Thats what I had when I was diagnosed over 30 years ago. I was 20 years old and supposed to be in the prime of my life, invincible, etc. Nothing could stop me, right? Wrong!
In the course of a few weeks I went from healthy to very ill. My bowels weren't working right, and eating caused me so much pain that I became scared to eat. Paradox: knowing you have to eat to survive, being afraid to do so. Sort of like understanding an anorexic in some bizarre way.
I was in denial. " I'll be okay in a couple of days" was my typical response. But the weight was coming off quickly, and those who knew me noticed that something was terribly wrong.
Anyway I was talked in to seeing a doctor, who literally took one look at me and told me I needed a hospital. So, I went. No insurance.
Diagnosis: toxic megacolon, probable underlying cancer, probable IBD. What does all that mean, I wondered? I was terrified.
I had tests done, cololoscopy, upper and lower GIs, and more. They shut me off from eating and put me on hyperalimentation, a heavy duty IV system that nourishes the body through the veins. They use the subclavian vein, just under the collarbone for the catheter, and the tip of the catheter is placed just above the heart in supeiprior vena cava, because there is so much sugar in the solution, it will destroy the small veins of the forearm. 30 years ago the stuff was $600 a bottle, and I was on 3 a day. I wonder how much it is now?
Anyway they soon had a Crohn's diagnosis, but still informed me a secondary cancer was about 50/50.
They told me my colon was destroyed already, dead, basically rotting inside of me, which was poisoning my entire body. I was on megadoses of IV antibiotics to try and kill the body sepsis off. I needed my colon removed, and an ileostomy. I didn't know anything about this, barely understood what they were saying. And so I told them no way, I would be a freak with a bag. Not a chance. For a few days this went on, you need this; no way...
On a friday afternoon, the doctor taking care of me stopped by my room late in the afternoon. He again told me I need it done, it was the only option. when I again said no, he used a great tactic on me. I remember this like it was last week, he looked at me squarely in the eyes and told me very quietly, " you either have this operation done, or your family will be burying you in a few weeks. Have a good weekend." And he left me to stew in that for 3 days. It was a brilliant move.
When he came back the next week, I told him okay. But first they had to straighten out the sepsis, which took them another 2 weeks. I don't remember much really, and I've since been told the reason is that everything inside of me was so messed up, poisoned from my colon, even my cerebral spinal fluid and the chemistry of my brain was messed up enough so that my brain wasn't functioning right, thus the poor memory. Probably just as well.
The surgery went okay, though my rectal cavity didn't heal. i went back in a years later for 2 more weeks while they repaired it. I had abscesses too, very painful.
30 years of life passed. At first things were ackward, but more or less I got used to it, though to this day I remain very shy and secretive about who I tell. i am not sure why, because I never did get a bad reaction. I ate normally, salads, raw fruit and vegetables, all I wanted. I found out eggrolls were not a good idea, from the cabbage. i found out not to eat a few handfuls of dry, roasted peanuts and then soon after eat steamed asparagus for dinner. Both led to blockages that were flushed out with saline.
Interestingly, the pathologist who looked at my colon was insistant that I had UC, while the gastroenterologist insisted it was CD.
But it came back finally, just a few years ago. I now have a fistula right beside my stoma, literally 1/8th inch away. They both drain in to the same pouch. I am still learning to adapt, new diet limitations, no more regular salads (though I do have a bit of it here and there) and dealing with the fistula. I've looked at photos of fistulas on google, mine is really big compared to those! And yes, feces dishcharges through it routinely.
As I type this, i am in day 3 of recovery from an abscess that was apparently part of the same fistula. If you've had one, I don't need to describe the pain. But it is a carbon copy in all apparent ways to the abscess that formed my fistula, a few years ago, same place, same treatment which has quickly knocked it out. Yesterday I couldn't barely move because I was so sick and from the pain, today things are almost back to normal. Cipro and Flagyl together is the remedy for me. The 2 together can make you pretty green, but wow do they work, and fast!
I have a great doctor who isn't yet in the directory, she is at the Lahey Clinic in Burlington Massachusetts. I will be adding her to your directory. All she deals with is Crohn's, nothing else.
Can't think of anything else to add really. On most days, my cup is half full. I realize many suffer much more so than I do, that over all I have a pretty good life. I am in daily pain with my fistula, and it has caused some significant skin issues around my stoma which also hurt, sometimes a lot. I've also been the victim of a heart attack, the recipient of a quad bypass, and a tefelon valve. That was 10 years ago. I coded a few times, and why I am still here at all is a mystery to me. The best advice I can give, remember there is always someone else far worse off than you are, keep your cup half full.
In the course of a few weeks I went from healthy to very ill. My bowels weren't working right, and eating caused me so much pain that I became scared to eat. Paradox: knowing you have to eat to survive, being afraid to do so. Sort of like understanding an anorexic in some bizarre way.
I was in denial. " I'll be okay in a couple of days" was my typical response. But the weight was coming off quickly, and those who knew me noticed that something was terribly wrong.
Anyway I was talked in to seeing a doctor, who literally took one look at me and told me I needed a hospital. So, I went. No insurance.
Diagnosis: toxic megacolon, probable underlying cancer, probable IBD. What does all that mean, I wondered? I was terrified.
I had tests done, cololoscopy, upper and lower GIs, and more. They shut me off from eating and put me on hyperalimentation, a heavy duty IV system that nourishes the body through the veins. They use the subclavian vein, just under the collarbone for the catheter, and the tip of the catheter is placed just above the heart in supeiprior vena cava, because there is so much sugar in the solution, it will destroy the small veins of the forearm. 30 years ago the stuff was $600 a bottle, and I was on 3 a day. I wonder how much it is now?
Anyway they soon had a Crohn's diagnosis, but still informed me a secondary cancer was about 50/50.
They told me my colon was destroyed already, dead, basically rotting inside of me, which was poisoning my entire body. I was on megadoses of IV antibiotics to try and kill the body sepsis off. I needed my colon removed, and an ileostomy. I didn't know anything about this, barely understood what they were saying. And so I told them no way, I would be a freak with a bag. Not a chance. For a few days this went on, you need this; no way...
On a friday afternoon, the doctor taking care of me stopped by my room late in the afternoon. He again told me I need it done, it was the only option. when I again said no, he used a great tactic on me. I remember this like it was last week, he looked at me squarely in the eyes and told me very quietly, " you either have this operation done, or your family will be burying you in a few weeks. Have a good weekend." And he left me to stew in that for 3 days. It was a brilliant move.
When he came back the next week, I told him okay. But first they had to straighten out the sepsis, which took them another 2 weeks. I don't remember much really, and I've since been told the reason is that everything inside of me was so messed up, poisoned from my colon, even my cerebral spinal fluid and the chemistry of my brain was messed up enough so that my brain wasn't functioning right, thus the poor memory. Probably just as well.
The surgery went okay, though my rectal cavity didn't heal. i went back in a years later for 2 more weeks while they repaired it. I had abscesses too, very painful.
30 years of life passed. At first things were ackward, but more or less I got used to it, though to this day I remain very shy and secretive about who I tell. i am not sure why, because I never did get a bad reaction. I ate normally, salads, raw fruit and vegetables, all I wanted. I found out eggrolls were not a good idea, from the cabbage. i found out not to eat a few handfuls of dry, roasted peanuts and then soon after eat steamed asparagus for dinner. Both led to blockages that were flushed out with saline.
Interestingly, the pathologist who looked at my colon was insistant that I had UC, while the gastroenterologist insisted it was CD.
But it came back finally, just a few years ago. I now have a fistula right beside my stoma, literally 1/8th inch away. They both drain in to the same pouch. I am still learning to adapt, new diet limitations, no more regular salads (though I do have a bit of it here and there) and dealing with the fistula. I've looked at photos of fistulas on google, mine is really big compared to those! And yes, feces dishcharges through it routinely.
As I type this, i am in day 3 of recovery from an abscess that was apparently part of the same fistula. If you've had one, I don't need to describe the pain. But it is a carbon copy in all apparent ways to the abscess that formed my fistula, a few years ago, same place, same treatment which has quickly knocked it out. Yesterday I couldn't barely move because I was so sick and from the pain, today things are almost back to normal. Cipro and Flagyl together is the remedy for me. The 2 together can make you pretty green, but wow do they work, and fast!
I have a great doctor who isn't yet in the directory, she is at the Lahey Clinic in Burlington Massachusetts. I will be adding her to your directory. All she deals with is Crohn's, nothing else.
Can't think of anything else to add really. On most days, my cup is half full. I realize many suffer much more so than I do, that over all I have a pretty good life. I am in daily pain with my fistula, and it has caused some significant skin issues around my stoma which also hurt, sometimes a lot. I've also been the victim of a heart attack, the recipient of a quad bypass, and a tefelon valve. That was 10 years ago. I coded a few times, and why I am still here at all is a mystery to me. The best advice I can give, remember there is always someone else far worse off than you are, keep your cup half full.
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