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advice on living with a bag


Wed, February 29, 2012 2:39 AM

Hi,

My sister just had emergency surgery early this morning for a perforated colon.  Now she has some sort of bag until the colon heals and further surgery can be performed.  I wondered what encouraging ideas, tips, and suggestions could be passed along to help her adjust to this.  I know it will be very difficult to deal with, as she is only 23.  Thank you!

FPO miss kate
Joined May 21, 2010

Tue, April 24, 2012 10:06 AM

 Reply posted for jlash.

I know I am late in responding to this, but I just signed up as I am looking for some advice, encouragement. I have Crohn's and was diagnosed when I was 13 and am 29 yrs old now. I have sever Crohn's and always having issues. I had a colon resection in 2004 and had the temporary bag, It was not fun as I was in college and just did not know how to handle things. I only had it for 3 months but it was hard. I am actually having issues right now and lets just say its not good and may be having surgery to remove my colon, rectum. I am very nervous and scared as I just don't want to have the bag, but at the same time if it makes me feel better and my quality of life will improve then I think it will be good for me to go through with it. Its just hard as I am unemployed and looking for work, but at the same time can't commit as I am afraid I'm going to not be able to be there 24/7. Plus I am single and just the thought of having the bag and trying to find someone is going to be hard. I am looking for any advice as I just don't know what to expect with having a permant bag. Thanks!! Jennifer

FPO jbeaner22
Joined Apr 24, 2012

Wed, March 14, 2012 6:04 PM

 Reply posted for Miss Kate.

Hi Miss Kate, 

That is really tough news to say the least on what you sister has had to go through!  I have had Crohn's Disease for a long time.  I was first diagnosed after a year of knife stabbing stomach pain in 1987, when I was 21, now I am 46.  Yeah, its not a fun way to spend your early 20's for sure.  I was in the hospital for 2 weeks, had  a operation and all was great.  I got a great job as a police officer in 2003,  I eventually started to have to get multiple operations for the CD and in 2007 I had to retire/medical disability.   2009, I needed to get a permanent colostomy, I had my rectum and most of my colon removed.. I  was pretty confused by it at first to,  but as I educated myself about it, it made total sense. Just the fact that I feel so much better now, and was in rough shape for  8 years,  I couldn't be happier.  I know all  the testing stuff stinks, I have had it all, but its best to be aggressive so to find out what the extent is.  My ostomy is a two piece, so I just take of the bag when its full, and can quickly replace with a new one in a minute!  You can be just as active as ever with the ostomy bag, hockey, bike riding., running, driving a race care,  I did that with the ostomy!  Also, from a cosmetic standpoint, you can talk to someone for any lenght of time, and they will have no idea you have one!  Let me know anytime if you wold like more advice on the ostomy, and certain;lu support!  Also, every case is different!, don't forget that, and have the doctor's explain everything and express all your concerns to lesson the anxiety.   

 
Andrew

FPO hockey rocks
Joined Aug 5, 2009

Sun, March 04, 2012 5:28 PM

 Reply posted for Miss Kate.

I assume your probalby talking about an Ostemy bag.

I had a similar thing happen to me last April, and was in bad shape for about 8 months.  They removed 6" of large and small intestine, and I ended up with an Ostemy bag for about 6 months.

It's not easy, I am fortunate to be married to someone who is wonderful, and helped me through everything because I don't know how I would have done it alone.  It took some time getting used to, and getting the correct appliance to fit.  This will sound strange, but make sure she get's a belt for the appliance, it helps out keeping the thing attached tremendously!

Give it time, and be there for her, she will need the help.

FPO jlash
Joined Mar 3, 2012

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