Should we go back to the bag? please help

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New Member

Date Joined Apr 2009
Total Posts : 11
   Posted 1/24/2010 12:27 PM (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  Thank you, Redwoods's wife...Twig

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 1/26/2010 8:16 PM (GMT -6)   
I am bumping this for you...have you gotten a second opinion?

Regular Member

Date Joined Apr 2005
Total Posts : 269
   Posted 1/26/2010 10:18 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.
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

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 1/27/2010 9:15 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

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

New Member

Date Joined Apr 2009
Total Posts : 11
   Posted 1/27/2010 10:18 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 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
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