j pouch not working should she go to colostomy bag

[worrieddaughtertoo]

my mother has had a j pouch for 12 years and she has been a shell of her self she seldom leaves her house fear of leakage and if its not leaking she is so stopped up she stays sick and actually throws up the contents of her stomach. I am wanting her to get a colostomy bag and maybe she will become healthy again. I am so worried.can someone tell me the advantages to the bag besides the obvious that her pouch is not right.

                                  thank you so much.

[LynMac]

2 things:  Has she tried lomotil ?  I take two .5 tablets a half hour before each meal and two before bed.  That helps a lot.  ( I have had a pouch for 15 years.)
     Secondly, has anyone ever suggested that she have a temporary ostomy (for maybe 6 weeks) so that the J-pouch can heal?  If she had her surgery in one step the pouch may not have ever healed.
     Most importantly, your mother needs to feel control over her life.  She can not continue this way. She needs to feel healthy. For heaven's sake, she's only 60 and could conceivably live another 20 years !
  I think her doctor is right, it needs to be her decision.  But maybe they can pursue the option I mentioned above.
      Sometimes a doctor will give her opinion more readily if you ask "What would you recommend if I were your Mother?"  
You have my heartfelt thoughts for your mom's recovery.

[worrieddaughtertoo]

no there was nothing because she just wanted them to fix her. And yes she has been treated from chrons recently. But they will not know anything for sure until they can get that light all the way up her rectom and actually see what is going on. She does have a dr. now that seems to listen he thinks she needs to have the j pouch taken completely out and have the out side kind but he is putting it all up to her and she is trying the meds for a little while longer but it dont seem to be making a approvement. I know she is just scared but I just want her healthy.And thank you for your input I really appreciate it.

[TrudieC]

That is awful!  Was she able to get any compensation for their errors?  She needs to see a good gastro doctor.  Is she being treated for Crohn's?  If they can get her under control with some prednisone they may be able to then get her onto an immune suppressant that may help put her into remission.  For surgery they need to know where she has active disease before any surgery as the same issues will happen with an ileostomy if the disease is not managed.  They also won't want to get rid of much colon since she needs as much of her small colon as possible in order to absorb nutrients.  

[worrieddaughtertoo]

she has been on all the drugs including cipro and the other one that starts with a F sorry forgot the name she has been on so many she has to metmucil and immodium  It depends on what she is doing at the time having complete drainage or complely bocked up to the point she is in the hospital a week with a tube down her nose trying to get the stuff out of her. the problem is she had it done in cleveland and now she has a medical card from another state and they wont take her. and her dr. does think she might have crohns but when they try to do the test she has ulcers so bad they can't get 2 inches into her rectom. when she first had it done they had a intern run the light and he put a whole from her recton through her vagina and they had to fix it now she has never been right and they dont want to deal with her. I am just worried she just keeps loosing wieght and she does not eat anything gasy or spicy or anything. She has tried it all. I have tried to get her to come to my house and get on the computer and talk to others with it but she will not even get out of bed most of the time because she has to leave something under her because of the leakage. She is not even 60 yet and I am truely at the end of my rope trying to figure out what to do for her. thank you for responding. I want her to be able to play with her grandchildren and right now we might be lucky if she can once a month.

[TrudieC]

What does her doctor say about the pouch?  I am shocked that she has gone this long with problems.  I had mine done 16 years ago and after the first year she should have been doing well.  Has she made adjustments to  her diet?  Does she take immodium when necessary?  There are a lot of things to try before going to an ileostomy.  Encourage her to come on and discuss and to get a thorough check up with her doctor.  It is important that they determine if she might have Crohn's now which is affecting it.