trying to decide if i want a j-pouch.

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lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 7/9/2009 10:04 PM (GMT -6)   
I was dx about a yr. ago with Ulcerative colitis.  Been in a flare for the past 5 or 6 mos.  Pred did not kick me out.  I have not tried any other drugs other than 5asa drugs.  They seem to do nothing for me.  I hap flex sig today and showed bad inflamation in my colin.  I really don't wanna take the immuno drugs.  I mentioned the jpouch to my doc today and he agreed it might be the way to go for me.  I thought he would say i needed to try other drugs first, but he left it open to me.  I just wanted to hear how others who have had the surgery feel about it.  Please let me know if you have had it....thanks

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 7/10/2009 7:26 AM (GMT -6)   
I love my jpouch because it has given me the freedom to backpack and hike to my heart's content. If you are seriously thinking of surgery you might want to look at all of the options; jpouch, k-pouch, and permanent ostomy. Make a check list of the pros and cons of each surgery. Talk to people who have had each surgery and then weigh your lifestyle with each choice. There is no perfect surgery for UC but there is a choice that is a better match for you and only you can determine that.

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


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 7/10/2009 9:29 AM (GMT -6)   

I agree with Sue.  There are a few options for surgery.  I understand your decision not to try the immuno suppressant medications...I had horrible issues with them myself. 

I have a permanent ileostomy...and I LOVE IT!!!  yeah    When I was faced with the decision of surgery I instantly thought I 'had' to have the j-pouch.  After some research I began feeling iffy about it and wondered about a permanent ileostomy...but did people actually 'choose' that?  I heard many stories about people deciding to keep the ileo instead of continuing on for the j-pouch because they enjoyed their lives with the ileo.  I spoke with some women on this site with a permanent ileo and learned that it is okay to not want a j-pouch.  smilewinkgrin    That made me so happy!

I made the decision that was right for me.  Sue made the decision that was right for her.  idea

All in all it really is a big decision, but most all of us can assure you that once your evil colon is removed you feel amazingly better!

Good Luck!!!!

smurf  


: )  Robin
 
29 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/10/2009 9:50 AM (GMT -6)   
just like robyn said it is a personal decision whether to have a jpouch, a kpouch or a perm ileo. you may not be a canidate for a kpouch and thats a surgery you really need to look into alot.
Anyway, as for the jpouch there are pros, like not having to wear an appliance and going to the bathroom the regular way (although to me, that was a big con, lol)
As for the perm ileo (what i have) there are pros, onlly one surgery, not having to worry about the jpouch failing (which doesnt happen often, but i didnt wanna take the chance)

either way, the colon is gone, and you are HEALTHY!!!
A perm ileo is not bad, its really rather convient, lol.

Jen_J
Regular Member


Date Joined Jul 2008
Total Posts : 25
   Posted 7/10/2009 3:07 PM (GMT -6)   
it's a tough decision. i think most people try the j-pouch first, especially nowadays when more doctors are trained on it.  me personally i ended up with an ileo because my surgery was done as an emergency to save my life and i just got whatever the on-call surgeon could do. i was PISSED, depressed, angry, moody, cranky, and an all around a big grump for like 6 months.  by the end of the first year i started to be okay with the ileo.  i could eat ANYthing.  and i did.  it was awesome. it took me a long time to try new foods cuz i was scared something would go wrong since i had such a limited diet with UC.  but all was fine. since my ileo i've done many things, including travel.  as time goes on, the decision to make a j-pouch gets harder for me.  maybe it becomes less appealing because i don't want to chance my good health.  each person is different.  some people get used to the bag or end up liking it.  others continue to wish for a j-pouch.  you could do your surgery in steps and try the ileo first, then decide on j-pouch or not.  definitely talk to a lot of people.  and make sure you don't have crohn's - although there is no foolproof way.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 7/10/2009 6:37 PM (GMT -6)   
My daughter had the j-pouch surgeries last year. For her, it was the best decision. She did try some of the harder-hitting drugs (which in the beginning we swore she wouldn't ever try). Unfortunately they didn't last long for her. She had a temporary ileostomy in between her surgeries. She never loved it but learned to deal with it. Hers was a loop ileostomy, which I understand has alot more output than an end ileostomy (which a permanent ostomy is). At least I think that is the case.
If you are contemplating surgery, speak to a surgeon (or two) and get as much information as possible now while you have time to process it all.
--Mom of bratcat (18 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect! Living and loving life as a teenager should!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 7/12/2009 4:42 PM (GMT -6)   
Lucas, I have recently decided to get the surgery -- I'm meeting with the surgeon for a consult next month.

I was diagnosed a bit over three years ago, had a flare that lasted 18 months and finally tried Remicade about two years ago. That drug really has helped a lot, but I never really achieved a good remission and my last colonscopy (October '08) and flex sig (June 18) shows I still have a lot of inflammation in the final few centimeters that are causing me a lot of problems.

While I have tolerated the Remicade well, my GI says it's just not worth the unknown long-term risks if it's not getting me all the way to normal. Once I made the decision to go ahead with it I am feeling pretty good about that and looking forward to it being done. I do have to wait about six months because I own and run a one-person business and I need to save up a bit more money to tide me over the recovery period and I need to make plans for closing down for a couple of months.

I think you will know what to do when you're ready. I was very much against having my colon out and having the j-pouch surgery for much of the time since my diagnosis, but I am just really tired of dealing with having UC and am ready to be done with it. From what I read all over the 'net at support sites like this one it truly seems that the only regrets any one has post-surgery is not having done it sooner.

Good luck to you (and me!!)

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed)

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 7/14/2009 12:24 AM (GMT -6)   
I am still waiting for my reversal so I have my ostomy for about another month. But, even the bag is better than the UC. I did the immuno drugs and got shingles, bad colds and really low energy. They only worked for about a year before I had to move on to something else. Humira was my last resort before surgery and I got "lucky" enough to get hospitalized and have the surgery before I needed my second dose of Humira- It was not a fun drug.

I used to keep record of how many times I used the restroom. I would stop counting at 20 times a day. Even if I have to empty my bag 8 times a day- I'd rather that. They expect after the reversal to go 6 times a day. Still better. And life without the pain of UC is worth cutting out an organ and learning a new lifestyle... for me anyway.

Good luck. do your research.
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Check out my blog: shlookshlies.blogspot.com/


daylight
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 7/14/2009 11:04 PM (GMT -6)   
I decided to go with the j-pouch. It is standard to do it in one step at the hospital in my area. I was in the hopital for ten days, which is normal. Everything went well. That was in January 2009 and now, more than six months down the road, I am very pleased that I had it done. It was a very difficult decision. First to have the ileostomy, that was terribly difficult to come to terms with, but I felt so much better afterwards . Then, the jpouch decision, I just couldn't go ahead and have a permanent ileostomy when the surgeon told me that I was a good candidate for the j-pouch. I am doing well with it.
Linda

beckxbecc
New Member


Date Joined May 2009
Total Posts : 13
   Posted 7/16/2009 3:36 PM (GMT -6)   
I had UC for a year before i was diagnosed and then had the disease for two years trying every drug my doctor recommended because i was steriod dependent, i was on prednisone on and off all those two years and i was never in remission once. I tried remicade in a trial and got kicked out of the trial because i was too sick for it, i tried 6mp that didnt work, i tried humaira and that failed and i could never get off the prenisone except on remicade but i was allergic to it on larger doses. Before the surgery i was in pain and every food i ate made me nauseous, i barley ate anyway and i was almost always under 95 lbs. The surgery went great and im about 4 weeks out and my second surgery is about to be scheduled for christmas so ill spend christmas in the hospital but i wont miss too much school, because im only a sophmore in high school. The surgery was great for me and im happy that i had it but everyday is different, some days are great and im so happy and others i wish i could cut off this stoma, or fast forward to next summer. The doctors are gonna tell you the machanics, and the ostomy nurse ( if you talk to them will only tell you some of what could happen). What happened for me was i got this horrible rash right next to my stoma because the output has digestive enzymes in it that when it stays on your skin for long periods of times your skin starts to be digested and i lived with poop on my skin for about three weeks so my skin was raw. Also i have woken up in the middle of the night with a huge leak all over me, my sheets and everything twice. I had to have my parents clean my room while i cleaned me. Now that im feeling good i am starting to feel resentful for having this disease and my friends getting by on having their heart broken or a backstabbing friend while im busy trying to figure out when i can have this surgery so that it wont interfere that much with my school and life because i havent had a life except UC for over 3 years now.

Sorry to drone on and on about my horrible life, and stand on my pity pot but I really want to impress on you that it will never again be easy to make any decision. Anything you chose from now on you will be giving something up. The surgery was great and im sooooooooo happy i did it because life is 10 times better now but if i could have had the drugs put me in remission for 5 years or 10 years i would have chosen that instead of this. Dont let all the good things people say about this surgery(because their are a lot of good things) cloud the fact that their are bad parts to the surgery. And in my opinion you should try every drug first to get in remission and then look at surgery as a last resort. If you do decide to have the surgery i know it will get better soon and that after you get the bag right and find out what fits for you it will be great i know, i hear it all over this site!
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