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JonDuke · 01-18-2014, 10:36 AM

On January 1st, I started having some nastiness in my stomach. I knew after 4 days that is was bad, but didn't go see a doctor until after 2 weeks of major diarrhea.

My dad has had IBS for quite a few years and just 2 months ago, was diagnosed with stage 4 colon cancer. My younger brother has had a severe case of Crohns for 8 years now, so I was pretty sure I knew what was coming. I spent 8 hours in ER on Wednesday and was booked for an emergency colonoscopy the next day.

2 days ago, post colonoscopy, I was told I have IBD, severe Colitis throughout and Crohns in my Colon. They also took multiple biopsies, but my GI said she doesn't suspect any Cancer. They started me on an advanced dose (50mg/day) of Predniose. (worst tasting drug I've ever had in my life)
I'm on 2 other anti inflammatory meds: Asacol, which is a pill, and Coetenema, which is a Hydrocortizone retention enema. Fun times indeed and glad my wife laughed with me instead of at me.

I lived with my brother when he was first diagnosed and saw first hand how horrible the first couple years of his life were with the disease was. He had a dramatic weight loss, lost a relationship, his job, and went through hell. He tried Humira, ASA5, Prednisone, Vitulizomab, Imuran, etc. They took 7.5 years to find a treatment combo that works for him. (he's on 800mg of Remicade every 6 weeks). And he's doing awesome now. Our family is grateful to finally see him so happy after living so many years in hell.

Now it's my turn and although somewhat familiar with the disease, I'm hoping others can share anything they've seen help tame the symptoms. I know an increase in daily exercise and changes in diet are probably key, but what else should I be doing?

I'm also not sure what to think of Prednisone. I know a common side effect is weight gain. My brother didn't gain a bunch of weight, and that's my main fear. I do NOT want to gain more weight or get balloon faced. Have read lots of other horror stories and makes me wonder how miserable this could be.

Any pointers?

Bonus points: I've walked with my brother in the annual "Gutsy Walk", but we never had a team name. There's were some pretty fun team names, and I plan on going all out this year. I need help with a new team name. Other examples are: Sh*t Disturbers, Kings of Thrones, Loose Movements, No Colon Still Strollin, Crohn Thugs n Harmony, etc etc. I know someone here can suggest a better name for us to use.

01-18-2014, 10:36 AM	#1
JonDuke Franchise Player Join Date: Dec 2010 Location: Calgary Exp:	Whatcha Know About Crohn's Disease? On January 1st, I started having some nastiness in my stomach. I knew after 4 days that is was bad, but didn't go see a doctor until after 2 weeks of major diarrhea. My dad has had IBS for quite a few years and just 2 months ago, was diagnosed with stage 4 colon cancer. My younger brother has had a severe case of Crohns for 8 years now, so I was pretty sure I knew what was coming. I spent 8 hours in ER on Wednesday and was booked for an emergency colonoscopy the next day. 2 days ago, post colonoscopy, I was told I have IBD, severe Colitis throughout and Crohns in my Colon. They also took multiple biopsies, but my GI said she doesn't suspect any Cancer. They started me on an advanced dose (50mg/day) of Predniose. (worst tasting drug I've ever had in my life) I'm on 2 other anti inflammatory meds: Asacol, which is a pill, and Coetenema, which is a Hydrocortizone retention enema. Fun times indeed and glad my wife laughed with me instead of at me. I lived with my brother when he was first diagnosed and saw first hand how horrible the first couple years of his life were with the disease was. He had a dramatic weight loss, lost a relationship, his job, and went through hell. He tried Humira, ASA5, Prednisone, Vitulizomab, Imuran, etc. They took 7.5 years to find a treatment combo that works for him. (he's on 800mg of Remicade every 6 weeks). And he's doing awesome now. Our family is grateful to finally see him so happy after living so many years in hell. Now it's my turn and although somewhat familiar with the disease, I'm hoping others can share anything they've seen help tame the symptoms. I know an increase in daily exercise and changes in diet are probably key, but what else should I be doing? I'm also not sure what to think of Prednisone. I know a common side effect is weight gain. My brother didn't gain a bunch of weight, and that's my main fear. I do NOT want to gain more weight or get balloon faced. Have read lots of other horror stories and makes me wonder how miserable this could be. Any pointers? Bonus points: I've walked with my brother in the annual "Gutsy Walk", but we never had a team name. There's were some pretty fun team names, and I plan on going all out this year. I need help with a new team name. Other examples are: Sh*t Disturbers, Kings of Thrones, Loose Movements, No Colon Still Strollin, Crohn Thugs n Harmony, etc etc. I know someone here can suggest a better name for us to use.