Mom & kids fight Familial adenomatous polyposis

Hello,

My name is Vanessa Inger, I was adopted when I was very young and it wasn't until I was 32 that I found out that I had Familial Adenomatous Polyposis. I now have a permanent disability due to the Familial Adenomatous Polyposis and complications. I am a single mother of 4 kids. I have 3 son’s 22, 17, and 9 & 1 daughter 23. My 17 yr old Lives with his father and his status of the surgery and care is unknown. In 2012 I was diagnosed with Familial Adenomatous Polyposis (FAP). My world was turned upside down.

 

Familial adenomatous polyposis (FAP) is a rare, inherited condition caused by a defect in the adenomatous polyposis coli (APC) gene. Most people inherit the gene from a parent. But for 25 to 30 percent of people, the genetic mutation occurs spontaneously.

FAP causes extra tissue (polyps) to form in your large intestine (colon) and rectum. Polyps can also occur in the upper gastrointestinal tract, especially the upper part of your small intestine (duodenum). If untreated, the polyps in the colon and rectum are likely to become cancerous when you are in your 40s. Most people with familial adenomatous polyposis eventually need surgery to remove the large intestine to prevent cancer. The polyps in the duodenum also can develop cancer, but they can usually be managed by careful monitoring and by removing polyps regularly.

This is my story of living with and FIGHTING Familial adenomatous polyposis.

In 2013 5 months after I had my son Caleb a NICU baby. I had my 1st of 2 surgeries to complete a Total proctocolectomy with ileoanal anastomosis. The colon and rectum are removed and a part of the small intestine is attached to the rectum. I had an ileostomy bag for 3 months & in Jan 2014 for the removal of my ileostomy bag and reconnection of my reconstructed rectum.

I returned to work in 2015 and worked up until 2016. Sometime in 2016, I had a fatty mass resection that was in my abdomen. A few weeks later the pathology reports came back. They were desmoid tumors. They were successful in removing one, and within 3 months 3 more grew back. I was given meds to monitor the growth. The next few years were challenging lots of highs and lows around recovering from these surgeries and finding myself in a different life than what I had before.

In 2016 I had 3 of my 4 kids genetically tested for Familial adenomatous polyposis. I didn't have my youngest tested due to his age at the time his siblings were tested as he was too young. Results came back and ALL 3 out of my 4 children were carriers of the FAP. During this time I was recovering from the surgeries along with complications.

In 2018 I was sick again. I had been suffering from heartburn for about 4 years. I thought it was from having Caleb. Little did I know I should have been receiving EDG's Endoscopies since 2013. I was seen by a few different doctors in OC and LA.

Findings I needed a Whipple surgery asap. The dr found a very large Duodenal polyp. 3/28/18 I had the Whipple surgery and I almost died but by the grace of God I am still alive.

During my recovery in 2018, my daughter was the first one of my children to have a Total proctocolectomy with ileoanal anastomosis a 2 part surgery. Her recovery since surgery has been hard along with other complicating findings or factors such as mine as I have mentioned. FAP has a lot of complicating factors that can play a part in your lifetime.

In 2020 my kids and I went through a shift, & the Lord relocated us to Grants, NM.

Since moving here in 2020 my daughter's health has declined drastically over the past 3 years. The doctors here are not specialized in rare diseases or anything that requires more than scratching the surface. She has been sent home with a bowl obstruction. Thank goodness we know how to handle such situations.

In the past 3 years of living here in NM, I have been admitted 1 time for Pancritias, dehydration, and fatty liver. I have been to the ER between 10-20 times. In 2021 my primary dr referred me to The Mayo Clinic in AZ. This has been the biggest blessing and has saved my life 3 times already. Most recently in June 2022, I had a blocked bile duct of about 90%. Rust Hospital was not able to assist me due to the higher level of care needed. They contacted The Mayo after I gave all my info to my doctor and within 2 hrs there was a jet ready to life flight me to The Mayo Clinic. I stayed in AZ for 5 days and had to return for the EDMR again in 3 months to repeat.

In Oct 2022 I had an EDG & Sigmoidoscopy here in Albuquerque. The doctor removed a handful of polyps low dysplasia and that was it.

Jan 2023 I headed back to The Mayo Clinic for my yearly scans EDG & Sigmoidoscopy. After all the consults my doctors located a large gastric adenoma in my stomach along with 3 adenomas in my intestine which are high risk for turning into intestinal cancer. Treatment will be an EDG with the removal of the gastric polyp in March 2023. Biopsies are to be taken of the 3 adenomas in the intestine and repeat EDG with the removal of the adenomas. The doctor advised this could take 2 or 3 different EDGs depending on the findings of the adenomas that they check in March 2023.

My son Ryan is 22. He has FAP and has been referred to The Mayo Clinic. He has completed all his testing and scopes. March 2023 will be his upcoming doctor's video to discuss the plan and recovery for the Total proctocolectomy with ileoanal anastomosis in AZ. This will be his 2 part surgery to prevent colon cancer.

Lastly, I have my son Caleb who is 9 yrs old. He has yet to be screened genetically and honestly, I am waiting because it can be overwhelming and each kid needs their amount of affection, care and nurturing because this road we trudge is not easy at times. I am undecided yet if he should be with The Mayo Clinic and test him or have it done locally here.

I want to bring awareness to Familial Adenomatous Polyposis & Colon Cancer Screening and support with living and surviving with Familial Adenomatous Polyposis. Receiving a such diagnosis is hard to receive but I want you to know that it is possible and life is not over. It just means we have to fight harder than others if we want to stay here alive and well as we can be. With all this taking place I am not able to work due to my health conditions and restrictions. Medical bills are stacking up quickly, not to mention the boarding, travel, food & medicine in AZ when I stay for my treatments. I am reaching out for your help and prayers for my children and me. Together we can bring awareness. Will you stand hand in hand with us?