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Crohn's Disease Forum » Surgery » Stoma Subforum » Stoma good idea?


01-28-2014, 09:41 AM   #1
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
Stoma good idea?

Hi all,
I am currently considering getting a stoma. This hasn't been talked about with my doctor yet but I have my reasons. I have had crohns since I was 14 now I'm 21. Tried all the meds none have worked. I also have 2 fistulas which keeps causing abscess (a lot of pain). I just feel like I'm going round in circles I am unable to work which is messing up my whole life. It feels like someone has taken an axe to my bottom, we'll it defo looks like that because of all the surgery. I just want to be able to live my life again. Any advice would be really appreciated
01-29-2014, 01:53 AM   #2
Jimena
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For your situation, yes, stoma could be good idea. I had perianal disease, deep cuts in my bum and possible fistula and rectum very inflammed. Two years i stick with it but then i deside that i want to have a temporary stoma. And i did, i have had my stoma 6months now and life is SOOOOOOOO much easier now. No pains in my bum. My rectum is still inflammed mut i have no pain. For me, this was the best thing could happen.

Sounds like you are in great pain
__________________
Severe Crohn's since 2002. Tried every longterm medicine there is, Pentasa, Azamun, Remicade, Humira...
Temporary colostomy 2013 -> Parastomal hernia
Surgery, mesh, end colostomy 2014 -> deep wounds that didn't heal, three fistulas around stoma
Colon removal and ileostomy 2015 -> So far so good

And after every stoma surgery, nasty Pyoderma Gangrenosum around my stoma.
01-29-2014, 02:10 AM   #3
grt73
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Hi Timbo,
It's a double edged sword, I have a stoma and have done for a year. I'm hoping its temporary but as time has gone by I have got used to it. The best part as Jimena has said is that it makes life easier in the fact that the pain I used to suffer has been taken away. (Hopefully forever) it does take some getting used to though and not forgetting it is major surgery.
Usually a doctor will only go down the stoma path as a last resort.

Good luck and keep us posted.
01-29-2014, 05:28 AM   #4
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
Hey thanks for the replies. Sounds like you have both had improvements by having a stoma. I feel like I'm not giving my body time to heal because the parts that need to heal are in constant use because I have crohns. I am gonna talk to my doc about it but I think it would benefit me. The only thing I don't like the sound of is major surgery, but if makes me feel better I guess it's worth it. I just want to be pain free and get back to my life.
01-29-2014, 06:19 AM   #5
BrightonLou
 
Join Date: Jan 2014
Location: brighton, United Kingdom

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Hiya, I have a stoma myself and to be honest though i really didnt know anything about crohns until i was diagnosed i would rather have the stoma now than be in hospital all the time and having to change medication all the time so I would agree that you should discuss this with your gp and see what you think would be best for you personally. It doesnt come without problems though but its better than always having to change your medication
01-29-2014, 07:29 AM   #6
UnXmas
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I'll always advocate stomas, because my ileostomy is helping me so much, but you must be aware that for every person like me, there'll be one (or more) who have a bad experience. Stomas have a lot of potential problems that they can bring, and with Crohn's it's always possible that you'll continue to have some difficulties even with a stoma, as other parts of the digestive tract can become diseased at any time.

The surgeon's role is hopefully to give you the best idea possible of what a stoma could achieve in your own individual situation. Giving fistulas and abscesses a chance to heal is certainly a goal that can be helped by stoma surgery.

Talking to a stoma nurse and reading forums such as this one can give you an idea of what life with a stoma is actually like - things like body image issues, dietary requirements and the practicalities of living with a stoma you can learn a lot about by reading and talking to others.

The only thing I don't like the sound of is major surgery, but if makes me feel better I guess it's worth it. I just want to be pain free and get back to my life.
I'd be careful of viewing the surgery itself as the most important issue. Yes, it takes some time out of your life, and it's a major thing which carries certain risks. But as someone who's had six surgeries, plus some terrible (but temporary) surgical complications following my ileostomy surgery, I can say that the weeks or months you'll spend recovering from any major surgery will very quickly fade into distant memories. Things will get back to normal, and the rest of your life is much more significant than the surgery and recovery period.

I don't mean to make light of the surgery, but I believe it is the living with the stoma that should have the greater influence on your decision. (Unless you have any medical problems that mean surgery is exceptionally risky for you.) I went through a horrible surgery with my ileostomy - I felt absolutely miserable, physically, for weeks, and three months later I'm still not quite back to the level of health I was before this surgery. But I am so glad I went through all that when I think that I'll now be spending the rest of my life with an ileostomy, which, for me, means an end to many of the appalling bowel problems I had without the stoma. Being so sick following the surgery, I can now look back on as a character-building experience.

And on the flip-side, someone could find the surgery a breeze (I've had surgeries before, even quite major ones, when I spent a few weeks in a moderate amount of pain and feeling quite ill, but it never felt terrible) and then go on to experience years in which the stoma causes problems that, in the worst-case scenario, make them regret having it. (Though the likelihood of this is of course very small if the stoma is temporary.)

So my main message is that having a stoma can bring major benefits, and while many people view surgery as a last resort, I personally wish I'd had it earlier. I was very sure in my mind of what I wanted, and I've been blessed to have few of the problems I'd been warned may come with the stoma. If you have done some research and feel similarly, then I see no reason why you shouldn't bring it up with your doctor. You'll never be able to predict the outcome entirely, but I think for some it's a very reasonable treatment route to pursue.
01-30-2014, 12:35 PM   #7
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
So my doctor gave me some antibiotics again . But I'm seeing my surgeon on Tuesday so I am going to talk to him about it, guess I will just have to put up with the pain for a few more days. Thanks for all the advice
02-04-2014, 07:13 AM   #8
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
I have just got home from talking to my surgeon and he is organising a temp ileostomy. It's what I wanted but the nerves are coming now just hope it all goes smoothly. Just waiting for a date for surgery now.
02-04-2014, 07:20 AM   #9
UnXmas
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I have just got home from talking to my surgeon and he is organising a temp ileostomy. It's what I wanted but the nerves are coming now just hope it all goes smoothly. Just waiting for a date for surgery now.
Good luck! Please do ask any questions you may have. I'm fairly new to this too but will do my best to answer if I can.
02-04-2014, 07:54 AM   #10
timbo267
 
Join Date: Aug 2012
Location: Surrey, United Kingdom
Thank you will let you know what happens.
02-04-2014, 01:33 PM   #11
nogutsnoglory
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A stoma is great for giving the body time to heal but it comes with its own challenges physically and mentally. I wouldn't rush into it but if you tried meds, setons etc and nothing works than a temporary one may be the best answer.
02-04-2014, 05:34 PM   #12
MicheleM
 
Join Date: Nov 2013
Location: Winnipeg, Manitoba

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After having my stoma, I had 14 years of no crohn's symptoms, then 16 years of occasional symptoms, but nothing as terrible as what I went through before my surgery. I am so glad I had the surgery. My current surgical consultant said it was good that I had the surgery when I did, as I probably saved myself from years of abscesses and fistulas and heavy meds. My biggest adjustment post surgery was coming to terms with the long incision scar. I didn't realize it would be so big. I adjusted very quickly to the stoma. Good luck to you!
02-04-2014, 06:37 PM   #13
AussieMumma
 
Join Date: Jan 2014
Location: Queensland, Australia
Hey timbo! I just got a temporary stoma last week (I had bowel resection surgery, they gave me the ileostomy so I have a chance to heal), so if you have any Qs feel free to ask ,as it is all very fresh in my mind!
03-02-2014, 02:18 AM   #14
Azaelia
 
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Join Date: Oct 2012
Location: Dubbo, New South Wales, Australia
Hey Timbo I am getting one this week too. How is yours have you got it yet?
__________________
Sept 2012 diagnosed but symptoms before that!
On Imuran/Azathioprine from diagnosis, bit of Pred initially
April 2013 On full Anti-MAP through Centre for Digestive Diseases, Sydney: Rifabutin, Clofazimine, Klacid, Imuran (Azathioprine), Metronidazole (Flagyl) for 9 months with no real change
January 2014, stopped Anti-MAP & left CDD
Feb 2014 two strictures and severe perianal disease.
March 2014 Ileostomy and planned Humira soon.
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