This has destroyed my life.

Joined
Oct 20, 2024
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2
During the 2020 plandemic, I started having digestive issues with frequent diarrhea. Doctors would not see me in office, and the hospitals here were closed except for covid patients. I had an internet consult with a GI doc, but that did not result in any diagnosis or treatment, but suggested I have a colonoscopy when the hospital reopened for elective procedures. When that happened, he diagnosed me with crohn's disease or ulcerative colitis.

About a week later, I woke up and my heart rate was 170 bpm. I thought I was having a serious heart problem and had my wife call an ambulance for me. I remember walking to the ambulance and thats the last thing I remember for the next 11 days. When I woke up again after 11 days, I was totally paralyzed and didn't know what had happened but I knew I was in the ICU and they told me I had a colostomy. While I was under their care, I suffered 24 blood clots in my legs and 3 pulmonary embolisms. A surgeon called me on the phone and told me I needed another surgery immediately or I would die that night. I told him no, and my wife backed me up on my decision. So they sent me to hospice. Well, I didn't die that night, and after about a month, I was sent to a rehab. During my time in rehab, the nurses all expected I would die. I found a swelling on my pelvis which I didn't have before and the rehab doctor told me it as a hernia I had for years. I told him I did not have a previous hernia, and sent a picture of it to my wife. She convinced the doctor that it should be investigated whereupon they sent me back to the hospital where they tried to reduce the hernia, but discovered it wasn't a hernia. Cat scans showed it was a huge pool of pus in my abdomen. Drains were inserted and over a liter of fluid was drained out. That's the point where I started to recover. Two months later, I could walk a few steps and operate a wheel chair and they sent me home.

Other losses were my finger tips which developed gang-green. My wife would not let them amputate my fingers, and they mostly recovered but I did lose some of my fingertips. I was a musician in local bands most of my life and now I can no longer play my bass, guitar and pedal steel. I also lost half the visual field in my left eye, probably because of a stroke while there. My muscle strength has not returned in four years, so I cannot run my machine shop equipment.

As for the colostomy, its the biggest deficit which has resulted in the loss of my freedom. Because it is unreliable, uncontrollable, and unpredictable, I can't trust going anywhere for more than a short amount of time, nor can I predict when that time window is going to happen. I am a prisoner to it.
In short, everything that made me ME is gone.

After this ordeal, the GI doc told me that I had to take Humira for the rest of my life. I refused, know that Humira was antibodies which lowers TNF-alpha. Thats all it does. Well I was familiar with two other substances that control TNF-alpha; gold nanoparticles, and high dose melatonin. So I have taken 180mg of melatonin a day for the past 4 years, which costs me about $10 a month instead of the thousands Humira costs.

I hope no one else has to endure the problems I have had.
 
Humira may be covered by your insurance, but you could also try other medicines such as Stelara.

If you currently have inflammation in your intestines (which is something you may need some testing to determine), it's important to do something to reduce that inflammation.
 
Humira may be covered by your insurance, but you could also try other medicines such as Stelara.

If you currently have inflammation in your intestines (which is something you may need some testing to determine), it's important to do something to reduce that inflammation.
I have not had any intestinal inflammation since starting high dose melatonin. The only place I have any irritation is on the skin surrounding my stoma, whih is hard to prevent. Humira is not covered by my insurance, but even if it were, I would not choose it over melatonin.
 
During the 2020 plandemic, I started having digestive issues with frequent diarrhea. Doctors would not see me in office, and the hospitals here were closed except for covid patients. I had an internet consult with a GI doc, but that did not result in any diagnosis or treatment, but suggested I have a colonoscopy when the hospital reopened for elective procedures. When that happened, he diagnosed me with crohn's disease or ulcerative colitis.

About a week later, I woke up and my heart rate was 170 bpm. I thought I was having a serious heart problem and had my wife call an ambulance for me. I remember walking to the ambulance and thats the last thing I remember for the next 11 days. When I woke up again after 11 days, I was totally paralyzed and didn't know what had happened but I knew I was in the ICU and they told me I had a colostomy. While I was under their care, I suffered 24 blood clots in my legs and 3 pulmonary embolisms. A surgeon called me on the phone and told me I needed another surgery immediately or I would die that night. I told him no, and my wife backed me up on my decision. So they sent me to hospice. Well, I didn't die that night, and after about a month, I was sent to a rehab. During my time in rehab, the nurses all expected I would die. I found a swelling on my pelvis which I didn't have before and the rehab doctor told me it as a hernia I had for years. I told him I did not have a previous hernia, and sent a picture of it to my wife. She convinced the doctor that it should be investigated whereupon they sent me back to the hospital where they tried to reduce the hernia, but discovered it wasn't a hernia. Cat scans showed it was a huge pool of pus in my abdomen. Drains were inserted and over a liter of fluid was drained out. That's the point where I started to recover. Two months later, I could walk a few steps and operate a wheel chair and they sent me home.

Other losses were my finger tips which developed gang-green. My wife would not let them amputate my fingers, and they mostly recovered but I did lose some of my fingertips. I was a musician in local bands most of my life and now I can no longer play my bass, guitar and pedal steel. I also lost half the visual field in my left eye, probably because of a stroke while there. My muscle strength has not returned in four years, so I cannot run my machine shop equipment.

As for the colostomy, its the biggest deficit which has resulted in the loss of my freedom. Because it is unreliable, uncontrollable, and unpredictable, I can't trust going anywhere for more than a short amount of time, nor can I predict when that time window is going to happen. I am a prisoner to it.
In short, everything that made me ME is gone.

After this ordeal, the GI doc told me that I had to take Humira for the rest of my life. I refused, know that Humira was antibodies which lowers TNF-alpha. Thats all it does. Well I was familiar with two other substances that control TNF-alpha; gold nanoparticles, and high dose melatonin. So I have taken 180mg of melatonin a day for the past 4 years, which costs me about $10 a month instead of the thousands Humira costs.

I hope no one else has to endure the problems I have had.
 
I took Humira for 2.5 years to treat my Crohn's. Depending on insurance plans, you may be able to get coverage if the Rx expenses are at the deductible. If not, you pay up to the deductible before getting full coverage. I used AbbVie's prescription coverage program for some time when my employer changed my insurance provider. You can also use the Humira Complete Savings Card to bring the costs down to $0.
 
Other losses were my finger tips which developed gang-green.
Thisll sound strange, but ive known three different people who all had a lost there finger tips episode: one due to an accident at a job site, i believe something fell on his fingers, another was a good friend of mine who had them cut off by someone he was in an abusive fight with, and then i know there was another but it was long time ago ... suffice to say my good friend use to play bass, but no longer... nevertheless, thats a pretty wild story of yours tho. This all just happened in 2020 more or less?... Thats like... iuno, to me thats like waking up to a nightmare, and 4 years later its jus been a descent ever since huh. ill tell ya, i still feel like we're always on the edge... its just, one inch from the descent, or the desert of awakening, and up or down is just relative, theres no center when gravity takes you to the bottom of, what was ostensibly suppose to have been the top—and vice versa, that is to say that theres multiple directions that all point to this, place... this core, or heart that we all keep getting close to, whether it be through traumatic experience, near death, meditation, etc. this point we're crossing and seeing through instead of becoming, cause to become is to free ourselves. the brain is a barrier, and a gateway, the world is the background, the subject's body discretized, in an absolute sense, like tiny stars that—when you look at in closer detail, appear as molecules, or nebulae, or atoms, or cluster planets, or blackholes, or supernovae in holy matrimony—stars aligned, and scars that shatter, crystalline, crystal clear
 
Humira may be covered by your insurance, but you could also try other medicines such as Stelara.

If you currently have inflammation in your intestines (which is something you may need some testing to determine), it's important to do something to reduce that inflammation.
Most biologics have plans that help
 
A colostomy (as opposed to an ileostomy) should be fairly easy to deal with. It sounds like you got an emergency ostomy from a surgeon who doesn't specialize in them and maybe didn't position it correctly? Do you have any kind of insurance? If so, I would highly recommend University of Chicago or Cleveland Clinic to re-do your ostomy. Ostomies should give you freedom, not take it away. Also, there are fairly cheap drugs that make your output more predictable. Have you talked to an ostomy nurse? Ostomy nurses are some of the best humans on the planet.
 

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