22 year old male, an introduction - My story

[Crohny Alex]

Hey everyone, I'm new to the forums, I hope this post gives you a bit of an idea of who I am and my story.

My name is Alex, I'm 22 years old from the United Kingdom, currently in hospital with a severe Crohns flare. Normally I would class my self a student but I have recently dropped out of my PhD position to focus on my health, so I guess you could say I am one of the unemployed masses!

A little history of my treatments:

- Diagnosed with Crohns 2009 aged 18
- Steroids and anti-inflammatories – no effect
- azathioprine 2010 blood tests weekly 2010 – no effect
- Humira two weekly and later weekly injections 2011/2012- initially some effect after 18 months of gradually worsening symptoms.
- Hospitalised for the first time: April 2012 on my 21st Birthday due to flare severe weight loss and serious pain.
- Infliximab intravenous 2013 no effect
- Hospitalised May 2013 and June 2013 due to severe flare, unbelievable pain, unusual back pain.
- Partial control with IV steroids but recurrence as soon as taken off IV.
- 11 July 2013 IV dependant waiting for transfer to surgical unit for operation!

And this is where I am today, waiting to hear about information regarding a total colon and rectum removal, it's a scary prospect. If anyone has any advice let me know! Pre-surgery wards are scary and the nurses arn't nearly as nice as the ones in my little ward in a small hospital.

Thanks for reading!

 

[Clash]

Just wanted to welcome you to the forum. I have mo experience with surgery for CD but I am sure those who do will be by shortly. Wanted to send hugs and support your way!

 

[jezer101]

Why do you need your colon removed completed? You don't have UC. This will resolve UC but not Crohns. Nothing to say it won't come back somewhere else in the future.

I had a abscess and constant battle with a horseshapped fistula since April 2011 (when I was 23), I was told a temporary stoma would help. It didn't resolve it and was then told after having it a year I would need part of my lower colon remove and my rectum due to perianal crohns to resolve this.

I refused to accept this as I didn't believe it will resolve the problem. So had my stoma reversed after going against my surgeons advice. I still have a fistula but I only need paracemtol for pain and that's only for period of time after going to toilet.

Crohns can effect all of digestive system, and a surgeons answer is always to cut it out. Surgery is the very last option and in desperate times. I wish I never had a temporary stoma and started my treatment back then. As I felt I went backwards and just had problem after problem, until eventually I had a prolapse that was too much to deal with. I didn't want a correction as they would cut it.

I wouldn't just accept this option, have you had a second opinion? If not find out whos the best person for crohns around you. Your in the UK, I went to St marks, Harrow supposed to be leading in Crohns and UC. You may end up seeing Pro. Phillips who I saw who is supposed to be the best surgeon for perianal crohns (if that's what you have)

Have you explored diet, seeing if your intolerate of anything, I found out I was to dairy and wheat. Literally my stomachs aches stopped over night thanks to this.

I'm on a treatment called Adacolumn as infliximab caused my abscess in the first place. Its a new treatment and there only doing it in Cheltenham, no drugs involved so no adverse side effects like infliximab. It is in trial stage but it worked for me. Without I don't think I would of been able to have my temporary stoma reversed. Also this treatment stopped me needing painkillers and anti-biotics as I was still taking them with my temporary stoma! And I went from 10stone to 12stone!

I'm not saying their wrong, but if you willing to fight it...