Internal J-pouch vrs. ostomy

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Sofee
Regular Member


Date Joined Sep 2009
Total Posts : 90
   Posted 4/2/2010 9:58 PM (GMT -6)   
So here I am bouncing back & forth from the Crohniee site to this site.
I am suffering from a very bad bad bottom problem it is burning pain and non stop D.
I live off of butt creams such as zinc oxide and 2% xylocaine jelly.
My days are not bad but the evenings are the worst.
I have a lot of stress in my life lately (just recently seperated with my husband - his decision)

I need to know if there are any people out there that have had the j-pouch and most of their colon removed and opt to get the ostomy permenently. I am worried and afraid that this may be my only option to get my life back.

My GI is thinking on starting me on Humira. Will that reduce my BM's? Is there anything that will help me?
It is getting to the point where I just don't even eat anymore. I feel like I am wasting away.
Codine (Emtec 30) is the only thing currently that has been my saviour for quite a few years now.

I had an ostomy in 1998 for about a year and it was awful. I don't want to go back to that.
It really was no different. My bag leaked many times, it was noisey, smelly, demoralizing, not to mention the intimacy issues in the bedroom, and my self esteem was zip. It made me feel so embarrassed about myself.

How many BM's is normal for people who have a j-pouch?
Do many j-pouchers suffer like me?
I was doing fairly well for a few years unitl I was dx. with Crohns.

What is your advice for me? What do j-pouchers who have Crohns do? How is it manageable?
33 yr. old female CANADIAN
dx with UC October 1998
had temp j-pouch: '98-'99
disease free & back to norm: '99-'07
dx. with CD March 2009
Currently taking: Remicade mthly & Imarun


In my next life: I want to be a big beautiful oak tree or something like that... so I can live off of just sunshine and water.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 4/3/2010 8:01 AM (GMT -6)   

The jpouch is not recommended for people with Crohn's and you can meet several jpouchers at www.j-pouch.org who had the jpouch surgery as they were dx with UC only to have multiple problems and then were later dx with Crohn's.  Many of them converted to a perm. ileo and are very happy.

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


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/4/2010 4:29 AM (GMT -6)   
Sofee~I am sorry to hear you are dealing with so much right now.

I am sorry that I cannot help with the Humira question~I've only tried Remicade and it only worked for a few months...but those were great months!

Like suebear said, j-pouches are not recommended for Crohn's patients:( I am sad to hear you had such a difficult time with your ostomy, too. Were you able to see a WOC Nurse for proper fitting? Usually, a high amount of leaks, like you indicated, is a result of an improper appliance or a correction needed to the stoma itself (if it is small/flush with the skin it will leak).

I am a Crohn's patient who lived with constant D for sometime before have my temporary ileo surgery...I had had one prior to that from surgery complications so I knew I could have my quality of life back...and in the last two years decided to go 'permanent'. For me, it was the best decision of my life and I do not regret it...but I also had a positive experience the first time around.

I would suggest talking to someone about your fears. Quality of life is VERY IMPORTANT, for any person, and when you don't have it suffering is horrible:( You could ask your GI about ostomy patients (who maybe experience issues that have gotten under control) that would be willing to talk or see a professional.

(((HUGS)))
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 4/4/2010 6:50 AM (GMT -6)   

And a permanent ileo is much easier to handle than a temporary!

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


Sofee
Regular Member


Date Joined Sep 2009
Total Posts : 90
   Posted 4/4/2010 2:07 PM (GMT -6)   
Oh okay, ... I guess I will have to do some reasearch and ask my GI some questions about it.
And yes my stoma was small and very close to my skin. Which caused the output to like "eat away" at my skin.... and there was many problems when that started happening. I'm lucky that my scar is not too bad as I thought it was going to be way worse.

I just don't know if I can do it PERMANENTLY. That is a big decision for me. Because once its done I am assuming there's no going back?
How is a temp. different that a permanent one? Isn't it the same thing?
I am so afraid that I will never be in a relationship because of it. My self esteem is low enough already.
There is an ostomy support group here but I am embarrassed to go to it.
I'm sorry its just a very hard thing for me to deal with. It makes me cry every time I think of it.
I know and have read many success stories about the switch to go that way and I am glad that there are people out there that are doing well with it. It does make me somewhat hopeful. I just wish (hope) that there would or will be another option for me.
33 yr. old female CANADIAN
dx with UC October 1998
had temp j-pouch: '98-'99
disease free & back to norm: '99-'07
dx. with CD March 2009
Currently taking: Remicade mthly & Imarun


In my next life: I want to be a big beautiful oak tree or something like that... so I can live off of just sunshine and water.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/4/2010 6:14 PM (GMT -6)   
If you were having lots of leaks and odor and stuff, you had something wrong with your system, you shouldnt have any odor, and leaks do happen but you shouldnt have them very often.
If you do end up goingback to the perm ileo, you need to experiment around and get a system that really works for you!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-

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