My story

[Paul Heath]

Seems as I am I hospital just getting over my third re section in 12 years I have some spare time on my hands, so I will tell all.
It all began just over 12 years ago, kept going back to dr with pains and have trouble going to the toilet and getting tired very easily. Kept trying tablet then that tablet... In the end
They treated me for apendex, but when they operorated they got more of a shock. They removed a sist the size of a small dinner plate in the bowel, this was then diagnosed as crohns. And that was my first experience with crohns.
I was then put on medication to control the condition, but 6 years after the 1st operation the time for the 2nd one was here!! Great, but not after being put on A large dose of steroids, the surgeons then say we can't operate on someone on such a dose.....bang head against wall time again....well some brave surgeon took the chance and resection no. 2 completed. I remember he stood at the end of my bed saying "we will see you again Mr Heath I. 6 to 10 years time" and that is exactly where we are again !
Once again my own dr decided to take me off the azothiaprine 6 months ago, as I needed to give my body a rest.......big mistake.
Within a week he told me to restart then and carry on and to help with pain etc take some steroids ....thanks..
After various visits/stays in our hospital...we thought it was reasonably settled to come to the isle of wight for our friends wedding, until my bowel perforated Saturday morning....ambulance into the hospital where I had my previous 2 resections.....small world.
They have removed some more, but this time I have a bag and they are going to rest the bowel for 6 months ?? So once again we head for any new experience with crohns.....life is never dull
Be interested to hear from anybody else that has had this done.
Keep smiling

Paul

 

[Angrybird]

Hello Paul and welcome to the forum

I am sorry to hear that you have had a tough time of it again. Out of interest what meds are you now on and was the Aza the only thing you were on previously between the ops? We do also have a stoma sub forum so do check this out so you have a chat with the folks here, I am sure they will have some helpful hints and advice about living with a bag: http://www.crohnsforum.com/forumdisplay.php?f=46.

I hope you will be getting home soon.

AB
xx

 

[Ckt]

Hi Paul!so sorry to hear you Have had such a hard time of it. Incidentally, I was also seen by the surgeons on the isle of wight in the spring for a flare up whilst vacationing visiting friends there..small world indeed!
I have had the same thing said to me by a surgeon who did my last surgery in December 2011..he told me he would see me in one to two years. It's always great when you hear that huh?
Sounds like you are healing from your last surgery bout. Have you ever been tried on the biologics?
Here's sending you healing thoughtS!!i

 

[Paul Heath]

Hi both of you thanks for replys. I was on pentasa aza and 60 mg of steroids, with view of reducing the steroids and my consultant in Cornwall has just organised for the injections at home to start?? Have them in the fridge at home, nurse was coming out Tuesday to start this treatment....we will have the see when we get home what is on the plans now.
Hopefully be out tomorrow being on aza, pentasa, and only 40 mg of steroids reducing by 10 a week........although last time I just went cold turkey with....knocked me out for 2 days but got me off the buggers.....won't do this...this time.
If the bowel is not being used is ther any point in starting the anti...thingy treatment (injections) we will have to see.
Thanks
People

 

[Angrybird]

Sounds perhaps that you were about to start Humira? We do have a sub forum dedicated to this in our treatment section that you can check out in case the docs do still decide to go this route.

 

[David]

Hi Paul. Thanks for joining and sharing your story. I just wanted to welcome you and wish you a speedy recovery

All my best to you!