My son facing surgery

[Clarej121]

Hi
Sorry i haven't been on here for a while....
Bailey is still on Modulen via ng nearly 2 years on!
They have exhausted all the medication...
Aza 100mg
Prednisolone 40mg
Pentasa 2g
omeprazole 40mg

Infliximab 500mg ( 6 so far last one double dose)

Life has been so hard, will it ever end?

Bailey was under Southampton but i asked him to be reffered by our GP to Oxford where i believe they are the ones to see..

We seen them on Friday & after long consultation they have offered Bay a defunctioning Ileostomy... It was no shock as that was exactly what Southampton had said!
I was hoping they had a miracle... Set myself up for a fall...

He is going in for it around the begginning of school summer hoildays.. date coming imminently.
That gives Bailey 6 weeks to recover & get his head around it before he goes into his last year of secondary.

I look back at what ive just wrote with tears flowing down my face..
I know it is going to help him become pain free, live life again, get to school, out with friends, the list is endless..
But i'm terrified for him.. How do i guide a 14 year old boy into something he may regret, i'm not sure if he totally understands the long term implications!
Kids don't look that far ahead do they?

By leaving his Colon in & resting it, i'm wondering are they hoping one day all will be well to reverse.. They say they would like to if possible.. but may need further surgery to remove it!

I'm at breaking point, which i hate.. My other 2 son's are missing the old me!
Will the old me ever return...

Any help & advice would be so nice.
Feel desperately alone...

Clare xx:sign0085

 

[DustyKat]

Oh my Clare, what a heartbreaking time for you...:hug:

Although both go my children have had surgery they have not required a stoma, although we came close with my son last year.

What you are wondering about the leaving the colon and resting it is correct. They would be hoping that the absence of faecal and food matter passing through it will allow it to do what the medications have been unable to achieve, healing. I so hope the surgery is able to do this, bless him.

Was Enteral Nutrition ever tried on its own or in conjunction with medication?

As to guiding him...you do what you can hun, explain it as best you can and provide him with all the information you can get your hands on. It will be difficult but perhaps when he does indeed get his life back it will become the new norm for him. I'm sure you have seen him role with punches up until now and wondered how he ever managed to get through it all! I know I did with my kids, they never ceased to amaze me. Crohn's Mom daughter has had been through a temporary ileostomy recently and there are many members here with stoma's that have changed their lives for the better, they have never looked back. Many are much older than your boy but others are not that much older.
No kids don't tend to look that far ahead but in my mind in many ways that is a good thing. They tend not to worry so much about the what ifs as we do.

When your boy regains his health and you see and rejoice in your "old" boy coming back then the laughter and light does return Mum...yes! your boys will get their "old" Mum back better than ever!

Wishing you all the luck in the world hun, it surely is the hardest thing in the world having to watch our children face adversities that we have never had to contend with. :hug:

Thinking of you, :heart:
Dusty. xxx

 

[Clarej121]

Dusty,

The whole reasoning behind surgery seems so practical & hopeful.
Just so scary getting there, what if's, buts & why's!

Bailey has been on Enteral feeding alone for most of the time since diagnosis, food intro never got past stage 2 ( Rice, chicken )

He was ulcerated from top to bottom so it had its work cut out!
Helping with all but his Colon....

Regards to Bay getting his head around it.. i was surprised to hear him telling his closest friends via online game (x Box)
He was just so at ease with it, no holding back just telling them excactly what a stoma is!!
This has made a difference on how i look at it now...

I'm tackling it all head on now, i will have my days where reality is all too much but that's parenting!!

When i get a date for op through i may have a tear but i'm going to allow myself that one

Thank you so much for helping me... just knowing there is help & advice on here is so heart warming..

Hope you & yours stay well, lots of love to you all

Clare XX