Crohn's Disease Forum » Treatment » Do I have to agree to a permanent colostomy bag?

03-27-2013, 11:39 AM   #1
Join Date: Mar 2013
Location: Liverpool, United Kingdom
Do I have to agree to a permanent colostomy bag?

Hey, I'm Josh and I'm 18 years old.

I went to see my specialist today and he old me my Crohn's disease wasn't responding very well to the treatment I was on. He then went on to explain that he was going to refer me to a surgeon, who iv seen before, and he suggested that I have a permanent colostomy bag. This has really frightened me.

I'm going to talk to the surgeon when I get the appointment, and see if I can just have a tempory bag for now and hopefully my bowl will get a bit better being rested for a few months. My Crohns is effecting my lower bowl, just past the anus about 40cm in.

I was told that if my Crohns was to grown any worse, I might be admitted as an emergency and it turn into a life or death decision on wether to have a colostomy bag or not, now I don't feel my crohns is this bad so do you think the doctor is just using this as a scare tactic to try and get me to agree?

I really don't want a permanent bag, I would much rather wait until iv been to university and travelled round and wait until iv settled down before making such a massive decision that will change my life for ever.

Any help guys? This is really starting to depress me now haha.
03-27-2013, 11:53 AM   #2
Join Date: Oct 2011
Location: St. John's, Newfoundland, Canada
Hey man,
While I can't comment on your specific situation with regards to needing a permenant colostomy bag, as I really have no idea how bad your Crohn's is, I will say that I've had doctors try to scare me in the past. I've been told that I am a 'very sick young man' and that 'surgery is inevitable so I should prepare.' Some doctors refuse to believe you when you say you're not as ill as they seem to think. For some reason how bad you actually feel is irrelavant to them.
I want to say that I am in no way encouraging you to go against the advice of your DR. but I will say that you absolutely don't have to do anything you don't want to do. If you're hesitant, get a second opinion. Crohn's is not a black and white condition, and it will help to speak to a few professionals regarding what your options are.
So, to answer your question, No. Advice: get another opinion.

Also, wondering what Meds you've tried? Have you exhausted all options?
03-27-2013, 12:03 PM   #3
Join Date: Mar 2013
Location: Liverpool, United Kingdom
Thanks for that. I was on infliximab for about 7 months and that was just making things worse. Then they tried azathioprine but that gave me joint pain so they stopped that. Iv now been on 40mg of humira a week, that doesn't seem to be working but they have kept me on it and I'm also on mercaptopirine 50mg per day.

My dads a GP and he was pretty shocked that they suggested that for someone my age and straight away he was like "you don't have to get it done, just say no" but he has a tendency to change his mind so not hold my breath on that advice haha. But I will defiantly seek other advice some how!
03-27-2013, 12:15 PM   #4
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It can become life threatening and an emergency situation. Terriernut has a temporary colostomy due to colon perforation from Crohn's. I've tagged her so she can give you her take on this.
Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
03-27-2013, 02:07 PM   #5
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Yes, it can become a life and death situation, which is exactly what happened to me. My sigmoid perforated, and I had a fistula through my left fallopian tube. I was in seriously bad shape.

My suggestion is don't wait til it's an emergency. (understatement of the year) You can have them remove the badly affected bit and have a temp bag until you are under control. It saved my life. (bag or body bag) It certainly doesn't have to be permanent. But, you need to be under control, no active disease before they reverse. You may find as I did that once the bad bit is out, you get under control quickly.

Dont be afraid to undergo the op for a TEMPORARY bag for the time being. There is no need for it to be permanent unless your anus is a disaster area. My advice is to take VERY good care of your ass!
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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03-27-2013, 02:28 PM   #6
Join Date: Mar 2013
Location: Liverpool, United Kingdom
Terriernut, I absolutely agree with that. Iv said to my dad that I'm gonna go to the surgeon and tell him that I will undergo any surgery quite happily, including a temporary bag, as long as I don't have anything permanently. I understand about scars and all that but no permanent bag.

Iv also got to remember that this was only the specialist doctor saying this about the permanent bag, the surgeon may say something completely different?
03-27-2013, 02:45 PM   #7
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I've got a temporary bag after going in as an emergency. When you feel as low as you can get it's not really a choice anymore. I was already planning on having surgery, but ended up in A&E

Depends on your surgeon, I had mine done in Liverpool. Who's your surgeon?
03-27-2013, 04:02 PM   #8
Jim (POPS)
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I have crohns but my wife has Coitis and she has a ilyostomy for life. She doesn't mind having it at all. She is in good health and can do ANYTHING. After all it is about or health in the end. I also had a temp ilyostomy for 9 months and the best thing of it I could eat anything I wanted. THAT WAS COOL.
Good luch. Please don't wait till you go septic like I did, it's no fun at all. I almost died.
03-27-2013, 04:48 PM   #9
Join Date: Mar 2013
Location: Liverpool, United Kingdom
Price, if I had surgery it would also be in Liverpool, under Mr. Heath. Was he yours? Iv seen him before but never had any surgery that time. My specialist did talk about the possibility of being admitted in a&e and having emergency surgary, but I just feel fine, I don't feel bad enough for any surgery if I'm honest. Certainly nothing permanent anyway.

Jim, thanks for the advice.
03-28-2013, 04:13 AM   #10
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Join Date: Jan 2012
Location: London
Hi mate, between ages of 12-14 I was pretty much flaring badly and constantly and on and off various meds. I perforated my small bowel and had to get emergency surgery to removethe badly diseased part of my ileum.

I had a temporary ileostomy bag for about 8 months, which gave my bowel a good bit of recovery time. I had the ileostomy reversed after 8 monthd ad I said. The rest did my bowel awonder of good plus they removed a badly diseased section.

I didnt have any bad flares for abou 11 years after that. A temporary bag can definitely be worth it for the sacrifice of 6 months or so.
Crohn's Disease - diagnosed 2001.
Small bowel resection 2003 & ileostomy for 6 months.
Strictureplasty laparotomy in 2012.

Humira - Feb 2013 - Jan 2017, then failed.

Flare in large bowel Jan 2017 - Oct 2017. Failed attempts to get inflammation under control using Vedolizumab and Ustekinumab.

Surgery Oct 2017 to remove whole large bowel, and fit a permanent ileostomy.
03-28-2013, 09:24 AM   #11
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Yeah I had Mr Heath do mine.

I think hospitals, especially in the UK, prefer it if you go in before you're needing emergency surgery. I think when I went in I was in there maybe a week and a half to 2 weeks before getting surgery. Was under obs for ages before it was deemed I had to have the surgery then

The permanency also depends on where they do the surgery. Depending on how much of the rectum they remove it might not be possible to reattach it later on. You're best off asking Mr Heath. I know he's regarded as one of the best in the UK and in general Liverpool is very good for this sort of thing. Do you go to the royal or that other one? I've only been to the one that isn't the royal once.

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