- Joined
- Apr 1, 2018
- Messages
- 108
6 Rounds of C-Diff, begging for an FTM, fecal transplant, 85% effective. One doctor was ready to refer me to get one. Then he left. His replacement telling me, "Not right now" or, "Your are not healthy enough," or "There is a rouge bacteria loose." All of it bunk and just putting me off, since he would never do this, even after six times and an infectious disease doctor tried to get the oral method he uses approved by me insurance, He told me to just talk to my GI and I will easily get the colonoscopy method easily approved, except my doctor declined, even though my wonderful LPN, fought with him, that I over-heard.
Then I developed what I though was a fantom hemorrhoid that only appeared during bowel movements. I tried to tell him this, but since my prolapsed hemorrhoids were causing so much pain, and I complained about them to deaf ears, "Again, there is nothing we can do about hemorrhoids until remission." So whatever I said about the increasing pain was ignored. Even when I said, "My sphincter only the width of a nickel, "The pain is so bad I am passing out," or "My exploding fantom hemorrhoid was the size of a grape tomato and then after my uber painful bowel movements, it d disappeared." Any GI doctor who would listen, knows hemorrhoids don't bulge out with bowel movements and they don't just disappear. For seven months, I went through this hell, passing out nightly on the toilet with, "There is nothing we can do, ringing in my ears." I not knowing and believing the idiot's remarks went to the emergency room and admitted for Crohn's attacks, with ER docs pointing out the strange highly visible circle in my ever swelling and damaging rectum. I told them it was no big deal and just a hemorrhoid that my GI knows all about.
That was just a perpetuation of the idiot who not once did a physical exam, not matter how much I complained, he was just annoyed with me until I was blessed by a tele-visit because of this awful plague we are going through. A few nights before the tele-appointment, had passed out on pain, which was typical after it taking for to 5 rounds of, pushing out my two large prolapsed hemorrhoids through a nickel wide tunnel and my fantom hemorrhoids swelling out, stressing out my external hemorrhoids, and the pain so bad that I passed out. This time I passed out, fell off the throne and hit my head on the tub. My prolapsed hemorrhoids swinging free something started to bleed. Hours later, I was awoken by my dog, my dad was still fast asleep and my friend who lets the dog out in the morning was gone for that day. I knew my dog tried to find them both by all of the bloody paw prints around the house. She awoke me crying and licking my face. It took my likely 30 minutes to gather myself and put the prolapse roids back in and pack a bunch of gauze in my butt. I cleaned up what was likely a pint of blood, soaking the bath mats and puddling under me. After I stopped my bleeding I cleaned up the mess all around the house and used the bath and shower to clean all of the leftover fecal and blood on my body. I changed the gauze and went to with an ice pack. I effectively stopped the bleeding. In reality, I should have called 911, but with, "There is nothing we can do," ringing in my ears I had lost hope. If I my dog didn't bring me back to consciousness, since my dad woke up and went to a meeting, it would have been five more hours before anyone would find me and by then I would have likely bled out and never woken up. My wonderful dog, Charlotte or Charlie as we call her, saved my life, because my ex GI ignored my pain and suffering for 7 months, most of which I don't remember, because after my long nights Iw as a walking zombie.
My brother died a year ago at age 54 from a heart attack, my sister will loose her battle with cancer in two weeks to tow months in Virginia. I need to be healthy enough to say goodbye when her clock is nearly run out. My doctor's negligence would have killed one of his two remaining children just itime for him to watch his last living child die. I am more than angry, and trying to keep in check, because anger and tension are terrible for Crohns.
In the tele-appointment, I opened up with, "You don't care about me at all." In his house and not distracted by the office, he gave me full attention. When I was describing my nightly ritual, he got very exacerbated and nearly screamed at me, "Why the HELL. haven't you seen a surgeon?" I told him, "Because you haven't been able to tell you, because you always shut me off when I try." He got the message and told me he would refer me to a surgeon right way. His notes from that appointment say, "Michael is in a lot of pain and reluctantly, I am sending him to a surgeon.
When I got to the surgeon, he said I have so much damage, that a temporary ileostomy was my best bet. He noticed, just looking for less than a minute, that I had a fistula that was pushing out on my anal wall. One physical exam by my ex-GI would have saved me three ileostomy, the ileostomy, a revision when it came loose and kinked my may small intestine, and a revision or compete removal of the rectum and colon if it can't heal enough. Right before my revision, My ex-GI, did a colonoscopy, endoscopy plus additionally going threw my stoma, he got a rare look at what is usually hard to see. He told me later, "You're colon is a complete mess!" I should have said, "After six rounds with C-Diff and ignoring a damaging fistula, "No **** Sherlock." I was juiced up on morphine and barely awake, I just stared at him.
Later when I had an issue with my stoma, I called the on-call doctor and he said they call me Mr. Complicated, because so much damage from a fistula. 7 months of ignoring me and my pain, I am lucky to find a surgeon, when in less than 30 days from his initial examinations, where he said to ignore it for 30 or more days would likely cause so much damage, I would have to lose all of my lower plumbing.
When went to my followup appointment at the doctor's office, I was told there was a little infection in my colon, but not to worry about it now.
I am having a lot of output, with blood and pieces of flesh out of my colon, not hooked up. My new GI is testing for C-diff and in the next to weeks, he is going all through my medical records and creating a treatment program. He is close friends and has worked with my amazing, Crohn's expert support doctor, so I am finally in good hands.
C-diff can live in a body for 18 to 24 months before waking up again to wreak havoc. That little infection was likely dormant C-Diff that is they now wreaking havoc in my colon; but since it is unconnected it is not as bad. But I have gone 14 times in the last 12 hours out of my unhooked colon and I feel like ****, so I am falling a prt, loosing all my fluids, running temp, so I am now going to call my new docs on call line and likely going to a new hospital tonight.
Switching docs and wonderful nurse and an amazing small hospital after three years feels like when I got divorced. I feel awful, scared and unsure, just like when left my ex and daughter in New York and drove home to Colorado. On to my 139'th day in a hospital since diagnosis, October 2017
I contend that misdiagnosis is a primary cause of the 75% chance Crohn's patients will end up getting surgery. I know it is why I have at least one more surgery to reconnect or take out my lower plumbing, which will result in lawsuit for life changing injury caused by a doctor, not doin their job.
Then I developed what I though was a fantom hemorrhoid that only appeared during bowel movements. I tried to tell him this, but since my prolapsed hemorrhoids were causing so much pain, and I complained about them to deaf ears, "Again, there is nothing we can do about hemorrhoids until remission." So whatever I said about the increasing pain was ignored. Even when I said, "My sphincter only the width of a nickel, "The pain is so bad I am passing out," or "My exploding fantom hemorrhoid was the size of a grape tomato and then after my uber painful bowel movements, it d disappeared." Any GI doctor who would listen, knows hemorrhoids don't bulge out with bowel movements and they don't just disappear. For seven months, I went through this hell, passing out nightly on the toilet with, "There is nothing we can do, ringing in my ears." I not knowing and believing the idiot's remarks went to the emergency room and admitted for Crohn's attacks, with ER docs pointing out the strange highly visible circle in my ever swelling and damaging rectum. I told them it was no big deal and just a hemorrhoid that my GI knows all about.
That was just a perpetuation of the idiot who not once did a physical exam, not matter how much I complained, he was just annoyed with me until I was blessed by a tele-visit because of this awful plague we are going through. A few nights before the tele-appointment, had passed out on pain, which was typical after it taking for to 5 rounds of, pushing out my two large prolapsed hemorrhoids through a nickel wide tunnel and my fantom hemorrhoids swelling out, stressing out my external hemorrhoids, and the pain so bad that I passed out. This time I passed out, fell off the throne and hit my head on the tub. My prolapsed hemorrhoids swinging free something started to bleed. Hours later, I was awoken by my dog, my dad was still fast asleep and my friend who lets the dog out in the morning was gone for that day. I knew my dog tried to find them both by all of the bloody paw prints around the house. She awoke me crying and licking my face. It took my likely 30 minutes to gather myself and put the prolapse roids back in and pack a bunch of gauze in my butt. I cleaned up what was likely a pint of blood, soaking the bath mats and puddling under me. After I stopped my bleeding I cleaned up the mess all around the house and used the bath and shower to clean all of the leftover fecal and blood on my body. I changed the gauze and went to with an ice pack. I effectively stopped the bleeding. In reality, I should have called 911, but with, "There is nothing we can do," ringing in my ears I had lost hope. If I my dog didn't bring me back to consciousness, since my dad woke up and went to a meeting, it would have been five more hours before anyone would find me and by then I would have likely bled out and never woken up. My wonderful dog, Charlotte or Charlie as we call her, saved my life, because my ex GI ignored my pain and suffering for 7 months, most of which I don't remember, because after my long nights Iw as a walking zombie.
My brother died a year ago at age 54 from a heart attack, my sister will loose her battle with cancer in two weeks to tow months in Virginia. I need to be healthy enough to say goodbye when her clock is nearly run out. My doctor's negligence would have killed one of his two remaining children just itime for him to watch his last living child die. I am more than angry, and trying to keep in check, because anger and tension are terrible for Crohns.
In the tele-appointment, I opened up with, "You don't care about me at all." In his house and not distracted by the office, he gave me full attention. When I was describing my nightly ritual, he got very exacerbated and nearly screamed at me, "Why the HELL. haven't you seen a surgeon?" I told him, "Because you haven't been able to tell you, because you always shut me off when I try." He got the message and told me he would refer me to a surgeon right way. His notes from that appointment say, "Michael is in a lot of pain and reluctantly, I am sending him to a surgeon.
When I got to the surgeon, he said I have so much damage, that a temporary ileostomy was my best bet. He noticed, just looking for less than a minute, that I had a fistula that was pushing out on my anal wall. One physical exam by my ex-GI would have saved me three ileostomy, the ileostomy, a revision when it came loose and kinked my may small intestine, and a revision or compete removal of the rectum and colon if it can't heal enough. Right before my revision, My ex-GI, did a colonoscopy, endoscopy plus additionally going threw my stoma, he got a rare look at what is usually hard to see. He told me later, "You're colon is a complete mess!" I should have said, "After six rounds with C-Diff and ignoring a damaging fistula, "No **** Sherlock." I was juiced up on morphine and barely awake, I just stared at him.
Later when I had an issue with my stoma, I called the on-call doctor and he said they call me Mr. Complicated, because so much damage from a fistula. 7 months of ignoring me and my pain, I am lucky to find a surgeon, when in less than 30 days from his initial examinations, where he said to ignore it for 30 or more days would likely cause so much damage, I would have to lose all of my lower plumbing.
When went to my followup appointment at the doctor's office, I was told there was a little infection in my colon, but not to worry about it now.
I am having a lot of output, with blood and pieces of flesh out of my colon, not hooked up. My new GI is testing for C-diff and in the next to weeks, he is going all through my medical records and creating a treatment program. He is close friends and has worked with my amazing, Crohn's expert support doctor, so I am finally in good hands.
C-diff can live in a body for 18 to 24 months before waking up again to wreak havoc. That little infection was likely dormant C-Diff that is they now wreaking havoc in my colon; but since it is unconnected it is not as bad. But I have gone 14 times in the last 12 hours out of my unhooked colon and I feel like ****, so I am falling a prt, loosing all my fluids, running temp, so I am now going to call my new docs on call line and likely going to a new hospital tonight.
Switching docs and wonderful nurse and an amazing small hospital after three years feels like when I got divorced. I feel awful, scared and unsure, just like when left my ex and daughter in New York and drove home to Colorado. On to my 139'th day in a hospital since diagnosis, October 2017
I contend that misdiagnosis is a primary cause of the 75% chance Crohn's patients will end up getting surgery. I know it is why I have at least one more surgery to reconnect or take out my lower plumbing, which will result in lawsuit for life changing injury caused by a doctor, not doin their job.
