please tell me about jpouch

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peverroad
Regular Member


Date Joined Nov 2008
Total Posts : 28
   Posted 12/22/2009 8:39 AM (GMT -6)   
i know i can read the other things and jpuouch.com but had some questions about it still.
do you still have urgencey with jpouch.  That is my biggest problem. 
is it hard to ajust?  what changes have you had to make.
there is 3 surgerys right? why not just 2?
 
i have uc and have ben uncontrolled for 6 years.  pred makes me start to fell better and then it goes down hill.  i am going to try the iv meds but have already tried everything else.
i am really considering surgery but my DH wants me to try everything else first.  i have 25 and have 2 boys.  He is afriad while i have the bag it is going to be unsexy or unactrative.  (i feel this way and he has picked up on it)  i think i am going to feel gross with it) afraid i wont be able to do the things i love but i know i have to do something because i am to the point were i am afraid to take my boys out by myself beause i feel like i am going to have an actident or have to run to the bathroom and wont be able to take them and get in trouble. 
i am just so lost and dont want to make things worse than they are.
6mpdidn't work for me cause terable belly pain
3 asacol x2 day
probitics
 
dx in 2004 took a year to figure out.  Never lived in complete remission but good enough to work.


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 12/22/2009 8:09 PM (GMT -6)   
Hi. My son has had the first of a two step J pouch. The first operation was just to remove the diseased colon and allow him to regain his health. He was given an ileostomy. This surgery has done wonders. He is HEALTHY and feeling great. Of course, he would rather not have an ileostomy but I must say he as adjusted to it better than I would have thought. His next surgery will be the building and attachment of the J pouch. A lot of doctors will build the pouch but keep the ileostomy for a few months while the pouch heals and then reconnect. Our doctor, who is one of the best in her field, does those two steps at one time ( if she feels the tissues are healthy enough ). It is personal preference of the surgeon if they do this second part in one or two steps.

My son will not have his J pouch until January so I can only tell you what I have learned from others. Immediately after surgery, for about a month or so, I believe there can still be urgency but that will stop. I am told that in the long run there is no urgency and that you will have a bowel movement about 5-6 times a day but that these are really not an issue....just like urinating...how any times a day to you do that? I bet you do not even know.

You really need to look at the ileostomy as something that is giving you your health back and I would think that your husband would be thrilled by that. It truly is not messy or smelly and there are little tiny bags (that they call caps) that you can use for those "private" moments. Summerstorm is someone who has had a permanent ileostomy for many years and loves it...again because it has given her her life back. She is a young woman with small kids and is married. Hopefully she will be by and give you some more insight into life as a woman with an ileostomy.

Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 12/22/2009 8:17 PM (GMT -6)   
Hi Peverroad,

Welcome to Healing Well! I had part 1 of 2 of my jpouch surgery in October. I currently have an ileostomy bag and will have my reversal in January. While you have the ileostomy bag, there is no urgency because all of your output goes into the bag throughout the day. I have heard that after the reversal surgery, people go to the bathroom 8-10 times during the first year. This number usually goes down to 4-6 after that but everyone is different. I have heard that you have "wait" time from when you get the urge to go before it actually comes out as opposed to having an accident. I don't know personally yet... The surgery can be done in 1, 2 or 3 steps. I believe it is rare to have it done in 1 step but is done in some parts of the world. 2 step surgery is probably the most common. During the first surgery, the surgeon creates the internal jpouch and brings a small piece of your small intestine outside of your skin (stoma) which is where the ileostomy bag comes into play. After your insides heal (usually 2-3 months), your surgeon can do the second surgery called the takedown or reversal. This is when they bring the stoma back in and reconnect everything internally.

For me, I know this is the best thing I could have done. I also have 2 kids, 2 little girls and I am 31 years old. It was very hard for me to get out with them because I was afraid of having accidents. My quality of life was so compromised but now I feel great! I do pretty much everything I used to do. I agree that the bag is not sexy nor is it attractive. However, that doesn't matter when you get your health back! I am more paranoid about it than my own husband, lol.

Good luck to you with whatever you decide:)
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 12/22/2009 8:24 PM (GMT -6)   

I have had my jpouch for almost 9 years.  After a period of recovery, there is no urgency and event the post urgency I did have is not like UC urgency.  My life has been fantastic post surgery; I am very physically active and travel abroad frequently.  I eat everything and take no meds.  I am thrilled with the results.

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

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