Daily Life | IBD | Ostomy
Weight is a sensitive subject. Weight loss is complimented and even congratulated, whereas weight gain is often looked down upon as the result of poor eating habits or bad lifestyle choices. Accepting your diagnosis, flares/symptoms, painful surgeries, and medication side effects are only a small list of what life looks like to someone chronically ill. Your physical appearance can change so drastically that you do not recognize yourself in the mirror. We tend to be judged on our outward appearance well before we have the opportunity to explain it. The saying “you can’t judge a book by its cover” is all too fitting when applied to medically-induced weight fluctuation, which is something many of us with IBD endure.
For me, the definition of a “good year” health-wise vastly differs from someone in good health. For me, it’s one with no “major” surgery, single-digit numbers of ER runs, and less than a handful of short-term hospital admits. Having a neurogenic bladder makes me indefinitely prone to UTI’s from catheterizing. In my having just a handful of common strain bacteria, getting a UTI that could easily be cured by a simple round of antibiotics is nothing in comparison to some of my other infections that aren’t so easily rectified.
It took me two years after my 2011 ostomy surgery to start living my life again. I maintained a “good year” status long enough to have started going on daily runs with my dog, taking my kids to the park, hiking, and taking & teaching dance. I was able to work while keeping house and mothering, which was HUGE for me! I finally looked like myself again. My hair was thick & shiny, my skin looked great, and I even had muscle tone! This bliss lasted from 2014-mid to 2017.
In 2017, I lived half of the year doing the happy things I had been doing during those few good years I got back. By that fall, I barely had enough energy to do the minimal day-to-day. My husband and I juggled two two-year-olds in diapers along with our older children’s needs. ER runs became increasingly frequent, and I had an excessive fluid loss from my stoma and vomiting flares. Eventually, my outside started to reflect all my internal issues, and I was, once again, the shell of the person I had been for a short few years. Similarly, 2018 was a rough one. I spent most of that year immobile and in a wheelchair or bed-bound from various issues. I was diagnosed with medication-resistant bacteria in my kidneys. The IV treatments needed to fight this required a PICC line that later changed to the chest port. I re-started on home health care as well.
In 2021, I am still fighting this infection and several others that try to come and crash the party. That July, I had major abdominal surgery with many post-op complications. I endured a hematoma, abscesses, pockets of fluid in my abdomen, and had large masses on each ovary. These issues compressed my vital organs as they all fought for space in my abdominal cavity. This caused my body to swell up significantly and bloat even though I was not eating most of the time. Only a few months later, I required yet another open abdominal surgery to clean out and repair many of the issues that failed to dissipate with lesser alternatives. That surgery fixed many things yet also brought on a whole new list of post-op complications, including a new hematoma and an obstruction, all resulting in a three month admit, two on an NG tube and a g-tube placed a few days before discharge. I had been on the NG-tube so long my body could not digest even a few sips of water, so I was placed on TPN to supplement my nutritional needs. This is still my reality: no eating by mouth, relying on clears and TPN as my only intake.
Late 2019-early 2020 I again began to swell, gain weight, and bloat at a very fast pace. This upward trend on the scale was maddening! I was no longer looking large but obese! I weighed the most I ever have in my life, including what I weighed at 9 months pregnant, and would wake up 2-4lbs heavier each day. It didn’t make sense. I wasn’t eating and was constantly vomiting, yet I was rapidly gaining weight. How was that possible? After months of this confusion, it was found on a scan that I had developed internal fluid collections in my abdomen one pressing into my left kidney, and was diagnosed with hydronephrosis. I had the collections drained and done so 5 more time’s since and had a stent placed in my kidney to allow it to drain properly.
I continued fighting to break through the surface. Slowly but surely, I saw the pounds melt off, and there was no diet (you can’t be on one if you don’t eat) and no exercise. It just happened. By the end of 2020, I could recognize myself in the mirror again. I could wear clothes that had not fit for years. I also had more flexibility and movement on the dance floor.
Now, unfortunately, I am in a new chapter in 2021. I weigh less than I ever have in my adult life and am rapidly losing weight with no explanation. Just as I gained weight before, I now wake up 2-4lbs less than I was the day before. Now living both ends-too fat or too thin, I can’t say which is worse. I am blessed with a loving husband who is a very wise man and never once has slipped and commented on these weight fluctuations. He has seen all I endure and understands this life far too well.To all the other women with IBD facing this struggle, I’ll end with a favorite quote of mine: “your family doesn’t need you to be perfect; they just need you to be here!” It can be isolating to endure these battles alone, so please know many others are facing this battle alongside you!
To see a video diary chronicling Theodora’s more recent health journey she writes of in this piece on her vlog Pestana Life/La Vida Pestana click here:
I am amazed at all you have been through! And you have done so with such a positive outlook! You are an inspiration, granddaughter.