Should we go back to the bag? please help

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

redwood
New Member


Date Joined Apr 2009
Total Posts : 11
   Posted 1/24/2010 11:27 AM (GMT -6)   
Hi I'm Redwoods wife,  I'm usualy on the crohns post but someone suggested I go here.  Redwood has been sick for some time 1 1/2 years ago his large intestine was removed and now has a J pouch.  But he has been in pain every day since.  Still bathroom trips 12 to 15 times a day.  We have tried all meds,and diet but still pain all the time.  Now the Doctor suggested going back to the bag.  But when I ask if it will take away his pain they say "I don't know".  Redwood does not want to go through another surgery unless it willl take the pain away.  He has had 7 surgerys and you can understand why.  We have had compilcations one after the other while in the hospital.  We have another appointment coming up to discuss the surgery.  Has anyone had a J pouch and then went back to the bag?  Do they remove the J pouch to do this or just by pass?  I'm going crazy because I can't do anything to help him.  He is miserabale and depressed.  His pain is at times so bad he has a hard time straightening up to walk.  We have tried all the meds in the world and Doctor says maybe we should try the bag.  BUT she can't promise it will make the pain go away.  Anyone that has any advice I would love to hear it.  I don't know what I would do without this Healing Well.com.  Thank you, Redwoods's wife...Twig

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/26/2010 7:16 PM (GMT -6)   
I am bumping this for you...have you gotten a second opinion?

glaciergrl
Regular Member


Date Joined Apr 2005
Total Posts : 269
   Posted 1/26/2010 9:18 PM (GMT -6)   
I don't have the experience of having Crohn's, or any medical expertise but I'm wondering about where the pain is. I have quite a bit of pain in the beginning with my jpouch. I know have chronic pouchitis. It was pain mixed with lots of trips to the bathroom. Have you tried probiotics or antibiotics to care for the pouch?
 
I might be totally off base here, but this worked for me.
 
Holly
25yrs old/ teacher/ Wisconsin

Diagnosed UC Pancolitis in Nov 2004
Diagnosed PSC in Oct 2006
 
Proctocolectomy and J-pouch formed with loop ileostomy April 2009
Reversal June 2009
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5691
   Posted 1/27/2010 8:15 AM (GMT -6)   
Yes, they can disconnect the jpouch and leave it and give your husband a temp ostomy. That way he can determine whether or not it helps his pain. If the pain continues with the temp ostomy he can then decide whether to keep the jpouch with the pain or go for a permanent ostomy with the pain. People have gone from a jpouch back to an ostomy but I don't know of anyone who has done it for pain, mostly it's because of functionality. Is your husband's pain from adhesions? With so many previous surgeries this might be the cause. Has he tried any pain management programs? Have you visited www.jpouch.org?

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


redwood
New Member


Date Joined Apr 2009
Total Posts : 11
   Posted 1/27/2010 9:18 AM (GMT -6)   
Thank you so much for your help.
We have tried different Doctors and all just say they don't know. His pain..well he said it feels like it is heavy right above his bum, sharp pains inside, has to sit on very soft pillows, burns when going to the bathroom. He said it feel like there is a porqupine (can't spell it) inside his intestines. We tried probiotics and antibiotics. We will see the surgeon that has done all the surgeries again on the 8th next month. Maybe we can try to leave the J pouch and go back to the ostomy to see it it stops. Don't know. It could be worse I guess but hard to imagine how some times.
I will try the J pouch.org too. Thank you so much for your comments. Seems like so many people have this, but no one I know here so these forums really make me feel like we are not alone. My prayers go out to everyone and just maybe they will find something to help everyone and stop this disease.
To everyone that has a loved one out there with this disease, it is so hard to see them suffer but stay strong, stay by there side, do what you can and know they love you for it.
Redwood's wife, Twig
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 23, 2017 10:44 AM (GMT -6)
There are a total of 2,872,151 posts in 315,185 threads.
View Active Threads


Who's Online
This forum has 156678 registered members. Please welcome our newest member, MAUDEDSFWE.
385 Guest(s), 12 Registered Member(s) are currently online.  Details
Pohaku53, Lapis_29, hopenchange, Pirouette, Katey, magoo2, Fletch10, FlowersGal, Tim Tam, Tall Allen, Oriol, kellyinCali


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer