Hi there,
Okay, so I have been diagnosed for 5 years now and this is the first time I have properly looked at a forum like this for information, help and even comfort. During the 5 years I have gone on many courses of steroids (prednisolone) starting at 80mg for a few weeks then reducing gradually. These always make me feel much better in myself even though they are not a long term solution.
I started off on Azathioprine which worked slightly but did not control the disease enough so then I was switched to Methotrexate injections and then tablets. I was on these for a while, and although they seemed to control my Crohn's disease extremely well, I was feeling sick gradually more and more each week I took the medication. Even with lots of sickness tablets it got to the point where I was just throwing the medication straight back up so it was doing no good and was taken off of it.
Next up was the Humira injections. Again, they seemed to do good but not good enough, I was on these for about a year and a half. I then (and am still on) Infliximab infusions. I have finished the induction period and am due to have the 4th infusion tomorrow and then 8 weekly until further notice.
So that's the medication side of my life. Now how I feel..
Day to day can be variable as I am sure it is for many of you. About a year ago I had an anal abscess which turned into a fistula I was emitted into hospital for but it sorted it self out and is currently not an issue (inactive?)
I have a stricture very low down which causes my main problem. Toilet issues! When I go I can't go all I need to go and its not very formed due to it simply being too narrow down there. This causes me to always have the urge to go to the toilet which affects me all the time. I have been under general anaesthetic 4 or 5 (I've lost count!) times for a "stretch" down there the latest being last month. After the last one I was given Movicol and Lactulose (constipation medication) to try and sort it out that way. I am still sorting out what dosages to use as they said the dosage depends on how well they work its hard for them to give me an exact dosage although it seems like its not doing what they hoped it would.
At my last appointment with the consultant it was mentioned about possibly going down the surgical root. And because of where it is this will result in a bag. Until this was mentioned I never knew the result of my condition could be having a bag for life. When I was last in hospital it was mentioned again and I was talked through it a bit more in detail so it seems like its fairly likely to be happening in the not so distant future.
I'm 20 years old and change my views on the surgery all the time. When I feel sort of alright I would rather just deal with the condition but when I am out and about and feeling terrible I wish I just had the surgery done already.
If there are any young men who have had this surgery done I would like to hear about your experience.
I am suppose to be climbing Mount Kilimanjaro in Tanzania, Africa in September. My consultant is happy and encouraging me to do it as he likes his patients to do all they can. Its being done for charity and I am climbing with my girlfriend and a group of about 30 from my University. Obviously as great an experience it will be (and I will do all I can to do it!) I am worried about the lack of toilets, the long period away from home and just being fit enough to do it!
Thank you for reading my story
Greg
Okay, so I have been diagnosed for 5 years now and this is the first time I have properly looked at a forum like this for information, help and even comfort. During the 5 years I have gone on many courses of steroids (prednisolone) starting at 80mg for a few weeks then reducing gradually. These always make me feel much better in myself even though they are not a long term solution.
I started off on Azathioprine which worked slightly but did not control the disease enough so then I was switched to Methotrexate injections and then tablets. I was on these for a while, and although they seemed to control my Crohn's disease extremely well, I was feeling sick gradually more and more each week I took the medication. Even with lots of sickness tablets it got to the point where I was just throwing the medication straight back up so it was doing no good and was taken off of it.
Next up was the Humira injections. Again, they seemed to do good but not good enough, I was on these for about a year and a half. I then (and am still on) Infliximab infusions. I have finished the induction period and am due to have the 4th infusion tomorrow and then 8 weekly until further notice.
So that's the medication side of my life. Now how I feel..
Day to day can be variable as I am sure it is for many of you. About a year ago I had an anal abscess which turned into a fistula I was emitted into hospital for but it sorted it self out and is currently not an issue (inactive?)
I have a stricture very low down which causes my main problem. Toilet issues! When I go I can't go all I need to go and its not very formed due to it simply being too narrow down there. This causes me to always have the urge to go to the toilet which affects me all the time. I have been under general anaesthetic 4 or 5 (I've lost count!) times for a "stretch" down there the latest being last month. After the last one I was given Movicol and Lactulose (constipation medication) to try and sort it out that way. I am still sorting out what dosages to use as they said the dosage depends on how well they work its hard for them to give me an exact dosage although it seems like its not doing what they hoped it would.
At my last appointment with the consultant it was mentioned about possibly going down the surgical root. And because of where it is this will result in a bag. Until this was mentioned I never knew the result of my condition could be having a bag for life. When I was last in hospital it was mentioned again and I was talked through it a bit more in detail so it seems like its fairly likely to be happening in the not so distant future.
I'm 20 years old and change my views on the surgery all the time. When I feel sort of alright I would rather just deal with the condition but when I am out and about and feeling terrible I wish I just had the surgery done already.
If there are any young men who have had this surgery done I would like to hear about your experience.
I am suppose to be climbing Mount Kilimanjaro in Tanzania, Africa in September. My consultant is happy and encouraging me to do it as he likes his patients to do all they can. Its being done for charity and I am climbing with my girlfriend and a group of about 30 from my University. Obviously as great an experience it will be (and I will do all I can to do it!) I am worried about the lack of toilets, the long period away from home and just being fit enough to do it!
Thank you for reading my story
Greg
