Update on my brother

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Regular Member

Date Joined Dec 2007
Total Posts : 68
   Posted 3/19/2008 10:11 AM (GMT -7)   
Hi All,
Just wanted to give an update on my brother since you all have been so caring and wonderful throughout his ordeal! 
He's been home now for about a month...eating and gaining some weight back and his open wound is starting to scar over finally.  His biggest problem is he can't sleep.  He has tried every medication known to man but nothing works.  He is obsessed with his bag and convinced it will leak every 2 minutes.  Sure enough at 6am this morning it leaked everywhere which really ticked him off. 
We met with a different surgeon (same hospital) and my brother seems more comfortable with him.  They scheduled the barium enema for 4/21 to see if the leak/hole in his colon is healed and the reversal can be done.  He's convinced that it won't be healed and he'll have to wait a few more months or have another surgery to fix that.  I guess we'll just have to wait and see.  He's an electrician so working with the bag poses a huge problem for him (tool belt, crawling through small areas with wires, etc).  He's already been out of work since the end of November and he works for himself so if he doesn't work he doesn't make $$. 
I'm glad that he's on the mend but it's very frustrating for him and our family. He's been trying to get out and visit with people, go shopping, etc. but it's tough on him.  I'm just praying that the hole is healed and he'll be able to have the reversal in May.  Ugh!  Thanks for all of your thoughts and prayers and for helping me/him through all of this.  Maybe someday we can all look back on things and laugh right?!!   :-)

Regular Member

Date Joined Jul 2007
Total Posts : 280
   Posted 3/19/2008 3:18 PM (GMT -7)   
Glad to hear your brother is on the mend finally and getting out. Can he talk with the ostomy nurse at the hospital where he had the surgery and ask for different appliances that might have a better seal so he doesn't have to worry about leaks so much? Sorry to hear he's having trouble sleeping, is it insomnia or fear of a leak? Maybe it's best that he's not back to work so he can continue to gain strength and nap whenever possible, and take on smaller jobs at first?
He's been through a lot and it wouldn't be surprising if he's unable to return to work until after his final take down.

I think all of us had a hard time adjusting after surgery, but it will get easier for him in time and I'm sure there are people with permanent ostomies that work in similar fields. I think someone here on the boards said that they are not going to let the ostomy stop them from living a normal life and hearing that made me step out of my "comfort box" and do everything I did before the surgery. It's all about acceptance and that comes with time, and at least I know that if my take down doesn't work out, I can still function perfectly with an ostomy.

Keep up the patience, your brother is lucky to have a sister that cares so much and I hope he continues to do well and his surgery is a success! :-)

Originally diagnosed with CD in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 3/19/2008 4:37 PM (GMT -7)   

I am glad to hear that your brother is doing better. Please keep us updated. And let him know that we all wish him well.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Regular Member

Date Joined Nov 2007
Total Posts : 128
   Posted 3/20/2008 8:36 AM (GMT -7)   

Thank you for updating us! I've worried about you guys and how your brother was holding up. Unfortunately, worrying about the bag leaking and not getting sleep because of it seems to be pretty normal. It wasn't until about a month ago that my body finally allowed me to sleep "normal" hours again. Still gets chopped up sometimes though. It's so important to really let stress roll off your shoulders and just relax. When our bodies are tense and our minds are stressed, sleep is usually the first thing to get affected. We can stress over money, health, and the future until our heads pop off, but it's important for him to try to take it one day at a time and know that everything will work out. Look how far he has come!

As far as work, he'll get back to it before he knows it. You'd be surprised the occupations and hobbies people with ostomies can resume after surgery. He may want to look into something that he can wear under his shirt to hold the bag in place. I wear a form fitting tank top under everything and I never have any problems. Has he tried his toolbelt on to see if it would sit right on the stoma?

Aside from maintaining a healthy diet that promotes healing and following doctors orders, he really just has to wait it out. He needs to understand that stressing himself out and worrying about the what ifs isn't going to help him recover quicker. One day at a time. He'll get there. No need on getting gray in the process!

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 3/21/2008 8:10 AM (GMT -7)   
wendy, ur a great sister, and tell ur brother it will get better, eventually
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

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