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aarchi
New Member


Date Joined May 2011
Total Posts : 12
   Posted 5/25/2011 11:08 AM (GMT -6)   
Spoken to the doctors n they've suggested a permanent ileostomy not reversible, Can someone explain how it will be after surgery please.

Post Edited (aarchi) : 5/25/2011 10:57:46 PM (GMT-6)


aarchi
New Member


Date Joined May 2011
Total Posts : 12
   Posted 5/25/2011 12:49 PM (GMT -6)   
Nascaron Im asking as much information someone can give me, it would be appreciated.

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 5/26/2011 12:58 AM (GMT -6)   
aarchi
First, you will forget where all the public restrooms are. Second, long car trips will be shorter in time. You will delight in passing rest stops. You will get used to having the pouch and will learn how to care for your stoma and pouch. A lot of trial and error and help from this website. You will have get to used to going wherever you want and whenever you want. It is not all peaches and cream, but the positives outweigh the negatives. At first you will have leaks and blowouts in the night. But you will figure out how to fix it. You will have skin ulcers but will find out what to with them. All the problems with an ileo are less than with UC or whatever your problem is.

Dan

aarchi
New Member


Date Joined May 2011
Total Posts : 12
   Posted 5/26/2011 2:30 AM (GMT -6)   
Thanks Polishdan :)

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 5/31/2011 1:41 PM (GMT -6)   
     And...remember to chew, chew and chew your food...don't swallow big chunks.  It will take time to recover but in the long run, you will be sooo happy you made this decision.

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 5/31/2011 2:03 PM (GMT -6)   
hi aarchi, i have bumped another recent post 'j-pouch vs ileostomy ... ' to the top of the list for you - it has answers from some perm ileo 'owners' & it may help

i see you are in East London & i'm presuming it is London, UK : have you contacted the IA (Ileostomy Association) http://www.iasupport.org/forum/default.asp - they are v active in the UK & in Ireland where I am - they have a forum & can arrange a knowledgeable visitor to talk to or meet

hope this is of use - cheers
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/31/2011 2:28 PM (GMT -6)   
aarchi -- my husband is only 5 months now with his permanent ileostomy and there is absolutely no looking back whatsoever. His life (and mine) are so much better in just this short amount of time even with the surgery, healing, a few trial and error happenings. He is out golfing today for the first time and I hope he had a blast.

Life is good once again and we look forward to each day. As Dan says no more constant pre-occupation with bathrooms. At one time his UC controlled him....he is now back in control and it really feels great.

He wishes he had the surgery sooner...but he was NOT ready sooner. It had to be when he was ready. He found a way to live with it with a dependence on pain meds as the heavy duty meds were doing less and less. Failing remicade was the last straw and pain medication needing to be increased that it was time to agree to the surgery.

Do alot of homework and research so nothing is a total surprise. There are a lot of wonderful people who have videos on you tube. Once we actually saw a stoma and what a wafer and pouch were all about and looked like and how to change, it took all the mystery and fear away.

Before he went into the hospital I lined up an account with a supplier and got the info needed so I wasn't scrambling once we got home. He did have a health agency nurse come in and they got us initial supplies to supplement what the hospital discharged him with.

But having the account already set up and our insurance approved just made it easier to have it in place already.

Good luck. This forum will certainly be a big help for you when you have more questions or confusion which we all had and still have.
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.

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 5/31/2011 3:08 PM (GMT -6)   
UC Wife - you may not realise it but your troubles are only starting now - you'll be trawling golfing sites & forums from here on to find out how to get you husbands swing & putting right !!!!!

apologies for going off topic here - cheers
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/31/2011 10:07 PM (GMT -6)   
villager said...
UC Wife - you may not realise it but your troubles are only starting now - you'll be trawling golfing sites & forums from here on to find out how to get you husbands swing & putting right !!!!!

apologies for going off topic here - cheers
 
We are retired and live in a golf community with many golf courses and so happy he can start enjoying them once again.   He got a par on a par 4 hole today and did well for being off the course for so long.  He's happy and I'm happy!!!
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