• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Crohn's veteran shakes giant fist at tummy

First off, kudos to whomever thought of this little online community. I stumbled across it last night, and after creeping enough threads I decided I needed to reach out as well.

I've never had anyone that truly understands, so I'm afraid this may seem long-winded.

I was diagnosed in February 1998, at the age of 17, after years of pain and embarrassing diarrhea. I was immediately thrown on Prednisone and a binding agent that was useless. The pred gave me panic attacks, full teen rage and an even worse case of acne! By May of that year, I had lost 70 lbs (190 down to 120). That same month, a week after prom, I had a re-section and lost 19" at my terminal ileum. I was fortunately allowed to skip the remaining 1.5 months and graduate high school with the marks I had.

After the summer, I returned for my OAC year (grade 13 doesn't exist anymore in Ontario). During the end of the first day of school, the teachers walked out in a labour dispute. When the schools re-opened about two weeks later, another flare-up had occurred and I couldn't return. I completed one credit from home because a wonderful teacher visited me every week.

A year later, I was well enough to start college and begin a new life. I was even a varsity athlete. Diarrhea has always been a part of my everyday, but no major flares eventually allowed me to start a career in news broadcasting. Eventually I met the woman of my dreams. I still remember our second or third date when I told her I poop a lot! We had our first child a couple years ago and things were going great until last year when I started experiencing bouts of exhaustion and dizziness. I had heart tests, etc. and eventually decided it was just the constant diarrhea and my stressful newsroom work environment. I was already taking Entocort at the time.

And then The Hobbit happened. A moment of weakness at the movies in January of this year saw me devour a bag and a half of popcorn. It was soooo good. Until 24 hours later when I was quite nauseated. Hours later I was also distended (I prefer one giant rock-hard ab) and vomiting every 20 minutes. By morning I visited the hospital and was quickly put on morphine.

Days later I returned to work but visits to my GI and GP that week convinced me to go on short-term leave. Maybe a couple weeks...at most. I began taking Nabilone (Cesamet) for the pain and more Entocort. I started a low-residue diet, no caffeine and no alcohol. My monthly B-12 shots were also increased to bi-weekly. A CT scan showed a mild obstruction and I remained off work because bouts of dizzyness, and even passing out, had begun. A MRI in March revealed three narrowings: one in the large, two in the small including where my re-section had occurred years ago.

In April, I had a repeat of the distended abdomen and nausea escapade. Much to my chagrin, the Entocort was replaced with Flagyl, Cipro, Prednisone and the bouts of anxiety, insomnia and rage that followed. I also managed to poop my pants during a sleepless night. That's right, internet, I pooped my pants. Imagine telling your wife why you need to buy a new computer chair! :stinks:

By end of April, I had begun Remicade therapy. By mid-May, weekly Methotrexate injections @ 25mg was added along with Hydromorphone (Dilaudid) pills for pain. I also had to end short-term disability and start on long-term disability with my employer and its insurance company - who is thankfully paying the Remicade tab.

End of May brought another MRI. I received the results a couple weeks later. My GI told me things were clearing up and that I could return to work at my discretion. I also began tapering off Hydromorphone and transitioning to Lyrica.

The tapering didn't go well, and by end of June, I was experiencing withdrawal. It truly is a terrible thing.

In July, I began to see a dietitian who went a step further than my low-residue with a custom diet supposed to help bind me. This included VSL #2 probiotics treatment and the removal of dairy. I began to jog a few times a week. I rested outside of that. The diarrhea continued. But I was close to a return to work.

In August, despite the continued Methotrexate, Remicade and Lyrica therapy, another flare-up. But, at least, no hospital trip.

This month I returned to my dietitian - who seems dumbfounded. Probiotics stopped, more protein and Ultra InflamX 360 Plus shakes started. I have an ultra-sound later this week and a third MRI in another month or so. I have begun to taper off Methotrexate. I wish I had never started it. I have yet to return to work.

I live near Toronto, Canada. I'm very grateful that our public healthcare system has covered many of the costs. I also have a good employer, with a great health plan, that covers the rest. Financially the only burden has been the partial salary I am now receiving while on LTD.

Through it all, my wife has been absolutely amazing. And my daughter has been a laugh. On the flip side, I was home for her last few months of maternity leave. Many fathers don't get that. Now each morning I take our daughter across the street to daycare.

But then I sit around all day in pain. I'm tired. I'm angry. I'm extremely bored. No therapy seems to work. I can't mow the front lawn without buckling in extreme pain and sleeping the rest of the day.

I'm beginning to worry I'm going to use more of the allotted time LTD covers than I thought. I'm scared I'll have to give up my job and switch to something that better suits my 'situation'.

I would murder somebody for a Coca-Cola Classic right now. :devil:

We all have our stories - that's mine. Thanks for reading. I hope you understand. Whoever you are, please take care of yourself and remember that it does get better...you just have to get through the bad part first.

And thanks again for creating a place where I can vent. I truly appreciate it.
 

PsychoJane

Moderator
Hi!
Welcome to our community. Feel free to vent as much as you please :)

I'm sorry this year has been such a roller coaster and I hope medication will kick in and allow you to feel better promptly.
 

David

Co-Founder
Location
Naples, Florida
Hey there and welcome to the community. I'm so glad that you stumbled across us last night :) I also appreciate you taking the time to share your story! I hope it felt good to get it out.

You're definitely among people who understand now. We're here for you.

All my best to you.
 
Top