My Story

Hi,

My name is Mark and I was diagnosed with Crohn's over 20 years ago. I've looked in on the forum from time to time, but recently decided it was time to join so that I could share my experiences with others.

The condition was initially diagnosed as IBS and treated as such for 18 months, but I just continued to loose weight due to constant diarrhoea. A definitive diagnosis was made after a biopsy was taken during a Sigmoidoscopy. Sulphasalazine was prescribed and over some months this put me into remission. Apart from one flare-up that coincided with a period of extreme stress, I was pretty well for a period of ~15 years. The flare resolved on it's own without specific treatment and I did not have any long term maintenance meds.

6 years ago I developed a painful abscess on my left buttock, close to my anus. To cut a very long story short, I have since undergone 10 surgical procedures and received drug treatment with Azathioprine, Infliximab, Humira and the world’s supply of Cipro and Metronidazole.

I recently had significant dissection of an anal fistula and have had a seton in place for several years. It has been suggested that I may be a suitable candidate for a fistula plug procedure in coming months.

During my journey with Crohn’s disease I have experienced many different procedures; Biopsies, Barium Enemas, Barium Follow Throughs, Sigmoidoscopies, Colonoscopy, Gastroscopy, MRI of the small bowel and so many MRIs of the pelvis that I’ve lost count! Examinations under anaesthesia, Excision and drainage, Setons and packing of wound cavities. None of these things are pleasant, but they need not be feared. If I can help anyone else on the Forum by talking though these experiences with them, then please contact me. Equally, if any of you have words of help or advice for me then they will be gratefully received.

Thankfully, I have a supportive partner. My employer appreciates my situation and accommodates my need for time off when required. I’ve had to modify my life style over the last 6 years and look forward to getting back to doing all of the things I enjoy in the fullness of time. I just wish I could sit down in comfort!


Mark

wow been along trip for you 20yrs, i had for 13yrs now i think it does get easyier the longer it goes on, just waiting for a dam cure now

Thanks for sharing your story. You sure have had quite the battle with this nasty disease after a nice long remission.
Hope you are sitting in comfort soon!

Hi Mark and welcome to the forum! I too have had crohns for many years, diagnosed for 20 and symptoms far earlier as a teen. You have been on meds that I too have experienced and most have failed for me. I have never heard of a fistula plug, although knock on wood I have not had a fistula. My Crohns is mainly in the Ileum and have tried to keep it at bay with Flagyl, in lose doses and gingergels. Everyone is different in the severity and location of the disease but I do agree with a cure some day. They say is slows down in the latter years but so far it seems to be true but still not in remission.

I have had 2 resections and even though surgery is not always the answer, for some it is necessary, and can provide long term relief for some, I got 8years after my first surgery. Glad you are here, a wealth of info and good support. Cheers.

Hi Mark
and welcome fellow Brit

You'll be a great asset to the forum with your experiences, which all sound horrific, what an awful time you've had!
Glad to have you aboard!
lotsa luv
Joan xxx

Hi Joan,

Thanks for the welcome. I only posted the edited highlights for rear of not wanting to worry some of the others. However, the more I read the more I consider that I'm in a relatively good situation!

I'll certainly try to help where I can.

Mark