Not-So-Smooth Sailing: My Crash Landing into PI-IBS

On my husband’s 28th birthday, I began making plans for his 30th.  We don’t typically make a big deal of birthdays around our house, but I knew it would be a milestone and I wanted to do it right.  By his 29th birthday, the plans were made: a birthday cruise out of Galveston the week before his birthday and a family-friends party at one of our favorite local restaurants on the actual day.  I budgeted and prepared all year, and we excitedly headed for Galveston on February 3rd, 2018.  I probably would’ve hightailed it right back to my house if I’d known what was in store, but ignorance really can be bliss…sometimes.

The first few days of our trip were wonderful, just as our prior four cruises had been.  We snorkeled in Cozumel, went on a photo and foodie tour in Progreso, did all the fun ship things while on the boat.  But then February 8th hit.  Within three hours of getting back from our Progreso excursion, I just didn’t feel right stomach-wise.  I can’t explain the feeling other than by saying there was a basket of bread in front of me at the dinner table, and I didn’t want any of it.  If you know me, that’s big.  Something was wrong…and a gurgle in my stomach confirmed my suspicion.  I needed a restroom immediately.

I frantically ran up the stairs from the dining room (our room was fortunately only three floors away), and I spent the next three hours sending fifty-ish rounds of Satan’s hell-fire into that bathroom.  Never in my life have I felt sick in that way.  Around 9:00 p.m., my husband called the ship hospital and had them come get me: I had started convulsing.  I was rushed to the ship doctor, and long story short, he guessed that I had food poisoning from a drink I’d had earlier that day called Chaya tea (the only food Erin and I didn’t share that day), pumped me full of several liters of fluid, gave me some nausea medicine and Imodium, and sent me back to a quarantined room for the remaining 48 hours of the cruise.

Fast forward three days post-cruise, and I still didn’t feel right.  I was weak, nauseous, running a fever, and still couldn’t eat, so I stayed home from work and headed to my general physician.  Another long story short, I went through all kinds of tests that day (blood work, samples, etc.) just to find nothing.  He gave me some more nausea medicine and said to come back if I wasn’t better in a few days.

I wasn’t better in a few days.

The nausea medicine calmed my belly and sparked the tiniest of appetites, so I assumed that meant I was ready to start trying more normal foods.  That transition went downhill FAST.  I began getting sick again like I had on the ship (eek!), my fever stayed high, and I was down about ten pounds at that point.  Back to the doctor I headed for more tests and then a gastroenterologist referral.

Over the next six weeks, I went through every kind of intestinal study you can imagine: blood work…stool samples…abdominal x-rays…abdominal ultrasounds…barium study…CT scan…colonoscopy.  They checked my gallbladder, checked for C-Diff, checked for four gazillion different intestinal issues, checked for off-the-wall issues that might cause digestive problems.  Aside from high white blood cell counts, everything came back saying I was fine.  I was not fine.  About four weeks in, I was put on a round of Cipro antibiotic because the doctor firmly believed (and still does) that I had some type of unknown bacterial infection that started the whole ordeal.  The antibiotic helped by finally bringing my fever down to a more manageable level and dispelling some of the nausea, but it didn’t fix the  numerous other issues.

Somewhere around week six, I did another hospital stint for severe dehydration.  I not-so-fondly refer to this day as “The Day of the Wail” in my own mind, because after another round of unsuccessful testing, I went into the bathroom and let out the most haunting, unhuman noise that’s ever been made from my own body.  The only way I can possibly describe it is to call it the sound of utter despair.  My husband heard it and immediately called my mother because he thought I was having a mental breakdown (and looking back, I honestly might have been).  I was literally starving.  I’m not using that term lightly, either.  I…was…starving.  Bones showing, pale skin, passing out, delirious, starving.  Not one thing was staying in my system. I had lost twenty-seven pounds by this point, and for someone my size, I didn’t have that much to lose.  Something had to happen, and it had to happen fast.  I was pumped full of fluids, put on a liquid diet, given anti-spasmodics to keep the liquids in my system, and had a colonoscopy – the final remaining test – within a few more days.  I was scared to death leading up to it.  What happened if a diagnosis didn’t come?  What was I going to do?  What if I do get a diagnosis, and there’s nothing I can do?  I’ve never been sick…really sick…before.  How do I deal with it?  Question after question endlessly circled my brain.  Keep in mind that my nerves were already fried (no joke, I was on anxiety medication by now), and I’d gone through two solid months without answers…terror is truly what I was feeling.

That’s when, post-colonoscopy, I received an official diagnosis for post-infectious Irritable Bowel Syndrome.  (For those of you who aren’t familiar with this type of IBS, my doctor and subsequent research have described it this way: basically it’s caused from bacterial infections that become so severe that they damage the nerves in your intestines.  Just like regular IBS, you won’t find any visible signs of the disease in your digestive system; you just have the symptoms.  Unlike regular IBS, though, you didn’t have digestive issues prior to the infection.)  I will say this – never has anyone been so excited to receive a diagnosis like that!  All I could think was, “Maybe this monster in my gut isn’t going to kill me.”  I don’t mean that to sound melodramatic; I really thought it.  At that point, nothing had entered my mind about what the diagnosis actually meant or how it would change my life…I was just thrilled to finally know what was happening to me!  The illness-plane had just crashed into the ground and I’d made it to the “Exit” sign; how hard could the rest be?  Right?

Stay tuned for the next installment – my husband’s journey into an IBS diagnosis – over the next few days.  We hope you’ll come back to hear the beginning of his journey, and we still have so much more to share about both of our lives post-diagnoses!