- Joined
- Dec 13, 2011
- Messages
- 3
Hi everyone,
My husabnd has asked me to join a forum as he thinks I could help a lot of fellow crohn"s people out there, so here is my story.
I started with crohn's over 20 years ago when I was training to be a doctor. In those days it was not that easy to diagnose, so it took another 2 years to find out the problem. I then became a medical rep for over 12 years so you could say I have a good understanding of anatomy, physiology, all aspects of medication, from trials to clinical papers, but also a good understanding of the UK NHS system, from GP's to hospitals and drug budgets etc.
My main problem is I react to all know treatments, or I become immune to them over time. At the moment the Hurima is just holding my crohn's at bay, so I don't end up 40kg again, but it is not putting me in remission. I am now holding out for the new stem cell trials to kick off in the UK, so I can try this. I have had 2 children, I have one major anal fistula which has been opened perminently now for 12 years (they inserted a wire to cause scar tissue so it would not heal). The abcess is active on and off all the time, but it has branched like an oak tree so I do get other fistulas, the lastest being a rectovaginal one (thanks body for that). I think I get every other problem which can be associated with crohn's as well. This all sounds so depressing but I am not. I am a really happy person and just live my life how I want to. Yes it is hard some days, but if I don't smile then the disease has won. My hospital have asked me to speak to other patients as they say my attitude is like no other patient (nice to hear). I horse ride regularly (in fact I had my own horse for 5 years but then Santa dropped a surprise baby off and I had to sell her). My fistula does mean I sit to one side to much in the saddle and I have nearly come off a few times due to galloping and turning to quick and nearly losing my balance. I moved to Spain 7 years ago and opened my own activity holiday centre, so I was always doing sporty activities. I just use to warn people that if I said "I need the loo I need the loo NOW". I have had so many accidents with not making it on time I can not remember, but I just laugh them off. My husband works in London from Monday to Friday so I am on my own during the week with my children (10 and 2). We have great fun and my son thinks his mum is cool and crazy.
One thing I do have is a good relationship with my consultant. I am seen as an equal, not as a patient. I don't moan and go in all depressed and I only contact them out of my regular appointments when I know I am going down hill fast. We work through everything together and we normally know about new treatments in the pipeline at around the same time as I keep on top of what is going on.
My final word is don't give up. When I was diagnosed the only treatment was steriods, steriods and more steriods. They have come so far in 20 years and understand this disease so much more. If you think of the treatments we have today to choose from, what will they have in the next 20 years???? I am here if anyone would like some help, advise or just needs cheering up as you are having a bad day/week/month. I will post you all some funny stories as they happen, as I am always getting up to something and the crohn's tends to add a twist to my life. One thing I would like anyone to comment on is if they have problems with their abcess'es flaring up when they have been at high alttitude? Everytime I take a plane trip or go skiing or climbing the thing blows up again abaout 2 days later (over use of antibiotics means they do not work or make me very sick). I have talked to my Dr about this but he says I am the only one he knows who this affects (typical me). Keep smiling everyone.:thumleft:
My husabnd has asked me to join a forum as he thinks I could help a lot of fellow crohn"s people out there, so here is my story.
I started with crohn's over 20 years ago when I was training to be a doctor. In those days it was not that easy to diagnose, so it took another 2 years to find out the problem. I then became a medical rep for over 12 years so you could say I have a good understanding of anatomy, physiology, all aspects of medication, from trials to clinical papers, but also a good understanding of the UK NHS system, from GP's to hospitals and drug budgets etc.
My main problem is I react to all know treatments, or I become immune to them over time. At the moment the Hurima is just holding my crohn's at bay, so I don't end up 40kg again, but it is not putting me in remission. I am now holding out for the new stem cell trials to kick off in the UK, so I can try this. I have had 2 children, I have one major anal fistula which has been opened perminently now for 12 years (they inserted a wire to cause scar tissue so it would not heal). The abcess is active on and off all the time, but it has branched like an oak tree so I do get other fistulas, the lastest being a rectovaginal one (thanks body for that). I think I get every other problem which can be associated with crohn's as well. This all sounds so depressing but I am not. I am a really happy person and just live my life how I want to. Yes it is hard some days, but if I don't smile then the disease has won. My hospital have asked me to speak to other patients as they say my attitude is like no other patient (nice to hear). I horse ride regularly (in fact I had my own horse for 5 years but then Santa dropped a surprise baby off and I had to sell her). My fistula does mean I sit to one side to much in the saddle and I have nearly come off a few times due to galloping and turning to quick and nearly losing my balance. I moved to Spain 7 years ago and opened my own activity holiday centre, so I was always doing sporty activities. I just use to warn people that if I said "I need the loo I need the loo NOW". I have had so many accidents with not making it on time I can not remember, but I just laugh them off. My husband works in London from Monday to Friday so I am on my own during the week with my children (10 and 2). We have great fun and my son thinks his mum is cool and crazy.
One thing I do have is a good relationship with my consultant. I am seen as an equal, not as a patient. I don't moan and go in all depressed and I only contact them out of my regular appointments when I know I am going down hill fast. We work through everything together and we normally know about new treatments in the pipeline at around the same time as I keep on top of what is going on.
My final word is don't give up. When I was diagnosed the only treatment was steriods, steriods and more steriods. They have come so far in 20 years and understand this disease so much more. If you think of the treatments we have today to choose from, what will they have in the next 20 years???? I am here if anyone would like some help, advise or just needs cheering up as you are having a bad day/week/month. I will post you all some funny stories as they happen, as I am always getting up to something and the crohn's tends to add a twist to my life. One thing I would like anyone to comment on is if they have problems with their abcess'es flaring up when they have been at high alttitude? Everytime I take a plane trip or go skiing or climbing the thing blows up again abaout 2 days later (over use of antibiotics means they do not work or make me very sick). I have talked to my Dr about this but he says I am the only one he knows who this affects (typical me). Keep smiling everyone.:thumleft:
