Considering surgery for 11-yr son with u/c--need advice

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saucy
New Member


Date Joined Jan 2006
Total Posts : 2
   Posted 5/23/2006 4:35 PM (GMT -7)   
My 11-year old son has had ulcerative colitis for 2 years, and I am finally realizing that continuing to experiment with medication at this age is probably more dangerous than colectomy.

I have read a lot of threads, so I have a general idea what to expect. I am wondering if anyone has had this surgery so young (or has a child who has), and can give me an idea as to how it will affect my son's life--school, sports, etc.

Midwest Phil
Regular Member


Date Joined Mar 2006
Total Posts : 43
   Posted 5/24/2006 5:17 AM (GMT -7)   
Wow Saucy,  that's one that is tough for the books.  I was 29 when I was diagnosed so I can't speak from experience at the age of 11, but I'll relay a few things I have encountered.  I think the first thing you have to ask, is the disease interferring with his lifestyle yet?  Can he not play sports or sit in class without having to relieve himself?  Also, what kind of medications is he on and to what level do you and the doctor agree it should be taken before serious consideration should be given to surgery. 
 
Before surgery, will he have to have an ileostomy or colostomy as a permanant appliance?  Or will the colectomy be able to be reversed with a take down of the ileostomy. To me, quality of life is the biggest issue.  Like I said, I was diagnosed at 29 and battled through it for 15 years.  I am a police officer and I often would get up hours before my shift to purge my system then go without eating all shift in order to maintain some control, especially during times of flair up.  There was only one occassion that I had to leave a call to use the bathroom, fortunately we had enough manpower there.  But standing a barricade line or long term assignment without a bathroom near by was frightening to me. 
 
I muddled through until I had a heart attack at 44 and three weeks after that, a perforated colon that caused emergency surgery to remove the colon and then a ileostomy bag.  That was in October of '05.  In February '06 they reconnected my small intestine to the rectum area and I was off work for three months.  In April '06 they removed the ileostomy and I was off work three weeks before returning.  Fortunately for me, I am at an inside job now, but I still have to go frequently as my system adjusts to having to do the job of the colon.  Lot's of immodium and bland diet.
 
I guess the long and short of it is, I can't answer your question, but hopefully I have given some food for thought.  For a few brief moments after all my surgeries I have regretted having the ileostomy removed, but like I said, those were "BRIEF".  Mostly out of depression.  Now, I can go anywhere I want (within reason for now) and that will improve over the year when my system tightens up and I don't have to rely on close proximity toilets.  Hang in there.  I know it's a tough decision, but look at the big picture. 

God bless you and you're son.  Phil

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 5/24/2006 7:18 AM (GMT -7)   
Hi There
 
I had my ileostomy surgery when I was 10 years old due to UC - I'm 39 now and still say it's the best decision my parents ever made for me. It gave me my life back. Since then, I've completed school, work full time, travelled the world, ridden elephants and camels, rollercoaster, been rock climbing etc all without a problem.
 
I will admit it did get me out of sport at school - no reason for it really except I hated sport and the teachers didn't know any better and I wasn't about to tell them differently (what good is having a major surgery if you can't play on it once in a while :) ). I did, however, join the school army cadets and participated in their activities without a problem so a few scratched their heads at that one lol.
 
No one at school knew about my surgery except my teachers and a few close friends. The rest knew that I'd been sick and had had some sort of abdominal surgery and was well again - but that's all they knew despite going on school camps with me, etc.
 
I wasn't allowed out of hospital until I could change my own bag and was doing it all by myself at the age of 10 - my parents have seen my stoma only once and that was while I was in the hospital!  It is a learning curve but it's very easy to look after a stoma, but like anything, you just have to get used to it and practice at it. I used the school loos just like everyone else and no one was any the wiser.
 
I eat anything I want (and it shows!), am on no meds, empty approx 4 - 6 times a day (depending on what I have or haven't eaten) and am pain free.
 
If you or your son has any questions, please do not hesitate to contact me at shaz@ostomates.org    I'll be only too happy to answer your questions as honestly as I can - no question is too embarrassing or too silly.
 
Take care and good luck with your decision.
I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


saucy
New Member


Date Joined Jan 2006
Total Posts : 2
   Posted 5/24/2006 10:12 AM (GMT -7)   
Thanks for replying, Phil and Shaz!

Phil: I was hoping you'd read my post! I noticed on a different thread that you are one of the few u/c sufferers on this post who had both the stoma and the re-connection. The doctor recommended the same for my son: take the colon out completely, ileostomy, then after a period of healing, connect the small intestines to rectum.

It has been devastatingly life-disrupting for my son and for the rest of us. He doesn't want to do anything outside of the house. He is afraid to take short trips with me in the car, and I'm afraid he might have an accident and soil the seats. We used to be big travelers. We still manage, but I dread those 20-mile-apart exits on the expressways. I have to scrub his underwear daily. My husband isn't as patient and sympathetic as I am, and sometimes rolls his eyes and speaks bitterly whenever my son has to suddenly run off and find a toilet--it just makes my son sad and me angry. Once we almost lost my son getting off the plane at Heathrow. I told him to run ahead and meet us at the men's room. At most international airports, there is only one passageway directly from the plane to customs. Well, we discovered that at Heathrow the hallway branches off in various directions! Finally we found him sitting at a crossroads pretending he wasn't scared. He has soiled his pants at bitrthday parties and on ski lifts (and had to ski down dirty), and has visited so many portajohns that I wouldn't be surprised he has picked up contagious diseases. He is pre-adolescent and beginning to become more self-conscious. He has started to see a psychologist--a specialist in kids with chronic diseases, who has u/c himself--my son loves every minute spent with him, but before we found this Dr., my son would have breakdowns when he was alone with various members of the family, such as my sister and my brother-in-law.

He has been on prednisone for two years straight. It is remarkable he is still growing, although he started off extremely tall and had aspirations of rivalling Shaquile O'Neill! He has been on Remicade since January. At first it worked miraculously, but then he had another flare-up. When I take him for his remicade infusions, I have to get a babysitter for my infant and drive through Manhattan rush hour traffic (I don't need to tell you how frightening that is) and spend all day at the hospital. He is also on 6MP, another immuno-suppressant. We are lucky he has had a relatively healthy winter other than u/c.

So, yes, I think we will probably do surgery, after trying Remicade another 2 or 3 times. Your story answered a lot of my questions. I am wondering what sort of outlook the doctor gave you: how long before you are feeling completely back to normal? What will "normal" be? Going to the bathroom once a day? 3 times? 5? And will it be more controllable? Will you be able to suppress it if you need to temporarily? Even while on Immodium (how long will you be on it?)? I have had my son almost jump out of the car before it stopped moving in order to relieve himself on the side of the road!

SHAZ: Thanks so much for your information! I hope my son is as independent with his "bag" as you were! I am worried about hygeine. Sometimes my son will hop out of the shower and his knees are still filthy--he is very lazy! What needs to be done to keep the site of the ileostomy clean? The rectum area? You mention you didn't do sports, but can you imagine yourself at that age playing basketball or soccer? What if you collide with another player, or fall badly? What would happen if the ileostomy site was hit? I don't even know if the bag must remain on constantly, or if you can temporarily cap it, for example, during a basketball game. Can you swim? Is the bag visible beneath your clothing? Any embarrassing smells or noises as it fills?

It sounds like you still have the ileostomy bag. Did you have the option to get reconnected? I know it was long ago that you had the surgery.

saucy (Ruth)

Midwest Phil
Regular Member


Date Joined Mar 2006
Total Posts : 43
   Posted 5/24/2006 12:25 PM (GMT -7)   

Saucy,  I can understand the plight of your son.  A couple of years ago we took our kids to Disney World and I can assure you that I know where every restroom in all the parks are.  I too have used the porta potties at my kids ball games and soiling oneself is not fun either.  There have been times when I was out in the field working that I almost had to turn on the red lights and siren to get to a toilet.  Ahhh,  the bad ole' days.

As far as outlook, I am 4 weeks post operative and starting to gain a bit of control.  In other words, I can hold it if I really have to while I get to a toilet.  The first night after the surgery take down of the ileostomy, I was miserable and I call it my "Hell Night".  I couldn't get off the toilet because my system was waking up and everything was passing through.  Also I started vomiting, but fortunately just dry heaved since there was nothing in my system.  The surgery was on a Friday afternoon, and Hell Night was on a Saturday night.  Sunday afternoon by 3 P.M. I was on the way home.  I still have bouts with the trotsky's, but can control it to an extent with diet and immodium.  My Doctor told me I would never have a "hard" movement, but they would be soft and controllable.  For the most part they are right now.  Others on the J-Pouch website said you notice a difference about 4 weeks and I certainly am.  While not 100 % yet, I am probably about 60 % which is a heck a va lot better than the U/C.  My doc also told me that I would have anywhere from 3-8 movements per day depending on my system, but they would be controllable.  This I can live with. 

The difference between where I was with the bag and now is that with the bag I could eat anything I wanted, because it didn't matter if it ran right through.  Now, I am pretty much restricted to banana's, rice, breads, cheese and tapioca pudding.  I am told to introduce foods to see what they do and if they run through, give them a couple more weeks and try again.  I ate a Wendy's hamburger the other day with mustard and pickle only and it worked great.  As for Dad getting frustrated, he's just going to have to understand how things work.  Nobody that has this terrible disease asks for it and it truly strips you of your dignity. The scars from the surgery will eventually heal, but the emotional scars will remain forever.  I remember at age 44 breaking down in the hospital after having to go in for an infection prior to my take down because my 15 year old son and 12 year old daughter had been put through so much for 9 months and it wasn't fair to them.  Fortunately, they understand why dad can't hug them tight yet or make all their ball games.   

I have been told by my Doc and others that over the next few months my menu will expand and within about a year, I'll be back to "normal" which is limited movements and just about any food.  If I can help with anything else, give me a shout. 

God Bless.  Phil

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 5/25/2006 6:44 AM (GMT -7)   
 
Ruth said...
What needs to be done to keep the site of the ileostomy clean? The rectum area?
Not much really. I just hop in the shower without a bag on and let the water run over my stoma and gently scrape any leftover adhesive off with a finger nail. Others use a special adhesive remover and/or cleansing wipes. His stoma nurse will show him how to clean around it. It's not hard at all. Remember this is the intestine we're talking about - it's used to having dirty and unsterile things in and around it :) However, having said that, he will need to keep his skin surrounding the stoma clean to stop any skin irritations - but he'll learn that lesson really quickly if he doesn't keep it clean!
 
If his rectum is left in, he'll probably still pass mucous from time to time (completely normal and shows the mucosal lining is still doing it's job) and will just look after it like he does now.
 
If his rectum is removed, then there is nothing there and it can be washed just like any other part of the body.
 
Ruth also said...
can you imagine yourself at that age playing basketball or soccer? What if you collide with another player, or fall badly? What would happen if the ileostomy site was hit?
 
Rolf Benirshcke played 7 seasons for the San Diego Chargers with his ileostomy. I have his book - it's called Alive and Kicking. Rolf was very active in the old UOA (United Ostomy Association) and I presume still is with the new UOAA (United Ostomy Associations of America) esp in talking to younger kids with ostomies.
 
There are special stoma guards you can buy to place over the stoma to minimise damage but really, stomas are a lot sturdier than they look. I've never managed to damage mine in 30 years and I've never taken any special precautions even when rock climbing, etc.  I've only known one ostomate (out of the thousands I've chatted with over the years) who has managed to cause her stoma harm and she did it by walking into the corner of a table!
 
Ruth said...
I don't even know if the bag must remain on constantly, or if you can temporarily cap it
With an ileostomy, it outputs approx 95% of the time (even though you usually can't feel it working) so you must wear a bag constantly. I do take my bag off to shower on change days but then output just goes down the shower drain anyway (I wouldn't even try taking a bath without a bag on - I'd end up messier than when I started  lol).
 
Ruth said...
Can you swim?
I was in swimming four weeks after my surgery. I just wear a one piece bathing suit with a pattern or splash of colour across the stoma site. For guys, the board shorts do fine :)
 
Ruth said...
Is the bag visible beneath your clothing?
The Queen Mother had a colostomy for 30+ years before she died. John Wayne, Ronald Reagan, Bob Hope, Petula Clarke and many others all had/have colostomies/ileostomies. Bet you couldn't pick it on them :)  You've probably spoken to many ostomates and not known it. What I'm trying to say is that no one need know about his ostomy unless he chooses to tell them about it. It's important to ask the surgeon to place his stoma below his belly button so that he will still be able to wear jeans and pants and not have the belt or elastic hinder the bag in anyway. His stoma nurse will site it properly for him hopefully.
 
Ruth also said...
Any embarrassing smells or noises as it fills?
Bags are odourproof and unless he has a leakage it won't smell ordinarily. Of course, when he empties, that's another thing altogether - the odour can strip paint off walls - but then everyone smells when they go to the loo anyway. There are special ostomy deodorants you can buy but the cheapest and most effective means I've found is to put a few drops of 3% hydrogen peroxide (no stronger) into the bag each time you empty. It completely eliminates any odour.
 
There will be noises from time to time (esp at first until his stoma settles down a bit). This is my biggest (and really only) complaint about my stoma. Harriet (my stoma's name) just 'knows' when it's the best time to make herself heard, usually in quiet meetings. However, to minimise gas noises, it's best to have a little something in your tummy at all times. Some ostomates don't eat to try and stop it but not eating just means more gas and consequently, more noise.
 
Ruth said...
It sounds like you still have the ileostomy bag. Did you have the option to get reconnected? I know it was long ago that you had the surgery?
 
They initially left my rectum intact in the hopes I could have j pouch surgery however it was too badly diseased and had to be taken out a year later. In those days, j pouch surgery was in it's infancy and nowadays they probably would have just scraped the rectal lining out and gone ahead with the j pouch. However, I don't regret not having the j pouch surgery one bit - I'm very happy with my ileostomy - it doesn't stop me from doing whatever I want to do.
 
Take care.

I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!

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