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New Member

Date Joined Nov 2010
Total Posts : 11
   Posted 4/9/2011 1:51 PM (GMT -6)   
hi everyone just my 3rd time posting but i read everyday. Going with the permament ileo tired of all the meds .Tired of every plan we make has to be based around where bathrooms are.Tired of missing my kids events cause i dont feel good sick and tired about being sick in tired.Very happy there is a sight like this for us who sit back and just read.I know its been very helpfull for me and my wife.I will be getting done in early june and just wanted to thank everyone for there help and there stories because weather you know it or not you all are a great help and thankyou

Another UC wife
Veteran Member

Date Joined Jun 2007
Total Posts : 2111
   Posted 4/9/2011 2:32 PM (GMT -6)   
You are exactly where my husband was last June - he had had enuf!

It isn't a choice any one of you want to make for sure but it cures you of the UC and it really does give you a life back. Granted, it is major surgery but once you heal and see just how much better you feel, the pouch and changing it and the learning curve are still sooooooooooo much better than suffering and missing out on your life with your family as indicated above.

When my husband made up his mind we looked online and educated and acquainted ourselves with the surgery illustrations, different Ostomy manufacturer's information and on YouTube there are some very giving people who illustrate and show different things about caring for an ostomy and changing and emptying the pouch etc.

By doing this beforehand, It honestly took all the "unknown" out of it and the both of us were so prepared and ready that we were not shocked or caught off guard after the surgery. I am a bit squeamish or so I thought....not a problem when he was recuperating from surgery and I observed the process with the ostomy nurse.

Our ins. also covered in home health care that we had for 11 visits in total for ostomy management so we were both confident and comfortable to be on our own with the changes after being released from the hospital.

The only regret my husband has is that he didn't do it sooner. As his Dr told him were not ready sooner...which was the truth. It had to be when he was at the point of wanting this and not being influenced or encouraged by anyone else. Broke my heart to see him suffer so long and so badly but he tried everything chasing a remission that was just not meant to be.

My sincere best wishes to you and your wife. Your kids will be so happy too when you get back on your feet and can start going to their events too.
(Oh BTW...initially and even now I help him do the changing as he is currently having a bit of a skin irritation issue and we are trying a different wafer (all pectin) powder etc and lying down makes it easier.  If your wife is willing to give you a hand initially you will find that the extra help in the beginning is a big help as you can be all thumbs.  He had a slight leak starting and I was out earlier this week and he got in the shower and took care of it himself so he can do it on his's just if I am home it makes it easier and faster but certainly not a requirement.  He did his own changing and showed the home health care nurse that he was self-sufficient.)

Post Edited (Another UC wife) : 4/9/2011 1:39:22 PM (GMT-6)

Veteran Member

Date Joined Apr 2009
Total Posts : 587
   Posted 4/9/2011 2:48 PM (GMT -6)   
I know it was such a relief to finally make the decision. It's not easy at first, but what you've been through hasn't been easy either. I am sure you will be happy with your decision. Good luck and keep us updated.

Scrap Girl
Veteran Member

Date Joined Jan 2007
Total Posts : 653
   Posted 4/9/2011 6:54 PM (GMT -6)   
Yeah, been there and done that. It's one thing to miss out on your own life but it's heartbreaking when you have to miss out on your kids'. I don't think you'll regret your decision. Good luck and let us know how it goes.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 4/9/2011 8:41 PM (GMT -6)   
YAY!!! Soon you will be healthy and doing all the stuff you can't now! my son was my major reason for surgery. And now i can sit in car line, and go to field trips and volunteer and take him shopping or to the park or whatever.
But i found other perks too, since i feel better, my husband and I can go out together (son spends the night with his grandma on friday nights) or with friends for dinner or a movie or whatever, and we get along so much better now! and we can go on vacation and all those great things you can't do now.

When you start to doubt your decision, and you will, just remember all the things you are missing out on and all the things you can't do, and that an ileo will give you all that back! good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 4/10/2011 7:35 AM (GMT -6)   
Congrats on making the decision. I found it a huge relief when I got clear about what I wanted to do. I'm still healing, but regrets are minimal, looking forward to better health. Good luck.

If you can meet someone who has a bag (through ccfa or a local ostomy assoc) that can be a big help.... just to see it and know what you'll be dealing with and to see a real person who has one. Of course, a great surgeon is important too.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Another UC wife
Veteran Member

Date Joined Jun 2007
Total Posts : 2111
   Posted 4/10/2011 8:00 AM (GMT -6)   
Ditto regarding a "good surgeon" and checking into that beforehand.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Veteran Member

Date Joined Oct 2008
Total Posts : 938
   Posted 4/10/2011 9:17 AM (GMT -6)   
Congratulations on making your decision. It seems once you do that, it gets easier. Getting there mentally is maybe the hardest part. I am not quite 3 weeks out from surgery, so still healing and recovering...but the difference is already amazing. I've been able to make trips to the store without having to stop halfway through shopping to rush up to the bathroom. I don't even think about it! It's so nice.

I agree with the advice to research about the ostomy before you go in. I felt very prepared in that regard when I went in for my surgery. My roommate in the hospital was having a horrible time...she wouldn't empty the pouch on her own at all and refused to even look at the stoma while the nurses were changing her pouch. I don't know what the circumstances were of her ending up with the surgery, but I was glad I had a chance to prepare myself so that I wasn't in a similar place mentally. I think if you are prepared and at peace with it, then the adjustment is a lot easier.

Welcome to the group and be sure to post any questions you have as you get closer to surgery. The folks here are amazing and generous with their knowledge and support.
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