Newbie mum - tough decisions ahead.

[Donnanne]

My son, aged 19 was diagnosed (cursed)with Crohns 2 years ago, which came on out of the blue after previous good health.
There has been no period of remission and his crohns has been very aggressive.
Drugs tried...pentasa, aziothiaprine, infliximab, humira, prednisolone, mercaptopurine etc.
He has been hospitalised several times due to infections. Very low body weight and has developed an eating disorder due to condition, eating/symptoms/cycle.
He has also recently had meningitis, he catches everything due to low immune system.
GI doc thought it would be an good idea to 'de-function' him temporarily and he had an illeostomy in the summer.
This has done nothing as his Crohns is in three places and now as well as emptying bag he is also going to the loo other way 20/30x per day. Getting weaker and weaker every day. Doc put him back on preds, 8 per day atm. No change.
Doc has suggested total removal of everything inc rectum or the stem cell transplant.
I am frantically researching for any other poss options. LDN?
If anyone can please please help help with advice, please do!
Thank you so much.
Anxious mum.

 

[DustyKat]

Hi Donnanne and :welcome:

I have moved your post to the Your Story where more members will see it and respond.

I am so very sorry to hear of all your boy is going through...:hug:...how difficult and heart breaking for you both.

We have a forum here for LDN...

http://www.crohnsforum.com/forumdisplay.php?f=32

And a thread about Stem Cell Transplantation...

http://www.crohnsforum.com/showthread.php?t=22259

I was going to suggest some Enteral Nutrition but I'm not sure how effective it would be now that he has an ileostomy but have a look at the forum as well...

http://www.crohnsforum.com/forumdisplay.php?f=161

Also there is a wonderful stoma forum that may be of help to you regarding his continuing issues with output...

http://www.crohnsforum.com/forumdisplay.php?f=46

I'm sorry that I seem to be redirecting everywhere but there is a parent's forum that is great to go to, we all understand how difficult it is watching our children suffer with IBD...

http://www.crohnsforum.com/forumdisplay.php?f=49

I wish I could be of more help to you Mum but just know that you are not alone in your fear and uncertainty...:hug:

Dusty. xxx

 

[Donnanne]

Thank u so much for your quick response.
I will look up all of the links u have given me.
We are due to see the GI doc on 30th so will see what he has to say this time...
xx

 

[f_else]

I have heard some positive things about the stem cell transplant therapy. It might be worth a go before removing everything, as you can always remove it later, but you can't put it back in. The stem cell treatment might seem scary, but I also think that may only be because it is new. From what I have read it seems like a great option in extreme cases of crohns.
Good luck, and I hope whatever you try turns out for the best.

 

[David]

Greetings and welcome! I am so glad you joined but my heart hurts to hear what your family and son are going through

Add another vote here for stem cells over removing everything.

We're here for you anytime!

*hugs*

 

[xJillx]

Hi Donnanne! I think the obvious choice here is pursuing a stem cell transplant. As you have said, his Crohn's is in numerous locations, and having a stoma over the summer didn't help.

We've had a few members have great success with their stem cell transplants. I hope your son will have the same results if he decides to go this route. Good luck!

 

[Donnanne]

Thanks guys, im so glad i found you all!
He continues to be up and down, mostly down. Seems to be shrinking before my very eyes at the mo despite the prednisolone.
For all of you that have this condition, i salute you. Life is tough enough as it is without this crap. (pardon the pun!)
Donna.