Does anyone else ever ask themselves " Will a whole day ever pass without having any pain ?!! "
I was diagnosed back in 2008, at the time i was more relived that they had figured what i actually had... i guess i hadnt really accepted having crohns back then! I left hospital with a handful of tablets to take and returned for tests and appointments in the coming 2 years without many flare ups.
In 2010 it came back to haunt me, continued flares meant stints back on steroids and new tablets to try and get me back into remission. I strarted azathioprine, becuase im tiny it was intially on the smallest dose but gradually increased to 100mg daily. With this came the side effects, Flu like symptoms, aching muscles, Vision change, Acne and skin rashes! Alongside the daily vomiting and nausia, extreme tierdness everyday become that little bit harder! I wouldnt ever say i wnet into full remission but there were periods that where better than others!
After an MRI scan it was decided that i would start infliximab infusions before going under the knife to see if this could bring me into remission! A scary decision, there are lots of potential risks with this drug which must be looked into before agreeing! Being a young woman and wanting children in the future i guess was a huge factor, but i agreed.
Each infusion id stay in hospital for 7-8 hours for the first 3 infusions whilst it was given to me. Id go home and fall straight to sleep, the next day waking up like i hadnt slept at all and as if id been in a ring with Mike Tyson! I also started to have fainting episodes but after ECGs it was put down to another side effect. I once fell down the stairs and broke my thumb, luckily i now know when im going to faint so take precautions to ensure i stay safe.
Within the first 4 weeks i saw a massive improvement, no nausea or vomitting and a little more energy! i felt like a new person and the best i had done for years! For once the good days outweighed the bad
My infusions went to 8 weekly and i still felt great, the 7th week id feel like i needed the infusion but only because id get a little more tired than usual.
7 weeks ago i went into a flare, i beleive it was behind stress which is a main factor into me flaring from time to time. I have a very stressful job with lots of responsibilities, getting up at 7am when your so tierd and still emailing into the late night took its toll on me! I was signed off, and completed deflated. I began to feel depressed and anxious about everything! Not sleeping at night and taking sleeping tablets. But THIS FLARE WAS DIFFERENT! i realised only I could take steps in my life to help my lifestyle and ELIMINATE THOSE ADDED STRESSES that i didnt need! The doctor could give me any medication and tests to make me feel better but only I could HELP MYSELF! I handed in my notice and got a new job with less stresses involved!
2 weeks on and im better, not 100 %. Everyday i have pain but some more so than others. I start my new job in a few weeks, and other than the normal anxious feeling im totally excited to start!
Im still on my infusions, but am being monitered carefully as my liver function keeps rising...another side affect most probably! I have the most amazing friends, family and partner who support me at all times. If i did not have them every day would be a little more difficult.
I hope this has helped others who may be going through difficult times, when i felt low it was great to hear from others who where going through similar problems..your not alone
Fingers crossed for remission!!
I was diagnosed back in 2008, at the time i was more relived that they had figured what i actually had... i guess i hadnt really accepted having crohns back then! I left hospital with a handful of tablets to take and returned for tests and appointments in the coming 2 years without many flare ups.
In 2010 it came back to haunt me, continued flares meant stints back on steroids and new tablets to try and get me back into remission. I strarted azathioprine, becuase im tiny it was intially on the smallest dose but gradually increased to 100mg daily. With this came the side effects, Flu like symptoms, aching muscles, Vision change, Acne and skin rashes! Alongside the daily vomiting and nausia, extreme tierdness everyday become that little bit harder! I wouldnt ever say i wnet into full remission but there were periods that where better than others!
After an MRI scan it was decided that i would start infliximab infusions before going under the knife to see if this could bring me into remission! A scary decision, there are lots of potential risks with this drug which must be looked into before agreeing! Being a young woman and wanting children in the future i guess was a huge factor, but i agreed.
Each infusion id stay in hospital for 7-8 hours for the first 3 infusions whilst it was given to me. Id go home and fall straight to sleep, the next day waking up like i hadnt slept at all and as if id been in a ring with Mike Tyson! I also started to have fainting episodes but after ECGs it was put down to another side effect. I once fell down the stairs and broke my thumb, luckily i now know when im going to faint so take precautions to ensure i stay safe.
Within the first 4 weeks i saw a massive improvement, no nausea or vomitting and a little more energy! i felt like a new person and the best i had done for years! For once the good days outweighed the bad
My infusions went to 8 weekly and i still felt great, the 7th week id feel like i needed the infusion but only because id get a little more tired than usual.
7 weeks ago i went into a flare, i beleive it was behind stress which is a main factor into me flaring from time to time. I have a very stressful job with lots of responsibilities, getting up at 7am when your so tierd and still emailing into the late night took its toll on me! I was signed off, and completed deflated. I began to feel depressed and anxious about everything! Not sleeping at night and taking sleeping tablets. But THIS FLARE WAS DIFFERENT! i realised only I could take steps in my life to help my lifestyle and ELIMINATE THOSE ADDED STRESSES that i didnt need! The doctor could give me any medication and tests to make me feel better but only I could HELP MYSELF! I handed in my notice and got a new job with less stresses involved!
2 weeks on and im better, not 100 %. Everyday i have pain but some more so than others. I start my new job in a few weeks, and other than the normal anxious feeling im totally excited to start!
Im still on my infusions, but am being monitered carefully as my liver function keeps rising...another side affect most probably! I have the most amazing friends, family and partner who support me at all times. If i did not have them every day would be a little more difficult.
I hope this has helped others who may be going through difficult times, when i felt low it was great to hear from others who where going through similar problems..your not alone
Fingers crossed for remission!!
