• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My Story

Hi there,I'm 52, live in UK & have had Crohns for 28 years. It 1st occurred when I was in the Royal Navy. I had been swimming in the sea & overnight had terrible diarrohea. I was 24. Unfortunately due to incompetence it was not diagnosed for 2 years. By that stage I was in a helluva state. Passing blood all the time, terrible cramps, losing a lot of weight & basically couldn't really do my job which on a warship is not good. Eventually a blood test was done & I was very very anemic. Was sent straight into hospital. Various tests including an un sedated colonoscopy & I was told I had Crohns. Never heard of it!! Relieved it wasn't cancer TBH.
But little did I know the heartache in store. After a course of Pred. & Sulphasalazine I was feeling better. But not for long. And worse I was medically discharged from the Royal Navy. I managed to pick myself up & get another job & all seemed well for a long time. Few flare ups but nothing to get too worried about until 1997. Suddenly I hit a brick wall. Lost a massive amount of weight, terrible tiredness. Tests & more tests, Colonoscopys barium follow throughs etc. I had a very nasty fistula & had a right hemi colectomy & resection. Recovery was long but good. I was fine & moved on in the jobs ft.
Another flare up around 2000 meant I was on Azathioprine. It worked superbly, but unfortunately it conflicted with my skin badly. When in the RN I had been to africa, west indies, australia, middle east, far east & had suffered some sunburn. With fair skin this isn't great & with the Azathioprine I started getting some carcinomas. And my blood was badly affected as well. So I had to stop taking it. Big problems occurred resulting in a Laporotomy & resection in 2002. Never really recovered from that TBH.
Had some desperately low points since then, been through Accident & Emergency 3 times with Bowel Blockages, absolute agony. Had a Laproscopic Ileocolic Resection last August & now find myself on Humira since December2010 that hasn't worked. Methetrexate is looming large.
I find that unless anyone has real experience of Crohns they simply have no idea what you go through, the depression, the anxious searching for the toilet when out whether you need it or not, the leg cramps because you've lost your salts through diarrohea. The night sweats & having to sleep on a towel.
I hope & pray the scientists will come up with a cure within my lifetime to stop this vicious illness because ultimately people dont deserve this nasty disease. The knowing that currently it cant be cured-makes me want to shout with frustration but hey with the superb support of my wife & two fantastic children life is still very much worth living, even through the tough times.
 

xJillx

Your Story Forum Monitor
Hi Grant! I am so sorry you have been through so much. And you are right, it is difficult for other who don't have IBD to understand what we go through daily. But WE understand! This forum has helped me greatly to connect with others who are in the same boat as me. I know you will find it helpful, too. Welcome!
 
Tks Jill. Had a very difficult day today, feeling a bit better tonight.
But yes I like the look & feel of this forum.
Best Wishes
Grant
 

ameslouise

Moderator
Hi Grant and welcome! You have been thru a lot in your 28 years!

Sorry you are having a rough time right now, and that the Humira isn't working. It's been a miracle for many, but it didn't work for me either! Maybe the Humira - Metho cocktail will do the trick.

This forum is a great place for support and advice. You are right - only those that have been thru it can really understand. And we've been there. Oh, how we've been there!

Good luck - hope things take a turn for the better for you!

- Amy
 
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