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UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 9/15/2008 4:20 PM (GMT -6)   
Heeeey!
So im new to this forum and ill start out by telling my life story haha
Im 17, senior in high school =] I was diagnosed with UC on March 18 2008
I went to the doctor Friday and he basically said we've tried the best medications on me and they arent working like they should be. My UC is through my entire colon so the only other option is surgery. And since Im 17 and this is my last yr in high school i realllly didnt want to have to resort to surgery BUT im not getting any better and its getting really annoying hurting and being sick all the time SOOO ive decided to get the surgery. Im gonna wait til January but ill still be able to graduate with my class =] And thats all that matters to be able to walk across the stage with all my friends.
I dont really know what to expect from this surgery so i was hoping you all could tell me a little about what to expect..like will i feel better when i get it? Oh ..Im getting an ileostomy (sp?) The doctor thats going to do my surgery is ranked 2nd and ive heard he's pretty amazing. His name is Dr. Victor Fazio..anyone heard of him?
Im pretty scared about getting this surgery. Never had surgery in my life! So how is it? Hows life? How do you feel now that youve had the surgery compared to how you felt before? Has life changed any since? Can you still do things like a normal person..like go to movies and play basketball?
I definately need some comforting..You know what im going through and your all I have =] My parents dont have this so i sometimes feel alone about this disease.
Thank you very much!
Katrina, Senior in high school! =]
Dx with UC March 18,2008
 
Methotrexate shot once/weekly
15mg Prednisone,Iron,Multivitamin,Folic Acid
                                                     
"I can drop bombs with the best of them"
   hahah Can't we all?
 
 


allan1980
New Member


Date Joined Apr 2008
Total Posts : 10
   Posted 9/15/2008 5:19 PM (GMT -6)   
Hi,
 
Well im sure there are lots of people who can give you
answers sooner but i'll will have to get back you.
Op on friday,so i'll let you no how i get on
 
C ya             blush  

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/15/2008 5:28 PM (GMT -6)   
Welcome to the forum!! I cannot give you my experience with UC since I have Crohn's, but I can tell you that for the last 11 years, I've been treated at the Cleveland Clinic...different surgeon, though.

There are several threads that people with/having TC's post to...I think it is on #19 now...so you can probably get alot of information there.

Do you know if you are having laproscopic surgery? You definately have youth on your side...your body will have an easier time recovering:) You said you will have an ileostomy, will it be permanent? I know most people will tell you that they are lifesavers (I know mine is!!) but some people only have them for a short while or while awaiting the second step of a J-pouch...

And, yes!, live is "normal" after surgery...I can ride a bike or my horse, travel, walk/excercise and anything else my little heart desires!! The best part is you don't have to look for bathrooms every where you go!!

More people will be along to help out with your questions...keep them coming!

UCfree_at17
Regular Member


Date Joined May 2008
Total Posts : 91
   Posted 9/15/2008 5:57 PM (GMT -6)   
Thank you both. Uhm..all i know right now is that my surgery is a two step thing. The first step is to take out my colon and put the bag on my side(not sure what thats called if it has a name) and then wait about 2-3 months for my inside to heal and then go back to get the second step which is hooking me back up inside and removing the bag so i go to the bathroom like normal people. I have another ?..When they hooked you back up inside, when you started going to the bathroom did it hurt really bad? I would think it would since your body and your anus isnt used to that since you had the bag for 2-3 months..Im sure ill have plenty of questions..lol you guys will get sick of seeing me haha
Katrina, Senior in high school! =]
Dx with UC March 18,2008
 
Methotrexate shot once/weekly
15mg Prednisone,Iron,Multivitamin,Folic Acid,Probiotic, and Calcium supplement
 
 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/15/2008 7:58 PM (GMT -6)   
okay, your surgery is for a j-pouch...I know there is a website j-pouch.org that can give you some more answers, too.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/15/2008 8:11 PM (GMT -6)   
i have a perm ileo, so i can't tell you about the j-pouch part. But you will be fine with the bag, you can do whatever, it won't interfere with school or anything like that. You can swim, i just got back from the beach, you can go to the movies (something i couldn't do before, UC makes that hard!) you can go out to eat with your friends, you can do anything you can do now, and if you are like i was then you can do more after surgery than you can now being sick!
Hope everything goes well for you!

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 9/16/2008 7:59 PM (GMT -6)   

Hey UC@16, I've had my temp loop ileostomy since July 2007.  I did not receive mine due to Crohns or UC, but for problems dating back to having a baby 22 years ago.  One thing I've learned is that it's really important to have a toned tummy.  The more muscle control you have, the better off you'll be.  Strong tummy muscles will help prevent hernias.

I've had surgeries at the Cleveland Clinic.  My Colorectal Surgeon there is Tracy Hull.  You'll have to let me know how things go for you with Dr. Fazio.  I've read some good things about him.  I probably would have gone with him, but I went to the Cleveland Clinic because I wanted a female surgeon since I previously went through four surgeries with a male surgeon.  The only cities in Ohio that have female colorectal surgeons are Cincinnati and Cleveland.  From what I've learned, the Cleveland Clinic is one of the best hospitals.

You'll be in good hands at the Cleveland Clinic.  Do you live in Ohio?  I'm in Westerville. We had about a 2 1/2 hour drive north to Cleveland.


Post Edited (Ohio43) : 9/16/2008 8:04:07 PM (GMT-6)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/16/2008 8:22 PM (GMT -6)   
I too have had my surgeries done at CC. I lived near Canton, Ohio at that time. Dr. Fazio was my surgeon as well. I always say he saved my life, and he did. I now have a life. I have CD - not UC. Hey UC@16 --- I sent you an email as well.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 9/16/2008 8:47 PM (GMT -6)   
I recently finished my surgeries and have a jpouch like you will eventually. Takedown (the second surgery for you), was easy for me. IT was still an abdominal surgery, mind you, but my small intestine is a good little worker and really adapted to it's new function right away. It does not hurt me to go to the bathroom, and I had my bag for a year! You will have more BMs than you would with a colon, I have about 4 a day, but it's no biggie, I can hold it, and I just go when I would normally go pee. I am so very happy after my surgeries, although I must say, the first one was difficult. Adjusting to life with a bag takes a bit of a mental toll. I did get over it, and learned to cope with the help of people here. Please feel free to send me a private message if you'd like to talk more about the jpouch!
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 9/17/2008 5:46 PM (GMT -6)   
it's hard being young and dealing with all this stuff. i got UC my sophmore year of high school and just recently had the first j-pouch surgery (i'm 22 now). i suffered for 6 years with a non-stop flare. i tried all the meds and plenty of natural things like acupuncture and supplements. i feel like i missed out on so many things because i was so sick most of the time that i just didnt have it in me to do the things "normal" people did. i never went to a 4 year college like i wanted and just moved away from home for the first time last year. i'm back at my parents' house until i get all this surgery stuff taken care of, but at least now i can have a life. i have the bag for now and i'm not gonna lie, it's a hard thing to come to terms with, but i have no regrets. if you ever want to talk feel free to email me or catch me on AIM if you use that. all my info is on my user profile. good luck with everything!
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/18/2008 8:00 PM (GMT -6)   

Katrina, Welcome to Healing Well. :-)  

I had Crohn's in my large intestine for 7 years before I had surgery, so I understand what you're going through. I was scared to have surgery, too, which is why it took me so long to have it done. I wish now that I had done it sooner, because it would have saved me from years of pain, sickness, and missing out on life.

To answer your questions: "Never had surgery in my life! So how is it?" Basically, they put you under with anesthesia, you wake up when the surgery is over, and they give you pain meds by IV to keep you comfortable those first couple of days.

As with any surgery, doctors say it takes 6 weeks to fully recover, and that's how it is with this surgery. I was out driving and grocery shopping two weeks after surgery, but wasn't ready to go back to work full time until 6 weeks after surgery. I just needed to rest a lot while my body was healing, because it takes a lot out of you. But, you're young, so you'll probably bounce back quicker than that. 

"Hows life? How do you feel now that youve had the surgery compared to how you felt before? Has life changed any since?" I've been disease-free and medicine-free since I had my colon removed two years ago, and I feel as good as I did before I was ever diagnosed with Crohn's.

"Can you still do things like a normal person..like go to movies and play basketball?" Oh yeah, I exercise, go swimming, work full time, go shopping and to the movies without any problems. When I was sick, everything I tried to do was a struggle, but not anymore! turn

I'm really glad you found this site. Please ask us any questions you have.

Take care,

Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 9/18/2008 10:33 PM (GMT -6)   

Hi Katrina, my daughter is also 17 and a senior in high school this year. She was diagnosed at the beginning of 10th grade. After going through all the meds, we decided on surgery. She just had step 1 (removal of her colon, making a temporary ileostomy, creating the j-pouch) on July 3. She was in remission at the time but knew it was only a matter of time before she flared again and had no other meds to try (or ones that we wanted her to stay on).

She was in the hospital for 6 days. She also had never had surgery or been in a hospital before. It was scary but we were there for her the whole time. Like Cecilia said, you are put under with anesthesia. We went with her until right before they wheeled her in to the operating room. She had a great nurse that knew how scared she was and really helped alot. We saw her when she was in recovery. She looked really out of it from the drugs but she also looked good (OK I'm the mom, she always looks good to me). She was given a button to push to self-admister pain medication. I think it was the first thing they taught her when she woke up. yeah   She was moved to a room. We decided to request pediatrics, she's more comfortable around kids rather than older, sick adults. And the nurses can be a little more understanding sometimes. For the first 24 hours, she still had the epidural hooked up (that is the way her surgeon prefers to give drugs). She still used her PCA button to self-administer her pain killers. It wasn't unbearable but more uncomfortable. She started walking the day after surgery. She had a hard time walking (some people seem to do better). But she tried a few times a day. Each day she felt better. In the beginning, the nurses emptied her ileostomy bag. An ostomy nurse came in on the last day to teach her (and me) how to change it. It was a little overwhelming at first but we all got used to it.

When she came home, she started going out on small errands with us. She got tired easily. She had a full incision (some people have the surgery done laproscopically). As it healed, the staples hurt. As soon as they were removed (2 weeks after surgery), her incision didn't hurt much. Because it was summer, we didn't push her to get back to doing everything quickly (hey isn't that what summer is for?). She decided, on her own, when we would go to big stores (supermarkets, BJs) to use the motorized scooter the stores provide.

She started hanging out with her friends in the summer. She doesn't like the feel of tucking the bag into her clothes so she bought several baby doll type shirts. She just made sure they were the longer ones. I know many people here wear fitted clothes with ease. She goes to movies, plays her musical instruments, went back to work. She does participate in gym.

She is scheduled for her step 2 surgery on November 10. She could have it anytime after the beginning of October (3 months after step 1) but wanted to try to fit it in to her school schedule. She missed alot of school the past 2 years and wants to enjoy as much of senior year as possible. Since she was in remission when she had her surgery, she can't say she feels better since her surgery. But she knows she won't have to worry about flaring ever again! And that makes her happy. And she is on no meds!

It's really important to have a good support system for you. Family support will help alot. We didn't even know what UC was before she was diagnosed. Educating yourself (and your parents learning as much as possible about what you are going through) is important. I also asked the surgeon to speak to one of his former patients who had been through the same surgery. I wanted to talk to someone who had been about my daughter's age when it was done. I spoke with a great girl who was diagnosed at 16, had surgery at 19, and is now 22. That also set my mind at ease. I did more research than my daughter. She didn't even want to see an ostomy before her surgery. The surgeon and the nurses all said that was fine. And it was.

Being scared is normal. But looking towards the final result (a happy, healthy body) is the goal. My daughter knows that it may take up to another year for her new pouch to really become "normal". And normal after surgery will be different than normal before. Just a new normal. Also ask the surgeon to go through the surgery and recovery process step by step. The unknown can make things even scarier.

You can also go to j-pouch.org. They are also a great support forum. I have heard of Dr. Fazio from this forum and j-pouch.org. It seems he is a great surgeon.

My daughter's screen name is bratcat. She comes on once in awhile but if you ever need to talk, I am sure she would be more than happy.

Don't hesitate to ask more questions if you have them. And maybe your parents will want to read some of these posts (and maybe ask questions too).

 


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
Step 2 scheduled for November 10
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

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