Questions about process

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Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 3/25/2008 7:22 AM (GMT -6)   
I have an 18 year old son who has done it all, Asacol, Rowasa, 6MP, Prednisone, Remicade.  He has UC since March '06. We had it under control with Remicade & 6MP for about 6 months and then, boom, he starts a flare that even 40 mg of Prednisone is not controling.  We're waiting for the results of a Remicade test to see if he has developed antibodies (or something like that). When do you decide that enough is enough.  So my questions are:
 
If you have the surgery with the j pouch, how long are you out of commission for
 
When it's all over, can you eat what you want?
 
I've read that even with the j pouch, some people are still in the bathroom every couple hours True?
 
Any advice or suggestions would be much appreciated.
 
I know it's his decision, but he wants to go away to college this fall and I don't know what to do anymore.
 
Thanks!!
 
Mother of 18 year old son
Remicade
6MP 100mg


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/25/2008 7:36 AM (GMT -6)   
I had jpouch surgery 7 years ago, best health decision of my life.

I recommend you and your son visit www.j-pouch.org and ask questions. There is a wealth of information on that site and over 6000 members. You can get recommendations for good surgeons. I had a 2-step procedure meaning that my colon and rectum where removed in the first surgery and the pouch was created. I had a temporary ostomy for 8 weeks. I went back to work 3 weeks after the first surgery and then again 3 weeks after the second surgery. The second surgery involves closing the ostomy. Barring any complications your son should be well enough to go away to college in the fall.

I eat everything though I prefer a diet of fresh fruits and vegetables so that is mostly what I eat. I haven't found a food that I cannot eat due to my jpouch. I am very physically active and my jpouch gives me the freedom hike to my heart's content. Surgery is not a cake walk but it's far better than battling a chronic flare and at least in recovery you feel well so it helps with the transition. While frequency is higher there are no prolonged trips to the bathroom. Emptying a pouch is as quick and painless as urinating. Honestly I have no idea what my frequency is nor does it get in the way of my life. When I had UC I had to know where every bathroom was in the city and on the route I was taking. With ajpouch I don't need to know and like people with a healthy colon I can hold it if I need to.

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


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 3/25/2008 3:50 PM (GMT -6)   
I just wanted to post and say how bad I feel for your son, being only 18 life is hard enough without having to deal with this disease. I have two sons, one is 20 and one is 18 and I would hate for them to have suffered like I have. I would think that if the Remicade isn't working anymore, they could possibly want to try Humira, but I look at it like most will eventually build up antibodies to these medications and the surgery will have to happen, but that's my observation only. Does he want to continue taking other medication? I tried everything from prednisone, imuran, cyclosporine, remicade, along with enemas and nothing worked on my last flare and having dropped over 30 lbs I was told that surgery was my only option left or I would die. I would hate to see your son so sick in having to make that decision and it's so much harder to recover from surgery when you are so weak.

I would suggest that he look over the boards here and jpouch.org and he will see that other young people have gone through the same thing and are living better lives now without UC. It's such a big decision for someone his age, and the information he gets from these sites will hopefully give him the strength to make the right choice for him.

Good Luck
Theresa

Originally diagnosed with CD in 1991
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008--3rd step -April 2008


StomaGrrrl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 3/26/2008 6:51 PM (GMT -6)   
i don't know if this will help, but there are several websites by people in your son's peer group who have opted for life with an ostomy. they are pretty funny blogs, actually, and i think they lend a special perspective to the decision. i'm about 10 years his senior and a girl, but ostomy is an ostomy is an ostomy and i certainly appreciated the information i got and was able to pass it along to other young people facing the decision.

http://l.webring.com/hub?ring=ostomy
http://www.poopreport.com/Consumer/life_with_ostomy.html
http://te.wordpress.com/tag/ostomy/ (an adult, but good information)
http://blog.healthtalk.com/life-with-colitis/living-with-an-ileostomy-pros-and-cons/ (good one, a lot of links, written by 18-30 yo)
http://anshugpta.blogspot.com/2008/02/types-of-ostomies.html (good one, pretty thorough)
www.ostomates.org/ (shaz is a moderator for this group and has an awesome website)

some of this may be beyond where you and your son are in figuring out what next and some of it may make sense. hopefully something will help.

camille
diagnosed Endometriosis 2001
first surgery 2003 - lesions found in rectum
7 major procedures in 2007 including 10-hour endometriosis dissection, ileostomy, RV fistula closure, ilestomy takedown, colostomy
No longer taking testosterone, codeine, vicodin, xanax, or receiving acupuncture 2-3 times a week
Loving life and re-entering "the world"
still taking the occasional valium :)
Back at work and enjoying "perspective" on life...


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 3/27/2008 9:51 AM (GMT -6)   
Thanks so much for all the support and information.  You never imagine when they are little and running around driving you crazy that you'll have to be going through something like this, but I keep reminding myself and him that it could be worse and we will get through it and when it's over he can get on and enjoy his life.

Mother of 18 year old son
Remicade
6MP 100mg


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/27/2008 3:07 PM (GMT -6)   
it will get better lew, let him know that. It may not seem like it for him right now, i fought my surgery for a year and when i had no choice thought my life was over. Its not, and i feel better now then i've felt in a few years. He just has to be patient...there will b a silver lining
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you

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