Real Talk About Recovery

Recovery…it’s not something we talk about enough. Surgery, like the classic Bollywood love story, takes precedence but the moment the couple gets together, they live happily ever and we never hear about the rest. Same thing with the rush and excitement of surgery. We hear all about it but the reality is we never hear about how arduous the recovery is.

Today marked a month since my surgery. It was quite an emotional day for me. For those of you just tuning in, I had an emergency laparotomy due to multiple bowel obstructions from previous surgical stapling and complications caused by scar tissue and a hernia strangulating my bowel and tethering itself to my bladder and uterus. I suspect this had been going on for years: from severe constipation to blockages, many physicians didn’t believe how sick I was and refused testing. I felt like every single physician I spoke to was saying, “Tina, this isn’t normal with an ileostomy.” And when one physician finally believed me a couple years later, she did all the testing and prescribed multiple motility medications to help me go. Moving from one test to the next, I felt myself banging my head against a wall wondering why I felt so obstructed and why no test was corroborating what I was feeling. It was heart-wrenching and soul-sucking at times and I would come home and cry hearing my doctor yet again tell me there was nothing found on my latest MR enterography, scintigraphy, ileoscopy, what have you.

And every time I would take the Trulance, the Linzess, the Motegrity, the Mestinon or the Lactulose (pro-motility agents & laxatives), I would hope and pray I wouldn’t wake up vomiting with an obstruction or end up perforating with the force of these medications. Between the ostomy bag leaks from explosions of bowel movements and the twitching side effects of Mestinon, I felt unable to continue to hold on. My mental health wore on me as I started an anti-depressant in the middle of an already challenging pandemic.

That’s when I landed in Pittsburgh. Lo and behold, in the middle of an IBD conference I was speaking at, I kept running back up to my room to vomit from a small bowel obstruction. I don’t know how I gave that talk that day but I did and thanks to a friend and fellow patient advocate, I was rushed to the ER at UPMC, where I was quickly admitted and headed into surgery a couple days later.

While things went well out of surgery, once I started eating solids, I developed a post-operative ileus, meaning my stomach and intestines stopped working and everything was distended. I remember throwing up 7-8 times that day, unable to process anything. The doctors hit me with all sorts of medications and pushed in yet another NG tube until the ileus resolved. Once we re-advanced my diet again, I was finally able to be discharged 18 days after the whole ordeal began.

I have been home in NYC the last 10 days or so and as I try to pick up the pieces of my life, school and advocacy work, there’s trauma awash. I struggle to open a book, to join a meeting, to write a post, to listen to a lecture without wondering what in life is as important as survival…survival from a 7 hour surgery that knocked the wind right out of me but also saved me from a bowel perforation, loss of tons of bowel (short bowel syndrome) and full-blown sepsis. 

As if that trauma isn’t quite enough, every time I eat a bite of food, I wonder if my intestines will block. Every time I see a bottle of Lactulose or Magnesium Citrate, I taste all of it and want to gag. Every time I feel gassy or bloated, I wonder if the SIBO (small intestinal bacterial overgrowth) is back. And every time I get a wee bit nauseous, I wonder if the NG (nasogastric) tube will be put back in and if I’ll end up back in the hospital being rushed in for surgery.

Trauma is real and is part and parcel of the recovery process but it is important to keep reminding ourselves there will be good days and bad days and everything in between. Healing is never linear and while I keep telling myself that, it isn’t easy to lean into that feeling. I always feel like I need to be doing more, being more and feeling more. But the reality is we have to throw all of that out the window, allow ourselves to grieve and just be as our insides are on the mend.

…And that’s where I stand today and how I own my Crohn’s in the midst of the turmoil I have faced this past month. I will get there slowly but surely. Onwards and upwards, my friends, and here’s to love, light and healing this holiday season for all of us! 

As always, I love hearing from you all. Feel free to drop comments or send a message!

Wishing you all a very happy & healthy holidays and a blessed new year!