The Fight for Quality of Life - Uncover Ostomy
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The Fight for Quality of Life

To the Colorectal Surgeon who has been caring for my son Noah, I am an odd parent. I am, and always have been, a strong advocate for my son and sometimes that’s translates into a bit of wackiness. (If you follow me on Facebook, you’ll know!)

Over the past few months, I’d say my “oddness” level has grown exponentially, as it’s become clear that Noah’s quality of life has deteriorated and that I won’t just watch it happen in silence.

For those who don’t know, Noah has a motility disorder in his colon, which means food doesn’t pass through like it would for others. He’s had this since he was 3 years old and was given a cecostomy as treatment. Unfortunately, as he’s grown, the cecostomy has slowly become less and less effective, and is instead, degrading his quality of life.

Lately, Noah hasn’t been able to be the kid that he is. He’s missed school and field trips, he’s been unable to participate in after school activities, and he’s even had to skip playing in the backyard because he’s had to be at the Children’s hospital that’s an hour away from our home.

As a mother, this breaks my heart. A kid, especially an 8 year-old, should not have to worry about his health. This is the time of his life when he’s supposed to be running around, getting dirty, and discovering the world. Instead, he’s home irrigating his cecostomy, dealing with chronic pain, or living as an in-patient in the hospital.

It’s clear that his lack of quality of life is also affecting his mental health. Noah sees a Psychologist on a regular basis and is even on anxiety medication. No child should need to be so traumatized from medical issues that they need therapy and drugs.

It’s no surprise that Noah is struggling physically and mentally. Last year, our Colorectal Surgeon removed his cecostomy, did a colon resection and gave him a appendicostomy (otherwise known as Malone – just another way to irrigate the bowels.) Unfortunately, this did not bring any improvements, and just put him through more pain and recovery, while leaving him in the same place he started. Our only option left is to remove the appendicostomy and for him to get an ileostomy.

Finally, I had enough. It’s been clear that Noah’s cecostomy has to go and that an ileostomy bag is the only solution. So, on May 25th, I made an appointment with Noah’s Colorectal Surgeon and told him that it was time for a change.

We explained to the surgeon that we (my husband and I, and even our daughter) knew that Noah would benefit from an ileostomy and that it was time to get the surgery scheduled. Noah himself had even asked for one.

We were approved and scheduled for surgery on July 3rd! I was relieved. Finally, Noah’s life could be improved – it’s what we had been waiting for. We started a countdown and Noah couldn’t have been more excited.

In the meantime, the surgeon recommended that we try one more “last ditch effort” with a laxative trial, which was supposed to improve his intestinal motility. This was probably one of the worst months of mine, but especially Noah’s life. I watched him writhe in pain while spending hours on the toilet. It seemed like, as we had expected, that it wasn’t working.

On June 22, we had another appointment with the surgeon to confirm that the laxative trial did not work. He agreed, but told us that in order to have surgery, Noah needed to stay in the hospital and be monitored to ensure he was capable of handling the intensive ostomy surgery. I was confused and a little shocked that we had to do that, but agreed.

After 5 days of the hospital stay, the Colorectal Surgeon came in to give us news that we did not expect. He told us that after monitoring him, they realized that Noah did not have “Failure to Thrive” (which meant he was growing and gaining weight normally), nor did he have “Pseudo Obstruction” (he did not have an intestinal blockage.)

What was most shocking to me, my husband, my daughter and Noah, however, was that the surgeon said that he thought there would be too many mental health issues with “the bag” and didn’t think Noah should go that route.

Therefore, the surgery was cancelled.

What?

Was he kidding?

He not only knew that my husband lives with a urostomy bag (that gave him his quality of life), or that Noah’s current situation was detrimental to his mental health, but he had heard him ask – no, beg- for the ostomy! What mental health issues did he think “the bag” could possibly cause? What mental health issues could “the bag” cause that were worse than what he’s been dealing with?

I was shocked. Hurt. Confused. And livid.

A medical professional decided against performing much needed ostomy surgery on my son because he was more concerned that “the bag” would give my son a worse quality of life than he is currently living?

What kind of craziness is that?

Has this doctor not seen my husband, who is alive, has a family, and is able to hold down a job because of his ostomy? What about Uncover Ostomy? Hasn’t he seen this website? I’ve definitely shown him!

How can a medical professional be so blind?

If this is how a medical professional thinks of the ostomy, it’s clear that our work here at Uncover Ostomy is far from over, that’s for sure.

I am heartbroken.

This is a surgeon that I have had so much respect for. I’ve referred other patients to him, I’ve sung his praises, and most importantly, I’ve trusted him to take care of my son.

Instead, he has failed us. He has failed Noah.

Lucky for my son, I am not going to give up.

I am determined to find a surgeon who will perform this life saving surgery and to give him his quality of life back. I am not just going to sit here and watch my son suffer in pain and miss out on life all because a medical professional thinks “the bag” will depress him. I will do whatever it takes.

All I can say for now is that this story is to be continued…

Susan Sweeney
susan@uncoverostomy.org
8 Comments
  • Luisa Mar
    Posted at 17:55h, 06 July Reply

    My son has an ileostomy since the age of 4. He is now 14 and living a healthy, happy life. He plays baseball, even umpires, is not excluded from any physical activities at school, and enjoys a normal teenage life. Keep fighting for what’s healthy and right for your son and your family! I wish you the best of luck

  • Donna Leung
    Posted at 19:15h, 06 July Reply

    Susan I would love to connect with you regarding your situation with your daughter. Our son has had his ileostomy since he was ten (he’s 20 now) and it was life saving for him, physically, socially and emotionally. I hope you are able to find a surgeon who sees the benefits

  • Donna Leung
    Posted at 19:16h, 06 July Reply

    Sorry, I meant for your son! I was thinking of another person posting on FB with a daughter.

  • Jenny
    Posted at 19:34h, 06 July Reply

    I’m so sorry for you. The only mental changes are positive ones as you are able to participate in life again (speaking from experience, have had an ileostomy for four years). I sincerely hope you find a surgeon who will perform this life-changing surgery and my prayers are with you and your son.

  • Ima Realist
    Posted at 21:52h, 06 July Reply

    Why would you fight so hard for something that a doctor has proven that isn’t needed for your child. Your child doesn’t have an intestinal disease. After reading you post and watching your crazy videos as to which you have scripted your child to do as to which he forgot his lines. You keep talking about quality of life…who’s life are you really talking about YOURS or HIS? The doctor has said that there are many issues that come with this that would ultimately effect his quality of life, which are documented in MANY studies at which you can read on the internet. ostomy leads to intensified distress and suffering for patients, and causes severe stress as a result of skin irritation (76%), pouch leakage (62%), offensive odor (59%), reduction in pleasurable activities (54%), and depression/anxiety (53%).
    It has been said by MANY that have also followed your craziness that you are crazy and like to hear yourself talk and that you love the attention you get from all this. But that you seem to have forgotten this is about your child not you!

  • Richard A Moeller
    Posted at 17:03h, 07 July Reply

    Never give up never surrender

  • Anne McIntyre
    Posted at 03:21h, 08 July Reply

    Hello Susan , I’m so sorry for you and your family … have the specialists ever discussed trying the ACE procedure , not sure if it would help your son but I have one and for me it’s been life changing xx

  • Kim Thackeray
    Posted at 03:16h, 09 July Reply

    Do not give up your fight… I have my life back from having an ileostomy after 9years of suffering… if you are positive about having a bag then there shouldn’t be any mental health issues. If your son has been in great pain & suffered for years which is what you have said them he will willingly adjust to a bag. I begged for mine. Having s bag changes your life, yes it does but for me, it was for the better. Keep positive, don’t give up & fight for what you know in your heart is right. Go find another surgeon that will listen. My heart goes out to your son. Xx

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