C
catfud
Guest
Hello my name is Lee, I don't really know where to start... I'm 25 and was diagnosed when I was 16 with crohn's, and right now I feel totally lost. I have been dealing with crohn's for 9 years now and I have never spoken to someone else with the disease, I'm still trying to learn how to live with it.
I've reached a point where years of frustration and crap has just boiled up and I need to vent it out. I have read other peoples posts and their situation has been far worse than mine, but you all seem like a real supportive bunch and I think thats what I need. Support from people who understand rather than turning blue in the face trying to explain how im feeling to the people around me when they just don't get it.
I'd always had stomach pains as a child and never thought anything of it. Then in my young teenage years I began to feel more and more tired and started to have accidents. I tried to cover it up as best as I could, it was often very embarressing.
It got to the point where I could no longer go to school, had constant diarrhea and no desire to eat. I went to the doctors but they kept giving me the brush off saying it would clear up in a week or so. This went on for months! I spent 6 months of my life bedbound, I weighed nothing and my skin had gone grey. I was so weak I couldn't even get out of bed.
I would constantly wake up several times a night lying in my own feces. I didn't have the energy to move let alone go to the toilet a million times each night, or change my bed sheets repeatidly. My mother's partner was anything but understanding and would get angry that I was constantly waking them up in the middle of the night to ask for help. He was always making nasty comments that made me feel disgusted with myself. I was asigned a dedicated toilet so he wouldn't have to use the same toilet as me. He wanted to put a sign on it saying "Lee's Toilet". thank god a sign never went up.
Eventually the doctor decided to send me to the hospital to see a specialist. It took them about a year to finally diagnose me with crohn's. They put me on a course of steroids and I was feeling great within days. As I came off the steroids my symptons quickly returned. They tried me on various different meds but none of them worked and I suffered terribly with side effects.
I was poorly informed about the long term damages of steroids. I was fed up with feeling like crap and that none of this medication was working. I went directly to my doctor and told him I needed more steroids, he did not consult the specialists and basically handed them to me like sweets. I took them many times over a very short period of time. It wasn't until a checkup with the specialist that I was made aware of the complications and that I should not have been prescribed these without their consent.
I had some scans done and it was discovered that my bones had been greatly weakened. I'm told I currently have the bones of a 70 year old man (i'm only 25) I also have a disease in the base of my spine because of the weakened bones. (recently I was infromed by the specialist if I go on the steroids many more times I will not be able to do any physical activities when I'm older as my bones will simply break)
After this shock I pretty much said to hell with all the medication, I refused to take anything even though they advised me to. The specialist said himself that there is no guarentee this meds will work but they 'might' keep you weller for longer. I figured whats the point in taking these to stop yourself from feeling sick and tired when all the tablets do is make you feel sick and tired.
I started smoking lots of pot and to my suprise it kept my crohn's complete in check. I had a great run of about 6 years with only a very few minor days of diarrhea. My appetite was strong and no stomach pains, life was great! Eventually I decided I wanted to cut the pot out of my life, I wanted to be more from my life than being a lazy pot head. Thats when my troubles began again.
Shortly after all my symptoms returned. I had really bad pains in my stomach was constantly tired. I was suffering from really bad depression and anxiety attacks. I was reluctant to go back to the hospital and kept fighting it for about 4 months in the denial that it would eventually pass. My GF at the time could not understand my condition, she thought I didn't enjoy her company because I was depressed so much.
I had really bad wind (it smelt VILE) all the time and I had no control over this, her and all her friends would be grossed out and leave the room and I would just be sat by myself. When we were in bed together and id pass wind she would get so angry with me and just tell my how digusting it smelt and storm off to another room for hours on end. In the middle of the night I would have to get up and go outside to pass wind. The trouble is when your doing this 20 times a night and your suffing symptons you don't have the energy for this. I felt like the house pet that had been sent out the room for being bad. My status had been reduced to 'animal'. Sometimes I would pass wind in my sleep and she would get angry shouting at me that I did it on purpose to spite her.
I feel like I can't be around people during a flare up now 'because they shouldn't have to be exposed to me' I know this is rediculous my disease isn't contagious and I shouldn't have to feel like that but I do.
I recently went to the hospital and im ready to try meds again. I have been put on prednisolone and pentasa. I really didn't want to go on pentasa as i suffered really bad side effects in the past but decided to go with it as it's been a long time. The pred has worked wonders in the past in a matter of days but this time round does not seem to be taking any effect and I have been on it 2 weeks now. My GF brokeup with me a few weeks ago and I could really have done with her support right now. Though its probably a good thing lol she wasnt very understanding but still, breakups are stressful and It was something I could really have done without. I'm also in the middle of going to court which is very stressful!
ARGGGGGGHHHH!
The steroids have destroyed my sleep. I can't sleep until 2 am and wake up at 5 am without fail. By the time I drift off again my alarm goes off and its time for work. The pentasa is making my face numb and brain tingly it makes it very difficult to concentrate or think straight. So right now it's a whole lot of stress and meds that are doing far more bad than good. It's really too much for me to handle all at once, I'm screaming for a timeout.
I kept this bottled up for years and have always had the attitude of "this disease will never have a hold on my life" but right now im struggling greatly. I really badly need to get off this pred to clear up my head so I can think straight and be well rested. I think the stress is preventing the pred from working, feels like a vicious circle right now.
Sorry for the long post, I just dropped 9 years of word vomit into one post lol. I feel better for getting it out and I know that eventually I'll be through this and things will be ok, im just totally physically and emotionally drained right now. I feel like I'm learning to cope with the disease from day one again.
One thing I worry about a lot is the uncertainty of how am I gonna be in later life especially after reading others posts. Things can get really bad and you are all so strong for what you have faced!
I've reached a point where years of frustration and crap has just boiled up and I need to vent it out. I have read other peoples posts and their situation has been far worse than mine, but you all seem like a real supportive bunch and I think thats what I need. Support from people who understand rather than turning blue in the face trying to explain how im feeling to the people around me when they just don't get it.
I'd always had stomach pains as a child and never thought anything of it. Then in my young teenage years I began to feel more and more tired and started to have accidents. I tried to cover it up as best as I could, it was often very embarressing.
It got to the point where I could no longer go to school, had constant diarrhea and no desire to eat. I went to the doctors but they kept giving me the brush off saying it would clear up in a week or so. This went on for months! I spent 6 months of my life bedbound, I weighed nothing and my skin had gone grey. I was so weak I couldn't even get out of bed.
I would constantly wake up several times a night lying in my own feces. I didn't have the energy to move let alone go to the toilet a million times each night, or change my bed sheets repeatidly. My mother's partner was anything but understanding and would get angry that I was constantly waking them up in the middle of the night to ask for help. He was always making nasty comments that made me feel disgusted with myself. I was asigned a dedicated toilet so he wouldn't have to use the same toilet as me. He wanted to put a sign on it saying "Lee's Toilet". thank god a sign never went up.
Eventually the doctor decided to send me to the hospital to see a specialist. It took them about a year to finally diagnose me with crohn's. They put me on a course of steroids and I was feeling great within days. As I came off the steroids my symptons quickly returned. They tried me on various different meds but none of them worked and I suffered terribly with side effects.
I was poorly informed about the long term damages of steroids. I was fed up with feeling like crap and that none of this medication was working. I went directly to my doctor and told him I needed more steroids, he did not consult the specialists and basically handed them to me like sweets. I took them many times over a very short period of time. It wasn't until a checkup with the specialist that I was made aware of the complications and that I should not have been prescribed these without their consent.
I had some scans done and it was discovered that my bones had been greatly weakened. I'm told I currently have the bones of a 70 year old man (i'm only 25) I also have a disease in the base of my spine because of the weakened bones. (recently I was infromed by the specialist if I go on the steroids many more times I will not be able to do any physical activities when I'm older as my bones will simply break)
After this shock I pretty much said to hell with all the medication, I refused to take anything even though they advised me to. The specialist said himself that there is no guarentee this meds will work but they 'might' keep you weller for longer. I figured whats the point in taking these to stop yourself from feeling sick and tired when all the tablets do is make you feel sick and tired.
I started smoking lots of pot and to my suprise it kept my crohn's complete in check. I had a great run of about 6 years with only a very few minor days of diarrhea. My appetite was strong and no stomach pains, life was great! Eventually I decided I wanted to cut the pot out of my life, I wanted to be more from my life than being a lazy pot head. Thats when my troubles began again.
Shortly after all my symptoms returned. I had really bad pains in my stomach was constantly tired. I was suffering from really bad depression and anxiety attacks. I was reluctant to go back to the hospital and kept fighting it for about 4 months in the denial that it would eventually pass. My GF at the time could not understand my condition, she thought I didn't enjoy her company because I was depressed so much.
I had really bad wind (it smelt VILE) all the time and I had no control over this, her and all her friends would be grossed out and leave the room and I would just be sat by myself. When we were in bed together and id pass wind she would get so angry with me and just tell my how digusting it smelt and storm off to another room for hours on end. In the middle of the night I would have to get up and go outside to pass wind. The trouble is when your doing this 20 times a night and your suffing symptons you don't have the energy for this. I felt like the house pet that had been sent out the room for being bad. My status had been reduced to 'animal'. Sometimes I would pass wind in my sleep and she would get angry shouting at me that I did it on purpose to spite her.
I feel like I can't be around people during a flare up now 'because they shouldn't have to be exposed to me' I know this is rediculous my disease isn't contagious and I shouldn't have to feel like that but I do.
I recently went to the hospital and im ready to try meds again. I have been put on prednisolone and pentasa. I really didn't want to go on pentasa as i suffered really bad side effects in the past but decided to go with it as it's been a long time. The pred has worked wonders in the past in a matter of days but this time round does not seem to be taking any effect and I have been on it 2 weeks now. My GF brokeup with me a few weeks ago and I could really have done with her support right now. Though its probably a good thing lol she wasnt very understanding but still, breakups are stressful and It was something I could really have done without. I'm also in the middle of going to court which is very stressful!
ARGGGGGGHHHH!
The steroids have destroyed my sleep. I can't sleep until 2 am and wake up at 5 am without fail. By the time I drift off again my alarm goes off and its time for work. The pentasa is making my face numb and brain tingly it makes it very difficult to concentrate or think straight. So right now it's a whole lot of stress and meds that are doing far more bad than good. It's really too much for me to handle all at once, I'm screaming for a timeout.
I kept this bottled up for years and have always had the attitude of "this disease will never have a hold on my life" but right now im struggling greatly. I really badly need to get off this pred to clear up my head so I can think straight and be well rested. I think the stress is preventing the pred from working, feels like a vicious circle right now.
Sorry for the long post, I just dropped 9 years of word vomit into one post lol. I feel better for getting it out and I know that eventually I'll be through this and things will be ok, im just totally physically and emotionally drained right now. I feel like I'm learning to cope with the disease from day one again.
One thing I worry about a lot is the uncertainty of how am I gonna be in later life especially after reading others posts. Things can get really bad and you are all so strong for what you have faced!