As of Friday, 9th September 2011, I became a permanent ostomate!!
After over a year of problems with the J-pouch (which hadn't ever been used), I finally called it a day and chose the bag. There was also the fact that I was told it would never work!
I got the J-pouch on 23rd July 2010 and never had the stoma closed. I had abscess after abscess and was in and out of the hospital at least 10 times! I had a rectal drain in the pouch from day one and finally, in August 2011, I was told that there really is no hope for the pouch. So, come September, I had the pouch taken out and a permanent end ileostomy put in, and 2 weeks post-op, I could not be happier!
I know I'm only 18 and I'm "stuck with the bag for life now," but to be honest, if people don't like it, that's their problem. I have to live with it, and I don't want negativity around me anymore! I can't wait to start my life again and get back out and about with the bag keeping me healthy and pain-free, two things that I haven't been for a long time!! There's also the fact that all my friends are now 18, so we can go out and go to the pub more often, and I've got college and finally getting on with my life to look forward to!
I'm the happiest I have been in a long time, and it's all thanks to finally "giving in" and welcoming the stoma like an old friend!
Good for you...you have a wonderful attitude and will do well as an ostomate. A positive attitude goes a long way. I've been honest with people from the beginning and it sure has helped me deal with it. Good luck in college and keep us posted on your success in life. Becky
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Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
There must be many older and wiser ostomates out there, who would do well to take note of your incredibly positive attitude. Keep it up. Wishing you every success for a long and fulfilling life. Regards, Marilyn from Chichester, West Sussex.
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You have such a wonderful attitude and I wish you all the best with your recovery from the op. Best wishes, Mrs. O xx
I am new to all this, my unexpected op in May blew my world apart but I have to say I am inspired by your attitude. I am so sorry that things haven't gone as well as they could have, but your attitude and insight is going to win you the life and love you deserve. In the last few days, I myself have had a eureka moment...you can't keep an old dog down for long!! Good luck, good life, and good love...you are an inspiration. x
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Really? I'm definitely proud of you. You got better so quickly after surgery :)
Really proud of your positive attitude to your stoma being with you for life, now the world out there is yours, well done in your recovery. Tc Ambies xx
You have many wonderful years ahead of you because of your sensible and realistic mindset. In the coming decades, you will see a great number of medical advancements, some of which will surely improve the quality of our lives as ostomates. Unfortunately, we can only live in the present, but you seem to be doing so with enormous grace, clarity, and fortitude, especially for one so young. It is our great fortune to have you with us.
Good for you, girl. I wasn't sure what a J-pouch was, so I looked it up on the internet. I never knew they could make an internal pouch out of the small intestine. But I am glad to hear you are feeling much better with the bag because you are so young to be going through what you have gone through. Good luck, and stay positive.
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There is also the BCIR, which is like an internal reservoir that you put a tube into the stoma on your stomach to empty, totally continent, but they don't do any in the UK, so if I wanted one, I'd have to win the lottery. But to be honest, I'm happy as I am, thanks to some amazing people!
WOW!!!! You are awesome. I am a new ostomate of one and a half years. I had many problems but am doing okay now. Good luck with your life, keep thinking positive and all will come your way. The person who helped me most was my 17-year-old grandson. When I told him of my surgery, he said, "That is okay, Gramma. You just poop out of a different place than I do." Haha. Be honest and inform those who are ignorant about us. Education of others is really important. God bless you in the years to come.
All the best, Fran. I know you don't like it, but I'm sure you'll get used to it. :)
Haha, I told you I'm winning the lottery to get you a bciR if you want one :). Oh, and the nicest trailer I can find ;)
Hi Fran, just another quick note. Seeing as we are stuck, as you say, with our stoma, I have made a friend of it. I gave it a name (Little Volcano). It may sound dumb, but it made it easier to accept. It all depends on your attitude and yours is awesome. Keep it up.
Hi Franny, I've had an ileo for 26 years and I'm glad to have had it. It gave me my life back. Life can only get better for you. Good luck, Ron in Mich.
WOW!!! You've got it all together, my friend. With your determination, acceptance, and the ability to take your life back (with a little preparation), watch out world! You make me extremely proud, young lady. Our future is brighter with you in it! Your humbled sister in Ostomy, BEG