Hello,
It is a bit weird for me to start talking about what I have gone through as normally I just hold it in. But after almost 5 years I decided that I wanted to join a forum because we all need some support and advice and maybe even seeing that your problems are real and just as important even though they are not visible.
So here we go...
My name is Claudia, I am 25 years old and I am originally from the Netherlands (been living in the UK for 2 years now, fell in love with an English guy and stuffs). When I began my Crohn's journey I was in my last year of MBO (I guess it's like college). I started having severe stumach pains and I would fall on the floor and just scream and cry. I woke up my parents plenty of times. during the night. Went back and forth to the gp and hospital. Ran to the toilet about 15 times a day. On my internship, which was in a store, I would throw my college the keys of the cashregisters and run...(it kept me fit alright...) finally after months of tests and gp/hospital visits I got my label. I was glad, it was something, it could get resolved... Ohhhh boy... After trying loads of different meds, graduating college while being sick like a dog, gaining 25 kilo in 4,5 months because my brilliant doctor put me on 20mg of prednison I got so much more then a label. My body was scarred all over from the massive weightgain of the prednison, I was litterly drooling when thinking about meat... Oh my god.. (someone else had that?) I started to call myself a little zebra to try to lighten the mood. Finally the pain was alot less and I got put on purinethol, so then even more bloodtests came... I have horrible veins, they always have to try to get it in a vein and I would always end up with big bruises on my arms. I was fine finally after over a year. I went to university in the mean time, failed.. But I was doing better.
I took a year of from school and went to work, I still had occasional pain and I had no idea why. The blood result were always fine. After the year of work I tried school again and failed again, I just can't handle the stress anymore and mid year I moved up to England to live with my boyfriend. The transaction with hospitals was horrible and slow. I was used Dutch doctors, they are fast because you pay... Here they are alot slower with appointments and such... (no offence).
I moved a few times as my boyfriend finished university and am now living in Stoke. I still go to a hospital almost 2 hours away because I am in the middle of all kinds of tests... (the endoscopy, mri, blood, ct, xrays) this has been going since last october after a long wait to even get an appointment at the hospital. (at that time I was still getting weird pain attacks every few weeks at the same side my first infection was, bottom left. Oh and almost forgot I also need b12 shots every so often because of where the infection was) so since last october something happend. Those pain attacks... It came one day again in october and never went. I had to lay on bed and not move for up to 6 weeks before I could do things again very slowly. I took 100mg of tramadol 4 times a day, they gave me liquid morfine (hate it, made my heart and breathing go funny so I stick with tramadol).
At this very momemt I still battle with that pain. I can't do anything or it comes. It sometimes goes away for a week. No one can touch my stumach, i had to recover from the doctors appointment for 3 weeks. Then went away... Now last week I lifted a grocery crate... Now I am resting again... My next appointment with the hospital is 16th of may to discuss if they find anything on the ct scan and if we should do an investigative surgery. In mean time my white bloodcells have been going down and I have been lowered a few times on my purinethol so it was all normal again. I have no infections or anything... They also always ask me if I have a fever... I rarely have em even when I had my infections...(anyone else had that).
I probably left out quite a bit because it's difficult to write everything down... So much happend.
I just wish this pain would go away, I can't work, I can't walk anywhere.. I can't live at the moment and I am starting to get depressed. My outside world doesn't get it at all.
My boyfriend tries but he will never truely know the hellish pain I am in.
I am sorry if I sound stupid :s
Kind regards.
It is a bit weird for me to start talking about what I have gone through as normally I just hold it in. But after almost 5 years I decided that I wanted to join a forum because we all need some support and advice and maybe even seeing that your problems are real and just as important even though they are not visible.
So here we go...
My name is Claudia, I am 25 years old and I am originally from the Netherlands (been living in the UK for 2 years now, fell in love with an English guy and stuffs). When I began my Crohn's journey I was in my last year of MBO (I guess it's like college). I started having severe stumach pains and I would fall on the floor and just scream and cry. I woke up my parents plenty of times. during the night. Went back and forth to the gp and hospital. Ran to the toilet about 15 times a day. On my internship, which was in a store, I would throw my college the keys of the cashregisters and run...(it kept me fit alright...) finally after months of tests and gp/hospital visits I got my label. I was glad, it was something, it could get resolved... Ohhhh boy... After trying loads of different meds, graduating college while being sick like a dog, gaining 25 kilo in 4,5 months because my brilliant doctor put me on 20mg of prednison I got so much more then a label. My body was scarred all over from the massive weightgain of the prednison, I was litterly drooling when thinking about meat... Oh my god.. (someone else had that?) I started to call myself a little zebra to try to lighten the mood. Finally the pain was alot less and I got put on purinethol, so then even more bloodtests came... I have horrible veins, they always have to try to get it in a vein and I would always end up with big bruises on my arms. I was fine finally after over a year. I went to university in the mean time, failed.. But I was doing better.
I took a year of from school and went to work, I still had occasional pain and I had no idea why. The blood result were always fine. After the year of work I tried school again and failed again, I just can't handle the stress anymore and mid year I moved up to England to live with my boyfriend. The transaction with hospitals was horrible and slow. I was used Dutch doctors, they are fast because you pay... Here they are alot slower with appointments and such... (no offence).
I moved a few times as my boyfriend finished university and am now living in Stoke. I still go to a hospital almost 2 hours away because I am in the middle of all kinds of tests... (the endoscopy, mri, blood, ct, xrays) this has been going since last october after a long wait to even get an appointment at the hospital. (at that time I was still getting weird pain attacks every few weeks at the same side my first infection was, bottom left. Oh and almost forgot I also need b12 shots every so often because of where the infection was) so since last october something happend. Those pain attacks... It came one day again in october and never went. I had to lay on bed and not move for up to 6 weeks before I could do things again very slowly. I took 100mg of tramadol 4 times a day, they gave me liquid morfine (hate it, made my heart and breathing go funny so I stick with tramadol).
At this very momemt I still battle with that pain. I can't do anything or it comes. It sometimes goes away for a week. No one can touch my stumach, i had to recover from the doctors appointment for 3 weeks. Then went away... Now last week I lifted a grocery crate... Now I am resting again... My next appointment with the hospital is 16th of may to discuss if they find anything on the ct scan and if we should do an investigative surgery. In mean time my white bloodcells have been going down and I have been lowered a few times on my purinethol so it was all normal again. I have no infections or anything... They also always ask me if I have a fever... I rarely have em even when I had my infections...(anyone else had that).
I probably left out quite a bit because it's difficult to write everything down... So much happend.
I just wish this pain would go away, I can't work, I can't walk anywhere.. I can't live at the moment and I am starting to get depressed. My outside world doesn't get it at all.
My boyfriend tries but he will never truely know the hellish pain I am in.
I am sorry if I sound stupid :s
Kind regards.
) several times. I hate them so much. I have had it recently here and I asked to be put in a light sleep... Because of the pain I have in that left corner it has always been a hellish experience. During the inflamation and also after. I had it done I believe last january (could have been december) and they gave me the maxixum amount of painkillers, they kept upping the dosis while performimg the procedure... Even though I told them before to pleeeaaaassseee put me to sleep, even then I wake up and they have to give me more. I really have a fear for the colonoscopy because they always hurt so much and quite traumatising. They have had to abored early this time again because it was unbearable. (I think I might have frightenend some patients in the waiting room...oops)