Yet another new member

[DanM]

Hello everyone.

I was diagnosed with Crohn's in 1996 during my freshman year of college. I was stuck in a small dump of a town in western Missouri, so knowledge of Crohn's was not very common amongst the doctors. They prescribed Pentasa at first, but 16 pills a day did not even phase me. I spent most of the first semester in college either in class, or in bed. I probably lost close to 35 pounds and was a stick when I got home for winter break. Luckily, I found a new doctor who did some new tests and got me on the right track. When he saw my blood tests and scan results, he was wondering how I could even stand up given how bad it was. I had one of the worst cases he had ever seen. He put me on the maximum allowable dose of prednisone and shocked my system back into shape within 2 weeks. It took me a few months to ween me off the pred and start using Imuran. I have been in remission since, minus a 24-48 hour flare up once or twice a year.

Wifey and I recently moved to New Haven, so I had to find a new doc to manage the disease. Luckily, I am right next to Yale New Haven Hospital with one of the worlds leading experts on Crohn's and digestive diseases handling my case. She gave me a muppetoscopy and an MRI to see whats going on in there. She is shocked and befuddled by my case. I am as healthy as an ox and show no symptoms, but have active inflammation and fistulas that need to be addressed. Most patients she sees with my level of activity are in much worse shape.

Bascially, I am a medical mystery and a freak of nature! :ybatty:

My blood tests are pending, but it looks like she wants me back on imuran or 6-mp and possibly Humira to close up these fistulas.

To all of those who just got diagnosed, keep your head up. I have lived the past 10-12 years without any ill effects and have lived a normal life. I have backpacked and rafted through Glacier National Park and Biked the Irish countryside. I have also met and married the love of my life. I live a normal life, despite having this damn disease. It may be bad for a while, but life will get better soon!

Dan

 

[My Butt Hurts]

Hi Dan - welcome to the forum!

 

[kello82]

hey there, nice to meet you!
hey i live not too far away from new haven, bout 45 mins. i used to go to the yale childrens hospital for my crohns in fact!
your story is very inspring to me. ive always dreamt about doing stuff like backpacking and travels like that, but my crohns has never been under control enough where i can do more than a daytrip. but its good to hear that youve done it. it gives me hope

 

[jamie2462]

Nice to meet you Dan. As one of those newly diagnosed it's nice to hear some positives.

 

[mRae85]

Just wanted to say welcome, you and I joined this forum around the same time and i never did post here but I have how ever read this post probably at least once a day, just didn't exactly know what to say or how to say it. I have been diagnosed for little over a year now but it seems nothing has been getting better. I've not been in as bad of shape as you have but with it getting worse and worse I just wanted to say that your story is not only great for someone newly diagnosed but it also provides alot of hope to everyone here I think. Not everyone can seem to get the sucess that you have been so lucky to get but it is wonderful to hear a true suscess story, I really hope you continue to post here and give us all some much needed hope around here. I for one have promissed myself even if by some maricle I find a treatment that works 100% and I never have another sick or bad day again I will continue to come here and post for the sake of everyone, I find it so sad alot of people seem to forget about this place and all the people here when they finally feel better. Crohns never goes away and it always has a chance of comming back full force kickin us in the rear. So basically what I am saying is I hope to never see you leave but either way I had to say thank you for the inspiration and the hope. What you have gave to this forum is in my opinion a true gift, something that words can't express. Everyday we are faced with the worst and your story is simple enough to make me speechless for almost a week....and I still dont have all the words really to describe how it makes me feel. Thank you very very much.

 

[daisy_dueller]

Hey Dan!! Welcome to the boards!

I love your story! Medical Mystery, freak of nature...whatever you choose to call yourself...you're showing those here that think there is no light at the end of their tunnel that it will get better...

 

[mommy1st]

Hi Dan welcome to the forum.

 

[DanM]

Just wanted to say welcome, you and I joined this forum around the same time and i never did post here but I have how ever read this post probably at least once a day, just didn't exactly know what to say or how to say it. I have been diagnosed for little over a year now but it seems nothing has been getting better. I've not been in as bad of shape as you have but with it getting worse and worse I just wanted to say that your story is not only great for someone newly diagnosed but it also provides alot of hope to everyone here I think. Not everyone can seem to get the sucess that you have been so lucky to get but it is wonderful to hear a true suscess story, I really hope you continue to post here and give us all some much needed hope around here. I for one have promissed myself even if by some maricle I find a treatment that works 100% and I never have another sick or bad day again I will continue to come here and post for the sake of everyone, I find it so sad alot of people seem to forget about this place and all the people here when they finally feel better. Crohns never goes away and it always has a chance of comming back full force kickin us in the rear. So basically what I am saying is I hope to never see you leave but either way I had to say thank you for the inspiration and the hope. What you have gave to this forum is in my opinion a true gift, something that words can't express. Everyday we are faced with the worst and your story is simple enough to make me speechless for almost a week....and I still dont have all the words really to describe how it makes me feel. Thank you very very much.

You are very welcome!!

I consider myself blessed and lucky that my body has responded so well to medications, for finding doctors who have been fairly agressive in treating and managing me, and having family and friends who have supported me through this. I have read some people around here that were on pred for a couple of weeks... I was on it probably for 4 months! That's how aggressive my doctor was when he started to treat me.

I'm not going to blow sunshine up anyone's genetically defective and heavily medicated tushes. This is a nasty disease. Not everyone is going to respond as well as I did to treatment. Not everyone will go back to living a close to normal life. At the same time, some of the drugs we are using now, like Humira, were not available when I was first diagnosed. Who knows what types of amazing treatments are around the corner that will give even the worst sufferers relief.

Don't worry. I will be here on a regular basis to provide support and be the wise (dirty) old man for those who need my help.

I love your story! Medical Mystery, freak of nature...whatever you choose to call yourself...

That was all in good self deprecating humour . :ycool:

hey there, nice to meet you!
hey i live not too far away from new haven, bout 45 mins. i used to go to the yale childrens hospital for my crohns in fact!
your story is very inspring to me. ive always dreamt about doing stuff like backpacking and travels like that, but my crohns has never been under control enough where i can do more than a daytrip. but its good to hear that youve done it. it gives me hope

Have you volunteered for the IBD Genetics consortium at Yale? They are doing a massive genetics study on the cause of Crohns and are actively seeking volunteers. Here is more info on the program. http://info.med.yale.edu/intmed/ibdgc/index.html. If you want another opinion, I recommend you talk with Dr. Cho. She is one of the worlds experts in IBD, so you will be in good hands with her.

Until later :rr:

Dan

 

[kello82]

Have you volunteered for the IBD Genetics consortium at Yale? They are doing a massive genetics study on the cause of Crohns and are actively seeking volunteers. Here is more info on the program. http://info.med.yale.edu/intmed/ibdgc/index.html. If you want another opinion, I recommend you talk with Dr. Cho. She is one of the worlds experts in IBD, so you will be in good hands with her.

i took part in a really similar genetic study at the children's hosp of philly, so i believe all the hospitals are probably working together on this. but thank you! and i will keep Dr. Cho in mind if i ever need another opinion

 

[ladyB]

Hi, Dan!
I am happy to hear you are doing good.
Welcome to this site.

 

[fenway1971]

Hi, Dan -
Great story. Positive attitude is half the battle.

 

[Guest]

Yo
Don't worry. I will be here on a regular basis to provide support and be the wise (dirty) old man for those who need my help.

every forum needs one of those :ylol2:

hi Dan and welcome love your optimism... it's infectious lol. i'm really pleased to read how well you're doing - keep doing what you're doing, it's obviously suiting you!