September 23rd marked exactly one year since my ileostomy surgery. One year since I’ve had to learn to live with an ostomy bag. One year since I was able to hit the “reset” button and start healing from a Crohn’s flare that almost took my life.
I’d had major surgeries before, but this one was different. Before heading into surgery, I was very ill; I’d stopped eating due to severe pain and nausea, and that meant losing a lot of weight and muscle mass. I was bedridden for weeks leading up to the surgery, hospitalized, and placed on home nursing care in-between (my home nursing experience is a story for another day, by the way). Going into my ileostomy surgery, I was malnourished and weaker than I’d ever been.
When I got home from my post-surgery hospital stay, I could barely walk up the three steps leading to our back door. I got winded just doing the simplest of tasks. I was still battling debilitating pain. I was incredibly weak and noticeably underweight. I also had a bout of hair loss post-surgery (the last thing a girl needs when already battling loss of self esteem!). All of this, while trying to accept my new circumstance: learning to manage an ostomy pouch.
I wish I could say I was completely positive and hopeful. But I was sad and depressed. I was in mourning for the life I once had, but had now lost. I was having trouble accepting that this was my new existence. Everyone would say to me, “But now you’re going to get your life back!” While there was truth to this, it wasn’t much of a comfort. I still felt an overwhelming sense of grief and loss. And while in the past, I’d always bounced back from my flares and surgeries with optimism, this time, I simply didn’t know how to shake this dark feeling.
My healing was slow and at times, felt practically nonexistent. I was barely able to handle basic household chores. My recipes, blogging, and writing projects had come to a screeching halt. I wasn’t even up to returning business emails (I still have unanswered emails sitting in my inbox…my apologies to all those I still haven’t replied to!). Prior to this life-changing event, I had goals and lists of tasks I’d planned to tackle. I thrived on being productive, so losing the ability to do so was very difficult to reconcile in my head.
To go from being someone who enjoyed a busy schedule to someone who is virtually useless was crushing to me. And I didn’t know how to rationalize it in my head. I didn’t know how to make peace with my new situation.
When speaking with others who’d gone through major surgery before, I was told my that sometimes it could take up to a year before I would start feeling like myself again. So I gave myself a timetable: I’d give myself one year to properly heal, and in the meanwhile, I wouldn’t beat myself up for all the things I couldn’t do. I wouldn’t beat myself up for all the moments I couldn’t get off the couch. I wouldn’t beat myself up for all the tasks I failed to accomplish on a daily basis, for continuing to miss out on life events, for all the feelings of self-doubt, failure, and sadness.
But now, “one year” has come and gone. And while I’ve made progress, I’m still not where I want to be. The digestive pain has subsided (thank you, apple cider vinegar and digestive enzymes), and I’ve regained some of my strength. I’ve also gotten more used to living with an ostomy. However, I can’t say I’ve completely bounced back. I still struggle with it everyday.
In addition to the mental part of accepting the idea of living with an ostomy, I still battle a host of symptoms I’m working on resolving, many of which worsened during and after my hospitalizations: daily migraines, debilitating fatigue, skin breakouts, anxiety, nausea, and areas of Crohn’s inflammation that still continue to plague me. (Contrary to what some people think, it’s not possible to “remove” or “cure” Crohn’s by means of surgery — or any other method for that matter. So, despite surgery, I still have a lifelong disease for which there is no cure. And yes, I still have to continue to eat an anti-inflammatory diet to help manage all of this. I only mention this because I’ve had people assume my disease was magically gone thanks to my surgery. Unfortunately, as much as I wish otherwise, that’s not the case and not how it works.)
Self Forgiveness for Healing
I realized that giving myself a one-year-mark was not the most logical approach I could have taken. With a chronic illness, healing is not linear. There are ups and downs, and often, I feel I’ve taken one step forward only to then take what feels like ten steps back. Some moments I feel like my old self again, and others, I regress back into feeling helpless and useless. There are days it takes me hours to get my day going, and there are days when I accomplish virtually none of the tasks I’d planned because a million unpredictable symptoms get in the way. It’s come to the point where there are days when marking just one task off my list is a stunning victory.
It’s beyond frustrating. I’d repeatedly beat myself up for not being more successful, for not making better progress. But I’ve learned that beating myself up over it is counterproductive to healing.
So instead of giving myself a timetable to “get my act together,” and then punishing myself when I don’t meet my own self-assigned expectations, I decided to start forgiving myself. I decided to forgive myself for not being the person I once was, for not accomplishing all the daily tasks I used to do easily, for not accomplishing my professional goals. I decided to forgive my body for “betraying” me and forgive my mind for all the thoughts and feelings of guilt, disappointment, and loss of self esteem.
I still battle this everyday. Now to be clear, by no means am I giving up on any of my goals or plans, whether personal or professional. In fact, it’s often those goals and desires that push me everyday. However, I realized that healing and acceptance of my new life will only happen by allowing by body the time it needs, and understanding that my “timetable” is my own and not to be compared to anyone else’s.
As much as I want to be in control of it all, there are simply parts of chronic illness we cannot control. Accepting this reality is actually quite liberating. It’s a strange balancing act: fighting and battling illness everyday while simultaneously making peace with it.
Gratitude for Healing
I’m also regularly reminded that gratitude remains an crucial component of healing, as well as a coping mechanism for getting through each day. It’s critical to express gratitude for what seem to be even the smallest of blessings — those things most of us take for granted — to keep grounded and reminded of what’s important.
Sometimes I’m “mad” at my stoma, for example, but then I remember how it saved my life and allows me to keep going. I’m getting better at accepting my ostomy and appreciating the new freedoms it allows me.
Looking at “the bright side” may sound cliché, but it really does put everything in perspective. While I struggle with having enough energy to do all the things I want to, I try to take advantage of the random bursts of energy I do get. I appreciate the “good moments” more than ever, and with all the cards stacked against me, I try to take pride in crossing just a couple tasks off my list every day. I’ve been able to get back into the gym (periodically, at least), and my skin is starting to heal. And my hair? It’s growing back! Granted, it’s growing in terribly funky and strange (kind of curly, but kind of not???), making for lots of bad hair days. But either way, I’m grateful that it’s growing back, no matter how funny I look in the meanwhile.
So as I embark on a new year following my one-year “ostomy anniversary,” I take with me with these reminders that self forgiveness and gratitude are far more effective healers than harsh expectations and negative self-talk.
Whatever it is you’re dealing with today, I hope you know that your timetable is yours. It’s not meant to be compared to anyone else’s. And strength isn’t just about pushing through another day to meet everyone else’s expectations. Sometimes, strength is about finding ways to love and accept yourself despite what you think you’re “supposed” to be doing.
It takes some effort to remind myself to surrender from time to time, but I’m learning that feeling of surrender is quite sweet.
It’s a strange balancing act: fighting and battling illness everyday while simultaneously making peace with it.