Well quick back ground... Diagnosed during my GCSE's/A-Levels, so didn't finish those. No college, no job, no social life. Just family. Tried many, many drugs and currently on Humira fortnightly and Codiene Phosphate.
Went to see my Consultant to basically say cut me open, take it out!!! I'm fed up with EVERYTHING! Having nothing to keep me going (No suicide thoughts!), no job or qualifications to eventually get that job. No friends because they got fed up of "I can't go here or there today!". No nothing. So he says, I only have a little bit of inflammation so surgery isn't an option! And then has the cheek to say can I not get a job because of my actual Crohn's symptoms or because what Crohn's has done to me... mentally!! No Mr Doctor man! It's not mentally!! I have pain in my stomach every day, I am on the toilet too many times to count everyday, I take a nap everyday because I'm soo exhausted from being on the toilet and getting up during the night because of the pain and toilet needs... EVERYDAY! Tell me what job will take me on like this and I will happily take it! Stupid man! So I got him to get me to see and Surgeon to have a chat and she (YES, it's a she, I'm soo happy, maybe she will understand a bit better than a bloke that if you have an "accident" it is more embarrassing than just sh**ing yourself!! And using your own toilet in stead of a public one with millions of people listening in and smelling is embarrassing too!!) will look at my file un-biased and see what she thinks is best! And if she agrees and no surgery is an option, then my stupid consultant will take a look and "reasses" my treatment plan... What he's going to do here I do not know. I've been on Remicade and Humira, had all the other types of drugs and reacted badly to all. Tried the diets, the aloe vera, the proiotics, the EVERYTHING!! Grrr!!!! Stupid Doctors!!! I refuse to go back on steriods! I've spent 4 years on them! I've only just got rid of most of the side effects, I'm not having them again!!! I finally feel like me, maybe a little emotional and poorly me, but me non the less!!! God I wish for some miracle cure!!! My point to him was, surgery is my last and only option, he even said it himself. Yet he expects me to live daily the way I am, and get a job and a life. It won't work!! I tried!!! Not the job part but the life part, I gritted my teeth and went out with my friends, went on nights out, made sure I got up off my bottom and did something and guess what... I had the worst flare of my life!!! I nearly died from just living like a normal, non working person. I couldn't imagine if I had had a job at the time. I wouldn't of handled the stress! Because when I go out it's soo stressful when I'm like this! I'm thinking, right we're going to Truro town to shop, that 10 miles away, 20 mins in the car, can I hold it that long, probably not, so I'll take extra codeine and extra immuran. Right lets give them 15 mins to work, right lets go. Now entering the town, no where to park. Crap. I need to go. Looking for a loo, with toilet paper aswell!! Then got to tell my friend to basically pull up in front of the toilet NOW!!! Wishing I'd taken my car instead so I could of done it faster, seeing her face thinking well you don't look that bad?! Me jumping out and running like superman. Finally get going, then friend comes in shouting, Vicky, found a place to park!! Sounding all happy when I'm thinking Get OUT!! I'm trying to use the loo in peace, I don't need you talking to me whilst I'm huffing and grunting!!! Finally finish and we shop for a bit. Then oh lets get some lunch and I'm running through all the things I can eat right now, come up with just a simple chicken something. She wants KFC, I obv dont so I order the plainest thing on the menu. Staring at her food, dribbling whilst I eat my crap meal and oh another toilet trip! Thankfully it's quick so she doesn't come searching. Then got to take more meds, make sure I drink some water to keep hydrated. Then FINALLY after a few more hours of walking we get to the car! My legs and back and hips and ankles and everything is aching, arthritis playing up again. Take some more meds. Try not to think of the 20 min drive back. No toilets on the way. Finally get home and she wants to go clubbing, I just curl up in a ball and wait for her to let herself out. And it's only 6pm!!! I would love my Doctor to spend one day like that, whilst suffering all the pains and embarrassments and aches and trying to explain something that is so simple to you, but not to a friend. Let's see him try it then tell me it's all in my mind!!! :/
Went to see my Consultant to basically say cut me open, take it out!!! I'm fed up with EVERYTHING! Having nothing to keep me going (No suicide thoughts!), no job or qualifications to eventually get that job. No friends because they got fed up of "I can't go here or there today!". No nothing. So he says, I only have a little bit of inflammation so surgery isn't an option! And then has the cheek to say can I not get a job because of my actual Crohn's symptoms or because what Crohn's has done to me... mentally!! No Mr Doctor man! It's not mentally!! I have pain in my stomach every day, I am on the toilet too many times to count everyday, I take a nap everyday because I'm soo exhausted from being on the toilet and getting up during the night because of the pain and toilet needs... EVERYDAY! Tell me what job will take me on like this and I will happily take it! Stupid man! So I got him to get me to see and Surgeon to have a chat and she (YES, it's a she, I'm soo happy, maybe she will understand a bit better than a bloke that if you have an "accident" it is more embarrassing than just sh**ing yourself!! And using your own toilet in stead of a public one with millions of people listening in and smelling is embarrassing too!!) will look at my file un-biased and see what she thinks is best! And if she agrees and no surgery is an option, then my stupid consultant will take a look and "reasses" my treatment plan... What he's going to do here I do not know. I've been on Remicade and Humira, had all the other types of drugs and reacted badly to all. Tried the diets, the aloe vera, the proiotics, the EVERYTHING!! Grrr!!!! Stupid Doctors!!! I refuse to go back on steriods! I've spent 4 years on them! I've only just got rid of most of the side effects, I'm not having them again!!! I finally feel like me, maybe a little emotional and poorly me, but me non the less!!! God I wish for some miracle cure!!! My point to him was, surgery is my last and only option, he even said it himself. Yet he expects me to live daily the way I am, and get a job and a life. It won't work!! I tried!!! Not the job part but the life part, I gritted my teeth and went out with my friends, went on nights out, made sure I got up off my bottom and did something and guess what... I had the worst flare of my life!!! I nearly died from just living like a normal, non working person. I couldn't imagine if I had had a job at the time. I wouldn't of handled the stress! Because when I go out it's soo stressful when I'm like this! I'm thinking, right we're going to Truro town to shop, that 10 miles away, 20 mins in the car, can I hold it that long, probably not, so I'll take extra codeine and extra immuran. Right lets give them 15 mins to work, right lets go. Now entering the town, no where to park. Crap. I need to go. Looking for a loo, with toilet paper aswell!! Then got to tell my friend to basically pull up in front of the toilet NOW!!! Wishing I'd taken my car instead so I could of done it faster, seeing her face thinking well you don't look that bad?! Me jumping out and running like superman. Finally get going, then friend comes in shouting, Vicky, found a place to park!! Sounding all happy when I'm thinking Get OUT!! I'm trying to use the loo in peace, I don't need you talking to me whilst I'm huffing and grunting!!! Finally finish and we shop for a bit. Then oh lets get some lunch and I'm running through all the things I can eat right now, come up with just a simple chicken something. She wants KFC, I obv dont so I order the plainest thing on the menu. Staring at her food, dribbling whilst I eat my crap meal and oh another toilet trip! Thankfully it's quick so she doesn't come searching. Then got to take more meds, make sure I drink some water to keep hydrated. Then FINALLY after a few more hours of walking we get to the car! My legs and back and hips and ankles and everything is aching, arthritis playing up again. Take some more meds. Try not to think of the 20 min drive back. No toilets on the way. Finally get home and she wants to go clubbing, I just curl up in a ball and wait for her to let herself out. And it's only 6pm!!! I would love my Doctor to spend one day like that, whilst suffering all the pains and embarrassments and aches and trying to explain something that is so simple to you, but not to a friend. Let's see him try it then tell me it's all in my mind!!! :/
