Post Script

Reflections on Ostomy Life

those were the days of our lives. Chardonnay and I in Abruzzo

It has been nearly three months since I was dismissed from the hospital, and my life has been both difficult and magnificent. I am adjusting to a new way of living, and being a sick person is now my main role, and I hate it, so I try to find joy in life and abundance where I can, because I am in a lot of physical pain, and I am tired, I am so tired. I have been trying to write and nothing comes out.

I am adjusting to life with an ostomy bag. My surgery consisted of removing a stenosis in my intestine and creating a hole on my left side where I attach an ostomy bag. Before the surgery, I went online and read or watched stoma patients talk about how it made their life better, they can eat what they want, it made Crohn’s less debilitating, and I am wondering when that will happen for me? My experience has not been like that. Before the ostomy, I thought the biggest hurdle would be the psychological adjustment. And while that is a part of it, the worst part has been the physical pain. Because mine is concave, it’s very difficult to find adhesives that protect the surrounding skin, which can become irritated and infected. Sometimes it feels like someone is pouring battery acid on me. It burns, it itches, it is hard to sleep, and it is accident-prone.

Have you heard of an ostomy accident? Maybe not because we are embarrassed to talk about the dark side of having them. Those of you with babies will understand. We have blowouts and leaks. Usually, it is an adhesive issue, so it is important to find the right match for your skin type and output. My first blowout was in the hospital about 3 days after my surgery, before I had my Ostomy nurse consult, so I didn’t really know how to work the bags yet and had to rely on nurses to clean me up. I had a full-blown panic attack because I am a 49-year-old woman, and I don’t need full-time nursing. It was humiliating. The nurses were all very discreet and kind to me as I cried over and over, “I don’t want to live like this, I don’t want to live like this.” And I don’t want to live like this.

Photo by Alexander Grey on Unsplash

Since I have been home, I’ve had a few blowouts. My favorite: deciding I felt good enough to take the train to Rome to meet a friend and see the Mucha exhibit. Wanting to look cute, I wore vintage Jordache jeans, which was a big mistake. Older jeans are 100% denim, with no stretch. My ostomy is on the left side, at the waist. Sitting on the train, the hard denim pressed into the bag until I felt a warm liquid run down my leg. It was rush hour, and there was no toilet on the train. I brought extra bags and equipment, but no change of clothes. At the station, I panicked in the bathroom, trying to figure out what to do. After half an hour, I cleaned up enough to go outside, buy baby wipes and disinfectant, then went to another store—still in dirty jeans—to buy a sweat suit. Back in the bathroom, I changed clothes, disposed of the underwear, and wrapped the dirty ones in plastic. It was a tough lesson: I have to wear very loose clothes. Thankfully, in a big city station, anonymity means people forget you as soon as they pass.

I don’t want to live like this.

I can’t really talk to anyone about this feeling because it’s been drummed into everyone that thoughts about not living are the worst thing ever, and that you should reach out to a hotline if you have them. I am told I am strong. How marvelous it is that I seem to be so positive, and how, “I don’t think I could be as strong as you are if I went through this,” is something I am told over and over again. It says a lot about a person’s view of disability. The expectation is to keep these thoughts to myself and to put on a show for everyone around me for their comfort. I feel like I am expected to manage other people’s feelings about my illness. My sister makes it all about her. Some people are so deeply uncomfortable with illness that they can’t even ask me how I am. I have lost a lot of weight. At one point in the hospital, I was down to 53 kilos when my normal weight is about 62. So, of course, I get the comments from women about how maybe they need to get Crohn’s disease so they can lose weight, oh hehehehe. My favorite is when someone has some sort of diarrhea, indigestion, or even stomach flu for a day or a weekend, and tells me they were thinking of me because now they know how I feel. As if my illness is just like intestinal flu. Is it so hard to go on Google and research for five minutes what an autoimmune disease is? I am tired of explaining it. I may be out of the hospital, but I am not disease-free, and no, whatever dietary or natural remedy you want to share with me is going to work. I have tried them all, and I still relapsed. Please don’t be that person who suggest natural remedies or a diet for a condition you don’t have. It’s rude, it is dismissive, it is arrogant, and it is patronizing. As if I haven’t researched every possible solution or tried them. But as woman, I am supposed to be grateful for unsolicited advise, otherwise I am called difficult.

I am very lucky, though, when it comes to friendship. I have four very good friends here who have really supported me during this time. And I have learned a lot about boundaries and asking for help. My best friend, Barbara, took care of my home and animals so Ettore could be at the hospital with me for a few hours each day. I needed that time. She deep-cleaned the house before I came home, organized my closet, and made sure Ettore was ok. It is hard to be sick and worried about how your illness impacts others. I was very happy to have visitors every day, and my friend Sergio would come in the evenings just to chat. He was a godsend, really. I think it also helped Ettore understand that I had a strong network. He had all my San Diego friends on chat, making sure they were updated because I just couldn’t do it. He had to deal with my sister, who had tantrums and made everything about herself. She even blocked him and told him not to contact her, and then messaged him two days later as if nothing had happened. At least now he understands why I keep my distance from her. Thank you to everyone who visited me and for all the books, games, Legos, tarot cards, and more. It kept me sane.

But also thank you to the people who I thought were friends but turned out to be terrible. My 40s have been about boundaries, and I cleaned a lot of house, making my circle smaller but better. I still have some friendships here in Italy from when I didn’t have boundaries. Timespan really doesn’t mean much. I am not saying every person needs to be my ride or die, but a simple “how are you?” goes a long way. If that’s too much, I don’t think I want you in my life, and that is ok. I have always felt so much guilt when I end friendships because I think of the time and effort I put into them, but when they aren’t reciprocated, it isn’t worth it. This doesn’t mean I don’t want acquaintances and light friendships. Of course, I do, but I just don’t want to be there emotionally or on a deeper level for people who don’t give back the same energy. For the last few years, I have been just giving back to people what they give to me.

I need people to understand that just because I might have a few good hours, it doesn’t mean I am better. It takes a lot of effort and spoons to get me out and socializing. The ostomy bag is ever-present, and so I need to be careful of what and when I eat. Since I want more control over my output, I have been intermittent fasting on an 18-to-6-hour schedule. And once a week, I do a 30 to 36-hour fast to give my skin a break. This is disordered eating, and I am well aware of it. It feels like anorexia. I’m in control, but you will still see me eating when I allow it. I didn’t eat for a month, so now 24 hours feels like nothing. I’ll even have a glass of wine if I go out because I want to feel as normal as possible, even though eating out means I will definitely elongate the next day’s fasting to make up for cheating. Everything I eat is monitored and controlled for minimal pain and output. It is exhausting to live this way. It is also exhausting trying to monitor my feelings for everyone else’s comfort. I can’t talk about death in the way that I want to. I am supposed to keep this mental suffering to myself because if not, I will be a burden.

Yes, I am lucky to be alive. If I had waited a day or two more, I would not be here writing this. But can we stop with everyone needing toxic positivity just to make it more palatable? Sometimes life is painful and shit and hard to manage, and if we can’t discuss this in our own communities, what is the point?

Death is not the worst thing. Life in pain is worse. I hope things will improve, but I also know my limits. I don’t want to keep pretending everything is fine. I hope time will help, but what if it doesn’t? Then what? Do I spend the next 40 years pretending to protect others’ feelings? Do I fast so much that I waste away? Do I withdraw even more?

For now, I will focus on my health and getting physically stronger. I will accept my limitations. I will work on transforming my house into a sanctuary, and I have time to work on my garden and create my dream food forest with Ettore’s help. I said goodbye to my soul cat, Flora, three weeks ago, and as I write this, my heart dog, Chardonnay, is dying; he will probably be buried by the time I publish this. I have no fear of death, to be honest. I have a fear of pain. We give our pets the gift of ending their pain, yet we are expected to endure. At the moment, I can. My life can be full when I can express my full self. It is ok to not be ok and I grieve for the life I had.