ileostomy – My Intestines and Me

Living a life of “for nows” in the context of “forever”

April 9, 2018April 11, 2018 cberenblum971 Comment

This past Sunday morning, I pulled out yet another command tape strip from the box at the top of my closet. When I moved into my room in January, I decided that the posters of paintings on my wall could be hung with blue tac. Over the course of the semester, they’ve slowly fallen, corner by corner, off the wall, leading to the slow replacement of blue tac by command strips. Before pulling the box out, however, I took a second to decide whether it was even worth the 5 seconds it would take me to replace it. I’m moving out of this room at the beginning of May, putting all of my things in the back of my car, and driving home, never to spend a significant amount of time between these four walls ever again. My Type-A personality overpowered me because a half falling poster on the wall is unpleasant to look at, but the hesitation was there none the less.

College, especially in a scholarship program like mine, involves a constant stream of ‘for now.’ Most evident is the constant shift in living situations. My freshman year I moved from my dorm into a hospital room, into a hotel room, back into my dorm and back to a different hospital room, and then into an Airbnb to recover from my second surgery. That summer, I went Home then (the capital is important here — “home” has taken on a new meaning), moved to New Orleans, and back Home. Sophmore year, I spent one semester at one university, had to spend a couple of weeks at Home because of shingles, and then the second semester at a different university. That summer, I went Home, then moved to a room in London, then back Home and then to a different room in London.

I’m not just great at packing, however — this constant shift in location mirrors a constant shift in friendships and extra-curricular activities. It’s a constant shift in philosophy and mindset, in habits and in what direction I need to sleepily reach out in when trying to turn off my alarm every morning. I don’t know where I’ll be in May of 2019, and, because I want to go to medical school, where I’ll be the year after that. I don’t know who my friends will be, or whose name I’ll smile at when it comes up on my phone. I don’t know what my email signature will say, or what colors will fill up the rows of my Google Calendar. Life as a young adult is a collection of temporary situations, as concurrently unnerving and exciting as they may be. What I do know, however, is that I’ll have Crohn’s Disease.

It’s strange to live in a permanent state of temporary situations with my disease as a constant. I know that in May of 2019 I’ll still be trying to sleep eight hours a night and constantly eat quality food. I know that I’ll be thinking about how my digestive system is working most hours of the day and that I’ll be trying to get regular exercise because it lowers the risk of a flare. I know that I’ll probably still be immunosuppressed and putting on facemasks whenever I go into a high infection risk environment. I’ll still be having regular blood tests, and trying to moderate my stress.

Is it odd that I find comfort in this constant? Sure, having Crohn’s Disease for the rest of my life isn’t the best card to draw. But as someone who values stability and consistency, knowing that Crohn’s and everything it implies for me will be a constant almost gives me a safe place to go when the cardboard boxes of moves overwhelm me. I won’t have all of the books on my bookshelves in each place I sleep in, but I will have my diagnosis. Most of my habits will stay the same, while the friends I look to for an understanding of them differ. If I build a living room of the constants in my life in my brain, Crohn’s Disease is a red velvet couch — it’s the centerpiece that you really can’t put much other furniture around.

As I write this sitting in a restaurant I won’t regularly visit after another year has passed, I take a sip from the glass of water next to me. ‘Hydration is important to decrease kidney stone risk’ pops up in my mind as others’ fundamental values might — it’s there, I’m aware of it, but it’s a thought that serves as more of a safety blanket than a revolution.

Reflecting After Two Years

March 7, 2018 cberenblum971 Comment

Alright, first things first — for a while, I think this blog is going to turn more into a place of reflection and less of a place where I provide advice (although reflection can lead to some helpful observations). I’ve been putting a load of my helping energy into the Patient Advisory Council of ImproveCareNow, which has become an outlet for the advice I can give. Two years post the emergency room visit, however, I’m finding that I need a space to reflect on who I am and how that experience changed me.

I’ve had people tell me that I dwell too much on 2016. How could I not, though, when 96% of my most life-changing experiences up until this point happened over the course of those 12 months? Yes, going to college is life-changing. Moving to the United States — also life-changing. But having your body stop you in your tracks after years of lack of self-respect? That’s revolutionary.

This Thursday, March 8th, is the two year anniversary of when I Ubered to the hospital with so much pain that I legitimately could not stand upright. I had attempted to manage the daily pain with over the counter painkillers and balanced going to class with lying down as soon as I could get back to my bed and falling asleep for 14-16 hours a night. At that point, I was only able to stomach plain chicken breast and mashed carrots, which I was asking my friends to sneak out of the dining hall for me — even making my way into that loud, crowded space was too much to ask. On March 8th, 2016, I went to class in the morning and was out of breath as soon as I got there. After class, I sat down on a couch and quickly realized that I was in so much pain I would be unable to get up. The pain fogs my memory from there — somehow I managed to get to my dorm and realized that I could not walk up stairs or stretch out my body. Somehow I managed to call an Uber and make it to the emergency room. Somehow I ended up lying on a trolley shaking from the amount of pain I was in. Until the ER doc told me that my inflammatory markers were through the roof and I was going to likely have surgery during the next week or so, I was still in denial.

Prior to this point, I had not been kind to my body. I was not sleeping enough and in normal enough intervals. I was not being meticulous about what I ate. High-school had instilled such a degree of stress in me that I cherished the 40 min bus rides home because carsickness gave me an excuse not to study. To make matters worse, I thought that my social life had to be perfect and would turn into a ball of anxiety whenever anyone was upset with me. I hadn’t had a terrible flare up of my Crohn’s Disease for the past 4 or so years, so I didn’t remember the pain or the exhaustion (a common problem in pediatrics). I was ready to ignore the warning signs my body was giving me and push it to its limits, chronic disease or not, for the sake of success (whatever that means). I was in complete and utter denial. By the summer after my senior year (23 college and scholarship applications later), I had completely shut off my ability to process what was happening to my health.

There’s nothing like 3 and a half surgeries and a case of severe shingles to really knock you back to where you should be, though. I’m almost grateful that my recovery was not anywhere near as easy as I had hoped, that only one of those surgeries was expected, and that I got shingles to boot. Without all of that, I don’t know that I would have been able to realize what really mattered to me, figure out my relationship with my body, and understand what my priorities should be. I’m not sure that I could completely process this all last March — the memories were too fresh and I could almost still feel the IVs in my arms. Two years later, I’ve had that time. Here are some things I’ve learned.

Sleep and good nutrition should come in at number one on your list of priorities. I don’t care that you have a midterm. It can wait so you can get 8 hours of sleep. Try learning some better strategies to focus during the day. There is always time for this. Don’t convince yourself that there are more important things in your life.
The people who matter are those that will make time for you and come to your bedside because they know you need them, and not because you’ve asked them to. Don’t let them go.
When all of your friends know you as someone who’s sick, it can be difficult for them to adjust to your health. You have so much more energy! Life is exciting! You don’t have to flake on every dinner plan! Ease them into it.
Listen to what your body needs. If your eyes are shutting, don’t drink another cup of coffee. If you’re hungry, don’t deny yourself a meal to save time. If you need to skip a class because your brain needs you to, do it. No academic curriculum is worth your mental health.
Respecting your preferences is paramount. If you don’t want to engage in the same kinds of social activities as your friends, don’t. You are wonderful because of who you are. Respect yourself for that.
When you’ve had a serious medical event, people tend to flock to help you at first, and then slowly drift away as your event continues to extend. This is okay. Different people have different tolerances. Maybe just don’t marry or fall in love with any of the ones who can’t handle it.
If you find something you love, stick to it, even if that means that you have to let people down by committing less time to things that don’t interest you anymore.
Having your shit together can be intimidating. Don’t apologize for that. You are respecting what you need to do for your own well being. Stick to the people who will respect it (and joke about how much of a mom you are).
One of the most powerful things you can do for others and for yourself is to turn your negative experiences into advocacy. Help other people with what you’ve learned. It’ll help make you happier and process better.
Surgical recovery is hard and disheartening and can completely change the way you see your body. If you need to go see someone, do it. Treat a therapist like you would the rest of your medical bills — your mind is just as important.
Laughing about it is okay. Yeah, I have nerve damage from shingles in my right hip. Sometimes it sucks that it hurts to wear a backpack. But hey! It makes for a cool party trick when my friends tap my hip and I can’t feel it. I promise this is a lot funnier said out loud.
If you need to stop processing your experiences while they’re happening, that’s okay. Keep them in a little backlog of things to think about. You’ll pull through.
Be proud of yourself for overcoming all of the adversities you’ve been presented. You are capable, you are strong, and you can continue to persevere.

Ostomy Tips and Tricks (Having an ostomy in college)

August 31, 2016August 31, 2016 cberenblum971 Comment

I’m so sorry that it’s been so long! I’ve been moving back into school and starting classes, which has taken more time than expected.

I want to do a post all about my surgeries, but I felt like this post was more pertinent and could be more helpful, rather than just making a huge post about my surgical experiences.

I only had an ostomy (ileostomy, to be exact) for two months, which is decidedly less time than many people have them for. Obviously, I was very lucky to only have to have it for this long, but I should say that not having it for longer meant that I never really felt a need to get totally used to it — I knew it was temporary, so I didn’t put in as much of an effort as I could have.

Regardless, I did learn a lot about having an ostomy, especially about having one on a college campus, including some tips and tricks that I thought I would share.

Pay attention to the pants you’re wearing when your ostomy nurse comes to mark out the place for your ostomy before surgery. I really wish someone had told me this, because the pants I was wearing were not the rise I usually wear (they were rather low rise). Pick your most commonly worn pair of jeans or shorts and wear those when the nurse comes. The nurse will mark the place for your ostomy based on the rise of your pants, so mine ended up being really low on my body and made it hard to wear a lot of the clothing I was used to wearing. Because it was so low, mid-rise jeans hit just at my ostomy site, which made them both painful and troublesome to wear.
Get ostomy bands/belts before coming out of surgery. If you’re told that you will have an ostomy as soon as you come out of surgery, make sure to buy these beforehand. My favorite were from OstomySecrets. These will make you feel ten times and secure and will help to keep your ostomy bag against your body. I personally used the wraps, which have pouches on the inside where you can insert your ostomy bag, but they also sell underwear with pouches, as well as bathing suits. I had a black wrap and a nude one, and I would rinse them in the shower on a daily basis and then hang them up to dry.
There are various options if you have leaks. There are many many YouTube videos on this subject, so if you’re having issues with leaks, definitely check those out. Personally, my ostomy nurse ended up giving me concave wafers, which curve inward pressing against your abdomen and essentially press the ostomy up and make it protrude. I also used a belt, which had a similar effect. The last of my solutions for leaks was having a ring rather than a paste. Other than just being a lot easier, the ring seemed to provide a better seal for me.
On the same thread as the last tip, form a good relationship with your ostomy nurse. Ostomy nurses are a godsend when you need to deal with an ostomy. They can give you free supplies if your shipment is late, they’re great at teaching you everything you need to know about your ostomy, and they’re just generally nice people. Having a good relationship with my nurse meant I had someone to call with whatever issue I had, and I could usually just call and stop by the clinic whenever I needed anything.
Find a good, private place to change your bag. Thankfully, I had a bathroom that I only shared with three other people, but if you’re not gifted with this option, there are a variety of places where you can change your ostomy. If you have your own room, you can do it there. I have heard of people who change their bags while laying on their beds. If you have a roommate and are uncomfortable changing it in front of them, pick a time in the day when they won’t be back for a while, or find a disability stall with a sink in a public restroom. It is completely feasible to create a backpack with all of your ostomy supplies and change your bag in front of the sink.
Be prepared in case of leaks and make a kit to take around with you. Leaks happen to everyone, so it’s better to have a kit to be prepared in the case that they do happen rather than pretending there’s no chance they’ll happen to you and not being prepared. Most ostomy supply companies will send you a small kit with your first order, but make sure to always have this kit stocked with all of your favorite supplies and everything you would need to change your system in the case of an emergency.
Skirts and dresses are your best friends. If you’re comfortable wearing skirts and dresses, I would really recommend them for while you have an ostomy. Skirts that cinch at the waist and then flounce out are the best, or dresses that do the same. They don’t press on your ostomy, and they make it easy to hide your bag if it’s been a while since you emptied it.
If you’re not comfortable wearing skirts and dresses, putting your ostomy wrap over your pants or shorts can be a good solution. I found that when I tucked my bag into my pants, whatever I produced wouldn’t make its way down to the bottom of the bag, and could produce leaks. I would therefore wear a t-shirt with my ostomy wrap under it and over my shorts. This allowed for my ostomy to not be compressed at all and made me feel more secure about possible leakage.
Start with a clear bag and then move to an opaque one. While opaque bags can feel more sanitary because you don’t have to deal with seeing what you’re producing until you empty your bag, they can also make it hard to prevent leaks. Ostomies take a while to enter into a regular pattern of production, and it’s important to get in tune with how your ostomy works. Therefore, having a clear bag makes it so that you have a good idea of what your production is like, and so that you can force any stool that collects around your stoma down into the bottom of the bag. It’s important to do this to prevent leaks, since having hard stool collecting around the top of your bag can break the seal between the wafer and your skin. If having a clear bag bothers you, you can change out the bag every day and keep the same wafer.
MOST IMPORTANTLY, get to know your body! See this as an opportunity to get more in tune with your body than most people ever can. Get to know your ostomy (I even gave mine a name…) and get comfortable with dealing with it.

Having an ostomy can seem like a curse, but try to view it as an opportunity to learn more about yourself and what your body is like. It’s completely manageable!

I’ll probably think of more tips and tricks seconds after I publish this post, in which case I’ll add them to a second part at some point in the future. Let me know if you have any questions and thanks for reading!