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michiecarmel1981
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/18/2008 2:00 PM (GMT -7)   
Hi I am sorry this is so small. I have a j pouch and I have had it for five years but have had complications with it. I keep having spasms and I keep having poop leakage.  I tryed biofeedback with two different specialists and it made me worse I have been getting severe nausia and stomach pain. I went to see my regular physicion and I was diagnosed with a anal fissure so I have been doing sitz baths for twenty minutes each day. I recently went to see my surgion and he has nothing left that he can do except another surgery but this time only to put a permiant illeostomy which I don't want at all. My parents keep telling me that is the only option that we can do.  I don't want to have to deal with the embarrasment of leaks and having to go into icky public toilets to emty it. I was happy when the surgion got rid of the illeostomies I had. I was free from the torture. It isn't fair that I have to have it again.  Now what started all my problems is I had ulceritive Colitis but I don't have it anymore. What my surgion wants to do is take out my J pouch completly. I asked the surgion what about making a new pouch so I would have it temperary the surgion said that it has never been done by him and told me about a surgion in Cleaveland Ohio the only problem is I am not from there and my Dad doesn't want to fly with me there to see that doctor and it would be hard for visitors to see me.  I am really sad is there any advice you can give me? mad mad mad mad mad mad

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5696
   Posted 1/18/2008 2:25 PM (GMT -7)   
First off, it's very hard to read your post due to the color of your font. From what I gather you might have irritable pouch syndrome. I don't know where you are in the country but I would highly recommend you go to the Cleveland Clinic for a full evaluation if you want to save your j-pouch. They have tremendous success with troublesome pouches. Outside of that your current doctor has said he cannot do more for you and you will have to respect that. Not all surgeons or even GIs have enough experience with pouch patients to help with difficult cases.

If you are intent with trying to save what you have make that trip to the CC. Be sure to take all of your medical records with you.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/18/2008 2:42 PM (GMT -7)   
If you want to save the j-pouch, talk to your dad and do the research on the Cleveland Clinic. They may be able to save the j-pouch.

Yeh, it would be hard to have visitors BUT, what is most important, your health/j-pouch or having friends visit you? Think about that for just a minute.... I urge you to just do the research. Who knows, it might end up being cheaper to get a 2nd opinion from Cleveland than to have to go through another surgery where you are located now.

Welcome to HW.com and please feel free to ask any questions you might have. Sue can answer with experience -- did you read the info under her signature?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/19/2008 9:52 PM (GMT -7)   
just curious, but why did you hate the ostomy so much?
but otherwise, i agree with both of them, CC is the best place to go. There is also a really good place in lousiana my surgeon told me about it, if that is closer maybe. They do a lot of jpocuhes there, and also the koch pouch.

DW38
New Member


Date Joined Jan 2008
Total Posts : 16
   Posted 1/20/2008 4:32 AM (GMT -7)   
I had my surgery in December 07 at the Ochsners Clinic in New Orleans, Louisiana. Yes, they have excellent surgeons. I'm not sure what their limitations are though. You can always look them up on the net, call their office and talk to one of the nurses. See if they do anything with cases like yours. My surgeon was Charles Whitlow. I've got the number if you'd like it.
Have they tried you on meds that help with smasms? like NuLev? They help relax the intestines from spasms.
 
let us know what happens....
Ulcerative Colitis for 15 years.
December 21,07
Total Colectomy-Ileoanal Resevoir
Now drug free, and pain free
Asocol
colazal
lialda
prednisone
librax
levbid
imuran
remicade
lexapro (wonder drug when you deal with
                    2 bipolar family members.)
Reversal Scheduled for Feb 8th, 08
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/20/2008 8:50 PM (GMT -7)   
that sounds like the name my surgeon told me, he did his training there.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 1/20/2008 8:58 PM (GMT -7)   
Hi MichieCarmel,

We spoke on a chat at another site last week :) If it's not possible for them to save your j pouch, please keep posting here - hopefully the wonderful people here can help you realise that having an ileostomy is not the end of the world, in fact it will be the start of a new one, a much better one without the complications you're suffering now.

It will be a huge thing for you mentally, but I don't think it's going to be anywhere near as bad as you're picturing. Permanent ileostomies are a lot easier to deal with than temporary loop ileostomies so even if you had a horrific experience with your previous ileo, dealing with a permanent one should be so much easier.

Good luck in whatever happens.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


michiecarmel1981
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/21/2008 9:14 AM (GMT -7)   
Thank you everyone for your advice. Please keep posting replys. I am still not sure about the illestomy but my gastro says that he will justify with my surgion then we will have a answer. I still feel uncomfortable with having a perminent illeostomy. How do you deal with emtying in on public toiets? That is one of my fears where I work they have discusting toilets? Well I have to go now but please reply thanks.

candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 1/21/2008 12:59 PM (GMT -7)   
Shaz - I'm curious....why are permanent ileostomies easier to deal with than the temporary loop ileostomies?  I have a temporary loop now.  I'm supposed to contact my surgeon for the takedown, but I'm chicken.
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