- Joined
- Aug 27, 2012
- Messages
- 3
I feel a need to write down my story, not as much for anyone else, but for me. I have found writing to be therapeutic. I was diagnosed with crohn's in 2006, and had been having mild symptoms for a few years before that, including some pretty bad joint pain, specifically in my left knee. I was diagnosed after becoming extremely ill, i was tired all the time, could barely eat, and when i did it went right through me. I am a mechanic, and always loved my job, but it can be physically demanding at times. i got to the point that I just didnt have the energy to do my job. I found out (because i wasnt keeping track of it) that over tge course of roughly 2 to 3 weeks I had gone from 175lbs to 140. needless to say when I saw that I gave up on my refusal to go to the hospital. At the hospital they ran the normal tests, and referred me to a gastrologist, who did the colonoscopy, and gave me the crohn's diagnosis.
I had already guessed that was going to be the diagnosis, and had read up on it, but when he confirmed it, it still sucked knowing I have a chronic disease. Regardless though I was still able to keep a positive attitude about it. I always had the "could be worse" attitude, and thats what i would tell everyone. i would even joke about it. The guys in my shop where I worked would say I had a bad asshole, and i would laugh about it. My doc had me on several meds, pentasa, prednisone, which he eventually switched to 6-mp, and remicade infusions. i also took over the counter supplements, but the point was that i felt a ton better. I felt better, hell i was a lot better, but I still wasnt real good. i still was running to the bathroom 5-10 times a day, and the big problem was, the pain was still there, but i was dealing with it. Then i got a fistula, going from my intestine out through my skin, right next to my anus, so i basically had two buttholes,and the second one hurt a lot. When I had to go to the bathroom, it would hurt so bad that there would be tears streaming down my face, i couldnt help it, and when i was done it would look like someone had slaughtered a animal in the toilet. I did get pain meds for it while i was waiting to have the surgery to fix it.
they didnt do much for the fistula, but the joint pain, and abdominal pain they worked great for that. Still though back then I was afraid of becoming addicted, and stopped using them after the surgery had healed. After that I was still able to keep a positive attitude about my disease. I pretty much had it under control. I was able to work, and I just got used to running to the bathroom 5-10 times a day. The joint pain was another story though, it had been getting worse every day, and was severely affecting my sleep. I talked to my doc about it, and about getting on pain meds for it, and he refused, telling me that I could take 8 tylenol a day for it, but of course no ibuprofen. I tried that for a little while, and may as well have been taking sugar pills. The pain got so bad, and especially at night that i would take handfuls of tylenol, and ibuprofen. I feel very fortunate not to have destroyed my liver doing that, and it was pointless anyways, they didnt help. Next I went to see a rheumatologist, and I tried everything he could think of with nothing working. After I had been seeing him for months without anything working, I finally asked for a narcotic pain med. Wow he acted like I was in a drug cartel.
So I stopped seeing him, no reason to pay someone who isnt doing a thing that helps. By this time the pain was so bad that I would be lucky to fall asleep at all. I usually was just sleeping when i got so exhausted I would basically pass out. Shortly after I stopped seeing him, I developed another fistula. This time it was between my large intestine, and my bladder, and that caused some serious problems with infections. When i went in the first time I noticed something wrong, to see my GI doc, I asked again for pain medication. Thats the time I totally lost it with him, his argument being, I would get addicted, and be on them for the rest of my life. Of course I thought that was the stupidest thing i had ever heard, since I do in fact have a chronic disease, and wht should i have to live in pain when he could help me to have a more normal quality of life. I didnt get them, but did find out that i was going to have to have another surgery to repair the fistula!!! yeah!!!
During the surgery they had to remove about six inches of my large intestine, and repair my bladder, good times. While I was in the hospital recovering from the surgery, it hit me like a ton of bricks, just what it really meant to have a chronic disease, and my positive attitude was gone, just like that. And ten days after coming home from the hospital, my wife informed me that she wanted a divorce, guess it hit her to. Needless to say I was devastated, I really loved her, and that was when my downward spiral began. I just couldnt cope with the pain anymore, physical, and mental, so i started getting oxy's off the street. It was really bad because the only ones I could find were the 80mg oxycontins. I am very lucky to be alive. i severely abused them. before I finally quit, I was taking 6 or 7 of those a day, and i was snorting them. I went cold turkey, and managed to survive it, and make it through without giving in to temptation.
I was still taking all my other meds for crohns, but i had found out, taking narcotic pain meds pretty much evened my constant runs to the bathroom. i would only go once a day, and i could sleep great, the joint pain was a lot better, and the abdominal pain was totally gone. I knew though that I couldnt just go back to buying drugs off the street. i did manage to find a very good pain management doctor, who is aware of my past problems, and monitors me closely, and of course gives me a much lower dosage. But it still works, i can easily forget that i even have crohn's i feel so well with the right pain meds. I mean just the fact that I only use the bathroom once a day is awesome, and im able to sleep like a baby. They dont totally eliminate the joint pain, but its so much better its unbelievable. I just wish i would have found him before the last surgery.
i said it hit me that i have a chronic disease while i was recovering, but that cant be totally accurate. When i found out about that fistula it changed me. between that, and the pain i was miserable, and took it out on the only person I really loved. they say misery loves company, but it turns out company doesnt love misery. Well thats my condensed story. I hope someone will read it, and it will help them to believe there is hope. Hang in there guys, and ladies. nobody should be denied a normal quality of life because your doctor is afraid to give you the meds that you need. I only found this forum yesterday, and in that short amount of time it has helped me a lot to not feel so alone.
I had already guessed that was going to be the diagnosis, and had read up on it, but when he confirmed it, it still sucked knowing I have a chronic disease. Regardless though I was still able to keep a positive attitude about it. I always had the "could be worse" attitude, and thats what i would tell everyone. i would even joke about it. The guys in my shop where I worked would say I had a bad asshole, and i would laugh about it. My doc had me on several meds, pentasa, prednisone, which he eventually switched to 6-mp, and remicade infusions. i also took over the counter supplements, but the point was that i felt a ton better. I felt better, hell i was a lot better, but I still wasnt real good. i still was running to the bathroom 5-10 times a day, and the big problem was, the pain was still there, but i was dealing with it. Then i got a fistula, going from my intestine out through my skin, right next to my anus, so i basically had two buttholes,and the second one hurt a lot. When I had to go to the bathroom, it would hurt so bad that there would be tears streaming down my face, i couldnt help it, and when i was done it would look like someone had slaughtered a animal in the toilet. I did get pain meds for it while i was waiting to have the surgery to fix it.
they didnt do much for the fistula, but the joint pain, and abdominal pain they worked great for that. Still though back then I was afraid of becoming addicted, and stopped using them after the surgery had healed. After that I was still able to keep a positive attitude about my disease. I pretty much had it under control. I was able to work, and I just got used to running to the bathroom 5-10 times a day. The joint pain was another story though, it had been getting worse every day, and was severely affecting my sleep. I talked to my doc about it, and about getting on pain meds for it, and he refused, telling me that I could take 8 tylenol a day for it, but of course no ibuprofen. I tried that for a little while, and may as well have been taking sugar pills. The pain got so bad, and especially at night that i would take handfuls of tylenol, and ibuprofen. I feel very fortunate not to have destroyed my liver doing that, and it was pointless anyways, they didnt help. Next I went to see a rheumatologist, and I tried everything he could think of with nothing working. After I had been seeing him for months without anything working, I finally asked for a narcotic pain med. Wow he acted like I was in a drug cartel.
So I stopped seeing him, no reason to pay someone who isnt doing a thing that helps. By this time the pain was so bad that I would be lucky to fall asleep at all. I usually was just sleeping when i got so exhausted I would basically pass out. Shortly after I stopped seeing him, I developed another fistula. This time it was between my large intestine, and my bladder, and that caused some serious problems with infections. When i went in the first time I noticed something wrong, to see my GI doc, I asked again for pain medication. Thats the time I totally lost it with him, his argument being, I would get addicted, and be on them for the rest of my life. Of course I thought that was the stupidest thing i had ever heard, since I do in fact have a chronic disease, and wht should i have to live in pain when he could help me to have a more normal quality of life. I didnt get them, but did find out that i was going to have to have another surgery to repair the fistula!!! yeah!!!
During the surgery they had to remove about six inches of my large intestine, and repair my bladder, good times. While I was in the hospital recovering from the surgery, it hit me like a ton of bricks, just what it really meant to have a chronic disease, and my positive attitude was gone, just like that. And ten days after coming home from the hospital, my wife informed me that she wanted a divorce, guess it hit her to. Needless to say I was devastated, I really loved her, and that was when my downward spiral began. I just couldnt cope with the pain anymore, physical, and mental, so i started getting oxy's off the street. It was really bad because the only ones I could find were the 80mg oxycontins. I am very lucky to be alive. i severely abused them. before I finally quit, I was taking 6 or 7 of those a day, and i was snorting them. I went cold turkey, and managed to survive it, and make it through without giving in to temptation.
I was still taking all my other meds for crohns, but i had found out, taking narcotic pain meds pretty much evened my constant runs to the bathroom. i would only go once a day, and i could sleep great, the joint pain was a lot better, and the abdominal pain was totally gone. I knew though that I couldnt just go back to buying drugs off the street. i did manage to find a very good pain management doctor, who is aware of my past problems, and monitors me closely, and of course gives me a much lower dosage. But it still works, i can easily forget that i even have crohn's i feel so well with the right pain meds. I mean just the fact that I only use the bathroom once a day is awesome, and im able to sleep like a baby. They dont totally eliminate the joint pain, but its so much better its unbelievable. I just wish i would have found him before the last surgery.
i said it hit me that i have a chronic disease while i was recovering, but that cant be totally accurate. When i found out about that fistula it changed me. between that, and the pain i was miserable, and took it out on the only person I really loved. they say misery loves company, but it turns out company doesnt love misery. Well thats my condensed story. I hope someone will read it, and it will help them to believe there is hope. Hang in there guys, and ladies. nobody should be denied a normal quality of life because your doctor is afraid to give you the meds that you need. I only found this forum yesterday, and in that short amount of time it has helped me a lot to not feel so alone.
It's a bummer of a disease! (no pun intended!)
