By: Susan Fenderson, LCSW, Vivante Health Sherpa. Susan is a licensed clinical social worker and Health Sherpa with Vivante, the digestive health experts. Along with her 25+ years of experience in counseling and healthcare, Susan brings a level of compassion, empathy and resolve to her work that comes from surviving her own digestive health nightmare.
Doctors don’t always seem to understand the personal side of digestive health problems, but Susan does. That’s why she is so devoted to her clients, working every day to help improve the lives of people struggling with gastrointestinal (GI) trouble. Read Susan’s story to learn what she went through and why, for her, being a Vivante Health Sherpa is more than just a job:
March 22, 2010: PAIN
I was working full time as a social worker, in fact more like full-time-and-a-half—I rarely worked fewer than 55 hours a week. On this particular day, I had managed to leave work a few minutes early because I needed to stop and purchase a birthday gift. When I pulled into the mall parking lot, it hit me. PAIN. My stomach hurt so bad I could barely stand it. I have a high tolerance for pain, so the intensity of this episode freaked me out. I headed straight home, hoping I’d just been hit with a bad virus and that it would be gone by tomorrow. I’ve never been more wrong in my life.
I made it through the night but was in more agony by the minute. At 7 am, I could not take it any longer and asked my husband to drive me to the emergency room. A routine check and CT scan later, I was being admitted and prepped for emergency surgery. I had an aneurysm and waiting was not an option.
Surgery Unlike Anything I Imagined
Two years before this incident, I had had my gallbladder removed. It was nothing, a piece of cake—procedure on Saturday, home on Sunday, back to work on Monday. That was laparoscopic surgery, though. This time I was not so lucky.
I remember that when I woke up, I moved my head slightly up and could instantly feel this was different from the laparoscopic gallbladder procedure two years prior. This time I had undergone a major operation. The surgeon informed me that he had removed 18 inches of my lower intestine, but that everything else was okay…or so he thought.
Hospital Recovery Nightmare
Recovery was a nightmare. I spent the next three days learning to walk with thirty-seven staples down my abdomen. My goal at that time was to have at least one tube a day removed from my body; I did NOT enjoy the feeling of being tied down to poles and equipment.
My surgery had taken place on a Friday, and on the following Tuesday I learned firsthand just what else I would be dealing with in the coming months. I had to call for assistance 17 times that day because, as one very comedic nurse put it, I was “peeing out the pooper.” I didn’t understand where it was all coming from, how it was possible to have that much sickness coming out of my body with so little food in my system.
The hospital staff told me it was only temporary, that these symptoms would subside as I healed. Truthfully, if I had known how wrong they were and what I was going to endure, I would have opted, no begged, for a colostomy bag. Every few minutes of every single day I had to struggle to get out of bed and make it to the restroom.
I was exhausted, and I seemed to just hit one obstacle after another. At some point I was tested for C. diff and told it was positive. No one told me what it was, though, or what that meant. I later learned C. diff is a potentially life-threatening bacterial infection of the colon. (Thanks, Google.) Two days later, even when the same test came back negative, they still continued to treat me for this infection with high doses of strong antibiotics.
Back Home and Off to Work
Finally, after a ten-day stay, I was released, but not to the life I had once known. On top of recovering from surgery, which was hard enough, I had a continuous upset stomach with uncontrollable bowels, weakness, and the inability to care for myself. It couldn’t possibly get much worse, right?
Well, even after my incision healed and my strength began to return, my stomach issues persisted. I had to remain inches from a restroom 24/7. Following a seven-week leave of absence, it was time to return to work even though my digestive nightmares were not resolved. I can say it was, without a doubt, the most difficult time of my entire life. I’ll spare the details, but just know if you’ve never had to manage uncontrollable digestive episodes during an 8- to 10-hour workday, your life is blessed. It was a horrible time for me, both physically and emotionally.
When my final check-up visit with the surgeon came, I asked about my continued issues, if they were normal and what I could do about it. He suggested a probiotic and sent me on my way.
That’s it. Nothing more.
I am telling you, I was miserable. And I felt like I had no one to turn to. My symptoms were not only embarrassing, but I felt alone because of digestive symptoms I was sure no one else could possibly understand or relate to. My own doctor, a specialist, didn’t even seem to get it.
Eventually my intestinal problems reached the point where I could no longer function at my job. I ended up resigning and working from home. The problem with that was that I lost my insurance coverage. I spent several days feeling pretty sorry for myself before making the decision: it was time to move forward.
Time to Move Forward
I did some exploring, found a direct-pay doctor, and made an appointment. I also began researching my condition and going over symptoms. By the time I met my new doctor, I was determined that I would work with him on a treatment plan, not just sit back and listen this time.
After we ruled out Crohn’s disease (which I originally tested positive for—fun times), we went over x-rays and medical notes pertaining to the surgery. Bingo! There was the answer: in the surgery I had lost 18 inches of my intestine, including the particular area responsible for separating stomach bile. The doctor and I came up with a plan to try a medication that works by separating stomach bile. Hallelujah, I finally I got some relief! My potassium level came back up. I was able to leave my home again without fear. Life was restored.
But Why Did it Take Two-and-a-Half Years?
The sad thing is, though, the whole ordeal—from surgery, to determining the issue, to finding a way to control it—took two-and-a-half years. If I had only had a place to turn, someone who could guide me or who would take the time to understand what I was going through, it could have made the whole process tolerable and remedied a lot sooner. As it was, I barely made it through some days.
Today I am healthy and better, but I will always remember the times that I felt like I was on an island alone, when I could not imagine anyone else possibly relating to what I was going through. I’d have to say the number one most important thing I learned through that whole experience was that you can’t control what happens when you have an intestinal issue. What you can control is how you deal with it and what you do to manage. You can regain your life.
Helping Others as a Digestive Health Sherpa
When the opportunity presented itself to work with Vivante Health, I didn’t just want to do it, I had to do it. After going through my digestive health ordeal and coming out the other side, I felt I owed it to others who are suffering as I did to help. A doctor may not totally understand what life is like on the personal side of a gastrointestinal condition, but believe me, I do. That’s why I am so devoted to Vivante and proud to be a part of the dedicated team, working every day to improve the lives of people dealing with digestive trouble.
At one point, I thought I would never have my normal, active life back. With a strong will, determination, stubbornness, and a little help from Google, though, I did it, and today things are great! Working as a Health Sherpa with Vivante Health allows me to help others find that same resolve. I’ll close by saying Vivante Health has the potential to transform lives for the better, and I am so proud to be a part of this organization.
About Vivante Health
Vivante Health is an innovative digital healthcare company reinventing the way chronic conditions are managed. Our mission is to fill the unmet needs of people living with chronic conditions that are invisible, neglected, or stigmatized, starting with digestive disease. Our health management ecosystem, GIThrive, empowers people—through brilliant technology and advanced science—to spend less time worrying about their digestive condition and more time living life. VivanteHealth.com
