Steve

[Steve E]

Just joined. Reason is that as I sit here it feels pretty isolated, even though I am lucky enough to have good friends and family.

I was diagnosed in 1984. I have been hospitalized lots of times. Still I battled through to become a chartered architect. I came close to an exit from this world in 1997 due to big complications. That experience left me with very complicated internal fibrosis with strictures and a fistula as well. I am currently in a debate with my medical team (thats what I call the doctors, professors and surgeons) about he best way forward.

I was made redundant last year due to the recession, and decided to go it alone as a sole architect working from home. I also look after my boy who is two.

I need to write stuff like this down as I get these moments when Crohns hits my confidence in being able to actually deliver the high standard that my job requires. I am stubborn in that I will not just 'give up'. But being self employed allows the mind to ponder where is the line that when crossed, doing this job, which I hold dear, becomes impossible.

I am on azathioprine, entocort and employ a variety of techniques to manage my Crohns.

 

[Kip1]

Hi Steve

Welcome to the forum.

This disease really does get you down at times but rest assured there are people on here who will understand & give advice where needed so you will feel less isolated.

It sounds like you have a great job & a two year old too wow I bet you are busy.

There are many of us worried about jobs status in the uk especially when you have to take time off due to ill health. Fingers crossed you manage to keep well enough to do the job you love.

 

[Angrybird]

Hello Steve and welcome to the forum, I am pleased you have decided to join. There are definetly times when this disease can hit hard and it really seems that it is going to be a struggle to do everything, just know we are here for you and understand :hug: With regards to treatment what previous meds have you been given? Has any of the biologics (Remicade,Humira) ever been tried or is is that they are thinking an operation?

Also what other techniques do you try and how much success to you get from them?

Wishing you all the best

AB
xx

 

[CLynn]

Welcome, Steve! You have a great attitude, that of a fighter. Keep it up! We are the Crohn's warriors, all of us, and this is a great place to be reminded that you are not alone, at all!

 

[David]

Hi Steve and welcome! I'm glad you joined and we're here for you anytime

If you're ever interested in sharing, I'd certainly be interested in hearing about your, "complicated internal fibrosis with strictures and a fistula as well".

I wish you all the best, please let us know if there's anything we can do for you.

 

[Steve E]

I am grateful for all the replies. They do help very much.
I was about to be put on Humira but was then told that my problems are due to fibrosis of the small bowel, and so that only surgery is the real option. This is something that I do not completley agree with, and the jury is still out.
I use Imuran to try and keep CD under control, and Entocort to calm it down when things get a little inflamed. I need B12 injections regularly.
I have been lucky enough to have undergone hypnosis, and I use this myself to get my mind right when it comes to life with CD. I find that doing and thinking creative things is a great antidote to feeling under the cosh.
I am also lucky to have two young kids, who although really push me when I have fatigue (and that is something Crohns adds to as I am sure you all know), I am allways amazed by them.
I could spend the rest of the night talking about myself. But I hope to bring some useful stuff to the forum.
Thank you all for the replies. It's good stuff.
Clocking off for today.

 

[David]

Hi Steve,

Thanks for sharing more Do you disagree that you have fibrosis or do you disagree that surgery is the right answer for it? Either way, why do you disagree?

Take care bud.

 

[Steve E]

To answer David: I have fibrosis that has developed over many years, and have 'felt' them since a massive episode in 1997. I live a fairly decent life doing the job of dad (I was made redundant a year ago) and part time architect (small stuff until I can afford childcare) plus being a partner to mum. Crohns does not, I feel, compromise my abilty too much and so I manage OK. But I do have times of difficulty.
I believe the surgeons see just a case of severe strictures and dilated bowel loops and want to go to work. But I am told it would be risky and complex.
I see myself as doing OK so why go in and try and fix stuff, considering the risks? I also do not wish to put further stress on the family. The medical (not surgical) guys appear to have retreated and taken the medical option with them. My argument is they should be helping me to preserve my status quo: doing all to avoid a major inflammatory episode that would turn me into a disaster area. To me that means having biologicals back on the table.
I also believe there is pressure from the surgeon to get in there whilst I am a 'cold case' as opposed to a 'hot case'.
I am not opposed to surgery generally, but I am not convinced it is the answer to my issues.
I am will be discussing this with my consultant towards the end of the month.

Thanks for the question.