Considering surgery

In my husband's case the CR surgeon honestly indicated he thought the best way was the one surgery insofar as my husband was concerned. He explained in-depth why, however knowing my husband was very interested in having a shot at the j-pouch he only scheduled my husband for surgery that day. What became a very difficult, tedious 7 1/2 hr surgery he was unable to perform it for very good valid reasons. Obviously the surgery taking as long as it did and the operative notes that we got a copy of later certainly verified that fact. He apologized to my husband a few days later saying he was sorry that he was unable to do it for him. My husband had the utmost confidence in him and was not annoyed...he knew it wasn't meant to be and let the surgeon know he knew he did the best he could given the situation.

In retrospect it is better he had the one surgery instead of having a pouch that in all likelihood would have had a tough time performing at optimum level due to his anatomy and problems. Then to need additional surgeries to finish the process and another to possibly reverse and undo the process...it worked the way it was supposed to as far as we are concerned.

Butterfly can you try to find a local support group to go to a meeting or possibly there is maybe another female ostomate in you area that you could connect with? A local WOCN may have some info like that and I believe the UOAA website has a link for that as well.

Had me and my husband not checked everything out in detail and been prepared it would have been more shocking and difficult to deal with. Deciding to have surgery and just wake up with the new situation I think is too daunting.

Yes in the beginning when I first checked it out it was a bit depressing and I had to wrap my head around it...once I did I had my husband come in and check out all the material I had assembled with the different links to youtube videos, photos online and the different manufacturers tutorials.

All the testimonials along with the trial and error aspect here also played into a better understanding once my husband made up his mind.

Maybe overall even with all you have gone through and are still going through you are not ready yet. You have to make the decision and only you when you feel it is right on so many levels.

Most every one who decides to go ahead with the surgery when they were not forced by an emergency situation were at the point they just could not deal with it any longer and before things might get worse, it was better to go and do it.

Good Luck...this is not easy for sure.

Ok today I ventured out to take my son school shopping and no sooner did we pull in the parking lot, I had an accident all over my pants, legs, feet, sandals, car seats and carpet. Mind you I had on a depends and had taken two lomotil. Thank god I had wipes, a towel another depends and change of clothes. I'm at my wits ends. What could be worse having accidents like this, or getting the iliostomy that will leak, smell, and would be irreversible? Those with iliostomies please tell me if what I'm being told about this surgery is a lie or true? I'm desperate!!thank you!

uc_free said...
Well, my ileostomy doesn't leak or smell. In fact, no one even knows I have it; that includes many friends. Believe me, almost anything you'll face with an ileostomy is better than what you're dealing with now.

 

I agree as well...

 

my husband uses a one piece system....he does full changes on
Wed and Sun...I have never smelled any type of odor...only when he empties the pouch and certain foods will make the odor stronger than other times.  There are deodorizers you can put in the pouch so when you empty the contents there is less odor and you can also chew these banana flavored type tablets if you wish before eating to control the odor when you empty.  BUT......when people have  bowel movements most time there is a smell even if you have no ostomy so to me there is no difference in that regard.

 

I am sure you are worried about odor emitting from the pouch.  No. not an issue.  Can you have leaks...especially initially when you are in the learning trial and error phase it is possible. Yes but speaking from my husband's experience....he only had one really bad one at home and then 2 possibly 3 very beginnings of a leak and he changed immediately.

 

I will honestly say my husband had some very close calls when he suffered with the UC and on several occasions would wear the depends for insurance and peace of mind if he was not going to be near a bathroom in a minute's notice....he never experienced what you have gone through.  If he had I know he would have had the surgery even sooner!  That is really tough and I can see why you are so concerned about trading one set of circumstances for another.

 

When you make up your mind and decide on the surgery after the initial stuff you have to go through after surgery and healing etc. I am sure you are going to be saying the same things most everyone else on here says....why did I wait so long....should have had this done sooner etc. 

Granted there are some people who have other issues or complications they are dealing with after surgery....there is no crystal ball and I think when we are all faced with such an important decision you have to go with the law of averages and focus on what is usually the end result and pray that it all works out.

My husband has had an incredible past 20 months and hopefully it will continue.  But even if there are some complications to contend with down the road, I know he could have not continued to keep living the way he was prior to surgery.  He wasn't living and his quality of life had become almost non existent and it was very tough for him and me.  I never felt so helpless in my entire life and couldn't try to talk him into surgery....he needed to decide on his own.  Took too long deciding he feels now that he got his life back and can never get those years back that he feels he wasted chasing a remission that was just not meant to be for him.