Community Forum

  I was diagnosed with chrons and colitis in 2000. I ended up in the hospital four days.  I was told I probably had it all my life but a series of traumatic events kicked everything in high gear! The surgeon told me I do not have the option to repair anything because there is not anything healthy to reconnect. I have a pretty high tolerance for pain but the bag deal is what I have been avoiding. My weight has been staying stable even though I hit the bathroom anywhere from 10-20 times a day! I was forced to stop working and have to conserve energy to do little things. I am currently without insurance . I am waiting for medicare to kick in. I have one more year to wait although I am currently appealing that.  My husband and I were just married and he is pushing me towards the surgery.  I am more concerned about the emotional part of the surgery. Is it possible to get the J-pouch in my situation? What is the K-pouch? If anyone could enlighten me I would greatly appreciate it!

 Reply posted for Robert.

 I really hope things went well with your surgery! I noticed by reading this site you are very helpfull to alot of people! I feel bad that you have to go through everything you have gone through. I really hope this last surgery will bring you better health! Take care! 

 Reply posted for Robert.

Thank you for responding to my question when you are so clearly going through so much at this time! I do not know what the Koch pouch is. I have heard it mentioned and that is about all I know. I am just trying to figure out when enough is enough. I keep being told the surgery is the cure all but the more I read it sounds like more nightmares! I have been told the worry is my chrons will weaken my intestines and they will rupture. I have been dealing with the urgent bathroom runs up to 20 times a day. All I do now is take larazapan and vicodine for the pain. I put off taking these as much as possible. (about once a week) otherwise I take cipro on occasion. I did the steroids , asacol, etc...... for years. I quit taking them four years ago because I did not feel any better.

     I wish you nothing but luck and well wishes! I really hope this surgery will go well and you have a speedy recovery! It sounds like you have went through alot !! Does having chrons and colitis make that big of a difference?  It seems that what has worked for people with Colitis does not neccesarily work for the chrons.

 Take care!Michellel

 Reply posted for michellel.

Without knowing more specifics, I would highly recommend getting a 2nd opinion before having surgery.I also have Crohns-Colitis and had my colon removed 2 years ago and have worn a bag since. I was diagnosed in 1998, was hospitalized about 10 times and tried every treatment imaginable before consenting to surgery. I am actually being admitted tomorrow to have BCIR surgery performed which is a modification on the Koch Pouch.I found out about the BCIR on my own simply by surfing the net.If your colon is as badly damaged as you say,you would probably have to be fitted with an ileostomy pouch for some period of time as you are probably not in any shape for any other type of procedure.

Some people are happy with the J-Pouch but many are unhappy with it and actually convert it to a BCIR (the Koch pouch surgery is rarely performed anymore).I will log on later this week after my surgery and will answer any specific questions you might have.

 Reply posted for tarheelmama.

Thank you for your response! I was told the surgery was the cure all! I am now finding out it is not all it is cracked up to be. Pretty scarey stuff, good luck with your stuff!

 Reply posted for mevscience.

Thank you for your response!I am very thankfull to you for telling me about the stretching part! Every one I have talked to about the J- pouch has claimed that it is so wonderful! If it sounds to good to be true it usually is! I was on 18 meds a day for years and said enough is enough a few years ago. I actually felt better without the meds.

 Reply posted for michellel.

first of all have you been on every crohns med? if not why have the surgury?  I have had my colon and part of my small I removed, I wore a bag for 2 years.  i recently had  a new surgury to get rid of the bag called a pull down procedure.  I know several people with j pouches they have had to have it stretched many times they say its quite painful they get blockages all the time.  recovering from surgery can take up to a year physically.  and emotionally i had never recovered till i had my surgury reversed.  my gi doen't believe in the surgical option.  good luck mev

 Reply posted for michellel.

I've never had surgery but I'm in a situation similar to yours. If your flare is that bad and nothing is helping then you should go see a surgeon. Like everyone else here has told me... try everything you can and if it doesn't work then discuss it with your doc. Good luck!!!