Colostomy bag vs Jpouch

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Red_34
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Date Joined Apr 2004
Total Posts : 23547
   Posted 1/27/2008 7:49 AM (GMT -6)   
I'm new to posting on the Ostomy board but definately NOT new to HW as you can tell.   :-)   I've been following TheLori's post very closely because like her, I have Uc and I'm contemplating having my colon removed in the future.  I am getting tired - tired of Uc, tired of medications, tired of the daily grind of it.  I'm ready to throw in the towel - I think having it for 15 (almost 16) years is long enough don't you???  :-)
 
Just so y'all know, I've already been on the www.jpouch.org site and read most of their posts but I couldn't find one that compares the quality of life for having a C.bag as opposed to the Jpouch. 
 
Is there anyone here that has had the Jpouch only to regret their decision after the takedown?  Can someone tell me the pros and cons of both?  It would be nice to hear both sides of the table if you know what I mean?  Many thanks!  yeah
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
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"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/27/2008 8:15 AM (GMT -6)   
Sherry,
I am sorry you have suffered sooo long. 16 years is a long time. I would be tired too. Just wanted to say "hey"! I have an ileo so I can't answer your questions but I'm sure someone here can. BUMP your post in a couple of days if you don't get your answer.  If I remember correctly, Suebear has a jpouch.. I hope she will chime in on this. 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

Post Edited (peggy113) : 1/27/2008 7:18:11 AM (GMT-7)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23547
   Posted 1/27/2008 8:36 AM (GMT -6)   
Thanks Peggy. Yeah I know Suebear has the Jpouch and is quite happy with her decision. I think the fear I have is that if and whenever I have the surgery that if I chose to do the Jpouch that it wouldn't take. I know that if that was to happen then I could always revert back to the bag. But I'm not sure I would want to go thru that ordeal or what........I guess I'm still exploring my options.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 1/27/2008 7:11 PM (GMT -6)   
As you know, there's no guarantee that the j pouch will or won't work for you, it just depends on whether you're willing to take the risk:) Most on the j pouch board will say you might as well try it and you can always revert back later if it doesn't work (however this does mean yet another surgery). It's really an individual choice.

One the j pouch board, there's actually a section for those with ostomies and the majority of the people posting there (except for me) are those who have had a failed j pouch and reverted back to ostomies. You'll find that by and large, they're much happier with their ileostomies than their failed j pouches, but I guess that's only natural.

To me, the pros and cons are:

Pros and cons of having an ileostomy:
You're 'cured' of having UC
You have to wear a bag full time
At first, until you find the right appliance for you, you'll probably have a few leaks which leads to skin irritations
Only one surgery (unless you have your rectum removed in a later, separate op)
Appliances will cost you money (if you live in the US). How much seems to depend on your insurance.


Pros and cons of a j pouch:
You're 'cured' of having UC
You don't have to wear a bag
There's the likelihood of at least one bout of pouchitis (usually cleared up with antibiotics)
There's the likelihood of Taco Butt (aka Butt Burn aka Burning Ring of Fire) - eased by various creams
Usually takes at least 2 operations, if not 3
You can always revert back to an ileostomy later if it doesn't work out

That's all I can think of at the moment - others may be able to add to either list.

Good luck with your decision.
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!


chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 1/27/2008 10:07 PM (GMT -6)   
I thought I would share my thought process. I have not had my surgery yet but have decided to do it in Feb. I am meeting with a surgeon this week to finalize. Anyhow, like you, I have read the disadvantages/concerns with j-pouch. I have to have a 3 step surgery for j-pouch anyway so I decided to say that I will do the j-pouch (so they keep my rectum or whatever that I need for jpouch) and then if I love the bag then I will have have a 2nd surgery to have a permenent bag. If I hate the bag, then I can opt to have the j-pouch and try it. I feel like I have heard so many people that get the bag and love it but then I have read that some people get the bag and hate it. So, I thought that I will really not know for sure until I have it and have to look at it and take care of it everyday. That was the closest "win - win" and safe choice that I thought I could do. By the way, I just do not see how you have lived with the UC roller coaster for 15 years. YOU are a trooper!
Pancolitis - July 2006
Medications:  Predisone - 5mg ,asacol - 12 tablets per day
Supplements:  multi-vit, calcium, folic acid
My wish:  get off prednsione....been on straight since 8/2006


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/27/2008 10:14 PM (GMT -6)   
chilii was going to say the samething, you can always keep the bag if you like it!
I chose not to go with the J-pouch because i didn't want two surgeries, i have a small child and recovery from one was enough, i also didn't want the time after the j-pouch surgery where you have to go to the batrhoom ALOT. To me, the fact that alot of people with a j-pouch still have to go 4+ times a day, didn't really solve my problem. Also i was worried about it failing.
THere are good things about it though. You dont' have to wear a bag, which means you dont' have to buy bags or worry about leaks.
but the bags rarely leak, and it isn't bad at all wearing one, once you have had if for a while, you will forget it is even there.
good luck!

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23547
   Posted 1/28/2008 6:40 AM (GMT -6)   
Chili, as far as I know, keeping the rectum is not ideal for a Uc'er because the disease can still attack the rectum so they would have to create a new one out of your small intestine. But I will cross my fingers and hope that your surgery is uneventful!

Shaz, thanks so much for the pro's and con's list. It helps me put things in perspective. If and when I have the surgery, I would be on the fence about the jpouch. Because on one end, I'm not sure if I couldn't handle life with a bag but then again, I don't want the inconvenience of going to the bathroom frequently like with the jpouch. I've had enough of going to the bathroom thru all these years! :) I know that quality of life with the jpouch doesn't even compare to one that has Uc because there is no pain nor urgency.

Summerstorm, thank you for sharing your thoughts. I guess the idea of wearing a bag just seems so "foreign" to me at this time so I can't see how I would get used to it - though I know I would eventually! :)

You all have given me much to think about. I would call up the surgeon today if I had a choice. But I have to make preperations at home for someone to care for my grandmother. I am her primary care giver since she has early alzheimers and is legally blind. But I'm looking in the next year or so to hopefully have it done.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


chili123
Regular Member


Date Joined Jan 2007
Total Posts : 300
   Posted 1/28/2008 8:22 AM (GMT -6)   
Red_34
You may be right. I just know that there is something that they "keep" in you IF you choose to have j-pouch and something that they take out IF you choose to have a permenent bag. I just know that if you get a temporary with the intention of having a j-pouch and then "change your mind" then they have to go back in and take something out. I thought it was the rectum but I am probably wrong on what part it is. Anyhow, that is the route that I plan to take so if I like the bag then I will keep it and if I hate it then I will elect to continue to go for the j-pouch. It is certainly all a big decision so good luck.
Pancolitis - July 2006
Medications:  Predisone - 5mg ,asacol - 12 tablets per day
Supplements:  multi-vit, calcium, folic acid
My wish:  get off prednsione....been on straight since 8/2006


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 1/28/2008 8:27 AM (GMT -6)   
Sherry,

I am not trying to sway you to a jpouch but I do want to clear up some misperceptions. While frequency may be high it's not like sitting on the toilet with UC. It takes as long to empty a pouch as it does to urinate.
Do you know how many times you pee per day? Doubtful. That's why it's hard for me to say how many times I empty my pouch per day. I have no idea. I do know that many times I go to the restroom to urinate and discover I need to empty my pouch too.

The other misconception is with failed pouches. Generally 95% of jpouchers are satisfied with their surgery and all of those who have had failed jpouches were happy to have given it a shot. The jpouch surgery has become the gold standard of all surgical choices for UC. Does that mean it's the best, NO. What is best is for each surgical patient to determine their lifestyle and make their decison based on that. I wouldn't worry about 2 surgeries for a jpouch. The first surgery is the major one, the second surgery is just closing the temporary ostomy. Not much involved but sewing up a 3 inch incision in the belly.

It is your choice and ultimately you have to be happy with the surgery type you choose. It will make your recovery easier if you are vested in the choice. I would suggest you meet an ostomate and a jpoucher face to face before deciding (when you get to that point).

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
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23547
   Posted 1/28/2008 8:59 AM (GMT -6)   
LOL Welllll I am just not the kind of person who gets lucky so with my luck I would fall into the 5% that have their jpouch fail! (joking) :) Much to think about for sure. Sue or to anyone else - I keep hearing about pouchitis as a possible complication, can someone explain to me what that is and what does it feel like?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 1/28/2008 9:09 AM (GMT -6)   
Pouchitis is similar to having the flu. Diarrhea, possible fevers, and cramping. I have never had it but this is how it is described. It is cleared up with an RX of Flagyl or Cipro. In 1% of pouchers it is considered chronic.

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
 


DW38
New Member


Date Joined Jan 2008
Total Posts : 16
   Posted 1/28/2008 6:23 PM (GMT -6)   

Sherry,

i have gone through the first surgery, and have adapted to my ostomy quite well. I thiink i'll miss it when its gone. But I also look forward to using my J-pouch. I empty my bag about 10 times daily, and i think it would be easier to just sit on the toilet, and go, than to have to clean the opening of the bag. When it gets full it get a little noticable under my clothes. Like they say, its your choice. For me, the bag isnt that bad. Its not at all like some people say. The main complaint i have right now is the diet. There are some foods that i cant eat yet, because they can cause blockages. As for the pouchitis, just watch some of the foods you eat, and chew well. nothing that can scratch the inside of the pouch.
Good luck with whatever choice you make. keep us all informed.


Ulcerative Colitis for 15 years.
Asocol     librax
colazal    levbid
lialda      imuran
prednisone   remicade
lexapro (wonder drug)
December 21,07
Total Colectomy-Ileoanal Resevoir
Now drug free, and pain free
Reversal Scheduled for Feb 8th, 08
 
 

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