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Crohn's Disease Forum » Surgery » I am getting a colostomy


05-19-2011, 09:10 PM   #1
Persian
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Location: Missouri City, Texas
I am getting a colostomy

I have introduced myself before on this site but a quick reminder I have CD and the area most affected is my colon and rectum. I had my first rectal abscess in January of 2009. On Azatriopine and Humira. Intestines and colon have gotten better but my rectum still hasn't healed properly. my rectal fistulas have been draining continously since jan of 2k9.

the colon and rectal specialist who I see (my GI is not a surgeon) and has done an operation to help with the fistulas has recommended that I get a stoma, or continue to let the medication try and fix the issue.

I have opted for the stoma and I come to find out he is moving to Seattle soon (I live in Houston) so I scheduled an appt to have the operation done before he leaves. I come to find out I have to stop dosing Humira for 8 weeks before I can have the operation and by that time he will be gone.

I have several friends in the healthcare field who have told me my quality of life will improve with the stoma, although my doctor says that if I reverse the stoma that my rectum could go back to its inflammed state. regardless, I am looking for relief but at the same time it wont be with the doctor/surgeon that I have built rapport with and has helped me through what I consider the darkest hours of my life health wise.

sorry for the long read
05-21-2011, 09:08 PM   #2
billyjoel
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I am sorry that you have to go through this.

I believe that your doctor is correct in what he is saying, it is my understanding that surgery is not a cure for IBD.
05-22-2011, 12:30 AM   #3
ThanksP
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Sorry you are going through all of this. All I can do is hope and pray for you that you find relief. Best of luck to you!
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05-22-2011, 11:13 AM   #4
bruscar
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Hi Persian,

Thats not a long one at all my friend !!

We are all different in so so many ways.

I had one ileostomy for 6 months and then had to have a permanent one two months later, thats the way it goes mate, relief yues absolutely .

Difficulty getting used to the bag, yeah absolutely, and it doesn't get any easier.

But it willgive you a huge sense of relief. absolutely so.

Think hard my man , it is a huge decision, and the medications are improving all the time.

All the best

Bruscar
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05-24-2011, 07:09 PM   #5
xJillx
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Hopefully, a temp stoma will give your rectum time to heal and you can successfully reverse it. However, if a permanent stoma turns out to be the best option, keep in mind what your friends have told you - your quality of life will improve. Many forum members have gotten a permanent stoma and sing its praises. If you search through the stoma sub forum, you will find some inspirational stories. Good luck and hang in there!
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Diagnosed with Crohn's Disease - July 2010
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06-07-2011, 06:09 AM   #6
Christie
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I have had a stoma for just over a year now and it has been brilliant, I am getting it reversed at the end of the year but I do know that if I have to have a perminant one I will be fine with it. It has changed my life!!!!
06-08-2011, 03:28 PM   #7
Terriernut
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Hiya Persian. Sorry to hear you are losing your fav Dr.

I have an ileostomy, hopefully temporary, but that's uncertain. It has certainly helped me out immensely, but it was emergency surgery. I wouldnt advise you wait til it's an emergency!

Come visit us in the stoma subforum. We rock!

Misty
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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06-12-2011, 09:48 PM   #8
ameslouise
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Hey Persian - How's it going?? Have you had your surgery yet and if not, when is the date?

Happy ostomate over here and I am glad to report life is GRAND since I had my permanent ostomy installed in March. For most of us, our stomas offer a much better quality of life. Most days I don't even think about my Crohns and I sometimes even forget that I have a bag! Life is grand!

Good luck, hope it all goes well for you!

- Amy
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