Colostomy - Support Please

My grandfather had a colostomy bag from age 44 until age 89 (at his death). My grandmother "did something" with it everyday (some sort of cleaning, she and he would go into the bedroom for 20 minutes every afternoon.... and that was really the extent we all knew about it (ALL of us grandkids).

He was an active and vigorous man until his death. Practiced medicine (thoracic surgery) for over 30 years, kyaking, boating, house remodeling (they built their own home... as in laid the foundation, framed it, floored it... each and every single part of their house was built by their own hands... including pounding the thingmys for the dock (brain twitch, sorry), building the pool... and they painted/ maintained/ & repaired the sucker for over 50 years. He gave up surgery in his 70's, but still kept his practice going (housecalls and the like) for another 15 years.

YES there was a smell... it was the smell of adhesive and disinfectant. Never any "bad" smells... just a medicinal smell. I'm sure he had a bag break at sometime in the 40 years he had the bag... but we never knew about it. Heck, *everyone* has something yucky happen to them from time to time (even if it's just the post pregnancy dinosaur farts).

It was just a part of his life. It in no way defined his life.

I have a dear friend that has a stoma. She is 77 years old and cares for it well. She cleans it twice a day and buys a boat load of baby oil. She's had it about 10 years now. You wouldn't know she had one. (She does wear a little bit too much perfume but i think that may be more personality than anything else, lol)

I will tell you she cries regularly about it. I think part of the reason is the disease has simply moved onto another area since this area was removed and she is still dealing with it there. She now believes that she could have done some natural things to help with the Chrohn's as she is getting better now. I personally think all areas can heal and that all parts of the body are essential however, if he has made up his mind to have it removed, he can care for it without the horror stories told. It will be work, but my friend has only had her bag break once and fortunately she was close enough to the car no one knew. If he really wants to know what it's like he needs to talk directly to those that have had it done. I'm sure the doctors can wait until he's exhausted all doubt.

God bless,

M.

I know this is something that does not come lightly. My sister-in-law suffers from Crohn's disease. She was at this point some 10 years ago. She now has a remicade treatment every 6 weeks, and, has been able to keep her flare-ups under control. She has been having the treatments for this many years. She also conceived a baby, and nursed a baby for a year during the treatments. Her doctor is in Houston. She said many doctors do not know enough about Crohn's, even the ones that treat Crohn's. Simply because there is not a lot of research out there for Crohn's. I don't know how open your father is to more treatment. I'm just saying that my sis-in-law was at the point to have the surgery. Her and her hubby prayed and prayed and knew that was what was gonna happen. Then, this option came up, and, they tried it. It has worked for a decade now, and, it looks like it will continue to work for a long time.

Good luck to your father, no matter what happens.

http://www.remicade.com/remicade/crohns/crohns_index.html

Accidents happen, you learn, then move on. My MIL had 6 inches of insides left that basically went from her stomach to her side. She went around and taught people after the nurse because most of these nurses don't really know that much about the actual living with the results of the surgery.

Find a support group and attend, these are the experts, they have lived it, they have made every mistake, they have succeeded.

Most people I know who live with bags, cleaners, deodorizers, glues, water bottles in the purse to rinse the bag, stoma caps, drain clasps, etc...all the things that can go with the daily living have lots of trial and error to find just what fits them perfectly. There are many companies out there that will gladly send you trial supplies to help out and keep the cost from being enormous. They want to know what works and what doesn't before they spend tons of money marketing something that isn't effective. There are many ways to look at this, he is going to feel so much better and be able to live life again with less pain and episodes....

L.,
My husband & I work with a man who has a colostomy due to Crohn's and he works, plays and lives a completely normal life! You'd never know it--but you know how the office rumour-mill works. He's fine in every way and we've never heard O. horror story from him. Best of luck for your dad and I'll keep him in prayer for a speedy recovery and adaptation!

my momjust had her bladder removed on june 3rd of this year. it's not the same as a coloctomy but she has to deal with the bag for the urine. she is 78 years old so this is a shock to her. she was in the hospital 45 days and isnow home. she has been home a week and i doing very well. she has a visiting nurse come in twice a week to help her. she has done very well learning how to change the bag and to take car of her self. she likes wearing the adult diapers for just in case accidents. and we gother a full length mirror that hangs over the door so sh can move it ifshe wants. we also got her a plastic three drawer stand on wheels for her supplies. she also has a wound vac in so se has to deal with that for another month or so. the vivisting nurse assured my mom that the smell my mom smells can't be smell by others. i really wish you and your family good luck. if you have any other question that i might help with jut message me and i'll try to help!!!