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Doctors screwed me over

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 Shit 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 shit, 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.
... Damn, I coulda written a lot of that earlier this year.

I know it sounds a bit trite, but things will get better.

Some of these health care providers have ego issues, and that's that

I'm also havingmany issues with the medical "professionals" this year

I have learned to speak plainly and clearly, and explain what my expectations are as far as the care I expect to receive.
I don;t want to sound like an ass, or uncaring, but nothing good comes from losing your religion

I know

I did it earlier this year

Took months to get some semblance of calm back

Document ing thinmgs using email is one sure fire way to flip the script, as you do have many resources available to you they will NOT tell you about, and if you have documented your requests, they've got very little wiggle room when administration gets involved

Their are social workers asigned to many hospital systems, as well as mental health resources available to folks in need
I really wish I would have worked with them sooner, as I too had many things fall thru the cracks, and it led to things progressing way beyond where they would have if people had just paid attention.

I know shite looks bleak, but when I was feeling down and going thru an ileo colonoscopy at the height of the pandemic bullshit,(only three of us in the icu that day) I met a man who was stage 4 pancreatic, and all he wanted to do was make it to crhistmas so he could see his grand and great grand children

kinda puts things in perspective

I'm located in Colorado
Please feel free to send me a pm with your contact info, and I'd be happy to speak with you about your situation, or help anyway I can
Theres time all of us could use an advocate, and we can always use a friend that knows how ugly shit can get on the medical side

... only one request

please, take some time to sit and count your blessings first

Sounds like you have an awesome dog,
The weathers going to be good today (bit breezy) spend some time outside with her
Anytime my dog has a good day, I seem to get just a tiny bit better


sorry this is a bit of a mess, got a busy day ahead and I just wanted to reach out to you and tell you that you are NOT alone
Thank you. I finally got a great GI doctor who is part of the team my support doctor is on. I know now, I should have stood up to the fool doctor and walk out, since my life nearly ended due to his complacency and ignorance. Yes, my dog is awesome. When she was only 4 months old, my mom fell down on the back porch, she was slipping into dementia. Charlie, ran into the house and went to the back room where my dad was and threw a fit until my dad followed her to my mom. Two lives saved and a wonderful, smart, kind and. obedient dog.

I think the stat that 75% of Crohn's patients get surgery should be broken down on the percentage who did not get the proper care that caused surgeries, like me.

Cheers and Thank You,
Wow - that is a grizzly story. I've dealt with my own round of incompetent doctors since my insurance company was sending me exclusively to people with zero gastroenterology experience for months on end. There is nothing worse than being in pain and staring at the face of a physician who has no idea of what you are describing. FINALLY -- after months of more hospital stays and harassing the insurance company within the bounds of the law, they gave in and I will be able to get into Cedars Sinai Gastro department here in LA. I have a couple of other issues that complicate the sh*t out of my Crohn's (pardon the pun) and truth is, I'm very nervous about these next visits. It's never good news and it grinds you down emotionally. Anyway - hang in there the best you can. Watch as many stupid funny movies as possible and don't be afraid to break something in your house for the fun of it. I smashed a vase in the backyard not long ago. Actually felt good to do so. So sorry about your brother and sister, too. 2020 blows!
I'm a Foodie too. I cook when I feel good enough, making delectables for my dad and friend that live with and for my great neighbors that support and care about us. In the hospital, I food programs, planning a party to celebrate intestinal fortitude, which I have yet to achieve.

But I am on my way with great new doctors, Crohn's experts and advocates. One of the doctors leads my support group, and keeps us informed up to date on all the great new discoveries and coming attractions. I was not aware my GP referred me to his practice. My new doc works closely with him and the support staff is amazing.

I have to survive this current round and I know 2020 is nearing getting over and great time it has been to open our eyes and vote for a government that knows that they serve the nation before themselves. Every time this great nation goes through a pandemic, a World War or a Great Depression, we come out stronger, wiser and better off. So, it is hard and I would be fool to not agree with this. But one thing I've learned from family here and passed, is when things are at their worst, be your best and that makes all the difference. We should always look at being better and better will come, no matter how crazy it gets.

The ones who see opportunity no matter circumstance change the world, even as good family members and friends. It's not easy, but thank goodness for this forum, when things are at their worst, there is always good support from members like you an we owe it the forum, to keep passing it on.

I feel like crap right now, but I know the horizon is bright and after a colonoscopy and ileioscopy, through my stoma, my new docs will work with me for the best possible outcomes, FINALLY.

Thank you,
Hey Michael,

Loved the post, thanks for sharing it! Agree, I too am looking forward to the change in government and saying "C-YA!" to 2020, trusting 2021 will be a bit better for all of us.