Hey guys and gals, I'm new here and thought I'd post a little intro to myself and my disease in the hope that someone finds it useful or interesting.
I was first diagnosed in 2006 whilst at college doing my a-levels. I had abdominal pain, rectal bleeding, frequent toilet visits, and diarrhea. After ignoring this for 6 months it got unbareable and I was admitted to hospital. After various tests (CT scan, colonoscopy, ect) these confirmed the diagnosis and i was put on prednisolone 40mg. This was initially helpful but once off them the symptoms just came back as strong as ever.
My consultant then decided to put me on azathiaprin and balsalazide; both of these drugs seemed to do very little for me and because of the azathiaprin compromising my immune system i picked up a lot of little bugs and illnesses.
In 2010 i was put on Humira. This was somthing that has a lot of warnings and worries a lot of people however i have been on this drug for over 2 years and have not noticed any side effects however it has only had minimal positive effect. last year the dose was doubled to weekly instead of fortnightly but symptoms would still not go away.
Last April I had another set of tests and examinations. These showed that the damage to my terminal ileum and rectum was extensive and there was a real danger of something rupturing so surgery was the only real option left. My body had become very malnourished because of the years of active crohns and the doctors were worried that my body would not heal from the removal of the diseased large intestine and ileum and formation of the ileostomy. Because of this the decision to put me on total perenteral nutrition (TPN) for 3-6 months was taken to build me up for the op. TPN is nutrition that goes through a central line into the jugular in your neck and can be used as your whole diet.
I was admitted to hospital at the beginning of October, had the central line fitted and started on the TPN. Whilst this was going on I my crohns worsened. I developed deep vein thrombosis (DVT), had a high temperature, was vomiting regularly, and had stomach cramps worse than i had ever had. The doctors discovered that a fistula between my large and small bowl was causing these symptoms and that surgery was required there and then.
I had a loop ileostomy performed to isolate the diseased parts of the bowl. (The full op wasn't performed because of the malnutrition) This was done 4 weeks ago and I will have the diseased parts cut out in a few months but it is very unlikey of any ileostomy reversal so it will most likely be made permanent. Since the loop ileostomy i have had no Crohns pains at all; it's quite amazing after constant suffering for the past 6 years, the only pain has been from the wound and stoma itself but that's just normal pain and has pretty much gone already.
I have always tried to get on with a normal life. I finshed my a-levels, went to university and completed a degree in mathematics and then started a teaching qualification (PGCE). I had to drop out of this in April but am planning to go back to it as soon as I'm fit.
My advice to anyone suffering from IBD is to not ignore it, tell your doctor all the grim detail, tell close friends and family all the grim details (support is super helpful) and don't let it rule your life. It may sometimes be hard but you have to believe you can get to the point of normality and comfort, it will happen eventually, it's just a question of finding what meds or surgery works for you!
Please ask any questions, opinions or even advice. all will be happily received and responded to
I was first diagnosed in 2006 whilst at college doing my a-levels. I had abdominal pain, rectal bleeding, frequent toilet visits, and diarrhea. After ignoring this for 6 months it got unbareable and I was admitted to hospital. After various tests (CT scan, colonoscopy, ect) these confirmed the diagnosis and i was put on prednisolone 40mg. This was initially helpful but once off them the symptoms just came back as strong as ever.
My consultant then decided to put me on azathiaprin and balsalazide; both of these drugs seemed to do very little for me and because of the azathiaprin compromising my immune system i picked up a lot of little bugs and illnesses.
In 2010 i was put on Humira. This was somthing that has a lot of warnings and worries a lot of people however i have been on this drug for over 2 years and have not noticed any side effects however it has only had minimal positive effect. last year the dose was doubled to weekly instead of fortnightly but symptoms would still not go away.
Last April I had another set of tests and examinations. These showed that the damage to my terminal ileum and rectum was extensive and there was a real danger of something rupturing so surgery was the only real option left. My body had become very malnourished because of the years of active crohns and the doctors were worried that my body would not heal from the removal of the diseased large intestine and ileum and formation of the ileostomy. Because of this the decision to put me on total perenteral nutrition (TPN) for 3-6 months was taken to build me up for the op. TPN is nutrition that goes through a central line into the jugular in your neck and can be used as your whole diet.
I was admitted to hospital at the beginning of October, had the central line fitted and started on the TPN. Whilst this was going on I my crohns worsened. I developed deep vein thrombosis (DVT), had a high temperature, was vomiting regularly, and had stomach cramps worse than i had ever had. The doctors discovered that a fistula between my large and small bowl was causing these symptoms and that surgery was required there and then.
I had a loop ileostomy performed to isolate the diseased parts of the bowl. (The full op wasn't performed because of the malnutrition) This was done 4 weeks ago and I will have the diseased parts cut out in a few months but it is very unlikey of any ileostomy reversal so it will most likely be made permanent. Since the loop ileostomy i have had no Crohns pains at all; it's quite amazing after constant suffering for the past 6 years, the only pain has been from the wound and stoma itself but that's just normal pain and has pretty much gone already.
I have always tried to get on with a normal life. I finshed my a-levels, went to university and completed a degree in mathematics and then started a teaching qualification (PGCE). I had to drop out of this in April but am planning to go back to it as soon as I'm fit.
My advice to anyone suffering from IBD is to not ignore it, tell your doctor all the grim detail, tell close friends and family all the grim details (support is super helpful) and don't let it rule your life. It may sometimes be hard but you have to believe you can get to the point of normality and comfort, it will happen eventually, it's just a question of finding what meds or surgery works for you!
Please ask any questions, opinions or even advice. all will be happily received and responded to
