Hi New here -My Story

[Kers]

Hi folks,

My name is Kerrie. I have been diagnosed with Crohns since Dec 1999 with 2 years of problems prior to that.

Crohn's was initially in my duodenum which was by pass in a Gastroenterostomy in Nov 2000, where they attached my stomach straight to my Jejunum. I had 2 good years of managing the condition and in 2003 problems started again and the disease had spread throughout my small bowel. Having tried various treatments without success I eventually had my second op in June 2009. I had a stricture and extensive scar tissue at the end of my small bowel which was removed in a limited Ileo Caecal resection and Appendectomy. Since then I have been back and forth to my consultant as I am now Therapy resistant even not allowed steroids anymore which makes life rather difficult.

I am going through another major flare up and have been in hospital 3 times already this year and heading back there very soon as this flare too hard to manage at home with 2 small children. So kind of stuck for ideas now. There are not many drug trials (that I am aware of) going on right now and the list is too long for the Stem cell trial at the moment. Surgery might be possible but this would cause more complications as I don't think I would have much small bowel left to play with.

Is anyone in a similar position or know of anyone who has been?

I'm just here looking for people who understand what it's like and share experiences and ideas.

Thanks

Kerrie

 

[crazycanuck]

Sorry I cant be of much use in help but many people here Im sure can. So sorry for your troubles and good luck with it all. Welcome to the forums!

 

[Kers]

Thanks

 

[Nica]

Hi Kerry,

I understand where you are at. I was pretty much in the same boat in 2005, I had tried every therapy available, reacted to them all and started reacting to steroids in really bad ways. It was a really, really rough time.

I wound up going on pain meds to deal with the stricture pain, lots of liquid (almost no solids) resting as much as possible with little to no stress and eventually the flare let up. It took almost a year. My son was 7 at the time, I was pretty much useless to him and my husband. Had to quit working and go on disability.

I will never forget how disheartening it was to go to my GI and them tell me well, we are out of things to try , surgery isn't an option... want to try remicade again even though it caused severe joint pain and flu like symptoms? (yea who wants to get sicker for a medicine?!) Then to be put into pain management because there was nothing left.

Keep your chin up, it will get better.