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13 yr old - 1st surgery soon!

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Posted 9/18/2011 7:39 PM (GMT 0)
Hi everyone
I am new here...been posting on the UC board for the past 2.5 years.
My daughter was diagnosed at age 10. She has been on just about every drug possible and is totally steroid dependent. Her last flare put her in the hospital for 8 days and back on prednisone. There have only been 2 months this year that she has NOT been on steroids. Add to that, she is a 13 yr old who has been out of school for almost a full year and has gained at least 25 lbs , life has pretty much been hell since november 2010! We decided surgery is necessary and step 1 is scheduled for sept 30. She is currently on 2o mgs of prednisone and our plan is to get her down to 10 before surgery. Hopefully she will be able to have a 2 step, and have everything done by the end of this year and be back to school late January.
She knows a lot about the surgery and as she says "can't wait to get the freaking monster" out of her body. I know this surgery is her best shot at getting her life back, but I am so scared to have her go through this. The thought of her being operated on for 8 hrs...all the complications that could happen...it is a lot for anyone to go through.
If you have any pre-surgery advice...or post-surgery advice, tips, suggestions, etc ...please share them! I am so glad this board is here!
Posted 9/18/2011 8:25 PM (GMT 0)
goodness.. poor thing! I don't have a great deal of advice, but just want to wish you all the best. Keep us all posted with her progress. I'm sure she's right about the 'freaking monster'! Good luck and big hugs x
Posted 9/18/2011 8:31 PM (GMT 0)
On the positive side, kids are very resilient and tend to heal a lot quicker than adults. Sorry it came to this for her at such a young age. I was in surgery for 7.5 hours and much, much older, plus really sick going in. She'll do great....best wishes and prayers to you both!

PS- jpouch.org is a great support site as well and I know there are several parents on there with kids that went thru surgery.

Posted 9/18/2011 8:51 PM (GMT 0)
So sorry for both of you that she has to go through this so young.

I was quite steroid dependent when I went into surgery -- I had to do a quick taper in two weeks to get from 40 mg to 20 mg of pred. Since I likely have Crohn's, I wasn't going for the j pouch surgery. The pred definitely slows healing, but as others said, her youth will speed up the healing.

Here's my advice to take or leave. See if she can meet someone who has an ostomy bag to learn more about it (ideally a young person). The CCFA might be able to help or the UOAA; they have programs that can match people. Have her get an empty bag, walk around with it a bit, just get a sense of what she's in for. It's really good to see someone in person who has had the surgery and to see how healthy they look..... made a big difference to me.

Have her meet with an ostomy nurse a bit before the surgery, and wear the clothes she likes, so the stoma can be in a good location.

For the hospital, bring an eye mask (unless she's good at sleeping in the light), something to listen to music on, maybe something to watch videos on, earplugs. Her own slippers and robe is good, as they'll want her walking as much as she can.

I had people in my life send me things to make a "surgery book" that my partner compiled and gave me after surgery, since I wasn't up for many visitors. It had jokes, poems, notes, etc from people all over my life.... not sure if she'd be into something like this, but it was nice to know people were thinking of me when at that time.

Know that the output is going to be green and slimy and smell horrible right at the beginning -- it doesn't stay that way. Her stoma will probably make all kinds of weird noises, which also won't last (it's good if she can laugh at them, instead of being mortified, but that might be hard). It's good to get some deodorizer for the pouch in advance, in case they don't have it at the hospital. A lot of people use M9 drops, and others of us like hydrogen peroxide (3%, about a capful in the pouch).

Here's the other part -- she is going to feel so much better, it's just amazing!

My other advice is to get support for yourself too. Make sure you have people to come wait with you during the surgery, talk to your friends, talk to us. In some ways the surgery day is going to be harder for you than for her.....

Hang in..... this really can change your lives!
Posted 9/19/2011 10:28 PM (GMT 0)
Hi there, I'm a 19 year old girl who has just finished with the three step procedure, and I feel GREAT! It is a long haul but this is the thing that will give your daughter her life back. Good luck to you both, stay positive and stay focused on that light at the end of the tunnel. Surgery really is a fabulous option and I'd highly recommend it especially for young people who have run out of medicinal options. My only regret is that I didn't do it sooner.
Posted 9/20/2011 6:34 AM (GMT 0)
Thank you so much for the kind words and support! Tomorrow we go for a tour of the hospital (Children's Hospital Los Angeles) and to meet with the surgeon and ostomy nurse.
We wanted to do that pill camera test to make sure she has UC and not Crohn's, but our insurance wouldn't approve the procedure. I am a little unsettled that we don't know FOR SURE that she does not have Crohn's. I guess we would be doing the surgery anyway....something I need to discuss with the Dr. tomorrow.
Posted 9/20/2011 11:42 AM (GMT 0)

MustLoveDogs said...
I know this surgery is her best shot at getting her life back, but I am so scared to have her go through this. The thought of her being operated on for 8 hrs...all the complications that could happen...it is a lot for anyone to go through.

It's only natural you're scared - you're her mother. Most mothers wouldn't wish it on their child and instead pray that they can carry the burden instead. Unfortunately, you can't. All you can do is be there for her :)

I remember reading old doctors notes from my GP three months after my surgery. He'd written on it 'you wouldn't know this was the same child. She now has energy and colour in her face'.

I think that in three months time you'll be here writing much the same thing :)

I'll be thinking of both of you :)
Posted 9/20/2011 12:48 PM (GMT 0)
I'm ElddiReMsihT's mom (from above earlier post) and i've got to say that it's a tough thing for a mom to see their child go through the ravages of UC and through hard surgeries. My daughter was diagnosed at 14 and I'm wishing we had done the surgery sooner. It was tough to see her suffer through high school and have to leave college after just 7 weeks due to her UC. She just had her third surgery a month ago and is feeling so energetic and good! She's planning to return to college in January. If you need mom support on here I'd be more than happy to be there for you so don't hesitate to ask. Let me know if you'd like my email addy. ~Lynn
Posted 9/20/2011 1:31 PM (GMT 0)
On UC vs Crohn's -- There are some antibody blood tests that can help distinguish biomarkers for the diseases. They are not fully conclusive, but insurance is more likely to pay for them, and they may help. You can ask you doctors (see http://www.ccfa.org/media/pdf/Diagnosing.pdf, bottom of the second to last page)

I don't think it's possible to be 100% sure that it's UC though.... there are clear markers for Crohn's, but not all people with Crohn's have them. There are no clear markers for UC, just finding no markers for Crohn's and all clinical signs pointing to UC.

I have been indeterminate for my whole course of the disease. Going into surgery, for various reasons, my docs leaned toward my having Crohn's, and then my gi doc was very surprised that my colon biopsied with no markers for Crohn's and being more consistent w/UC. He still leans toward my having Crohn's but we don't know for sure.... the definitions of the diseases are also likely to change as the genetic research gets better.

I know it's scary, but I'm sure your docs are doing all they can to be as sure as possible that it's UC. If it turned out to be Crohn's, then an ileostomy will always be an option .... I know that's probably not what you want, but it would also achieve the main goal of bringing her back to health.

I was told the w/Crohn's colitis and no small intestine involvement there was an 85% chance that my surgery was a complete cure, and that most complications in the other 15% tend to be minor.

Hope all goes well today, and hang in.
Posted 9/20/2011 7:15 PM (GMT 0)
MustLoveDogs,

As you know, Brandon went through his 1st surgery 3 weeks ago today and is back in school as of yesterday.  He is doing amazing! 

You and I have talked often and as mom's, hate to see our kids go through this.  But after the last 6 months of having him take every UC medication under the sun, horrible side effects, sitting for hours getting REMI infusions, just to have nothing help, surgery was our last resort.   If it hadn't happened under an emergency situation, I would probably still be trying to put it off.

But fate took over and he had the surgery and he tells me that he hasn't felt this good in a year! One surgery down and two to go.

I totally agree with everything that Bluegrass says below.   Take what you need for her to be comfortable in the hospital.   After two days, Brandon was wearing his own pajamas and walking the halls. You also know that your daughter can contact him on facebook now that they are FB friends and she can ask him anything she needs to know about the surgery and afterwards.    

He is already changing the wafer and bag himself and as Bluegrass states below, it does smell a lot worse in the beginning.   We use the M9 spray everytime we empty the bag.  And yes, it will make noises from time to time. When he eats something gassy, shocked he has woken up with his bag puffed up like a balloon!   we have also tried a variety of bags and he has decided that he likes the Hollister 18182 (nude color bag with velcro enclosure).  There are so many different types of supplies out there that in the beginning it is really overwhelming. 

We also ordered two Ostomy belts from OstomySolutions.com .  they come in White and Black and are just like a tube top with a pouch to hold the bag.  He wears them every day under his clothes, and you can't even tell he has it on.  The gentlement that owns the company (Les) designed them when he had the surgery and was such a pleasure to deal with ... he rushed out that day to get our belts in the mail for us and we had them the next day.

 www.ostomysolutions.com

Just know that there is light at the end of the tunnel and it is not a freight train!  Once she is feeling good, she will be able to be a kid again yeah Let me know how it goes with the visit with the surgeon. 

Pam

 

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