Canned-aversary: a gut wrenching story

Warning: This post will be boring , uncomfortable to read, or the definition of ‘TMI” (Too Much Information,) but it will be cathartic for me to get the experience down and out of my head.

2 weeks ago, we packed, loaded the car, and expected to head to Provincetown, MA with the dogs, where we would spend a week celebrating our 20th wedding Anniversary (October 2nd.) We had made reservations, for each night we were going to be there, at several of our favorite restaurants. I had secretly commissioned a local piano player to learn our song (“A Change in My Life” as performed by Rockapella) which he agreed to play as part of his song set at one of his piano nights. Jeffrey knew noting about it. There was going to be champagne at the ready.

Then life happened.

On Sunday October 29th,  I awoke with tale tale signs of an intestinal blockage. I had been having some minor gut issues the week before, but I thought they had resolved.

(Quick Aside: I have chronic Crohn’s /IBD, Gastroparesis, and my entire colon was removed in 2000, so I’ve been functioning with just a small intestine for 19 year. The disease is kept in check with Remicade infusions every 8 weeks, herbal supplements to aid in digestion, and maintaining diet tailored for easier digestion.)

I instantly went into reparation mode, because I did NOT want to have gut issues on vacation. I stopped all solid foods, sticking to bouillon, apple juice, hot tea and water as sustenance, rested as much as possible, and upped my herbal supplements geared towards healthier gut activity (and one or two other tricks I won’t share here due to the gross factor.)  Unfortunately, my condition worsened, and the pain and discomfort grew. Optimistically, we postponed our departure day, hoping for a recovery, but it never happened. 3 days into agonizing gut pain, laid out flat, unable to walk or barely sit up, we threw in the towel and cancelled all of our reservations. Jeffrey unpacked the car as I writhed in pain and frustration for the remainder of the week. I had a Remicade infusion scheduled for the Monday after we were to return from our trip, so I figured I could hold out until then, when I’d be seeing my Remicade nurses and hopefully my gastroenterologist.

Big Mistake.

The Monday morning of my Remicade infusion, I crawled out of bed and endured searing pain as I showered, hunched over, in too much pain to stand up straight. By the end of my shower, I was even more exhausted and the pain had increased. I collapsed onto the bed just in time to launch into a fit of dry heaves, causing my abdomen to spasm in mind numbing waves of pain and tightness. It literally felt like my guts were abut to explode and spill out. In a panic, I screamed out to Jeffrey to call 911, something I had never done before in my life. By the time the EMT and Ambulance arrived, the worst of the gut spasms had subsided, but I was terrified to move. After a vitals check and brief discussion with the EMTs, I decided to take my first-ever ambulance ride to the hospital. While I was probably feeling well enough at the moment to ride to the hospital with Jeffrey, I chose the Ambulance for 2 reasons: (1) I was afraid I’d have another attack on the way to the hospital and (2) I figured going by Ambulance would get me seen by a doctor sooner than waiting in the emergency room for my turn to be seen. (I couldn’t have sat up for any length of time without being in massive pain, and I am not a fan of moaning and screaming in public.)

Once I was out of the ambulance and in a temporary ER room, per protocol, (not my first time at the intestinal blockage rodeo, y’all…I knew the routine) the doctor ordered an IV be placed so they could administer morphine to ease the pain. Unfortunately, I’m a hard stick under normal circumstances, having tiny veins, and I was dehydrated from a week of this gut attack under my belt, so getting an IV in me, or even a needle to draw blood, took 4 different people and no less than 9 attempts. All the time, I’m in pain waiting for my abdomen to explode.  By the time they got the IV in me and the morphine flowing, I was fighting dark thoughts that I’d rather die then experience another moment of this pain. As the morphine flowed through my veins and the waves of pain subsided for the first time in a week, the medical staff filed out of the small ER room and, with a gentle compassionate squeeze of my hand by one of the nurses as she left, a silent moment of reassurance and sympathy shared just between us, the tears of relief, fear, and realization that I had survived this experience, began to flow uncontrollably.  As always, Jeffrey was there by my side, a bastion of strength and support, holding my hand, and letting me feel what I needed to feel, no doubt suffering in his own way, watching me go through all this, feeling just as helpless as I did.

I was sent for a CT scan, then waited in the small dark ER room until a proper hospital room was eventually freed up. Once admitted, I was hooked up on IV fluids and morphine, placed under strict orders of NPO (a Latin phrase that translates literally to English as “nothing through the mouth” – so no food or beverages of any kind) and that’s when the flow of doctors and nurses began. Over the course of the next two days, it was discovered the blockage was caused by a twist in my small intestines (as opposed to adhesions or impacted food matter), that I had a Kidney stone that was blocking liquid passage from my kidney into my ureter tube causing inflammation, 2 different bacteria in my blood, and a small cyst on my back that was infected. My body was basically in crisis mode, under attack from 3 fronts: my back, my kidneys and my intestines. To make matters worse, my gout chose this occasion to flare up in both feet, making it agony to put any weight on my feet. Throughout the remainder of the week, I was pumped full of antibiotics, administered Prednisone, given Morphine injections around the clock, and wheeled to the OR and placed under sedation on two different occasions:  once to place a stent in my ureter to prevent the kidney stone from blocking the flow;  and once to have the cyst removed from my back.

Once these two conditions were neutralized, my intestines followed suit, and I began to recover, slowly. By this past Friday, all the telltale signs were there that the twist had resolved itself.  I had been pain free for 24 hours, without the aid of Morphine; successfully eaten my first solid food with no repercussions (scrambled eggs); everything seemed to be functioning normally again; the gout went dormant so I could walk, pain free, again; my vitals were good; blood work was clean; and I was feeling well enough to return home, which I did Friday afternoon, full of relief, gratefulness, and joy that the I had survived yet another episode, avoiding intestinal surgery and stalling the eventual endgame, when my intestines finally shut down and I will have to have surgery to have a permanent ostomy placed.  (I know this is inevitable, but I am trying to stall for as long as possible, and hopefully at least another 6.5 years, at which time  I can retire.)

I had my first full night’s sleep last night in over 2 weeks, husband and dogs snuggled close to me, and awoke happy to be in my own home again, with my family, free from needles, IVs and Hospital Staff taking vitals and, most importantly, pain. I am processing a lot of emotions and it will take me a couple weeks to re-nourish my body, regain the strength and stamina to do more than transition from room to room around the house, and for the echoes of abdomen pain and soreness to fully disappear. Also, I have to push through the fear of putting food into my body again, ever vigilant for the slightest quiver, spasm, or tightness that might indicate I am not as far out of the woods as we are all hoping.  I will also have to follow-up with my urological surgeon to have my kidney stones removed, once I am well enough to undergo the procedure, as well as get a make-up remicade infusion asap.

It has been a daunting, taxing, painful, and terrifying two weeks, but I am trying hard to focus ahead on healing and feeling better, and getting back to what passes as a normal life for me.

Thanks for letting me share.

Stay healthy.

P.S. Thanks to the always thoughtful AM of From My Brain to My Mouth for our Anniversary card! It was a bright spot in our otherwise dismal non-celebration.

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18 Responses to Canned-aversary: a gut wrenching story

  1. Urspo says:

    Good for you to write and share this – may it be a therapeutic endeavor.

  2. Linda Practical Parsimony says:

    How awful for you. I just found out I have gastroparesis and was wondering when the rest of my gastrointestinal system was going to quit working. I hate you had such pain. But, I am happy you had snuggles, something I never have. Keep getting better.

    • Sassybear says:

      I’m so sorry you have the gp. I was diagnosed with gastroparesis last year, which was a fun addition to the Crohn’s and Gluten Allergy. It’s like a frikkin’ exercise in torture trying to regulate my diet to accommodate all 3, but I’m managing. I hope you find proper dietary habits relieve you of any discomfort the gp causes you. We can be gp buddies now! (And I am very grateful for the luxury of a good and support group of snuggling buddies!)

  3. Not a boring read at all. I have had kidney stones myself, so I can imagine the pain you were feeling. The difference with me is that my pain was just one day for each case I had, not the two weeks that you had. I am glad that you are on the mend and that you are at home with Jeffrey and the dogs. As Dorothy said, “There’s no place like home.” Stay well, and thanks for letting all of us know.

  4. truthspew says:

    Wow – reading this story got me to thinking like I always do. It is then I discovered our gut is essentially a nutrient absorbing muscle. So the spasms make sense. I also know that lack of sodium, potassium, magnesium et al will cause all sorts of issues because they are part of the signalling system used by our nerves.

    It’s funny – this past Monday I saw a new Doctor. i like this one, she started as an engineering student and then went into medicine. I am the inverse – thought seriously about going into medicine but watching those I love die while doctors couldn’t do pushed me towards Information Science instead. I also love how the doctor picked up I’m sort of a math whiz. She’s a keeper. Now this coming Thursday I get to see the Orthopedic folks. Let’s see how I get on with them.

    And gross doesn’t bother me. I don’t know why it doesn’t but all I know is if people really knew how gross the world was they’d just kill themselves.

  5. javabear says:

    Good grief! You should have been in P’town!
    I’m so sorry you had to endure all that. Happy to know you’re on the mend. Good grief. And good luck!

  6. Old Lurker says:

    JFC indeed. That story was many things, but it certainly wasn’t boring.

    I hope you heal up well and get back to your normal life, too.

  7. glen says:

    My heart aches for all that you had to endure. I am glad you are improving. I cannot imagine what this must have been like and the pain you describe makes me cringe. All I can say is I am so sorry. Glad you are able to snuggle with your pups and Jeffrey. Hang in there. I missed you and was worried that something was wrong when you did not post. Love you

  8. Sluggy says:

    How dreadful! But at least this episode is over now….you survived and have your family there to comfort and take care of you. I know what it’s like to have a chronic, no cure for it illness that strikes without warning so my heart goes out to both you and Jeffrey.
    Maybe you can have a make-up Anniversary trip to P-town next Spring?

  9. Oh my! I had no idea all of this was going on. (((hugs))) I was tearing up a little while reading all of this, and I hope you’re already starting to feel better even if it’s only a little bit at a time.

  10. JFC! and here I had visions of you two enjoying p-town! I am glad you are still here on earth, sassybear. but I grieve that you have to go through all this shit just to live. LOVE YOU!

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