Derek’s Ulcerative Colitis Battle
Donation protected
Hi everyone, my name is Cathy Luck and I am Derek Waddell’s mom.
At the end of 2021, things were really looking up for Derek. He was working in car sales, a job he really loved, and enjoyed. Then, an opportunity came up to work for an Aerospace Company in Plymouth and he was very excited about the new challenge.
Now, life has thrown him a curve ball.
Derek went from being a healthy 29-year-old man to suffering with intense GI symptoms, unable to eat, and dealing with debilitating pain almost overnight.
His first trip to the doctor was in mid-December when things became uncomfortable for him, but he did not think it was anything serious. They ran some tests and weren’t able to find what was causing the issues and ordered a colonoscopy. A few days later, Derek was running a high fever & the pain was getting worse. He was at work at the car dealership and decided to leave sick for the rest of the day. Since he had given notice and the following day would have been his last day, they said “why don’t you just make today your last day?” which of course made perfect sense. A couple days later, on Christmas Day, the pain was unbearable, and we brought Derek to the Emergency Room. They gave Derek IV fluids and a CT scan. They found severe colitis (inflammation of the colon) and, after consulting with MNGI, they prescribed 2 antibiotics just in case there was infection. They did not give him anything to treat the inflammation at that time, as they did not know exactly what Derek was dealing with. The colonoscopy was scheduled for 5 days later, but Derek’s symptoms were worsening. So, three days later we were back to the ER.
At that point Derek was extremely nauseous and in excruciating pain. They gave him an IV while we sat in the busy waiting room. Finally, we got into an exam room at about 1 in the morning and the ER doc was able to give him steroids by IV and more fluids which seemed to provide some temporary relief and we went home with a prescription for steroids.
His colonoscopy was the next day and the doctor’s initial report stated that Derek only had a “few spots of normal tissue” in his colon and most of the tissue was severely inflamed. He was diagnosed with severe Inflammatory Bowel Disease (IBD). He further indicated that it’s likely Ulcerative Colitis (chronic inflammatory bowel disease that causes painful inflammation in the digestive tract), but he didn’t rule out Crohn’s. They wanted to do blood work the same day, but Derek was too sick and dehydrated for them to take blood, so they gave him IV fluids right in the doctor’s office while he rested. They were eventually able to get the samples that they needed, and we were on our way.
While we awaited test results over the next several days, Derek’s condition continued to worsen. Unable to keep food down, he was losing more weight and not sleeping due to pain and night sweats. He was literally barely able to get himself from the bed to the bathroom as he had become so weak, and the pain so intense. OTC painkillers did nothing.
Finally, on January 6th, we had our 3rd visit to the ER, and they admitted Derek later that day. As part of hospital protocol, they test everyone who’s admitted for COVID, and he tested positive (no symptoms). Derek has been in the hospital since then with no visitors allowed and we do not know when he will be able to come home.
The oral steroids that were administered failed because Derek’s colon was so sick & unable to absorb the medicine. So, they tried steroids by IV, which also failed & Derek’s condition worsened. The doctors recommended a biologic, Remicade, which is about $2,000 per dose and needs to be approved by insurance. Insurance denied the request. He had another CT scan because they couldn’t explain the pain and they wanted to make sure that they weren’t missing anything. Later in the week, they had to do a sigmoidoscopy to check his colon again to prove that his body was not responding to treatment and again make sure that they didn’t miss something. The result of that scope was a diagnosis of a very severe case of ulcerative colitis and Crohn’s and confirmation of the medication not working.
In the meantime, his hemoglobin dropped dangerously low, and he required a blood transfusion. Derek’s sodium is also dangerously low, and he has something called SIADH which is a condition in which high levels of a hormone cause the kidneys to reject sodium. This can be serious and there is a risk of seizure with this condition. He is on fluid restrictions to help his kidneys and are doing what they can to increase his sodium levels, which in turn raises his blood pressure.
Finally, the Remicade was approved, and he had the 3-hour infusion on Sunday the 16th of January. Since then, his hemoglobin, sodium and inflammation markers have improved slightly, but he may require a second Remicade treatment. Pain is still an issue, but there is also slight improvement there - things are moving in the right direction.
As of the writing of this story, Derek’s inflammation markers and hemoglobin have improved very slightly, and sodium is not improving (we are not sure why). He was given a second Remicade infusion on the 19th and we are hopeful that this second infusion will be the ticket. He is continuing with the steroid treatments along with the Remicade as well as low fluids to help his kidneys.
It has been heartbreaking to know my son is in such pain and not be able to be there to hug and support him during the worst time of his life. I cannot imagine how lonely and isolating this must feel for him as he is not able to leave his room or have a single visitor because Remicade is an immunosuppressive drug, so we need to be careful not to expose Derek to anything. He’s lost 30 pounds or more, and those of you who know him know what a slender person he was already. Muscle atrophy has settled in now too, and he has started physical therapy to slowly get his strength back and must use a walker.
Derek is very determined to get stronger so that he can get back to work and life as soon as possible, but it may be a slow process.
At this point, we don’t know what Derek’s medical bills will look like since he is still in the hospital as of the posting of this story. The timing is such that he is no longer in his previous job as he left to start a new one, which he hadn’t started yet. His sickness landed smack dap in the middle. Considering that he’s between jobs with no income, we aren’t sure what will happen or when he will be healthy enough to work. He is on the hook for both 2021 (ER visits and many tests landed in December) and 2022 high deductibles as well as living expenses.
Asking for help is not something that anyone wants to do and believe me nobody wants to be healthy and get back to living life more than Derek does.
This has been a tough and lonely battle. Please consider helping. If you are not able to help financially, your prayers are welcome and appreciated.
Thank you and God bless.
Cathy
At the end of 2021, things were really looking up for Derek. He was working in car sales, a job he really loved, and enjoyed. Then, an opportunity came up to work for an Aerospace Company in Plymouth and he was very excited about the new challenge.
Now, life has thrown him a curve ball.
Derek went from being a healthy 29-year-old man to suffering with intense GI symptoms, unable to eat, and dealing with debilitating pain almost overnight.
His first trip to the doctor was in mid-December when things became uncomfortable for him, but he did not think it was anything serious. They ran some tests and weren’t able to find what was causing the issues and ordered a colonoscopy. A few days later, Derek was running a high fever & the pain was getting worse. He was at work at the car dealership and decided to leave sick for the rest of the day. Since he had given notice and the following day would have been his last day, they said “why don’t you just make today your last day?” which of course made perfect sense. A couple days later, on Christmas Day, the pain was unbearable, and we brought Derek to the Emergency Room. They gave Derek IV fluids and a CT scan. They found severe colitis (inflammation of the colon) and, after consulting with MNGI, they prescribed 2 antibiotics just in case there was infection. They did not give him anything to treat the inflammation at that time, as they did not know exactly what Derek was dealing with. The colonoscopy was scheduled for 5 days later, but Derek’s symptoms were worsening. So, three days later we were back to the ER.
At that point Derek was extremely nauseous and in excruciating pain. They gave him an IV while we sat in the busy waiting room. Finally, we got into an exam room at about 1 in the morning and the ER doc was able to give him steroids by IV and more fluids which seemed to provide some temporary relief and we went home with a prescription for steroids.
His colonoscopy was the next day and the doctor’s initial report stated that Derek only had a “few spots of normal tissue” in his colon and most of the tissue was severely inflamed. He was diagnosed with severe Inflammatory Bowel Disease (IBD). He further indicated that it’s likely Ulcerative Colitis (chronic inflammatory bowel disease that causes painful inflammation in the digestive tract), but he didn’t rule out Crohn’s. They wanted to do blood work the same day, but Derek was too sick and dehydrated for them to take blood, so they gave him IV fluids right in the doctor’s office while he rested. They were eventually able to get the samples that they needed, and we were on our way.
While we awaited test results over the next several days, Derek’s condition continued to worsen. Unable to keep food down, he was losing more weight and not sleeping due to pain and night sweats. He was literally barely able to get himself from the bed to the bathroom as he had become so weak, and the pain so intense. OTC painkillers did nothing.
Finally, on January 6th, we had our 3rd visit to the ER, and they admitted Derek later that day. As part of hospital protocol, they test everyone who’s admitted for COVID, and he tested positive (no symptoms). Derek has been in the hospital since then with no visitors allowed and we do not know when he will be able to come home.
The oral steroids that were administered failed because Derek’s colon was so sick & unable to absorb the medicine. So, they tried steroids by IV, which also failed & Derek’s condition worsened. The doctors recommended a biologic, Remicade, which is about $2,000 per dose and needs to be approved by insurance. Insurance denied the request. He had another CT scan because they couldn’t explain the pain and they wanted to make sure that they weren’t missing anything. Later in the week, they had to do a sigmoidoscopy to check his colon again to prove that his body was not responding to treatment and again make sure that they didn’t miss something. The result of that scope was a diagnosis of a very severe case of ulcerative colitis and Crohn’s and confirmation of the medication not working.
In the meantime, his hemoglobin dropped dangerously low, and he required a blood transfusion. Derek’s sodium is also dangerously low, and he has something called SIADH which is a condition in which high levels of a hormone cause the kidneys to reject sodium. This can be serious and there is a risk of seizure with this condition. He is on fluid restrictions to help his kidneys and are doing what they can to increase his sodium levels, which in turn raises his blood pressure.
Finally, the Remicade was approved, and he had the 3-hour infusion on Sunday the 16th of January. Since then, his hemoglobin, sodium and inflammation markers have improved slightly, but he may require a second Remicade treatment. Pain is still an issue, but there is also slight improvement there - things are moving in the right direction.
As of the writing of this story, Derek’s inflammation markers and hemoglobin have improved very slightly, and sodium is not improving (we are not sure why). He was given a second Remicade infusion on the 19th and we are hopeful that this second infusion will be the ticket. He is continuing with the steroid treatments along with the Remicade as well as low fluids to help his kidneys.
It has been heartbreaking to know my son is in such pain and not be able to be there to hug and support him during the worst time of his life. I cannot imagine how lonely and isolating this must feel for him as he is not able to leave his room or have a single visitor because Remicade is an immunosuppressive drug, so we need to be careful not to expose Derek to anything. He’s lost 30 pounds or more, and those of you who know him know what a slender person he was already. Muscle atrophy has settled in now too, and he has started physical therapy to slowly get his strength back and must use a walker.
Derek is very determined to get stronger so that he can get back to work and life as soon as possible, but it may be a slow process.
At this point, we don’t know what Derek’s medical bills will look like since he is still in the hospital as of the posting of this story. The timing is such that he is no longer in his previous job as he left to start a new one, which he hadn’t started yet. His sickness landed smack dap in the middle. Considering that he’s between jobs with no income, we aren’t sure what will happen or when he will be healthy enough to work. He is on the hook for both 2021 (ER visits and many tests landed in December) and 2022 high deductibles as well as living expenses.
Asking for help is not something that anyone wants to do and believe me nobody wants to be healthy and get back to living life more than Derek does.
This has been a tough and lonely battle. Please consider helping. If you are not able to help financially, your prayers are welcome and appreciated.
Thank you and God bless.
Cathy
Organizer and beneficiary
Claudia Comstock
Organizer
Prior Lake, MN
Derek Waddell
Beneficiary