Preparing for surgery

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izzi'smom

izzi'smom

Joined
May 23, 2011
Messages
1,549
Our doc has sent us to find a surgeon...he said her entire large intestine needs removed. I have seen/briefly cared for a stoma, but give me the basics...what will I need to know?
and I am focusing on the dumbest thing ever...but she loves to swim...is this possible??
TIA!!
 
Hi Angie,

Sorry to hear your daughter has to go through this process, but hopefully she'll feel much better for it. I don't have a stoma myself, but I am pretty sure that most people on this forum will tell you that you can swim with one. I think there are special smaller bags you can even wear that are more discreet for swimming. I even once read an article about a young woman who had a stoma and she was an avid surfer, and she surfed with hers. So I think it is something that should be able to done, maybe with a specialized bag and a pretty rash-vest.

Goodluck,
Fabs
 
Swimming is completely possible!! I go in my hot tub all the time without any problems whatsoever. You don't need any special equipment or anything. The only thing I do is dry my appliance off with a hair dryer afterward, and if I need to, I change my appliance (but for the most part I don't need to do that). You can get smaller bags if you're that concerned about it, but I just tuck mine into my bathing suit and it hasn't been a problem. If I can find it, I'll post the link to my pics of me in my bathing suit that I posted on here....you can't even tell that I have a stoma.
 
Thanks so much for all of the replies...I enjoyed looking over the thread and learning a few things I didn't think of (I wasn't even considering that I may need to change her attire-too funny, though-at the moment she hasn't worn pants that snap/button in over a year because she can't get them off fast enough to use the restroom).
Her entire large intestine is affected (severe)...does this mean she'll have an ileostomy?
 
If they remove her entire large bowel then it will be an ileostomy Angie.

Dusty. xxx
 
This is some sad news! Sorry Izzi has to go through this, but if it helps, I spent the whole of my adolescence and before being in so much pain due to Crohn's which took it's toll on my family and my emotional wellbeing. Now I have a bag and the pain is over. I didn't want to lose my whole colon but in the end I'm glad I did as I probably would of lost it all in the long term anyway. It just prevented a lot of hassle etc further down the line and more surgeries.

As I ended up with a bag anyway, I kind of wonder why I went through all that pain and suffering only to end up with the same outcome. I wish I'd had it years ago as I could of had more of a normal life with a bag (although that may sound ironic to people who don't have a stoma!). I don't think I would of coped as well mentally though back then but hopefully Izzi is young enough that she can adapt to the idea easily. When you have bad crohn's, your life tends to evolve around going to the toilet.. when it's safe to go, if you're going to get stomach pains that will make you want to go etc. Now I have none of that. It's so freeing. You also only have to worry about smells when actually emptying it. I honestly feel like Izzi will also find it more freeing. It's easy for me to even forget that it's even there.

Does she go to a children's hospital? Meeting other children who have a stoma and talking to a stoma nurse should help a lot. :)
 
izzi'smom said:
Thanks so much for all of the replies...I enjoyed looking over the thread and learning a few things I didn't think of (I wasn't even considering that I may need to change her attire-too funny, though-at the moment she hasn't worn pants that snap/button in over a year because she can't get them off fast enough to use the restroom).
Her entire large intestine is affected (severe)...does this mean she'll have an ileostomy?
Click to expand...


Yes.... is you lose the WHOLE large intestines its a ileostomy if your colon is still there its a colostomy.
 
I am so sorry your baby has to go through this. But, she will be so much healthier for it. I think since you've been reading thru our subforum, you can see that for the most part, all of us are pretty healthy now, and certainly happier than when we were so ill.

We have our lives back!!! We can be normal! We can swim, surf, run marathons, cycle, study, and go to the grocery store! (yes, even that was impossible for me at one point)

And...you can manage this! There is a learning curve, but all of us are here. And you will have a stoma nurse to help as well. Your Izzi's life will be different, but it will be better, eventually.

Bless you and Izzi, and major squishy belly hugggggggggsssssssssss!!!!!!!!!!
 
True to all...it WILL take some adjusting but I am hoping for a positive outcome (and that the Crohn's doesn't spread elsewhere).
Misty, our doc says we don't have qualified surgeons here...we will be traveling 6 hours if insurance approves it. I *was* hoping at some point she could meet someone with a stoma/see one before she wakes up with it. She doesn't know yet what is in store for her...she stresses a lot and I'd like to hold off for as long as possible. :) I wonder if I can put an ad in the paper "stoma model wanted" lol!
 
Our local ET clinic at the hospital had offered for me to meet someone with a stoma before my surgery. They have 'stoma volunteers' who make themselves available to answer questions, do 'show-and-tell,' etc. Perhaps you could ask at the hospital if they have something like that for Izzy in order to demystify the whole thing for the two of you.

Elsewhere on the forum, I think Michelle (Misty-Eyed) has a fantastic video and pictures of her stoma that might be worth checking out.

I wish so much wellness for Izzy and that her stoma will be as life-saving for her as it has been for me.

And I hope you get as much relief from this as my mom has experienced, even though I'm about 40 years older than Izzy!

Kismet
 
Michelle, our own Misty-Eyed (yes, its confusing she is Michelle, I am actually Misty) posted a video on here.

To make it less scary, Izzi should know this...Stomas are like babies. They talk, they tickle, and they dance! They are great fun to have! Why sometimes Stomas have so much personality, they are funny!

I soooo wish i was closer. I would happily introduce Izzi to Stan. Stan loves to dance and talk. (he'd be a great hollywood star..no doubt) We most of us name our stomas. They have become another part of 'us'. And they do indeed have personality.

I hope there is someone who you can meet with! If the op takes place, you will be assigned to a local stoma nurse more than likely. As well you will meet with one in the hospital before and after, and during Izzi's recovery. You will not be left on your own. More than likely, your stoma nurse will know locals who you can meet with! There probably are local support groups as well. Have you checked with the CCFA? You are facing a big task here, and you must be terrified! I so wish I could be there in person to help you and Izzi.

Just breathe......it will be ok. Honestly, it will. There will be alot of bumps, but there is no choice but to get through them, and you will. You've already been through alot!
Bless you.
:ghug:
 
I got told that as I've only every had Crohn's in my colon, that the changes of it spreading are actually very slim. Surgery was always something that me and my parents had always thought of as being a last option. I guess it's always what it the right thing to do at the time. When you run out of options there's only so much you can do to make a better quality of life.

If she does end up with the surgery, I'd really push as much as possible for laproscopic surgery if it's a possibility. Open surgery causes so much more scar tissue and she's so young! My scars are hardly noticable and it made my surgery SO much easier. I would quite happily wear a bikini even though some of my bag would show.

Have you ever heard of Jessica Grossman? I know that she lives in NYC at the moment and I know that if I was in Izzi's position, meeting her would of made me feel better! She's so pretty and is a huge inspiration to many people who have to have stomas. She made a youtube video here; http://www.youtube.com/watch?v=fuYI1ZkF01U
But she's also on twitter and facebook. It is a shame you don't live in the UK though or me and Misty would certainly take a road trip to see you both! She sounds like a trouper and she is going to end up one hell of an awesome lady. Just you wait and see!

Like Misty said, it will be hard going and filled with a lot of learning curves, but in the long run it should really be worth it x1000!
 
Where is she going for surgery....
My son calls my stoma a mini brain lol.. she will do great once she doesnt have to run to the bath room all the time and have stomach aches.... and I dont know if she has been on steroids or not but I know I have one and off my whole life and they make you feel like crap as well :(
So her being able to get off of those to will make her feel great :)

Do you know when her surgery is?
 
We have had a second opinion at boston childrens and hope to get insurance approval. To return there. we were told by our boston doc that she would need surgery within 4 years (this was last summer) and our doc here told us he wants it done within the next 6 months.
I have been told that children presenting like her "generally tend to do well after surgery (no hedging there, huh?) She was steroid dependent and off and on pred for a year. It started losing effectiveness a few months back; she has been off about 2 mos now. Michelle, is yours an ileo or colostomy? How long have you had it, and how are your symptoms? I'll have to look up jessica, and maybe we'll take a trip to the uk (kidding ;)) to visit!
 
Michelle's is a colostomy mine is a Ille...
I can tell you one thing I WISH i would have had mine as a child I missed out on SO SO much... I have had the worst time the last 5 years. Missed so much of my sons activities in bed and the last year it almost killed me I lost 30 pounds because I couldnt eat. If I did eat I ended up in bed in a ball I was only 126 to start with so I was so small by the time they operated.
I am now 99lbs and struggle to keep that weight on :(

I think now my baby I lost and my hysterectomy was all cause by my intestinal problems :( it even moved my stomach to the side. I thin Izzi will be a much happy child and mom and dad will feel better too :)

Keep us posted I am praying for her <3

izzi'smom said:
We have had a second opinion at boston childrens and hope to get insurance approval. To return there. we were told by our boston doc that she would need surgery within 4 years (this was last summer) and our doc here told us he wants it done within the next 6 months.
I have been told that children presenting like her "generally tend to do well after surgery (no hedging there, huh?) She was steroid dependent and off and on pred for a year. It started losing effectiveness a few months back; she has been off about 2 mos now. Michelle, is yours an ileo or colostomy? How long have you had it, and how are your symptoms? I'll have to look up jessica, and maybe we'll take a trip to the uk (kidding ;)) to visit!
Click to expand...
 
No, mine is an ileo too. Its Misty that has the colo. Too much of my colon was involved, I had strictures and perianal issues, so it was decided to take it all out and sew up the end. I've had it for exactly 6 months now.

I'm brilliant now. I only take loperamide to thicken up my output and that's it. No need for any other drugs. I feel just like a normal person and have a full time job which I love. I no longer have to worry about slipping down into a flair at any time. I do have some fluid collection inside which needs to be drained somehow, but that doesn't effect my day to day life.

I hope you can get to the hospital in Boston! Hospitals that deal purely with paediatrics tend to be better. I used to go to one in London. You should come to the uk!! Sounds like you need a holiday!!
 
i've had crohns since the age of ten, ive tried all meds and even liquid diets with gastric tube feeds for a year as a child.
9 months ago aged 21 i got my large intestine removed- only my large intestine has ever been involved and i was in a bad flare that they could not control. i have a permanent ileostomy. will you daughter be having keyhole/laproscpic or open surgery?
i had open surgery as the crohns was too bad to have keyhole.

life has been amazing since surgery and like misty-eyed said i also wish i had it sooner. my surgeon and stoma nurse said getting this op young is putting you at such an advantage. recovery was hard, but so is all surgery, you feel improvements everyday.

http://www.crohnsforum.com/showthread.php?t=28320

hope it works out! let us know when you eventually get a date and we can help with what to pack and little tips during recovery!!
hannah.x
 
Sorry. Yes she def can swim for sure with a stoma/bag. Also I know at first it's scary but soon she will have more control of her life instead of her tummy controling her So that will make her more happy. Also she is so young so she will adjust better. Cuz Hehe I think I complain and fuss way more than my children do. Children are I Think such strong people. I Think having her meet someone with a stoma is an awesome idea...:thumleft:
 
SO SORRY with your names your screen name I mixed yours up I am so sorry sweetie :)

Misty-Eyed said:
No, mine is an ileo too. Its Misty that has the colo. Too much of my colon was involved, I had strictures and perianal issues, so it was decided to take it all out and sew up the end. I've had it for exactly 6 months now.

I'm brilliant now. I only take loperamide to thicken up my output and that's it. No need for any other drugs. I feel just like a normal person and have a full time job which I love. I no longer have to worry about slipping down into a flair at any time. I do have some fluid collection inside which needs to be drained somehow, but that doesn't effect my day to day life.

I hope you can get to the hospital in Boston! Hospitals that deal purely with paediatrics tend to be better. I used to go to one in London. You should come to the uk!! Sounds like you need a holiday!!
Click to expand...
 
So sorry you have to go through this, but my ileostomy has been a blessing in disguise. I am amazed how easy it is in reality, compared to how I imagined it would be. My scar is almost invisible and the bag is just not an issue to me, at all.

Being young, Izzi will adapt and take it all in her stride, as kids do. I so hope she is pain free and happy very soon.

Wishing you and Izzi lots of love, Kaz xxx
 
Michelle and I could swap places occasionally just to confuse the heck out of everyone!! :ywow:

Course, she's MUCH prettier and younger than me. It was easier before when our sig lines showed up on every post, now, not so good!
 
Lol oh please! You are like golilocks with your long golden hair! Guess it doesn't help that we live near each other to add to the confusion!!
 

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