Hi everyone new here for illeostomys came from Ulcertive colits....

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mama2
Regular Member


Date Joined Jun 2007
Total Posts : 42
   Posted 3/9/2008 9:13 PM (GMT -6)   
hi everyone well I finally had it with my colon after being diagonosed with UC 4 years ago and January 8th 2008 had my surgery. The first couple of weeks where rough but now I am feeling so much better and am med free!!!Its a great feeling. I am married 4 years and had two beautiful daughters Danielle 3 and Juliana 9 months. Had a very rocky summer was in the hospital 29 days with a flare and finally got a great surgeon at the Lahey clinic in burlington mass and have been happy every since. I have finally decieded need to be able to talk to others who have had this as I hit a few bumps and would love to here how everyone else copes.. I see my surgeon on march 27th to discause if I want the 2nd and 3rd surgery to get it reversed and I'm not really sure that I do.. How many have had it reversed and are happy and how many have keep it Parts of me wants to keep it and parts say try the reversal.. Also how do other cope when it comes to love making.I am 27 and very shy even after 2 kids in the bedroom department and used to love to be naked and now I don't want to be. ANy ideas how to feel comfortable with the bag when it comes to the husbend department? Going on my `1st trip in four years to TN to see Graceland and Dollywood very excited.. It will be great not to worry about the toilet. Well now that I have talked alot.. Can't wait to start chatting!!!!!!Rebecca from MAine
Asacol 400 mg 12 a day
Remicade every 6 weeks
Proton ix
Xnanx
Anitriptalyn


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/9/2008 9:22 PM (GMT -6)   
congratulations! I wish I could give you some advice, but I'm in the pre-surgery stage right now. I too have been to the Lahey Clinic- I live in Massachusetts. I've met with Dr. David Schoetz, & had my surgery scheduled with him. I'll most likely be calling him this week to reschedule! But welcome- the folks on here are 100% awesome. Now why didn't you try Humira? that's my big hurdle right now- try it or go straight to surgery.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


mama2
Regular Member


Date Joined Jun 2007
Total Posts : 42
   Posted 3/9/2008 9:28 PM (GMT -6)   
I didn't try humaria because my GI said that most likely it might work for a couple of months but all it would do is by me time but she was sure that my colon would have to come out soon. So I decided not to put more chemicals into my body and just have the surgery.. I am very glad I did it...I have Dr. Robert Marcello he is the best(hes top doc in ostomies)! Good luck to you. Its never easy but the surgery was not that bad and Lahey all the nurses called me every day for like a week and then 2 weeks later. I was never so happy at how nice and reliable everyone was.. Hope that helps. Thanks Rebecca

Asacol 400 mg 12 a day
Remicade every 6 weeks
Proton ix
Xnanx
Anitriptalyn


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 3/9/2008 9:37 PM (GMT -6)   
Rebecca,

It is very normal what you are going through.....I have crohn's so I wasn't a candidate for an ostomy but I know many people who have had the j-pouch surgery and have lived with the j-pouch successfully for years. After being sick for so many years I can understand not wanting to go back because of the fear that you may get sick again. Check out the following site and they have a message board for j-pouchers: www.j-pouch.org

Erica
Erica
Crohn's and Ostomy in 2004


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/9/2008 9:39 PM (GMT -6)   
hi rebecca and welcome! i'm not married so i can't really help in that dept. however i am like you, and have always been very shy (i'm 25) when it comes to things like that. So this bag of course makes it 10 times worse. Even when ur significant other says they dont care or it doesnt bother them. I know alot of the ladies here use mini's, but a guy at convatec scared me away from them. So i'm interested as well to hear what responses u get. Stay in touch!
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?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


mama2
Regular Member


Date Joined Jun 2007
Total Posts : 42
   Posted 3/9/2008 9:44 PM (GMT -6)   
Thanks Ash83 .Yes I do have a  two-piece system. I try'd convetec but now I am using Hollister.I seem to like them as you can't see thru the bag. I'll have to see it they have the caps as that would be great.. I was wondering how it would work if one was to get pregnat with an illi?? Have you talk to your Doc about it? I have to girls and would really love to have a boy but also afaid that there would be complications...Also the Gi said that it might be alot harder to get pregnant. I definelty would want to where a tank thats a good idea.. Have you ever ditched it?My husbend and I do talk but when we get to a stall mate we just stop.I can tell he uncomfortable and he wants me to have the 2nd surgery as he would love to feel my skin again but he also says he knows that it is my decision. But I am not sure that I do and hope it doesn;t create a problem. I change the bag 3 to 5 times a day so if they had a cap it would work..
Asacol 400 mg 12 a day
Remicade every 6 weeks
Proton ix
Xnanx
Anitriptalyn


mama2
Regular Member


Date Joined Jun 2007
Total Posts : 42
   Posted 3/9/2008 9:52 PM (GMT -6)   
What did the guy at convetec say bad about the minis??? Curious as I have not try'd them out yet.... What a fun process this is..
Asacol 400 mg 12 a day
Remicade every 6 weeks
Proton ix
Xnanx
Anitriptalyn


Scrappyjrt
Regular Member


Date Joined Jul 2006
Total Posts : 212
   Posted 3/11/2008 11:47 AM (GMT -6)   
Hi Rebecca,hope you are feeling better and better everyday! My colo is permanent.I am one of the people that is glad I had it done. Good luck to you either way you decide to go.

  1. Colostomy May07
  2. Rectum removal and hernia repair Oct 07

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