Colostomy for Crohn's Patient

I recently was told I need to think about having a colostomy. I'm 33 years of age, and really dont want to have this surgery right now. Has anyone else declined this surgery??

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Refusing colostomy?
by: Steph

I was diagnosed, finally, in 2000. I've had 3 bowel reactions, the last one Oct 2017. I now have a fistula between my small intestine and colon. My dr has mentioned colostomy twice but I don't think I can ever accept it psychologically. I have very little will to live and nothing to look forward to. I think when I have my follow up appt after my colonoscopy, if I'm told I have to have a colostomy, I will pretend to accept it, but will kill myself instead.

I have declined
by: Jenn

I had an ileostomy performed at the age of 13 to treat severe Ulcerative Colitis. It was only temporary - but it was the absolute worst time of my life. I had not consented to the surgery - I decided I would rather die. My parents consented on my behalf. I have since made it clear to them that they betrayed me in the worst way a parent can betray their child - by mutilating, destroying, and debhilitating their body - for their own benefit. This was not done for my benefit - I would rather have died. This was done to shift the suffering my parents would have felt from losing me, onto me - in dealing with the surgery.

I had a j-pouch done at age 14, and am now 25. I have two law degrees (one from London, UK, another from a top nationwide law school). I have had problems with my pouch constantly. I receive remicade infusions, along with a list of medications a mile long. Lately, I have been suffering from severe blood loss from the pouch. I have had several blood transfusions, and iron transfusions, and yet my blood levels continue to drop significantly. My doctor has tried to persuade me repeatedly to revert to a permanent ileostomy. I have told him, quite frankly, my decision has not changed. I am making the same decision now, at 25, that I would have at 13. I would rather die than have an ileostomy. I had one for almost a year, and I despised it. I would never live like that again.

Now, I have gone through the correct legal channels to draw up the Advance Directive/Living Will needed (witnessed/notarized), to make sure that surgery can never be performed on me - under any circumstances - including the threat of my own imminent death. I had made this clear to my doctor in the past, but since he disagreed with me so heavily, I felt it necessary to have the legal papers drawn up so that even in the most dire situation, my will cannot be overridden. If I die from the blood loss, I die from the blood loss. I will never have an ileostomy under any circumstances.

So - no, I do not think it is weird or wrong to NOT WANT an ileostomy. It's unnatural, and inhumane. No one would perform that surgery on an animal - a dog, or cat, or lion, or giraffe - so why are we treated worse than animals? Make this decision on your own. Do NOT feel pressured into an ileostomy just because your doctors pressure you. Remember - there's only ONE name that can legally go on that consent form - and thats YOURS.

Dont do it
by: Debbie

I just had a colostomy Oct.25th.I have had Crohns for over 20 years.I developed anal cancer from all the abcesses over the years.I went through chemo and radiation and beat the cancer,the radiation did a number on me.I lost complete control of my bowels and it was very painful.My Dr. said a colostomy was my only choice so I DID IT.Worse mistake of my life.I realize its only been a few days but i wish i had not done it.Not only is the pain horrific,these bags constantly fill up and stink,I will never leave my house to go out in public again.It was not worth it at all and I cant change it now,its permanent.

Colostomy for Crohns Patient
by: Rich

Hi there.
I had an elective colostomy in Apr 2009 after developing an abcess on the large intestine.
I have had Crohns for 20 yrs & this was the first time that I had to have an invasive procedure.
I was due to get married & go on honeymoon in Sept 2009 so was running out of time to try & solve the problem any other way (we tried draining the abcess, strong doses of steriods etc but in the end, the affected area needed cutting out)
Fortunately, mine was only temporary (8 months for the colostomy followed by 3 months ileostomy - all to let the bowel rest each time after re-attaching)
Would say that the benefits of having a bag really surprised me and its no longer something I'm afraid of which is comforting as I'm quite sure I will need to have one again some time in the future.
The surgery & recovery is pretty hard to be honest - there was lots of focus on dealing with the bag but not so much information upfront about the general recovery from being opened up - I really wasn't prepared for not having any core/stomach muscles !
In terms of doing it as a cancer avoidance move, I can't really comment but, depending on the level of severity of your Crohns, it can certainly drastically improve quality of life.
My wedding went without a hitch & travelling to Hawaii (from the UK) with a bag was a breeze !

Wishing you all the best whichever option you choose.

Healing from Crohn's
by: Al Rodee

Here is an email I got today from a long time crohn 's patient: "Al, Got the test results back and still have some crohns but less than previously. Guess I'll have to keep on tapping".

The client had crohn's for 25 years. He has been doing energy psychology for 2 months. He is no longer taking medication (his choice, I never encourage people to stop taking meds)and he felt like his crohn's was completely gone. My response was that the mind can heal faster than the body so he may be completely cured energetically but it will take his body some time to recover.

Colostomy for Crohn's Patient
by: Anonymous

Thank you all for sharing your stories with me. It helps a great deal to understand how other people have coped. I have still not made my decision - am looking into a second opinion and a more stress free life! Fingers Crossed I make the right decision! Thanks Again! x

colostomy for crohns
by: Anonymous

I was diagnosed with crohns at about 12 years old, no medication seemed to help me except from infliximab. Unfortunately after 2 doses it turned out I was allergic! When I was 16 I had to go for a ileostomy, which was made permanent. I wasn't sure whether I wanted this as being a 16year old female teenager I was quite body concious and embarrassed. I didn't really have a choice though as my weight had fallen to just below 4 stone! and having absolutely no sense of life as I couldn't do anything except be as close as possible to a bathroom.
After having my operation, I felt like a new person, I could actually go out and enjoy life with family and friends. Yes u still get bad days, when the colostomy bag leaks it can be really annoying and u do have 'down days' when you will probably regret having the operation, I know I do. But I also know that without this operation I probably wouldn't be here today.
I am now 22 years old and my partner and I are expecting our 1st child! I would never have thought this possible a few years ago with being so ill.
If u have other options before surgery, I would try them out first. I never had any options, though I wouldn't change a thing. You really need to think things through though and discuss it with your family and friends. One thing I have learned is to talk to them no matter how bad you feel. You may feel like pushing loved ones away but it will only make you feel worse. I hope everything goes ok for you.

by: Anonymous

Please don't have surgery before you try energy psychology techniques

by: Anonymous

I have the Crohn disease since I am 17 years old. I am now 30 years old and last year, I had my first resection and had a perotonitis 7 days later so they had to give me an ileostomy. I am now facing the choice of keeping it or reconecting. I choose to have it permanent because now that I have my ileostomy, I live again and I miss life so much :).
Good luck

Take back your life
by: Anonymous

Free internet, Live Stream, discussion about how to take back your life from Crohns disease. Crohns is not genetic,it's not your fault and it's not curable with medication as you know.
You suffer in pain, embarrassment, fear and have to stay close to your bathroom at times. Take back your power.

Many people have been cured of Crohns. Discover how. Next conversation June 13th 10am Eastern for 1 hour. Register at 902-452-0473

Take back your life
by: Anonymous

Free internet, LiveStream, discussion about how to take back your life from Crohns disease. Crohns is not genetic,it's not your fault and it's not curable with medication as you know.
You suffer in pain, embarrassment, fear and have to stay close to your bathroom at times. Take back your power

Many people have been cured of Crohns. Discover how. Next conversation June 13th 10am Eastern for 1 hour.

Colostomy for Crohn's Patient
by: Anonymous

Believe you me, you will know when it is time for surgery. Your post indicates that you are not there yet.

I was diagnosed at the age of 32 after decades of feeling unwell and going from doctor to doctor. Each told me that my symptoms were psychosomatic. It was clear at the diagnosis that I was going to lose my colon. I am medication resistant and ended up with an ileostomy at age 33. I am now 51. I was on my knees for surgery during the whole of the year waiting for it.

There are a lot more treatment options nowadays and until you have exhausted every avenue open to you, I would not encourage you to have surgery.

The caveat is that planned surgery is far more successful than emergency surgery with the latter having a far higher mortality rate. In addition, if you refuse surgery and you have fulminant medication-resistant Crohn's (as I did) then the risk of toxic megacolon and peritonitis is high. The outcome can be a quick (days) and extremely painful death.

Look on Medscape or google for the latest clinical treatment guidelines for Crohn's. Google to see if there are any clinical trials for new treatments running in your area and whether or not you may be eligible.

by: Karen

Thanks for replying.

Personaly I think we are all high risks of cancer.
I would get another opinion and make sure it is someone who specializes in this field.

I am not a doctor so cannot tell you what to do.

If your case is so extreme, and another opinion also advises the same then who are we to question them. I wish you well and all of the best for the future.

Do let me know what the outcome is. I really care to know.


Colostomy for Crohn's Patient
by: Anonymous

Hi Karen,

Thanks for your comment.

I have crohn's for 10 years now and my doctor says that I am a high risk for cancer so by having surgery(permanent) it will elimate the risk and also he thinks it will give mea better standard of life, healthier , happier etc. I'm not convinced.


by: Anonymous

I had 2 of them, one in 2003 and one in 2004. Mine was done, as the doctors tried to repair my fistulas. This was a total failure, as I still have them today.
May I ask what the reason for this operation will be?
I will not have it done again unless I am gauranteed that it is vital to do so.

All of the best and hope to here from you soon.


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