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David Martin
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 8/17/2010 10:10 PM (GMT -6)   
Umm for the amount of time ive had my bag ive felt great. Better than i can remember feeling.. My mom knows that im happy and life has been very good for me since the surgery. I just got done talking with my parents kinda, were gonna talk again but we talked about if i could keep my bag. now my dad isnt that easy on the topic he wants me to go through with 2 more surgerys and just be done. But im happy how i am i dont mind emptying my bag a few times a day or changing bags every few days just i dont know what to do. i wouldnt mind living with the bag. Im going to talk to my moms friend whos been living with one since he was 14 so i think he can give me a few words to help.

I sleep at night sometimes not knowing if i do have a bag. "ill reach down to double check heh.."

Can anyone give me some kind of advise? or like what its like to live with it for a longer time than ive had it?
Adam, 15.

Diagnosed with Ulcerative Colitis a little over three years ago. I no longer have UC. I had surgery may 25.
 


Off All Meds

Meds--
--current meds--
 Dicyclomine ( Bentyl ),Ondansetron ( Zorfran )Sudafed, Robitussin, Viokase, Mesalamine ( Lialda ) ,Canasa (mesalamine ) “Suppository”.

--Off meds--
Hydrocurtisone Rectal, Prednisone, Mercaptopurin (Purinethol)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/17/2010 11:09 PM (GMT -6)   
well ive had mine for 3 and half years, and yeah it can be annoying at times, but im glad i didn't opt for a jpouch.
What i would tell them is, you would like to wait until you are out of school because you dont want to miss anymore school with anymore surgeries. Tell them you are happy with it now, and you can always change your mind and go for the jpouch if you change your mind.
Dont tell them this, but when you turn 18 you can do whatever you want.
Personally, if it were my son, i would want him to keep what made him happy. You are old enough (15, right?) to make a decision like that.
In fact (and you can tell them this if you want) we had a scare with my son where he was having some bloody D and i looked straight at my husband and said, if it turns out he has UC, his colon is coming out, asap. We decided that it would be left to where he could have a jpouch and when he got older, we would let him decide what he wanted to do.
I'm sure your Dad is just worried about how a bag will affect your life, he probably thinks that will be harder on you than having more surgeries, but i would just tell him that, for right now at least, the surgeries would be much worse for you.
You do have alot oif stuff coming up, driving, senior year, prom, graduation, college apps (if you are going) explain that you dont want the added stress of dealing with the surgeries and the learning curve there.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/17/2010 11:10 PM (GMT -6)   
and i often forget i have mine, in fact sometimes i forget until its almost too late, lol. But it hasnt hindered me in anything i want to do, its just made life easier.
Even having a stomach virus is easier, lol.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 8/17/2010 11:58 PM (GMT -6)   
     I never had the option because me surgeon said j-pouch surgery would be too risky for me because of my age, 64, and my extended prednisone use.
     Our friends son has a good friend who has had a perm ileo since childhood, is now in his mid thirties and happily married with two children.
     I agree with summerstorm.
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days. Prednisone, Asacol, Rowasa enemas. Two year remission. Flare..switched from Asacol to Colazal. Two year remission. Started 6MP in 2002. Flared yearly from 2003 to May of 08. Hospitalized for ten days in May of 08. Flaring more often since. Off 6MP. Remicade failed. Humira failed. Total colectomy with perm. ileo .

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/18/2010 8:09 AM (GMT -6)   
It's great that you are that comfortable with your ileo that you want to keep it!!! You may change your mind later down the road...which is okay, too.

As a parent, I can see where your parents want the best for their child...which is probably why your dad wants to your go through with the J-Pouch surgery. Most people who go through all three steps are very happy with theirs...Bella, are you out there??? Bella went through the surgeries last year and I think she was a senior and is now in college and loving life (which is why we don't see her very often:):):))

Can your doc get you in contact with someone your age who has done the J-Pouch surgery? Maybe talking to someone (with your parents, too) can help them understand a little more? You could even do a pro/con list for the next time your and your parents talk about the subject. That might help your dad see a different picture...

Don't hold it against them...parents can have a difficult time when their children are ill. Sometimes it's harder than being sick yourself!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/18/2010 8:25 AM (GMT -6)   
It makes me sad that your parents can't respect your decision, I am not a parent so I can't see it from their viewpoint. However, maybe you and your parents can compromise. You can delay further surgery which would give you further time to see it from their perspective as well as for them to see how well you are doing as you currently are. Maybe in a couple of years they would come around to your side.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 8/18/2010 1:08 PM (GMT -6)   
My 18 yr old son had his colon out, an ileostomy for 4 months then had his J pouch build. So I have seen this through the eyes of parent.

I think where your parents are probably coming from is the thought that they think they know you pretty well. They see that you have been through so much and now, for the first time in a long time you are feeling good. It is only natural for you to want to take a break, enjoy your renewed health for a while and put off having your life messed up for a while again. However, in their eyes, they probably feel that you will someday want the J pouch and do not want to see you just put if off. I am sure that they want to see this whole thing put behind you as quickly as possible.

I am not saying that that is the right answer, for you, but I am sure that is where they are coming from. If you have really thought this out and do not know if you want a J pouch or not then you really need to sit down and convince them how well you have thought this through. Talk to them, in a mature manner, showing them that you know all the pros and cons and the reasoning behind your decision. Sometimes it makes it easier to write all your thoughts down, in the form of a letter and give it to them to read. I am sure that they will then listen. Something to keep in mind is when, if you decide to go ahead, would be the best time for the next surgery. There are a lot of students that have their colon out one summer and then have the pouch built the start of the next summer so that they do not miss any school. The other thing is insurance. If there is any chance that you want a J pouch you should have it done while you are still under your parents insurance. In Canada, if you do not continue in school, our private insurance ends when you turn 18.

My son, Dillon, hated the thought of feeling so good and then heading into surgery AGAIN. However, for HIM, he is now so happy that it all over.

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 8/18/2010 7:01 PM (GMT -6)   
I agree with Collicat, maybe it's an insurance issue. I think there's so much pressure on people to be "normal" and show no sign of weakness or illness. Your parents may want to protect you from any stigma you might face in the future (dating etc). You've been through so much they probably don't want you to be hurt again and to get on with your life.
I'm so impressed with your posts and your response to this whole situation, David. My daughter has UC and we are trying our best to get her into remission but if not I hope she grows up with an attitude like yours. Tell your parents that you are finally pain free and able to enjoy life and that you don't want to be subjected to any more pain (surgeries). If you decide to go ahead with the jpouch in the future, you'll be able to but at least you'll be able to enjoy your teenage years. If my daughter does have surgery, I would do what summerstorm had decided to do and go with a temporary ileo until some point in the future when she could have it reversed if she wanted.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 8/21/2010 7:37 PM (GMT -6)   
Adam,

Off the top of my head I would say that it is your body and your decision. However, I would check with the doc and see if there is a limit on the time frame where you can change your mind and do the J-pouch IF you do change your mind. You are near enough 18 to think for yourself. AND with every surgery there is a risk. You face 2 more ? to have the J-pouch. Plus each surgery comes with added risk of forming adhesions on the small bowel which can lead to small bowel obstruction. Not always does this happen, but it is a risk. AND the risk increases with each surgery IF you are prone. Who knows if they are prone or not until it is too late?

These are just some things to consider. I am not a parent. But I'm sure your parents have your best interest at heart. BUT what life all boils down to is that you are you. You have only one body. You are in control. Nobody else. Good luck Adam.

Best regards, Rosemary
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