New here, with a story

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mjmr1989
New Member


Date Joined Jan 2008
Total Posts : 11
   Posted 1/9/2008 4:18 PM (GMT -7)   
Hey guys and gals, my name is Michael and I have pretty much grown up knowing that I have Gardners Syndrome. Basically, it screws up the teeth, causes benign tumors (I've had 4 removed) and causes polyps in the digestive tract. These polyps have a chance of becoming malignant, so I've had endoscopies/colonoscopies about every year or two for the past 10ish years (I'm 18). My father and brother had it, but weren't diagnosed at the time. My brother eventually had large tumors move outside of his colon, so they took them out, but then more formed. So they took those out, and he eventually died at 22. That is when they decided that I had it (when I was only a couple years old). At my latest endoscopy/colonoscopy procedure at UCLA (where I've always had it), they found the usual amount, and took biopsies. My doctor met with a group of doctors to discuss my case, and said that what happened to my brother is happening to me, and the only way for me to live past my 20s would be to remove my (entire, I think) colon. I'm just about to start my spring semester at college, so I think I can have it done over the summer. I will have the surgery, stay there for a week, and come home with a stoma/pouch type thing. Six to eight weeks later, I'll go down again, and they'll do some fancy stuff and make a couple feet of my small intestine wider and then sew my rectum and the intestine together and close the stoma hole. So I won't have to have a bag for the rest of my life... But I imagine it wont be too pleasant for the time I do have it. So that's my story (And I'm stickin' to it! :-)). Just wanted to share it, and get it off my chest, I guess. I just found out last night, and just this past friday, I saw a friend of mine who at 16 had to have a semi-emergency surgery to remove his colon (the day before I saw him). So I'll probably get in touch with him sometime soon. Thanks for reading :-)

Post Edited (mjmr1989) : 1/9/2008 4:24:47 PM (GMT-7)


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/9/2008 6:47 PM (GMT -7)   

Michael,

Thanks for sharing your story with us. I'm very sorry that you lost your brother at such a young age. sad  You're doing the right thing by having surgery, but I have to ask, is it safe to wait so long to have it done?

I had my colon and rectum removed because of Crohn's Disease, and I was out driving and grocery shopping two weeks after surgery. Granted, I was still weak from surgery, but it's not going to keep a young man like you down for very long, if that's what you're concerned about. College can wait, but your health cannot.

Having a bag is not that big of a deal, like everyone thinks it is. The pouches are flat and are very discreet, so nobody will know that you have it. What the surgeon is going to do next is called a j-pouch, where they will attach your small intestine to your rectum, thus eliminating the need for the stoma and the bag. You can read all about it at www.j-pouch.org.

Please ask us any questions you may have regarding your upcoming surgery. We've all been there and might be able to help eliminate any fears you may have. eyes Take care.


Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


mjmr1989
New Member


Date Joined Jan 2008
Total Posts : 11
   Posted 1/9/2008 7:36 PM (GMT -7)   
Thanks for the response :)

My mom sent an email to my doctor asking whether it can wait until summer. She said he didn't mention it needing to be out within, say, the next month or something (I'd imagine if it had to be immediate, he would say so) so we're asking.

I do remember my mom reading off of her notes (of what my doc said to her) something about a j-pouch, so that's probably what it is. And that would be after I go in for a second surgery (to create the j pouch), right? I think they are planning to give my rectum and all that a rest (hence the bag for 6-8 weeks).

Also, I forgot to mention - my young friend who had his colon removed last week is also diagnosed with Chron's Disease. I take it that CD is treatable, right? He's a great guy, and I hope he lives long.

Thanks for the help :D

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/9/2008 9:50 PM (GMT -7)   
My sympathies for ur brother as well. I have crohns disease as well and am curremtly awaiting surgery for a temp ileostomy. I too have the same concerns as u do, but the people here are unbelievably helpful and encouraging.
Yes, crohns is treatable but not cureable YET. Especially if u can find drugs that work for ur body. Ull find this site extremely helpful with any questions u might have. These folks are great
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!

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