Crohn's Disease Forum » Your Story » Feeling rubbish

05-19-2014, 06:29 AM   #1
joandrew's Avatar
Join Date: May 2014
Location: salisbury, United Kingdom
Feeling rubbish

hi guys I was on here yesterday so still getting use to how all this works.
I am 45 and have crohns for 18yrs.
all was going well until a few weeks ago and now I am on a rapid decline.
doctor has put me on steroids and referred me back to the hospital next week.
cant seem to get my energy up, I only have a small burst of 3 hours then I am done in.
I am at the moment on sick but due to starting a new job I am not entitled to ssp pay so I've applied for esa.
now I am told I need to have a medical assessment by Atos and I am led to believe that if I can use a pen and a computer mouse and lift my arm above my head I am fit for work.
yes I can do all those things but hay what about the stomach cramps that have you double over in pain and the constant use of the toilet not to mention the chronic fatigue.
feel very down at the min and wondering when they will come up with a cure for this.

a question for my fellow colleagues.

Q: will I have a better quality of life with a stoma?

Last edited by joandrew; 05-19-2014 at 01:46 PM.
05-19-2014, 11:15 AM   #2
Forum Monitor
DJW's Avatar
Join Date: Jul 2013
Location: Ontario

My Support Groups:
Hi. I can only speak for myself. My ileostomy gave me my life back. I lead an active life.
Best wishes.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:

Living in Ontario with no drug benefits?

Trillium Drug Program:

05-19-2014, 11:18 AM   #3
joandrew's Avatar
Join Date: May 2014
Location: salisbury, United Kingdom
i am so pleased for you and I hope I will be the same if I opt in for it
05-21-2014, 07:17 AM   #4
Senior Member
deb123's Avatar
Join Date: May 2012
Location: andover, United Kingdom
Sorry to hear your not doing too good at the mo. It will get better, its just so frustrating not knowing how long the flares will last.
Can your GP or consultant not help out with your Atos medical?
I also penned an open letter to anyone who it concerned, and just described my worst and best days.
Some people think that this disease is just about a dicky tummy, they have no idea how it can affect everything from your head to your toes!
05-21-2014, 09:41 AM   #5
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
Hello, sorry I've only just seen this.

I'm sorry you've been having such a hard time lately. I know those ATOS assessments have a horrid reputation, but hopefully you'll have a better experience than many others have.

The decision to have a stoma is one that is very individual. It is drastic, life changing surgery and can have a big toll on your physical and mental health. I remember reading in your other post that until this recent flare up you had been in remission for 18 years. This says to me that it might be wise to try medication first rather than going straight to surgery.

For many people, a stoma is a new lease of life. It gives them back independence and freedom, but it is usually a last resort and comes after months or years of trial and error with medications, or in an emergency. However, there are some people who find having a stoma very mentally draining, they struggle to come to terms with it and feel like it changes the person they are.

I think the best thing for you to do is sit down with your consultant and have a frank discussion about where you are with your disease and what your treatment options are. If they push for medication but you want surgery you could always ask for a compromise like setting a realistic time scale for improvement.

Remember that a stoma is not a cure, so you could still have a relapse even after the surgery. Make sure you know all the options that are available to you and all the potential outcomes in order to make the best choice for you.

coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin

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