How was you first told you had IBD and how are you now?

[silverbadger]

I thought it might be good to hear how everyone was first told they have IBD and where they are today.

This is my story..

I have had IBD for 40ish years. I was first diagnosed by a wonderful IBD specialist. Way back then there were no computers and all the patients files were crammed into cardboard files.

I can remember walking into his room and there was an ashtray sitting on the side of his desk, overflowing with cigarettes butts.

This was my second visit to see him at the hospital, my 1st explaining that i was bleeding from my bum, in pain, loosing weight and couldn’t be far from the toilet. He had sent me for a endoscope and I was here to find out the results. He opened my cardboard folder and took out a photo negative that he placed on his desk. I was a young and healthy 20 something year old who had never been ill.

If it wasn’t for my trousers being stained with blood from my bum and my girlfriend noticing it I wouldn’t be here now.

Anyway when he had finished reading something, he took his half speck glasses off and let them hang around his neck on a cord.

He paused then said “lad you have Ulcerative Colitis” and “thats why you are bleeding, bloated and feeling rough”. He started to write out a prescription. on his pad, there were no computers back then. He said for me to take this to the chemist and to start taking them as soon as you can.

He then asked if I had any question. So I asked the only question I needed to know “ so how long will it take to clear up, i’m going on holiday in a few weeks, will it be cleared up before then?”. His reply was “No lad, there is no cure you have got it for life” He stood up walked over to the door and opened it for me to leave.

I thanked him and walked outside searching for my cigarettes packet. I took out the last cigarette, tucked it behind my ear and asked the receptionist if i could borrow her pen. I wrote “Ulcerative Colitis” on the packet, just in case I forgot what it was he had said i had.

And that was that my IBD journey had started.

Today I have had many operations that have taking many bits of me away. I no longer eat any food, I am on total patient nutrition supplement diet, in constant pain, in and out of hospital and somewhere along the way was re-diagnosed with Crohn’s disease.

I lost my house, marriage, job and many friends along the way. But I have gained some wonderful friends, been hospital ward mates with some fantastic guys, Been lucky enough to of been treated by some brilliant surgeons, medical teams, nurses, doctors, the guys who bring the food around. And thanks to them I am still hear to tell the tail.

From a couple of words on cigarette packet to Robotic Surgeons.

Keep on fighting my fellow IBD warriors , we are all stronger than we think.

[AdrienneMe]

Your journey has been a long one bless you. I am sure I had Crohns when I was very young but I was only diagnosed in 1992 at 37. I had to have a hemicolectomy in 1998 and have been able to live a normal life since. 67 and counting 😁.