I was talking to a good friend on the phone the other day and he was commenting on how happy I look in my Ostomy Outdoors videos. He is absolutely right! I am completely elated to be doing all the things I love again. Some days it seems like I walk around immersed in a complete sense of wonder over how good I feel. To be ill for years and then get a second chance to be healthy again is an amazing thing, and the resulting smiles, laughs and even tears of joy are the real deal.
However, when I was recovering from surgery, there were some times that those smiles were nowhere to be found. About five weeks after my operation, I got lost in a mental funk. I had some complications that had sent me back to the hospital a couple of times after the original surgery, and I had started to worry about all the additional things that could possibly go wrong. On top of that, I seemed to be spiraling into sadness in general. I had trouble sleeping and completely lost my appetite… one morning it took me two hours to eat a hard boiled egg. I didn’t feel like talking to my friends and would lie in bed in the morning, dreading the thought of getting up and starting the day. Usually a motivated person with a gazillion projects on the horizon, I became listless and had little interest in doing anything. Longing for the days before UC, I would curl up in a ball and sob until I couldn’t cry anymore, only to repeat the emotional breakdown a few hours later.
These feelings completely caught me off guard because I was sincerely happy with my decision to have surgery and was completely pleased with the results. I had no regrets whatsoever. Yes, I had gone through some complications, but I knew that the most important thing — my actual ileostomy — was functioning perfectly. I had so much to be thankful for. I had the best surgeon imaginable, my stoma was a gem, my pouch stuck wonderfully, I had only experienced one appliance leak due to wound drainage getting under the wafer, and food was traveling through my ileostomy without a hitch. How could I be so satisfied in one sense but still so sad in another? It made absolutely no sense to me.
Doug was worried about me, and after more days passed and the gloom persisted, he was the first to suggest that I schedule a session with a counselor. Truth was, I had already been considering it. I knew I wasn’t myself and wanted someone with professional experience in such matters to help me sort out the complex emotions I was experiencing. I needed a person to talk to who wasn’t one of my family members, friends, or doctors. I needed someone who perhaps hadn’t even heard of IBD or ostomies. I was looking for a fresh perspective and some insights on how to cope with the sad feelings. I had never been to a counselor before and was nervous, but knew it would be a good thing for me.
I have to be the luckiest person on the planet when it comes to chancing upon the perfect people to help me, because I struck gold once again. The counselor I was referred to through my health plan couldn’t have been a better fit. She was also an avid outdoor enthusiast and climber and was able to relate to so many of my fears. After our hour of talking, she felt that some of the varied emotions I was experiencing were part of my grieving process. However, she also felt I was dealing with some pronounced anxiety issues. I am a person who likes to feel in control of my health and many other aspects of my life. My disease and surgery had forced me to face some situations that I had absolutely no control over. This was causing me high levels of anxiety. In addition, my normal modes of dealing with stress, such as going for runs and long hikes, had not been possible while recovering from surgery.
My counselor didn’t feel like I needed more sessions beyond the initial one, but she gave me some very valuable suggestions to move forward. One was to do a series of simple exercises that allowed my mind to focus on things around me rather than cycling on anxious thoughts. She also encouraged me to get out of the house more so I wasn’t just hanging out in my living room dwelling on the worries. Her final suggestion was to sign up for an eight-week Mindfullness-Based Stress Reduction (MBSR) class that my health provider offered. Interestingly, a friend of mine with IBD had suggested a similar class several years ago, but I had never gotten around to taking it.
As I was waiting for the class to start in a month, I began working on the other things my counselor suggested. I did the mind exercises whenever my brain entered anxious-mode, and they helped stop me from churning on future worries and focus on present moments. Doug and I took a nine-day trip to southwestern Colorado to leave home behind for a while. We laughed in the car and gazed at the breathtaking mountain scenery on the six-hour drive. We walked around downtown Durango, CO, went out to eat or cooked up culinary delights at the condo, and played in the snow. It felt just like the old times before my surgery. I began to have the first inklings that life was going to feel fun and normal again soon. The final step that really helped me emerge from the gloom was returning to work. Seeing my friends there and working on programs and projects gave me a renewed sense of purpose.
Though the sadness had lifted, the anxiety issues were not completely resolved. My abdominal incision, which had appeared to be making progress, started to act up again which resulted in a new cycle of worries in my head. The first session of the six-week MBSR course could not have come at a better time.
I won’t go into a lengthy explanation of what MBSR is — there is ample information to be found on the internet. Meant to complement medical treatment, MBSR uses meditation and yoga to help one cope with pain, anxiety, chronic illness, etc. In the first class we were introduced to some mindfulness meditation exercises. In one, we took several minutes to really look at a raisin. It was amazing to see that by simply engaging my mind in careful observation I forgot to worry! We were then introduced to one of the fundamental exercises of MBSR: the body scan. The first step was becoming aware of our breathing which involved paying close attention to the feeling of each breath going in and each breath going out. Then we directed our focus to specific body parts, one by one, noticing the sensations found there. The aim was to acknowledge and accept the sensations rather than trying to control, analyze, or judge them. This was definitely a challenge for me.
When I left the first class, I didn’t realize how soon I would be putting these new techniques to work. A few days later, a portion of my incision swelled up and became extremely painful. It was time to go back to surgery. Once again I found myself lying in pre-op feeling extremely anxious. I didn’t know what to expect when I woke up, as my surgeon wouldn’t know what was going on with the incision until he re-opened it. Though far from a zen master and still barely able to do the meditation practices without my mind bouncing to many random thoughts, I still gave one of the exercises a try. I closed my eyes and began to focus all thought on the breath I was taking. Every time my mind wandered to a fear of what might be ahead, I brought my mind back to the breath. It calmed me and put me in the present moment, away from the worries of the future. At that exact moment, for that breath, I was okay.
When I woke up from surgery, I was okay too and finally had some answers. My friend jokes that my body is a snob. She says it doesn’t like gluten, Remicade, and even gave my colon the boot. Well, turns out I can add one more thing to that list. My body had a rare reaction to the internal dissolving sutures used in my abdominal wall. This is what had led to the healing woes and had even caused a small abscess to form. My surgeon removed the offending sutures, cleaned everything up, and then I got to wear a fancy contraption called a wound-vac to help heal the now-open wound on my belly. In typical Heidi-fashion, my body hated the wound-vac too and responded to the suction of the device with more pain than most patients experience. I soon found that meditation practices I was learning in class not only helped me with anxiety issues, but also helped me better cope with some of this pain.
In a period of about six weeks, my incision finally healed, and I saw my surgeon for the last time. Every day I got stronger and more pain-free as I continued to recover. I was also better able to squelch the “what ifs” and focus on the present moment with the help of the mindfulness exercises which helped resolve the anxiety issues. Though I don’t practice meditation nearly as much as I would like, and know I need to do it regularly to reap the true benefits, I know it is a technique that is always there for me. Just the other day, I did a body scan exercise and was reminded of how much I want to these meditation practices to be part of my regular routine.
The emotions after surgery were more intense than I would have ever expected. In talking with other ostomates, I have discovered that many people go through a period of grief after losing their colon — even those who, like me, were excited for their surgeries and the renewed health they would bring. Just as my incision needed the right combo of things to finally heal, so did my mind. I am so glad I pursued seeing a counselor and discovered some tools to help me deal with the complex feelings I was experiencing. I know if I ever enter another uncertain time in the future and need a little extra help to get through it, I will do so again in a heartbeat.
5 thoughts on “Healing the mind as well as the body”
Wow. What a journey you have made! Thank you for sharing your experiences and insights. I have had different life experiences, and yet I can relate to some of the feelings and worries that you write about. I know your words will help so many others who read them.
Thank you! Though it has been a difficult journey at times, I have gained an appreciation of so many things as a result of the experience. I will never look at life the same way again.
You’re an inspiration, it sounds like youre coping really well. Ive recently been diagnosed and still dont know if i will need the surgery or not but can totally understand how much pain you been through. We might look OK to people because its a disease inside our body but if we show them it isn’t getting in the way of normality we can live as normal life as possible.
Sorry to hear about your recent UC diagnosis. Hope you are doing okay. In my years with the disease I was still able to do so many things despite the illness so stay positive and strong:) For many people, their IBD is well-controlled with meds and does not progress. It is good that you are doing lots of research and reading about other people’s experiences early on. Educating yourself about the disease and treatments is so very important. Hopefully my story has helped you see that if your disease ever got severe enough where surgery was needed, losing your colon does not have to stop you from leading a very full life.
You are right that this is a very hidden disease. Even people I was close to had no idea I was sick in most cases because I never talked about it and just tried to live my life to the best degree possible with the pain and symptoms. It was crazy because right before going to the hospital with my final flare, when I felt extremely sick and was going to the bathroom over 20 times a day, people were still telling me I looked healthy– including my doctor. I had spent the summer hiking and climbing before the severe flare came on. It must have been all that mountain sunshine that gave me the outward glow because I certainly wasn’t glowing on the inside:)
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