decision to make....HELP!! 
Hey guys,
Its been a long time since I've visited this forum, so I will attempt to reintroduce myself. My name is Tom, and I've had Crohns Disease for the last 13 years now.
When I originally signed up for this website, I lived in a small town called Warsaw, Indiana with my wife Susan at the time, with a job at the local factory. Along with Crohns, I was born with a condition called Congenital Rubella Syndrome. It means in lamen terms "my mom had a form of measles called Rubella while she was pregnant with me". Ya the MMR vaccine could have prevented that, but mom became pregnant with me back in 1969, the year the MMR vaccine was invented, so it wasn't widely available until after she became pregnant with me, during the widespread Rubella epidemic.
Normally, CRS causes the newborn to be blind, deaf, and mentally retarded, but like everything else, CRS affects everyone differently depending upon how severe the pregnant mother got the Rubella while pregnant. My mom didn't even know she had Rubella, thats how mild she had it, until the day I was born... I mean, she did know, but didn't have the high fever or bumps like most people who get Rubella have.
The CRS, as its commonly called, left me completely blind at birth. I just recently found this out, but the CRS also left me with a mild form of retardation called Autism. I have various social issues, especially in explaining things to my doctor. I do fine in writing, but socially as well as verbal communication I have issues. I never knew it because I was never diagnosed with anything specifically, until I saw a psychologist after my GI in Fort Wayne dismissed me as a patient. So he tested me, and confirmed the diagnosis. I have a 70 IQ he tells me, and I'm not aware of the symptoms of my own diagnosis, so when I get upset about stuff, half the time I don't remember doing it the next day, so what I notice is lack of memory retention, sometimes I think I have altimers at times, hehe, but it goes much deeper then all that apparently.
Anyway, since I signed up for this site, I moved back to Ft Wayne Indiana (my original home town) after finalizing a divorce in September 2008, and loosing my job a year before that, and am living solely on disability right now. I put my house up for sale in July 2008, a month after my wife left me for another guy, and the house finally sold just before thanksgiving of 2008, so I moved back to Fort Wayne just before thanksgiving of last year basically. Living alone ever since, I don't even have a girlfriend, just a friend, or anybody. Emotionally I'm ok with all that, but being blind and living with crohns on top of that makes living more difficult without help, ya know?
Here in Ft Wayne, I'm living in an apartment complex that is half government subsidized, half not, and because there are no more government slots available in this complex, until someone moves out, I am paying $545 a month right now just on my rent alone, and since I only get $800 on disability, that doesn't leave much for food or anything else, but luckily I have medicare and Medicaid, but not food stamps, so I still struggle with money left for food, transportation, and such. Since I live 1/2 mile away from the nearest CityLink bus stop, its difficult just getting groceries even, but if I somehow can walk that 1/2 mile, the bus is FREE for me to go anywhere I need to go in this town, which is a big plus, thats why I moved back here.
Anyway, since my GI/surgeon team in Ft Wayne dismissed me as a patient, I was seeing a GI/surgeon team in South Bend, but they referred me to a specialist in Indianapolis, at the IU Medical Center there in Indy.
He did a detailed scope on me, and discovered I have a bad illeum, 9 soars in my large intestine, and several Fistulas in the Rectum area. Some of those I knew about from the soars around my butt crack area that I've fussed with over the years, but apparently there are more up inside the lower large intestine and rectum area, he showed me pictures..
So, they are giving me a choice: I can either
1. have an illeostomy
2. use higher dosages of Remicade
its my choice he says. I don't know what to do, I need some help deciding
First, I was on Remicade before about 5 years ago, 5cc's for 12 months, every 6 weeks. The doctor in Indy asked me if the Remicade worked? I said "well I noticed weight gain". honestly that was all I noticed, so he says "does that mean it helped, 10%, 20%, what?" I don't know, would weight gain count as "helping"? I mean, I gained from 120 to around 190 within that 12 month period. that is alot of weight to gain, so I figured that was a good sign, right? I didn't notice anything other then that, but ya know I'm only a patient, I can't see my insides. I've never had diarrhea or constipation as long as I've had Crohns. I mean I did until I improved my diet, now I never experience diarrhea or constipation from crohns, so I can't tell by that either, ya know? Either that, or the imuran is working against the diarrhea and constipation problem, that is a possibility I suppose.
Personally, I keep thinking, an illeostomy should be my "last" option, right?
I mean, sure I may have a diseased illeum, and a diseased Colon, but I never notice any problems with that. I was thinking with a bad illeum, I may have a vitamin B12 deficiency, but they didn't test for that so I don't know, but I am guessing I do if I have a diseased ileum, wouldn't you think? If thats the case, then whats wrong with B12 shots?
The only real problem I'm having, is with the Fistulas.. Granted Remicade or humira may be a shot in the dark, but if you guys were me, wouldn't you want to try higher shots of Remicade, before an illeostomy?
...not that an illeostomy is bad, its just that, wouldn't you consider surgery as the last option? Thats why the South Bend doctor sent me there. They thought I couldn't put on the ostomy bags being blind, or would struggle with them, but the doctor in Indy doesn't agree, he believes I would be able to handle the bags just fine, which I don't know one way or the other. They showed me what the bags look like, I talked to an ostomy nurse about it at St Joe and everything, but I was thinking the ostomy bags were placed lower down on your leg, not way up in the upper center of your chest, so knowing that now makes me NERVOUS, because an illeostomy is permanent, no reversal option if for some reason I don't like it, so wouldn't that make you a little nervous?
I just don't know what to do....any helpful suggestions? I've been praying about it, hoping God will lead me in the right direction, but I am still very confused, I don't know what to do.... anyone have any suggestions?
Tom
Hey guys,
Its been a long time since I've visited this forum, so I will attempt to reintroduce myself. My name is Tom, and I've had Crohns Disease for the last 13 years now.
When I originally signed up for this website, I lived in a small town called Warsaw, Indiana with my wife Susan at the time, with a job at the local factory. Along with Crohns, I was born with a condition called Congenital Rubella Syndrome. It means in lamen terms "my mom had a form of measles called Rubella while she was pregnant with me". Ya the MMR vaccine could have prevented that, but mom became pregnant with me back in 1969, the year the MMR vaccine was invented, so it wasn't widely available until after she became pregnant with me, during the widespread Rubella epidemic.
Normally, CRS causes the newborn to be blind, deaf, and mentally retarded, but like everything else, CRS affects everyone differently depending upon how severe the pregnant mother got the Rubella while pregnant. My mom didn't even know she had Rubella, thats how mild she had it, until the day I was born... I mean, she did know, but didn't have the high fever or bumps like most people who get Rubella have.
The CRS, as its commonly called, left me completely blind at birth. I just recently found this out, but the CRS also left me with a mild form of retardation called Autism. I have various social issues, especially in explaining things to my doctor. I do fine in writing, but socially as well as verbal communication I have issues. I never knew it because I was never diagnosed with anything specifically, until I saw a psychologist after my GI in Fort Wayne dismissed me as a patient. So he tested me, and confirmed the diagnosis. I have a 70 IQ he tells me, and I'm not aware of the symptoms of my own diagnosis, so when I get upset about stuff, half the time I don't remember doing it the next day, so what I notice is lack of memory retention, sometimes I think I have altimers at times, hehe, but it goes much deeper then all that apparently.
Anyway, since I signed up for this site, I moved back to Ft Wayne Indiana (my original home town) after finalizing a divorce in September 2008, and loosing my job a year before that, and am living solely on disability right now. I put my house up for sale in July 2008, a month after my wife left me for another guy, and the house finally sold just before thanksgiving of 2008, so I moved back to Fort Wayne just before thanksgiving of last year basically. Living alone ever since, I don't even have a girlfriend, just a friend, or anybody. Emotionally I'm ok with all that, but being blind and living with crohns on top of that makes living more difficult without help, ya know?
Here in Ft Wayne, I'm living in an apartment complex that is half government subsidized, half not, and because there are no more government slots available in this complex, until someone moves out, I am paying $545 a month right now just on my rent alone, and since I only get $800 on disability, that doesn't leave much for food or anything else, but luckily I have medicare and Medicaid, but not food stamps, so I still struggle with money left for food, transportation, and such. Since I live 1/2 mile away from the nearest CityLink bus stop, its difficult just getting groceries even, but if I somehow can walk that 1/2 mile, the bus is FREE for me to go anywhere I need to go in this town, which is a big plus, thats why I moved back here.
Anyway, since my GI/surgeon team in Ft Wayne dismissed me as a patient, I was seeing a GI/surgeon team in South Bend, but they referred me to a specialist in Indianapolis, at the IU Medical Center there in Indy.
He did a detailed scope on me, and discovered I have a bad illeum, 9 soars in my large intestine, and several Fistulas in the Rectum area. Some of those I knew about from the soars around my butt crack area that I've fussed with over the years, but apparently there are more up inside the lower large intestine and rectum area, he showed me pictures..
So, they are giving me a choice: I can either
1. have an illeostomy
2. use higher dosages of Remicade
its my choice he says. I don't know what to do, I need some help deciding
First, I was on Remicade before about 5 years ago, 5cc's for 12 months, every 6 weeks. The doctor in Indy asked me if the Remicade worked? I said "well I noticed weight gain". honestly that was all I noticed, so he says "does that mean it helped, 10%, 20%, what?" I don't know, would weight gain count as "helping"? I mean, I gained from 120 to around 190 within that 12 month period. that is alot of weight to gain, so I figured that was a good sign, right? I didn't notice anything other then that, but ya know I'm only a patient, I can't see my insides. I've never had diarrhea or constipation as long as I've had Crohns. I mean I did until I improved my diet, now I never experience diarrhea or constipation from crohns, so I can't tell by that either, ya know? Either that, or the imuran is working against the diarrhea and constipation problem, that is a possibility I suppose.
Personally, I keep thinking, an illeostomy should be my "last" option, right?
I mean, sure I may have a diseased illeum, and a diseased Colon, but I never notice any problems with that. I was thinking with a bad illeum, I may have a vitamin B12 deficiency, but they didn't test for that so I don't know, but I am guessing I do if I have a diseased ileum, wouldn't you think? If thats the case, then whats wrong with B12 shots?
The only real problem I'm having, is with the Fistulas.. Granted Remicade or humira may be a shot in the dark, but if you guys were me, wouldn't you want to try higher shots of Remicade, before an illeostomy?
...not that an illeostomy is bad, its just that, wouldn't you consider surgery as the last option? Thats why the South Bend doctor sent me there. They thought I couldn't put on the ostomy bags being blind, or would struggle with them, but the doctor in Indy doesn't agree, he believes I would be able to handle the bags just fine, which I don't know one way or the other. They showed me what the bags look like, I talked to an ostomy nurse about it at St Joe and everything, but I was thinking the ostomy bags were placed lower down on your leg, not way up in the upper center of your chest, so knowing that now makes me NERVOUS, because an illeostomy is permanent, no reversal option if for some reason I don't like it, so wouldn't that make you a little nervous?
I just don't know what to do....any helpful suggestions? I've been praying about it, hoping God will lead me in the right direction, but I am still very confused, I don't know what to do.... anyone have any suggestions?
Tom
