Extreme Colon
Removing the colon due to crohn’s disease?
My friend has Crohn’s disease, it has evolved rapidly. He now has ulcers in his mouth, severe bloody diarrhea, extreme abdominal pain and there are many ulcers in his colon along with an extremely inflamed small intestine.
The doctors said they will have to remove his colon and have a colostomy bag. He is only 29 and feels this will ruin his life and has refused to have it removed.
My question is, if he doesn’t have his colon removed what will happen? Will the pain just carry on or will something even more serious happen?
hi nathan, I am a female ostomate due to crohn’s disease since the age of 12. It’s been 28 yrs. living with it and 22 yrs. with my appliance which I recvd at the age of 17 to save my life b/c my entire colon was inflamed, had fistulas, abscesses starting, I was in constant pain, was running to the bathroom 24/7, unable to eat b/c it hurt, etc. I can totally relate to your friend.
The surgeon told me that a total colectomy (removal of the entire colon) was necessary otherwise the bowel could’ve perforated & caused serious problems. I was given an ileostomy that made me feel better almost immediately and I was able to wean off the steroids. Your friend, it sounds like, is having the same thing I have….an ileostomy (part of the small intestines that will be used to create a stoma (an opening) that will drain into a bag to collect fecal matter.
A colostomy is where part of the colon is removed, not the entire colon, and a stoma is created where formed output will drain into a bag.
Nobody knows you have a bag unless you choose to tell them. I was able to have female visitors from the local ostomy support chapter visit me b4 the big day to answer my questions. Once I was well enough, I started to attend the meetings to learn how to deal such things as leakage, diet, exercise, clothes, dating, etc. I’ve met so many folks like myself as well as cancer pts. w/ostomies.
The united ostomy association of america has a site you can go to for updated and accurate information. (see sources listed below). Also, once he has his appliance, he can call Convatec, one of the many companies that make ostomy supplies, and request a free 1 month supply of bags and wafers. I’ve been using them for 22 yrs. and their customer service is excellent whenever I’ve had problems or concerns.
Make sure that he has a wound care ET RN mark the spot where the bag is to be and he gets information on who to contact if he has problems once he gets home. Some visiting nurses associations have ETs that work for them & can come to the pt.s home while recouperating. That is what I had for my 1st surgery.
Also, after surgery, make sure your friend is on maintenance medication such as 6MP, Imuran, Humira, Remicade, or Entocort so the disease stays in remission. Most GIs are doing this w/their pts. b/c there has been great success in using these treatments to keep things in check.
Definitely share the information I provided as well as the links. I wish your friend all the best and let him know that he is not alone in this. The Crohn’s & Colitis Foundation of America has a site….www.ccfa.org…..it has great info on surgery, diet, coping, as well as locating a local support group, a hotline and a live chat run by healthcare experts, and a forum where anybody can post questions to others.
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