Hi, you can call me A.J.
Been living/dealing with crohn's since I was about 23. Started in LaCrosse, WI. I am not a writer so bare with me.
When this finally started for me. I had alcohol issues and my fiance left me with my daughter. in the middle I was experiencing IBD symptoms. but was drunk so often didn't notice how bad I actually was. But after them leaving. I sobered up and realized was not good. having had 3 rectal abscesses before that. They said "it just a random thing, you should not have any problems". But, being somewhat angered by the treatment of get me in and out without explanation. It was apparent due to my NO INSURANCE coverage. I was being fed bull. And besides that prescribing me with anti inflamatory drugs. that made it worse.
Along this cutting out some other details, I had to go to IED an internal, alcoholics program to get my license back. And due to flaring up horribly to anabuse. to those who know this. it keeps you from drinking and makes you sick if you do. I could not take it. BAD reactions hives, bleeding and so on.... I said I had three abscesses at this point. but around this time I had many more. and finally got a colonoscopy after going to a family practice doctor my family had been seeing. Should have been my first stop. years before. I am around 25 now. The colonoscopy showed that it was horrible crohn's. And I was bleeding out of my mouth and the other end. And the only pain management I could get was drinking. since alcohol is the only thing I could use to numb this pain. After being poked and prodded for a couple years and finally this colonoscopy. The man sat me down, with family next to me. Still high as a kite from pain meds. (they put me out because it hurt so bad. I have a family built in tolerance to pain meds. my doctor told me. So I got double the dose to put me out.) anyway, he said to me straight up.
"you have crohn's disease badly, and you will die by the time your 35."
My family member next to me scolded the doctor for just blurting it out with no emotion. I just sat, staring, high as a kite and shocked saying "did he reallly say I was dying?" And she took me out and took me to a nutritionist.
So far I am alive at the age of 35. But thanks only to an awesome family medicine doctor. and a fantastically kind pain management counselor, and my family. I was 25 at the time of the colonoscopy. and my family doctor and pain mgmnt doc made me a deal. since the drugs for treating crohn's was 500.00 a bottle for a month. and I had no money, insurance and no job at the time. He put me on a prescribed pain killer/treatment. After changing my diet completely, drug testing and no alcohol. It was a miracle "Methadone". I know weird, used for heroine addicts mostly. but he read that in SOME cases it can be a double helper. not to get me high. but enough to numb some pain, and slow the digestive tract. NOT A CURE AT ALL. do get that from this. was to get me by. to work and to live....sort of. Treating symptoms not the disease itself. After this I had a major surgery. double fistula repair on a re occuring absess. that kept coming back. so by this point I am 26 and had about 7 or 8 minor surgeries. and one major. Almost lost the fight to keep my rectum. But Diet, no drinking, right meds. In my case it worked. 18months later, they took the rubber bands out of my ass to make sure it healed properly. they had to keep it open but yet closed. If you don't know fistula read up on it.
But the story continues....
I was doing fine for once in years. and on methadone, still in alcohol program. and they decided to switch my follow up doctor to another. I'll call him doctor white. Anyway, he heared from my IED counselor that I am an addict and should not have pain meds. Illegally by the way. privacy laws aside. When I met him for the first time. he took my methadone away. And said "your an alcoholic right?" you can't take this, tylenol is better for you. so you can take 5000 mg a day. and you will be alright. (That by the way is a good way to kill yourself slowly) I looked at his face when he said that, and I said, "how did you know that?" He did not answer. I said, "O i see the counselor told you.... you know that is illegal right.. for him to share confidential stuff with you without my signature.?" He actually SMILED and nodded at me. Well after being in the USMC and putting on weight, lifting weights. I was not small at 6 ft and 215lbs.
I said, well, since your doing illegal things, you just took away the one thing keeping me sane. What is stopping me from beating the @$#$ out of you in this little room and just going to jail? Needless, to say his smile evaporated quickly and fear took over his face. I was 2" from his face when I said this. I said " you think this is funny?, @#$%*&% with my life?" he was scared. I said, "yes I am an alcoholic with a daughter and a family and I am fighting a disease I didn't want. and this is funny and a joke to mess with it." "If your not up to helping me then I would like to tell you to transfer me back to my family medicine doctor.....And if you get my intent nod, don't speak but nod." he nodded yes. I got up and kicked about two or three carts down the hall. Stuff flew. I was so mad with rage, pain, emotion. That people can treat one like that. RESPECT. it is top with me. I give it, I expect it in return.
Anyway.... As I left the hall I yelled at the staff and said "doctor white is a piece of @#$%". The place went silent.
I made my way down to the front office and found the complaints dept. Tears running down my face, emotion got the better of me. I am not a cryer. I walked into the offices past the receptionist, not knowing where I was going. And yelling someone get your ass out here now! I have a complaint. (today I would be arrested and tasered from fear of shootings of course) but, yelling this a woman came out and saw me. can't remember her name. she calmly said come in and sit down. I did, and by then security came and others who followed me. She told them to go away and they did. I told her what I did, and what the doctor did. She found my pain management doc, and my family doc. Fixed all the changes And I was put back on my meds that saved my life. As for the IED alcohol counselor and the doctor, they both got reprimands and permanent marks on their records for breaching my privacy and so on....*yay me" (I got my license back, and the next time I saw him, I told him thanks and remember not to screw with peoples lives next time. He did not smile or answer me back. And I said "your a real peice of @#$%, learn before you do something that can ruin someones life. I hope he has learned from that. not everyone is a pile of crap for being an addict to something.)
The problems I have had, are not limited to dealing with crohn's. But I figured out early on. PEOPLE DO NOT HAVE A DAMN CLUE! I have lost many jobs, even when I explain it. Being as personal as it gets when it comes to a disease and the areas it affects. people will never get something they cannot see. So in their eyes, you look healthy. In fact I am typing this up on a two day sick time I took off for not leaving the toilet area. I still have flare ups and issues. But I deal with it and live with it. And I would help anyone who asked for help. Because I get it and I understand......EVERYONE WITH CROHN"S IS DIFFERENT!! I really get a kick out of someone telling me, i have a cousing or friend, or sister that has it. it isn't that bad. REALLY!!!!. you just wanna smack them and say, it is for me. And most of the time it is a co worker or boss that says this stuff. I have lost about 4-5 jobs because of this. Since it can't be seen, you must be lying about it......right?
This story is kind of peiced together. and I am sure I missed a lot. but you get the plot. The best I can get on a good day, with hardly anyone who understands what I go through on a daily basis, is frustrated, angry and slightly depressed. But that is just me. I know everyone is different how it affects you. The way I start out with a new person is, what do you know about crohn's disease? And do you know everyone is different? if they answer no to those questions. I tell them, end of conversation. go get educated then we can talk more. Otherwise, it is a waste of time trying to explain it. There are different variants of Crohn's, and I found out from Mayo clinic. I have a different variant. yay me. And they wanted to poke and prod me for information. I said only if they forgive that 11,000 dollar bill.
As for me living with it, I do. It is the hardest thing trying to date someone and meet someone when I have all this going on underneath. It sucks ass. So I mainly avoid meeting a person for a relationship. I have had a few break up with me just because they can't handle it, and don't understand it. That is something I don't want to deal with. So been awhile since I even hit on a woman. What would I say "hey I got a bowel and intestinal disease and it's gross and embarrasing. wanna date?" if they say yeah, thats a match in heaven. so far no one I know of would say yes to that. lol
Well, as of today, I still take methadone 4 times a day, and diazapam for my back. No anti inflammatory meds, no asprin, or vioxx, or advil, many drugs don't agree with the guts. so I have learned from experience, for me. and I deal with the small flare ups. no more surguries. And all the muscle and weight I lost after that one major surgury, I have most of my weight back. to 190lbs. and not in shape, and not fat, just maintaining weight. Eating what I have learned to be able to eat. And take supplements for stuff a normal diet would provide.
So that for now is me. If this helps any, good, more of a vent session for me so sorry if it doesn't. and if my misery helps you understand your own. Then at least you know your not alone.
I will cnage it later if it makes no sense to me. later,
AJ
Been living/dealing with crohn's since I was about 23. Started in LaCrosse, WI. I am not a writer so bare with me.
When this finally started for me. I had alcohol issues and my fiance left me with my daughter. in the middle I was experiencing IBD symptoms. but was drunk so often didn't notice how bad I actually was. But after them leaving. I sobered up and realized was not good. having had 3 rectal abscesses before that. They said "it just a random thing, you should not have any problems". But, being somewhat angered by the treatment of get me in and out without explanation. It was apparent due to my NO INSURANCE coverage. I was being fed bull. And besides that prescribing me with anti inflamatory drugs. that made it worse.
Along this cutting out some other details, I had to go to IED an internal, alcoholics program to get my license back. And due to flaring up horribly to anabuse. to those who know this. it keeps you from drinking and makes you sick if you do. I could not take it. BAD reactions hives, bleeding and so on.... I said I had three abscesses at this point. but around this time I had many more. and finally got a colonoscopy after going to a family practice doctor my family had been seeing. Should have been my first stop. years before. I am around 25 now. The colonoscopy showed that it was horrible crohn's. And I was bleeding out of my mouth and the other end. And the only pain management I could get was drinking. since alcohol is the only thing I could use to numb this pain. After being poked and prodded for a couple years and finally this colonoscopy. The man sat me down, with family next to me. Still high as a kite from pain meds. (they put me out because it hurt so bad. I have a family built in tolerance to pain meds. my doctor told me. So I got double the dose to put me out.) anyway, he said to me straight up.
"you have crohn's disease badly, and you will die by the time your 35."
My family member next to me scolded the doctor for just blurting it out with no emotion. I just sat, staring, high as a kite and shocked saying "did he reallly say I was dying?" And she took me out and took me to a nutritionist.
So far I am alive at the age of 35. But thanks only to an awesome family medicine doctor. and a fantastically kind pain management counselor, and my family. I was 25 at the time of the colonoscopy. and my family doctor and pain mgmnt doc made me a deal. since the drugs for treating crohn's was 500.00 a bottle for a month. and I had no money, insurance and no job at the time. He put me on a prescribed pain killer/treatment. After changing my diet completely, drug testing and no alcohol. It was a miracle "Methadone". I know weird, used for heroine addicts mostly. but he read that in SOME cases it can be a double helper. not to get me high. but enough to numb some pain, and slow the digestive tract. NOT A CURE AT ALL. do get that from this. was to get me by. to work and to live....sort of. Treating symptoms not the disease itself. After this I had a major surgery. double fistula repair on a re occuring absess. that kept coming back. so by this point I am 26 and had about 7 or 8 minor surgeries. and one major. Almost lost the fight to keep my rectum. But Diet, no drinking, right meds. In my case it worked. 18months later, they took the rubber bands out of my ass to make sure it healed properly. they had to keep it open but yet closed. If you don't know fistula read up on it.
But the story continues....
I was doing fine for once in years. and on methadone, still in alcohol program. and they decided to switch my follow up doctor to another. I'll call him doctor white. Anyway, he heared from my IED counselor that I am an addict and should not have pain meds. Illegally by the way. privacy laws aside. When I met him for the first time. he took my methadone away. And said "your an alcoholic right?" you can't take this, tylenol is better for you. so you can take 5000 mg a day. and you will be alright. (That by the way is a good way to kill yourself slowly) I looked at his face when he said that, and I said, "how did you know that?" He did not answer. I said, "O i see the counselor told you.... you know that is illegal right.. for him to share confidential stuff with you without my signature.?" He actually SMILED and nodded at me. Well after being in the USMC and putting on weight, lifting weights. I was not small at 6 ft and 215lbs.
I said, well, since your doing illegal things, you just took away the one thing keeping me sane. What is stopping me from beating the @$#$ out of you in this little room and just going to jail? Needless, to say his smile evaporated quickly and fear took over his face. I was 2" from his face when I said this. I said " you think this is funny?, @#$%*&% with my life?" he was scared. I said, "yes I am an alcoholic with a daughter and a family and I am fighting a disease I didn't want. and this is funny and a joke to mess with it." "If your not up to helping me then I would like to tell you to transfer me back to my family medicine doctor.....And if you get my intent nod, don't speak but nod." he nodded yes. I got up and kicked about two or three carts down the hall. Stuff flew. I was so mad with rage, pain, emotion. That people can treat one like that. RESPECT. it is top with me. I give it, I expect it in return.
Anyway.... As I left the hall I yelled at the staff and said "doctor white is a piece of @#$%". The place went silent.
I made my way down to the front office and found the complaints dept. Tears running down my face, emotion got the better of me. I am not a cryer. I walked into the offices past the receptionist, not knowing where I was going. And yelling someone get your ass out here now! I have a complaint. (today I would be arrested and tasered from fear of shootings of course) but, yelling this a woman came out and saw me. can't remember her name. she calmly said come in and sit down. I did, and by then security came and others who followed me. She told them to go away and they did. I told her what I did, and what the doctor did. She found my pain management doc, and my family doc. Fixed all the changes And I was put back on my meds that saved my life. As for the IED alcohol counselor and the doctor, they both got reprimands and permanent marks on their records for breaching my privacy and so on....*yay me" (I got my license back, and the next time I saw him, I told him thanks and remember not to screw with peoples lives next time. He did not smile or answer me back. And I said "your a real peice of @#$%, learn before you do something that can ruin someones life. I hope he has learned from that. not everyone is a pile of crap for being an addict to something.)
The problems I have had, are not limited to dealing with crohn's. But I figured out early on. PEOPLE DO NOT HAVE A DAMN CLUE! I have lost many jobs, even when I explain it. Being as personal as it gets when it comes to a disease and the areas it affects. people will never get something they cannot see. So in their eyes, you look healthy. In fact I am typing this up on a two day sick time I took off for not leaving the toilet area. I still have flare ups and issues. But I deal with it and live with it. And I would help anyone who asked for help. Because I get it and I understand......EVERYONE WITH CROHN"S IS DIFFERENT!! I really get a kick out of someone telling me, i have a cousing or friend, or sister that has it. it isn't that bad. REALLY!!!!. you just wanna smack them and say, it is for me. And most of the time it is a co worker or boss that says this stuff. I have lost about 4-5 jobs because of this. Since it can't be seen, you must be lying about it......right?
This story is kind of peiced together. and I am sure I missed a lot. but you get the plot. The best I can get on a good day, with hardly anyone who understands what I go through on a daily basis, is frustrated, angry and slightly depressed. But that is just me. I know everyone is different how it affects you. The way I start out with a new person is, what do you know about crohn's disease? And do you know everyone is different? if they answer no to those questions. I tell them, end of conversation. go get educated then we can talk more. Otherwise, it is a waste of time trying to explain it. There are different variants of Crohn's, and I found out from Mayo clinic. I have a different variant. yay me. And they wanted to poke and prod me for information. I said only if they forgive that 11,000 dollar bill.
As for me living with it, I do. It is the hardest thing trying to date someone and meet someone when I have all this going on underneath. It sucks ass. So I mainly avoid meeting a person for a relationship. I have had a few break up with me just because they can't handle it, and don't understand it. That is something I don't want to deal with. So been awhile since I even hit on a woman. What would I say "hey I got a bowel and intestinal disease and it's gross and embarrasing. wanna date?" if they say yeah, thats a match in heaven. so far no one I know of would say yes to that. lol
Well, as of today, I still take methadone 4 times a day, and diazapam for my back. No anti inflammatory meds, no asprin, or vioxx, or advil, many drugs don't agree with the guts. so I have learned from experience, for me. and I deal with the small flare ups. no more surguries. And all the muscle and weight I lost after that one major surgury, I have most of my weight back. to 190lbs. and not in shape, and not fat, just maintaining weight. Eating what I have learned to be able to eat. And take supplements for stuff a normal diet would provide.
So that for now is me. If this helps any, good, more of a vent session for me so sorry if it doesn't. and if my misery helps you understand your own. Then at least you know your not alone.
I will cnage it later if it makes no sense to me. later,
AJ
Sorry for the late reply.