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03-02-2016, 05:23 PM   #1
Crohnsman1997
 
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Ileostomy

Hi everyone,
I was diagnosed with crohns in 1997 at age 7. I am now 25. Had my first surgery 2 years agom then right after I had a leak and had a temp ileostomy for only 4 weeks. Then just about a year ago I went to another temp ileostomy, the surgeon chose for it to be temp I wanted it to be permanent. But he chose to reverse in 5 months. And I gotta say I have been missirible since then. I got in to talk to my GI he is sending me to Cleveland clinic to see about about getting a permanent ileostomy. And I'm just wondering has anyone ever requested getting a permanent ileostomy and did the surgeon give you a hard time about it? Also is there anything I can bring with me like a list of pros to having a ileostomy? And should I just tell him how missirble I am. And how i am afraid to leave the house because of the diarrhea and how many times I pooped myself. And all the meds I've had tried but none of them had and affect on me? Sorry for all the questions I really just want my life back. I was doing so good on a ileostomy now I'm afraid to leave the house because I dont know what will happen when I leave.
03-02-2016, 05:27 PM   #2
Cat-a-Tonic
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Hi Crohnsman1997, welcome to the forum. I have moved your thread to the stoma subforum because you might get more replies in here.
03-02-2016, 09:11 PM   #3
Crohnsman1997
 
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Thank you
03-02-2016, 09:39 PM   #4
Crohnsman1997
 
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Anybody have any advice
03-02-2016, 10:27 PM   #5
DJW
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Hi and welcome.

Mine was permanent from day one.
Would a second opinion be an option?
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Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
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03-02-2016, 11:47 PM   #6
Susan2
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
03-03-2016, 12:21 AM   #7
Susan2
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My ileostomy has been permanent from the beginning but I was having a terrible time for many years before it was done.

Sorry - yuk warning...

Nobody who has not gone through it understands things like standing in the supermarket with a full trolley and realising your bowels have just opened of their own accord. Whether to walk very slowly to the checkout, hoping that nothing will dribble out or to leave the trolley and run, knowing that you will leave a trail behind you? Or sitting in the car in a pool of faeces, knowing that you have to turn the car around and drive all the way home before you can clean up yourself and the car.

I have had my ileostomy for 16 years now and do things that I could barely have imagined before it. True, it still misbehaves at times - like in an eco-resort on top of a volcanic island in Lake Titikaka in Bolivia - but I couldn't have imagined taking a trip to Ecuador and the Galapagos, Peru and Machu Pichu and Lake Titikaka before the ileostomy. And I went snorkeling every day in the Galapagos.

Almost certainly, your life would improve physically, socially and mentally. Your general health would improve. As you will know from having a temporary ileostomy previously, you will still have to be careful about what you eat and drink - some people find this more than others. And having a bag brings its own emotional problems, especially at your age.

In the end, only you can make a decision like this. You are young and have the rest of your life before you and you need to make the decision that will best enable you to make that a full and satisfying life - which won't happen while you are hiding in the house.

Be strong and all our thoughts will be with you in your visit to the Cleveland Clinic.
03-03-2016, 05:01 PM   #8
Crohnsman1997
 
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Thank you Susan. My fiance really thinks it would be better if I went on a perminant ostomy to bvause she said she misses doing things. Like just going out to eat or the movies. And when I had my last ileostomy I actually went on a cruise to the bahamas I couldn't even think about doing that now
03-03-2016, 05:27 PM   #9
Crohnsman1997
 
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Hi and welcome.

Mine was permanent from day one.
Would a second opinion be an option?
That's why I'm going to Cleveland clinic to see one of there colorectal surgeons. I have been on so many different diarrhea meds and none of them have an affect on me
03-03-2016, 06:22 PM   #10
Susan2
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None of them, except Prednisolone had any effect on me either - and even Pred eventually stopped doing that.
03-03-2016, 06:43 PM   #11
fuzzy butterfly
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Hi crohnsman welcome to the group. I had a temp ileostomy for 11 mths . Got my life back via it. Had it reversed. Still have urgency issues sometimes but great otherwise. If i was i need of one again i would ask for a permanent one too. Tell your docs how badly your life is affected and you need ... a permanent one this time. Though saying that if they do you a temp one you can go for alot of years with it usualy if you want.
Best wishes n i really hope you get your wish.please let us know how you get on. 💕💕
03-03-2016, 07:05 PM   #12
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Thank you its like I lost all control.of my bowels I went on myself probably 3 times today once while I was in bed. My fiance is going with me to help me explain and my GI put me on xanax because of the anexity from all this and being depressed. For awhile I really just wanted to end my life because I can't deal with this anymore I'm so depressed I feel like its never gonna end
03-04-2016, 04:56 PM   #13
fuzzy butterfly
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Hi again. Im sorry to say this but that last part of your post, is what you should tell the gi. I told mine i was going to slit my throat if i didnt get help now. It worked for me. Awful isnt it but sometimes we have to resort to telling them this to get help.
Be firm n dont take no c**p from them. I dont anymore. My health my life my body, not yours.so i want it sorted now. I will tell them point blank.
Wishing you luck n keep strong. Hugs 💕
03-04-2016, 06:07 PM   #14
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Hi Crohnsman1997
I can't understand why the doctor made you reverse your ileostomy after five months if you wanted to keep it. It's your body and your bowel so it's your decision not anyone else's.I have an ileostomy since August last year which is meant to be temporary. My large bowel is still in place but I have chosen to keep my ileostomy as medication did not work.I was on humira every week, imuran daily and steroids yet my bowel still scarred again and perforated. I only have 157cm of small bowel left so I am keeping my ileostomy to save the small bowel I have left and my large intestine.Like you I had an ileostomy before which kept me well without taking any crohns medication only imodium to slow things down. I wanted to keep the ileostomy the first time because I was so well and able to eat whatever I wanted without crippling pain. Unfortunately I was pregnant and the baby made my stoma prolapse so I had a section and the ileostomy was reversed.The decision to have an ileostomy is not easy and has it's own problems but I know my life is much better with it than without.My hope is that maybe in ten years they will have a solution to this awful disease or much better meds and I will reverse the ileostomy.If that's not the case then I am still happy with an ileostomy and no crohns.
03-04-2016, 06:13 PM   #15
Nosebag
 
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Hi Crohnsman1997
I can't understand why the doctor made you reverse your ileostomy after five months if you wanted to keep it. It's your body and your bowel so it's your decision not anyone else's.I have an ileostomy since August last year which is meant to be temporary. My large bowel is still in place but I have chosen to keep my ileostomy as medication did not work.I was on humira every week, imuran daily and steroids yet my bowel still scarred again and perforated. I only have 157cm of small bowel left so I am keeping my ileostomy to save the small bowel I have left and my large intestine.Like you I had an ileostomy before which kept me well without taking any crohns medication only imodium to slow things down. I wanted to keep the ileostomy the first time because I was so well and able to eat whatever I wanted without crippling pain. Unfortunately I was pregnant and the baby made my stoma prolapse so I had a section and the ileostomy was reversed.The decision to have an ileostomy is not easy and has it's own problems but I know my life is much better with it than without.My hope is that maybe in ten years they will have a solution to this awful disease or much better meds and I will reverse the ileostomy.If that's not the case then I am still happy with an ileostomy and no crohns.
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