Help for 2 year old boy facing colectomy

[Shaggy08]

We are looking at three options right now that I can see:
1. Give another dose of remicade (will discuss potentcy with Dr. prior)
2. Colectomy if remicade does not work.
3. If Xavier has a mutation affecting the Interleukin-10 receptor, then a bone marrow transplant would be needed. This was brought up by a specialist in Pittsburgh that we were able to contact through a friend of a friend.

My wife and I have brought up other medications like Humira, methotrexate, and Sterlara, but the GI specialist say starting a new drug can be dangerous, which we don't 100% believe after reading all these stories on this forum. Maybe it is because he is so little, I am not sure. But I do know we will push for those different medications before the #2 option of a colectomy. Any thoughts on that?

ONE QUESTION: for anyone out there with UC or Crohns that has gone through a colectomy and HAS NOT been able to have the ostomy bag removed, I would like to hear your story of why they were not able to get rid of the bag. My fear is that my son will have this bag all of his life which I am hugely trying to avoid, but as the days continue without positive results, I feel that we are going to have no choice but to have a colectomy to heal my son. Healing is number one priority obviously, but I also want him to have a normal life as possible. (Concerns with having a bag Being teased at school, playing sports, intimacy as an adult, as near normal life as possible).

Thank you all again for reading and replying to our post, this has helped a lot so far. We will do our best to pay it forward in some way when we are able to. Right now our focus is on our son.

~Aaron and Jhamilla with our sick son Xavier

 

[DJW]

Hi shaggy. I'm sorry I missed this post earlier.

I've had an ileostomy since my later teens. I had severe crohns throughout my gi tract and perianal disease with multiple abscesses and fistulas. It gave me my life back. I wouldn't go back.

One amazing thing with kids is how incredibly resilient kids are.
I understand your reluctance. I'm a firm believer in having child life specialists as part of the medical team. (something that has changed since my diagnosis)

Since my surgery: I completed university in psychology and business. I cycle, play ice hockey, golf, softball and plan on starting krav maga one this flare ends.

Sending you my support. I'm happy to answer any questions you have. PM me if you wish.

 

[nogutsnoglory]

I could be wrong but I think with a full colectomy a bag would be necessary unless he has UC in which case a j-pouch can be created. If it's crohns the only other option I can think of to live bag free is an ileo-anal anastamosis connecting the small intestine to the anus.

These are horrible considerations and I'm sorry you are facing these for your child. I pray the remicade works and it can be avoided.

 

[Shaggy08]

We are waiting for surgeon team to come pick up xavier from his hospital room for the ileostomy surgery. Anxious, nervous, and excited all at the same time. He is still in pain even on heavy pain meds, diloted and adivan. Hoping and praying it is UC and not crohns, as docs said they should be able to tell which it is once they have a chance to look at colon outside the body. Results could come back as soon as next week.

 

[nogutsnoglory]

Praying for you to have the best and least impactful result. Please keep us posted.

 

[jimger14]

My son had a complete colectomy in November 2012. He was 12 years old and did very well with it. He called it his "bag 'o swag!" My mom made fleece pouches to hide it better, and he called that his "man bag." He just had his reversal surgery this past March. That was not the easiest surgery, but I know with God on our side, in time he will be back to his normal, mouthy self. Good luck to your son & your family!