The Power of Risktaking and Playing and Active Role in Your Healthcare

Alicia seemed to be in pain all the time.  She felt a stinging ache right under her ribs.  But, like most of us, she didn’t want to miss any work.  She decided to power through the pain as best she could.  Finally, the discomfort was just too constant for her to ignore.  She paid a visit to her regular physician and received several different diagnoses, including acid reflux and stomach ulcers and was sent home.

So she did go home, but the pain continued.  The discomfort became so strong that she could no longer lay on her side without severe pain.  That’s when she knew that something was truly wrong.

Alicia returned to her physician and began a series of tests and procedures that would last for well over the next year.

Initial assessments revealed that her white blood cell count was through the roof.  More shockingly, CT scans showed a gaping hole and abscess in her colon, or large intestine.  Alicia was immediately admitted to the emergency room.  Her skin was numbed and a tube was inserted into her body to begin draining the abscess in her colon.  The remaining hole was suctioned to remove as much fluid substance as possible, an extremely painful procedure even with a local anesthetic. 

Even after putting Alicia through that much excruciating discomfort, the doctors were not able to drain as much of the abscess as they wanted.  Finally, a tube with a balloon was infiltrated into Alicia’s body to try and drain even more from the abscess.

Alicia’s parents became increasingly concerned throughout this process.  This was their daughter going through all this pain.  They felt that something about how these events and procedures unfolded just wasn’t right.  Alicia’s mother, who worked at a major medical device manufacturer, consulted with her boss, a gastrointestinal surgeon, about Alicia’s condition.  They all agreed.  It was time to remove Alicia from the small hospital system in which she was being treated.

Alicia later told me that she didn’t realize how bad her situation really was at that point.  She was willing to just hang in there are see if the treatments worked at this regional hospital, something that myself and other readers may have leaned towards.  You’re in the hands of doctors.  They should know what’s best for your health, right?

“When you go through something like this, you’re in a lot of pain.  So you’re not thinking the most rationally about things.  Sometimes you’re just thinking, what’s going to not cause me any more pain than I’m dealing with right now?” Alicia explained.

You always need your mom and dad, no matter your age.

With the help of Alicia’s parents, she was transferred to a much larger hospital system where she and her family hoped she would receive better care.  In this new hospital system, Alicia was diagnosed with both Crohn’s Disease and colitis, a very rare combination.  Alicia had previously been diagnosed with Crohn’s- an inflammatory bowel disease (IBD) that causes inflammation of the digestive tract lining- in her 20s and had been taking medications for the past ten years.  Colitis is also an IBD but leads to longer lasting digestive tract inflammation and ulcers, quite an uncomfortable, painful combination.

Alicia and her family now hoped she was on the right track and that her new team of doctors would be able to relieve her pain.

She was placed on a mixture of antibiotics to clear up infections that had occurred from the previous abscess.  Her new medical team- a mix of an internal medicine doctor, gastrointestinal doctor, and gastrointestinal surgeon- collaborated and synthesized a plan to better Alicia’s health, constantly informing her of her choices and the associated risks. 

Alicia’s new medical team again tried to drain abscesses that had formed in her colon- she now had two- but they weren’t successful.  The damage was so severe that the injured part of her colon had to be removed.  So Alicia had a three-inch incision made in her body and a diseased portion of her colon excised.

After a major surgery like this one, or really any surgery, you hope that there are no more.  That there will be no repeat experience.  Unfortunately, that wasn’t the case for Alicia. 

After the first surgery, Alicia’s doctors decided they needed to go back in and remove more of the colon.  But this was going to be a big surgery, much more invasive than the previous.

What choice did she have?  Alicia went under the knife for what was the third time in this whole process.  A very large incision was made to remove even more of the damaged colon.  Then she was sewn back up and hooked to two external draining tubes.  She had a PICC line inserted into her heart to deliver antibiotics.  She was forced to use a colostomy bag and stayed in the hospital for a nine-day recovery process.  During this time, her medical incision became infected and had to be packed twice a day.  Finally, she was sent home to heal.

But Alicia wasn’t quite finished yet. 

Yet another abscess was detected in her colon, right next to her stomach.  Fortunately, this time she didn’t need a major surgery.  Her team placed a stent into the abscess, allowing the mass to drain into her stomach.  The abscess emptied into Alicia’s stomach for weeks.  It started to shrink and eventually flattened out. 

The process worked phenomenally, but “everything was too traumatized,” Alicia explained.  Her body had had enough.  The surgeries plus the stent-mediated drainage was a difficult procedure for Alicia’s system, but she powered through.  Thanks to her family, her incredible medical team, and her willpower, Alicia finally began to heal.

Or so she thought.

Five months later, the now familiar pain returned to her stomach, a pain so sharp at times that she was reduced to tears.  Alicia made her sixth total trip to the emergency room.  Scans revealed that her colon had narrowed to the size of a pinhead. 

Alicia’s colon had shrunk down to a 1/4th opening; most healthy colons are two inches wide.

Alicia’s medical team discussed the prospect of another surgery, re-admitting her to that long, traumatic process once again.  This time, however, she had another option to surgery.  She could try an experimental procedure and have a stent placed into her colon to try and enlarge its width.  A member of Alicia’s medical team was one of the few specialists in the country who could perform this technique.

When I asked Alicia how she felt about doing an experimental treatment, if she was worried that it wouldn’t work or might even cause harm, she said she would have been pretty skeptical if she had not been subject to so many surgeries along this journey.

“I’ve already been through so much.  But there was no guarantee that this is going to work either.  So I might have to go through this and they might have to do the surgery anyway. …We just didn’t know if my system would be able to handle another big surgery.  So they thought [the experimental procedure] was the best option,” she explained.

Alicia had two stents placed in her colon to open it up and stuck to a careful diet so nothing got snagged in the stent while it did its work.  She handled the procedure remarkably well.  Her colon remained open with the help of the stents.  When her team felt that she was ready, the stents were removed and Alicia’s colon stayed open.

Now, thanks to the experimental procedure, Alicia is on the mend.  It’s been about two years since the stents were removed from her body.  Every few weeks, she still receives drug infusions.  She still is on prescription medications.  She still has to have checkups every six months.  But she’s made it.

I asked Alicia what she learned from this process that might help others who are faced with similar frightening decisions about their health.

“I think one of the first things is don’t just immediately assume that the first person that you’re going to is knowing what they’re doing and doing the best thing. …Don’t take the first answer as your only answer,” she advised.

For Alicia, her family played a vital role throughout this process.  She was in so much pain, she often wasn’t hearing the conversations with her medical team.  “So I think in that situation, not dealing with it on your own and making sure that somebody else you trust is there to help you with it,” she said.

I was so honored to share the stories of both Alicia and Katherine over the past few weeks.  The amount of bravery it took to tell these stories to one person is bold.  But both women felt that spreading their stories of suffering and perserverance to even more people could hopefully do some good, even if it was to inspire a single person.  

Every day we are faced with decisions.  Some are monumental, some are not.  Some involve a large degree of risk and mettle.  It’s how we respond to these types of decisions that forge our character.  These women both had amazing stories of risk-taking to share.  They are the real innovators, the true medical entrepreneurs blazing new and uncharted trails.  The rest of us are just following in their stead.  Without someone to test and take a chance on the medical innovations that we create, we could go nowhere.