and different "types" of Crohn's respond uniquely. But I will say after 20 years of crohns, tons of Meds and one resection, I finally got serious about my diet and it made an incredible differnce in my life. For the record, I follow the Paleo Diet. It is expensive,time consuming and takes some learning, but for me the difference it makes is worth it.
Good luck to you.
07-13-2015, 10:02 PM   #5
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dave13's Avatar
Join Date: Dec 2013
Location: Maine

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Welcome to the forum Colby! Thanks for sharing your story. If you haven't yet,I hope you check out what the forum has to offer. Here is a link to the Humira support group.,you might find it interesting and helpful. We are a diverse group,for sure.Each story is different.

The great thing about sharing our stories,in my opinion,is someone might read them and glean something useful and/or supportive from them.We are all different and each story may be a piece of information that someone can use to fight IBD.
"It does not do to dwell on dreams and forget to live."
07-14-2015, 09:15 AM   #6
Senior Member
Join Date: Mar 2011

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Sorry to hear you are struggling
I hope that Humira will keep you in a decent shape and that you get better so you can manage a semi-normal life.

I think anyone here, including myself, can relate to those long weeks when you feel like shit !

Repeating the above, if you still havent done so I recommend that you
1) Try to stick to a healthy diet that feels good for you
2) Check for vitamin/mineral defficients and supplement if needed
3) Do some moderate sports activity as possible, or some soft yoga, swimming, take walks, whatever feels good

All in all, take in a deep breath. Sending good vibes at ya !
Wish you get some relief soon.
07-14-2015, 09:44 AM   #7
Crohnzie Girl
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Join Date: Jun 2013
Location: Carlisle, Pennsylvania

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Welcome Linkdead13 to the life of a Crohnie. Lol. Isn't it wonderful? Lol. I'm just teasing. It's horrible. I've had Crohn's since I was 15 yrs old. After all the anger and the dissapointments and the why me phase it gets alil easier to cope. However I'm now have a colostomy feeling 100 times better. I was miserable crying bc I either messed my pants stuck in traffic on my way to work or at work getting through the day with in agony from stomach pains. So we know exactly where you're coming from. I hope you continue to get some relief and find the meds to put you in remission soon. 😊
I have been on Asacol, Flagyl, Cipro, 6MP, Remicade, Humira, Cimzia and Azathiaprine. I failed each one of them. I'd be in remission for 6 mths at a time but then it come back full force!

Colostomy since 2013 best thing for me!

Looking for support and sharing stories.

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