Advice needed

[concernedsis]

Hi... I'm new to the forum and I'm here on behalf of my little sister and our family.

My sister is going through a very rough time at the moment. She has Crohn's and has just been given news that she will need to have surgery ASAP (keep in mind it's 3 days before Christmas). She was diagnosed early 2006 and has been on all the different drugs - Imfliximab, Humira, Steroids, Immuran etc. She went into remission for over a year in 2007 but now her Doctors tell her she is at the end of medical treatment, she is too weak for any other drugs and has been in hospital backwards and forwards for 3 months now.

Basically I just want some good news to tell her because she is very worried about her quality of life (she is only 24) going forward after surgery. If anyone can give me some good experiences since being off the drugs and after surgery or anything you as Crohn's patients think I should be doing to make this speed bump in her condition as easy as possible it will be gratefully appreciated.

Thanks in advance.

 

[jed]

hey conceerned,

heres my good experience advice for you

"SURGERY WAS THE BEST THING I EVER DID FOR THIS DISEASE!!!!!!!!!!!!!"



seriously it was. i went through the drug hell she went thru, and i was still suffering from agonising pains. it was &^%$ed. your sister knows how i felt

i had my large intestine removed, they were able to save my last few inches of it tho, so i havent been bagged yet (will happen one day tho, so be it)

if her surgery is like mine, she have a few crappy days after surgery (maybe lucky enough to get the dreaded nasal gastric tube.....), then she'll slowly return to a much better quality of life.

she have a battle scar on her tummy, but in time she'll be able to accept that as a learning curve in life where she became stronger.

keep us up to date with how she goes, or get her to join us here, we'll answer anything she wants to ask.

best wishes to you, her, and your family!

Jed

p.s. sucks that this is hapeneing at xmas, but hopefully her present is a much better quality of life

 

[jed]

p.p.s. i know i'll never live a completely normal life, but surgery has got me as close to that as i will ever get.

p.p.p.s. i hate to promote surgery, i really do, but sometimes its for the best.


jed

 

[Wolfie]

I'm looking at surgery too. I was scared to death thinking that my life was over until I found this forum.The people here have given me new hope and eased the evil thoughts of surgery. I am still a little scared about it, but I am ready to move foward and am looking to better living ahead..

No Worries!!!!

God Bless
Wolfie

 

[danman]

Hiya Concernedsis and Wolfie,
I've just had surgery and like Jed, so far so good.
It's only been 3 and 1/2 weeks since my surgery and I can feel the benefits already. I wish I'd had this done years ago.

Similar to your sister, I was at the end of medical treatment, but I'd 20 years of medication, so I was lucky not to need surgery until now.

Post Surgery, I have more energy, no pain and my meds are down to just 3 satchels of Pentasa a day.

Tell her that this isn't the end of her life as she knows it, but the beginning of her new life as she used to have to when she didn't have Crohn's symptoms.
Surgery is always a big fear for us Crohnies, but it needn't be. I know I've only had a short time post op. but to feel this way is fantastic.

By the way, I didn't have any of my bowel removed yet. I had a looped ileostomy with a bag. It's like a Colon bypass. It's reversible so I may go back to the way I was previously. At the moment, I'm thinking of keeping my stoma in the long term. That's how good I feel now.

 

[concernedsis]

Thank you all so much. It means so much to get all your positive feedback.

I am going to the hospital tonight and I am going to print your replies out and give them to her to read.

I will definitely come back on in the new year and let you know her progress.

Thank you all so very much and I hope you all have a stress free Christmas and a Happy New Year.