Colon Removal due to FAP and Functional Dr Visits
Donation protected
In 2012 I was diagnosed with thyroid cancer and after its removal I’ve been dealing with muscle weakness, muscle and bone pain, memory issues, worsening depression, anxiety, and fatigue along with many other problems. I have been unable to continue working as I could barely lift anything heavier than a milk gallon and couldn’t walk or stand longer than an hour. I’ve tried for disability and have been denied and to this day I still have my various health issues with no explanation.
I’ve been to six to seven different Endocrinologist within the past seven years and they have all refused to look into other parts of the endocrine system to see if there are issues there that could explain things. I have been to a Rheumatologist and have tested for various muscle related issues and nothing has come up other than a vitamin D deficiency but even he stated that couldn’t explain the severe muscle weakness I’m dealing with. I’ve been taking vitamin D2 (50,000 IU a week) and vitamin D3 (5,000 IU a day) since April 2019 and the muscle weakness hasn’t gotten much better.
My PCP has stated that at this point they’re not even recommending people to Endocrinologist because of the poor care thyroid patients get and instead recommends Functional doctors for their care. With a Functional doctor I could get my whole body looked into even in parts of the systems my previous doctors refused to look at and find out what’s wrong with me. On top of this, my current medication I take to replace my thyroid isn’t working as well as it used to since the manufacturer has changed suppliers. This is the second time this has happened with my medication. My hope is that if I get to a Functional doctor we can come up with a compound medicine that works specifically for what my body needs.
Insurance and Medicaid typically doesn’t allow Functional doctors to be covered, but I have found that Cleveland Clinic does have a Functional doctor that does take either of them as long as the insurance and/or Medicaid approves it. I’m still waiting to see if I get approved and if I do, I still need money for traveling from Cincinnati, OH to Cleveland, OH and possible hotel room stays as again, I can’t work. My goal is to get diagnosed, get treatment, and apply for disability and hope that I can eventually work again.
My family and I thought that thyroid cancer was going to be the worst thing that would happen to me, but this year proved us wrong. I went in to have a colonoscopy in July because of concerning issues I was having. After the colonoscopy was finished I found out from my doctor that I had a large number of polyps, two of them being 2cm and 4cm, and could only remove around 13 polyps at the moment. A few days later we found out that all 13 polyps were precancerous for colon cancer. Because of the thyroid cancer and now the precancerous colon cancer, I was sent to have genetic testing done to see if I had a genetic mutation.
It turned out I have familial adenomatous polyposis (FAP), which is a dominant genetic disorder that causes someone to grow large numbers of polyps typically in their colon, but they can grow in other areas. So far we don’t know of anyone else in the family having it and there is a possibility that I mutated in the womb on my own. I had another colonoscopy and the doctor at that time told me that I had 100’s of polyps and it is pointless to try to remove them, except for a rather large one, because it would be impossible to keep up with their growth. He even stated that my colon would need to be removed soon. I ended up seeing my first digestive specialist for a followup and she agreed that my colon needs to be removed because the burden is too much on my colon and to prevent cancer. She will be referring me to Cleveland Clinic because of our rare my health issue is and how young I am that it would be best to see someone that specializes in the surgery and with what I have. Based on my research the surgery itself will be two operations and will require me to be in the hospital for a few days. Then adding in the initial appointment and probably post-operation appointment, that’s at least four trips from Cincinnati to Cleveland.
At this moment I am estimating that for the colon surgery I will need roughly $2,000 and I’m hoping that’s all I need to ask for. At this time I am not factoring in the Functional doctor because I am still waiting to see if it gets approved by Medicaid and if it doesn’t, I’ll have to add those expenses into my goal.
I’ve been to six to seven different Endocrinologist within the past seven years and they have all refused to look into other parts of the endocrine system to see if there are issues there that could explain things. I have been to a Rheumatologist and have tested for various muscle related issues and nothing has come up other than a vitamin D deficiency but even he stated that couldn’t explain the severe muscle weakness I’m dealing with. I’ve been taking vitamin D2 (50,000 IU a week) and vitamin D3 (5,000 IU a day) since April 2019 and the muscle weakness hasn’t gotten much better.
My PCP has stated that at this point they’re not even recommending people to Endocrinologist because of the poor care thyroid patients get and instead recommends Functional doctors for their care. With a Functional doctor I could get my whole body looked into even in parts of the systems my previous doctors refused to look at and find out what’s wrong with me. On top of this, my current medication I take to replace my thyroid isn’t working as well as it used to since the manufacturer has changed suppliers. This is the second time this has happened with my medication. My hope is that if I get to a Functional doctor we can come up with a compound medicine that works specifically for what my body needs.
Insurance and Medicaid typically doesn’t allow Functional doctors to be covered, but I have found that Cleveland Clinic does have a Functional doctor that does take either of them as long as the insurance and/or Medicaid approves it. I’m still waiting to see if I get approved and if I do, I still need money for traveling from Cincinnati, OH to Cleveland, OH and possible hotel room stays as again, I can’t work. My goal is to get diagnosed, get treatment, and apply for disability and hope that I can eventually work again.
My family and I thought that thyroid cancer was going to be the worst thing that would happen to me, but this year proved us wrong. I went in to have a colonoscopy in July because of concerning issues I was having. After the colonoscopy was finished I found out from my doctor that I had a large number of polyps, two of them being 2cm and 4cm, and could only remove around 13 polyps at the moment. A few days later we found out that all 13 polyps were precancerous for colon cancer. Because of the thyroid cancer and now the precancerous colon cancer, I was sent to have genetic testing done to see if I had a genetic mutation.
It turned out I have familial adenomatous polyposis (FAP), which is a dominant genetic disorder that causes someone to grow large numbers of polyps typically in their colon, but they can grow in other areas. So far we don’t know of anyone else in the family having it and there is a possibility that I mutated in the womb on my own. I had another colonoscopy and the doctor at that time told me that I had 100’s of polyps and it is pointless to try to remove them, except for a rather large one, because it would be impossible to keep up with their growth. He even stated that my colon would need to be removed soon. I ended up seeing my first digestive specialist for a followup and she agreed that my colon needs to be removed because the burden is too much on my colon and to prevent cancer. She will be referring me to Cleveland Clinic because of our rare my health issue is and how young I am that it would be best to see someone that specializes in the surgery and with what I have. Based on my research the surgery itself will be two operations and will require me to be in the hospital for a few days. Then adding in the initial appointment and probably post-operation appointment, that’s at least four trips from Cincinnati to Cleveland.
At this moment I am estimating that for the colon surgery I will need roughly $2,000 and I’m hoping that’s all I need to ask for. At this time I am not factoring in the Functional doctor because I am still waiting to see if it gets approved by Medicaid and if it doesn’t, I’ll have to add those expenses into my goal.
Organizer
Noelle Hyzy
Organizer
Franklin, OH