My Story for a parent with a child with uc

[bparker517]

At this point, we feel completely broken and beaten down. My son was diagnosed with ulcerative colitis in May 2009 when he was 19. Since then, things have only gotten worse. No medicine has had any effect at all. He has had several doses of Remicade with no improvement whatsoever. We saw a different specialist Friday who suggested a clinical trial. I just do not feel good about that at all. He's been through enough, I don't know that I want him to be a guinea pig. The side effects are unknown for sure but the possibilties are pretty scary. Since the side effects of Accutane is how we got where we are, i am extremely wary of all side effects. His only other option is surgery but he doesn't see that as much improvement since he read that he will still go to the bathroom 6-8 times a day. That's really not that mcuh different ftom what he does now, only a bit less. I would love to hear from anyone who has had the surgery and how it has worked out for you. PLEASE!!! We need some type of help or something. This disease has roobed him of the fun he should be having while in college; instead he has to worry about having another accident. Thank you all in advance.

 

[Astra]

Hi bparker
and welcome

I'm sorry, I have not had any Crohn's surgery, yet! But there will be someone along soon who can help. not sure which surgery you mean tho, have a browse thro the sections on here, lots of success stories regarding surgery.
Stick with us, lots of support here for both of you
lotsa luv
Joan xxx

 

[DustyKat]

Hi bparker and :welcome:

Oh my, I'm so sorry to hear you going through all this. My daughter has Ileal Crohns not UC and has had a resection. In her case the outcome of surgery has been positive, in that she has been in remission since the op 4 years ago. She had emergency and had never had the opportunity to try medication, wasn't diagnosed, so had quite a large amount of bowel removed (68cms). She has short bowel syndrome but has been able to manage it and she lives on campus at university.

As Joan asked, what is the surgery your son may have? There are others here that have certainly had surgery with UC so they will be able to give you a better answer than I can. Good luck and welcome aboard!

Take care,
Dusty

 

[bparker517]

Thank you both for answering me. The surgery he will have is the colostomy with a j-pouch. Theren just has to be something to help us. He is so not himself and I miss HIM so much.

 

[DustyKat]

OK, head to the Stoma Subforum and there is at least one thread about J pouches but if you browse through the threads you my most likely see reference to them throughout. Also post your question there as well on a new thread, here is the link.......

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

Dusty. :hug: