J-pouch question

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DePiro
Regular Member


Date Joined Nov 2003
Total Posts : 435
   Posted 4/7/2004 6:55 AM (GMT -7)   
I have had U.C  for 5 years chronic.In the future I would like to have J-Pouch surgery.I have heard that not everyone can have this surgery,and some have to wear a bag on the outside for good.I have read that during this surgery a lower part of the colon is used.This is my question,....my flare is very low in the colon and that is a diseased part,would I still be able to have J-pouch surgery? ,........Any opinions would help..thanks

niki
Regular Member


Date Joined Apr 2003
Total Posts : 58
   Posted 4/8/2004 10:29 PM (GMT -7)   
what type of surgery have you had so far? any?
I had uc for a couple years, and I had a total colectomy last may. j-pouch surgery for me involved using the last foot and a half or so of small intestine. They just need to leave some rectum in when they do a colectomy to do the j-pouch surgery later. The piece of rectum they left for me was still diseased, and since my doctors thought it would never get any better, they went ahead and gave me the j-pouch a month ago. I dont bleed anymore, finally! they scraped out the lining of the last bit of rectum that had ulcers. i'm just waiting for july/august to have my last surgery. they are waiting for the pouch to heal before i can use it, so i have a 'loop ileostomy' right now.
my dad has an ileostomy as well, but he was told that he might not be an ideal candidate for j-pouch surgery because they left such a small piece of rectum that it might be covered in scar tissue, and hard to find. They had to take most of his rectum out because his colitis was so severe that everything was falling apart. they told him he should still have surgery again so they could at least try to remove that last piece of rectum-since it still bleeds and therefore he has a higher risk of getting cancer.
my grandpa has a colostomy because he had a large cancerous tumour removed. he is not able to have a reversal because he had a heart attack during surgery and they dont want to risk cutting him open again.
it's been really difficult. my second surgery was just as painful as the first. i am also going to the bathroom more often now-just as much as when i had uc. its because i have to wait until the pouch heals, so i'm not using all my intestine. its 5x more than with my original ostomy. its also more liquid and bile...so it is more irritating to the skin and the bags dont last as long for me anymore. its been a long process, but if i dont have to keep the bag it will be worth it. its taken a long time because everything has to been done in steps....they cant just do it all at once or its less likely to work, and more likely to have complications. im just scared because its not all garaunteed to work. you only get one chance at it. good luck with everything.

DePiro
Regular Member


Date Joined Nov 2003
Total Posts : 435
   Posted 4/9/2004 4:19 AM (GMT -7)   
Thanks for your info Niki...I hope you do well. I still have UC and am on meds .I seem to have control of my flare ups and have expierience with UC ,...but the risk of cancer ,..avoiding good foods ,..bad days in remission,..drugs,.really sucks,..I also miss drinking coffee which I am not sure if Surgery would allow me to have. My niehbor has a j-pouch and says that at first he made alot of passes but now he goes 5-7 times a day,he could be a big eater too.

amybanks
New Member


Date Joined Nov 2016
Total Posts : 17
   Posted 11/12/2016 7:09 PM (GMT -7)   
Normally they will do a total colectomy, your entire colon and all of your rectum except for 1/2 inch. They leave a rim of tissue so that the nerve endings can help you with continence, knowing the difference between a toot and a poop. The Jpouch is made from your ileum, which should be disease free. It's very important that your doctor determines if you have UC or Crohns. There is a blood test and the PillCam that looks for inflammation or scar tissue in your small intestine. If you truly have UC, then your ileum will not be a target of your immune system, and you will have a high percentage of success with this surgery and will be able to go off all your drugs. It's a long, hard process. They do it in either a 2 or 3 surgery sequence and you will usually need 6+ weeks off work for each. I would check with your state laws and company rules for how long you can take off work, as well as research your health insurance plan, what it covers, and most importantly, your maximum out of pocket cost. At 5 years out, you have a low risk of cancer, but as time goes on, like decades, it starts to become an issue. I had my surgery for cancer prevention after a colonoscopy showing pre-cancerous changes.
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