My 25 year old daughter had a full colectomy and j-pouch surgery 2 months ago. She is very discouraged that she can't function normally yet (I know it's only been a couple months)....going to work is very difficult for her and so is her ability to socialize because of frequent bowel movements. She had a terrible experience with wound healing and her bag from first surgery which left her unable to do much of anything for a few months. She's depressed and wondering if it was all worth it. (The pain and discomfort of UC and Prednisone almost seem better.) She's reluctant to join a group like this and I was wondering if anyone who she might think of as a contemporary would contact me so I can maybe encourage her to email/IM or start some type of communication with someone who knows and can be empathetic to what she's going to.

I am definitely NOT a support group type of person. The last thing I need is to sit around with a bunch of people griping about the same problems I have. But, online support is so different. You go when it is convenient for you. You don't have to deal with anyone or anything you don't want to. This place is one of the most user friendly environments, and we are very protective of our members.

And, if she really wants to come incognito, she can lurk without registering, just to get a feel for the place. She can get all the information she wants without ever really participating.

Just send her a link and see what she thinks! We have quite a few young adults here.

Jan

Ellyn,
I know of one member who is closeby and also close in age. I have contacted her and told her of your post. I am sure you will hear from her.
I sent you a PM with some info.

Ellyn I had surgery 2 months ago too. I'm 18. If she wants to, she can email/IM me (my info's in my profile). I've had a lot of complications also, and I can definitely understand where she's coming from with the depression/wondering if it's worth it. But, encourage her to come here too. I'm not a support group type person either, which is why I'm here and not going to meetings every week. We're all incredibly welcoming and after a while these people become family.

Ellyn, I can relate to your daughters problems post-op. I was 23 when I had my operations, spent my birthday and another 2 months in the hospital . The great part of coming to this site is you can be as anonymous you want, she can share as little as she wants or spill it all out for everyone to see. Feel free to have her e-mail me at any time, my address is scottheather74@hotmail.com. Unfortunately for
her she is going through the roughest part of the surgery, the adjustment period. It takes time for the body to adjust and than for her to feel normal again. There is light at the end of the tunnel, for me it took about a year to feel confident enough to do EVERYTHING I was doing before I even had UC and not worry about there being a clean bathroom with 15 feet of where I was standing. I met my wife when I was my sickest, we had only known each other for a few weeks when I had surgery, now it's 10 yrs and 3 children later. I was lucky to meet a person tht didn't care if I was sick, she really helped me get through it. She is lucky to have you as a mom and a friend, it can take a lot to get through this kind of surgery and trying to help her is a great action. Good Luck to her, Scott Mc

Hi Ellyn,

I'm 28 and had my first surgery in November and just had my takedown on March 25. I would be more than happy to email or talk with your daughter. I can relate to all the feelings she's having and am always looking for other people my age to talk to about all this "crap"! She can email me at allisonmiller118@hotmail.com

Hi Ellyn,

I am 22 years old and had a full colectomy with jpouch surgery back in September. I have not had the takedown yet, that is coming later this month. I know exactly how your daughter feels. Being so young and feeling like you are just not yourself anymore. I went through the same thing and I'll be very honest, I go through it still today sometimes 9 months after the first surgery. It can be really hard, and the biggest obstacle that I've tackled is just letting go and realizing the bag/pouch does not make you who you are, it is just a part of you. I would be more than happy to talk to your daughter and try to give her positive words of encouragement! I do not regret anything that had to happen, I am so happy with the results and am finally able to live my life again. If you'd like to talk or have your daughter email me at sillynanners22@aol.com

Hope I can help!!!

Marisa

Hi,
Your daughter could also try a great ostomy site, www.uoaa.org. They have a young adult (YODDA) discussion board where she can read and/or participate in online discussion boards such as this, except for it's all ostomy related since that's what she's dealing with right now. It's like this board... very informative and supportive about the bag issues!

I am 23, she can contact me... I have not had the takedown yet but have lived with ostomy for 2 years and will go for takedown soon.... she can masg me ebarapp@gmail.com

I had my j-pouch surgeries at 26 (after only 6 months with UC). After a long road, including 4 surgeries, I'm finally very healthy and happy. I have a wonderful husband, a wonderful 2 year old son and a baby daughter on the way. If you had asked me when I was 26 (BTW - I'm turning 37 tomorrow)if I ever thought any of that was possible, I would have laughed or thrown something at you.

But life has a funny way of continuing on, whether you are ready for it or not and in the end it's been all worth it for me. That's not to say it's been perfect. It hasn't been. But I survived and found the best solution for me, the one that allowed me to live my life. Your daughter will find that too, it just may take a while. Either of you can feel free to contact me by PM any time.

I am also 25 and lived with an ostomy from the age of 19-20... have had the j-pouch since.. maybe you can just show her this site so she knows that there are lots of young women out there dealing with the same thing.. I'm not so sure any of us really look forward to being part of a support group but it sure is nice to know that you aren't the only one.. I still get upset everytime I have to use a public restroom with more than one stall and it has been 4 years! well hopefully she becomes encouraged enough to read this blog and become a member of our group!

Hi Ellyn,
I am also 25 (26 tomorrow), and live in the far burbs of Chicago. I'll help in any way I can, I'm running the span of emotions sometimes too. I just had my pouch removed and perm ileo placed on April 8th. Please contact me if I can do anything.