Tag: ibd

A Personal Kind of Physical Therapy

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During the entirety of 2016, I didn’t pick up anything that was heavier than a kettle. How could I? Over the course of that year, I had three (and a half) surgeries, anemia and a severe case of shingles. I was never particularly physically fit to begin with, but my body could carry me to where I needed to go, and I was comfortable moving it in any way I saw fit. 

After that year, however, my body — and my relationship with it — had changed completely. I was covered in scars that I had never anticipated having, and any kind of physical capacity I had disappeared. My weight had yo-yo-ed from month to month, and I had spent two months wearing high waisted skirts almost exclusively because of my ostomy. Granted, I was never offered any physical therapy regardless of the fact that I hadn’t truly used my core in an entire year.

Concurrently, I had begun to see my body as something foreign to myself. It was a disgruntled child that only caused me problems. One I needed to feed, clothe, and take to the doctor. It tired me out, it held me back, and it made me spend way more time in bed than I would have wanted to. Slowly but surely, I began thinking of my body and my mind as two separate entities. My physical form was a vessel meant to trap my mind from attaining everything it wanted to. I couldn’t predict what it was going to do, and every time I thought I had it figured out, it spun entirely out of control. 

Predictably enough, this dissociation, combined with my lack of physical abilities led to some pretty negative thought patterns. I became overly critical of myself and how much I was eating. I had never thought about my body that much in my entire life, and all of a sudden all I could do was hate it. It’s much easier to hate something that you don’t see as part of who “you” are. 

By the time I moved to London in June of 2017, things hadn’t gotten much better. The negative thought patterns were not leaving me alone. I did find respite, however, in my commute. In the morning I took the bus to the hospital, but after the day was over, I walked for an hour and a half to get home along the River Thames. Let me be clear: there was no need to do this, I could have taken the same bus I took in the morning, but I loved the feeling of moving my body and having it take me from one point to the next. I didn’t have to rely on a train being on time. If I needed to go someplace, my body would take me. Slowly, I began walking everywhere — if the journey would take the same amount of time walking as it would on public transport, I would walk. I was totaling 20,000 steps daily, which is wild considering I spent most of my day working in a hospital. Suddenly, my body was effective and had a purpose. My abdominal strength still wasn’t great, but I could feel the soreness in my legs at the end of the day, showing me that they were getting stronger. 

When I returned to my university in January of this year, I missed the freedom that London gave me. I could walk to class, sure, but it didn’t feel quite so special as passing the Globe Theatre did on my way home. My body wasn’t sore anymore, and the negative thought patterns began to come back with a vengeance. By early March, I realized I had to do something about it, so I went to see a personal trainer at my University’s gym. She looked at how I moved and what my fitness level was like, and then took me into the gym and showed me the ropes. I am comfortable saying that that decision and her support saved me from my negative thought patterns spiraling completely out of control. Eventually, I moved from free weights to loving barbells, and for the first time ever, I’m consistently going to the gym three, four or five times a week. Not only am I strengthening my core, but I’m also helping to appreciate and reconnect with my body.

When you lift heavy weights, the position of every part of your body matters. Your toe, heel, and side of your foot must be firmly on the ground. You must brace your core. Your back needs to be flat to ensure you’re using your legs to lift. You must move slowly, feeling absolutely every muscle in your body work to become more powerful. When I lift weights, there is only my body to concentrate on. Sure, I usually have some sort of music on, but the world outside me disappears — it must, to make sure I’m lifting correctly. Day by day, the lifts get easier, and I can feel my body becoming more powerful. My posture has improved, and I feel endlessly more capable than I did before. The gym not only serves as a form of physical therapy, helping me regain the strength I lost but also as a psychological remedy to help me appreciate my body further while tuning out the world around me. After the gym, I can feel how sore my muscles are, but it only allows me to appreciate them further and how capable they are considering what I subjected them to. 

My negative thought patterns haven’t completely subsided, but moving my body while becoming more powerful has ultimately been the remedy I needed. Although I was never offered any support to help bring my body back to full working condition, I found my own way — which is perhaps even more empowering.

This Is How You Can Help Me

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Whether I’m in a full-on Crohn’s flare or getting some initial warning signs that I need to slow down, I usually end up alerting someone. “I actually can’t make it tonight, I’m not feeling great” or “Actually, I think I might just need to go to sleep early today” litter the blue boxes on my iMessage screen. One note before I continue: I HATE canceling plans for the sake of my disease. However, taking a break to care for myself means that I’m not sitting at dinner thinking about what’s going on inside my digestive system, and can instead enjoy your company more thoroughly later on.

Most of my most caring friends will usually ask what they can do to help when I alert them to my sub-par state. I’m notoriously bad at asking for help, that much is clear. Granted, what I actually need is not generally communicable via text message, so I’ve decided to delineate that here. I hope that this is helpful whether you’re someone with a chronic disease, or whether you’re someone who cares about someone with a chronic disease. 

This is how you can help me:

  1. Keep me company. Feeling like you need to slow down is incomparably boring. It involves a lot of lying in bed and sleeping or lying in bed trying to sleep. I probably won’t see as many people as I would if I was feeling 100%. Therefore, one of the best things you can do is keep me company in a low-energy way. Sit with me and watch a TV show. Hang around my house with me and motivate me to do my homework.
  2. Understand. I’ve had a number of friends who demonstrate a significant degree of disappointment when I can’t do something I had agreed to. I would be disappointed too if someone canceled plans I was looking forward to. Please, please, please try to keep the majority of your disappointment to yourself, though. It’s helpful to know that you want to spend time with me. However, please know that I don’t want to cancel plans, and knowing the degree to which I’ve upset you makes me feel like a letdown.
  3. Communicate sympathy, not pity. Communicating pity means telling me how bad you feel about how sick I feel. Communicating sympathy means telling me how bad you feel about how sick I feel, and then reminding me that you care about me, that you’re trying to understand, and that you look forward to spending time with me once I’m doing better. 
  4. Check up on me. Sometimes, talking about my disease to other people feels like I’m burdening them. Often I won’t tell my friends if I’m not feeling great because it makes me feel as though I’m talking about my condition yet again. So if I do give the impression that I’m not feeling my best, and you happen to remember, shoot me a text. It’s a great reminder that you care.
  5. Be there once I’m feeling better. This is probably the most important one. I promise I’m not “flaking on you” and I swear I’m not a buzzkill. If I’m doing my homework and going to class anyway, that’s probably because it’s all I’m spending my energy on. My body is telling me I need to slow down and rest, and I’m listening to it, even if I don’t look sick from the outside. Therefore, the most helpful thing you can do is to be there when I feel better. Whether it’s a few hours or a few months, I’m going to need people to care about me and spend time with me once I’m doing better. Please please please stick around. I promise I’ll be a top-notch friend once I’m in full working capacity.

None of these things are easy to say, so I hope that this post helps you out. Feel free to send it next time anyone asks what you can do for them.

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

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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

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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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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).
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.

 

Mental Health and IBD

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Hi everyone. I know I’ve written about “staying positive” before on this blog, but I felt as though given the experiences I’ve had in the past year, I should write one about mental health and IBD in general. I’ve also had the chance to look at a number of different publications that deal with this issue, and the link between mental well-being and physical well-being.

The best way I can describe mental health and IBD is to refer to it as a “vicious cycle”. However widely and commonly used that phrase may be, however, it perfectly encapsulates how having a chronic disease that is in some part impacted by psychosocial factors can lead to worse mental well-being. Inflammatory Bowel Disease is no walk in the park, and feeling unwell can greatly affect your mental wellbeing. Given that IBD tends to affect the entire body when it’s active, it can greatly diminish your ability to perform day-to-day activities, which can lead to feelings of defeat and frustration.

As I previously mentioned, however, the relationship between the body and the mind in IBD is not a one-way street. Feeling poor mentally can greatly impact the activity of your disease. Mawdsley et al found that psychological stress, adverse life events, and depression have all been shown to increase relapse in IBD patients. In fact, Barnes et al noted that anxiety and depression are some of the two most commonly cited factors for readmission to the hospital for IBD patients. Being immunosuppressed, as many IBD patients are, can further exacerbate the issue, as increased stress may continue to depress the immune system beyond that which medications already do.

Unfortunately, I’ve had personal experience with this issue. in the semester following my surgery, I decided to take three chemistry classes, believing that the likelihood that my disease would relapse so quickly following my surgery was unlikely. Due to some complications with my scars/incisions, however, I ended up having to have one of them opened twice, which, when combined with the stress of my course load, gave me a severe case of shingles. Although my immunosuppression probably played a role in the development of the virus, another likely culprit would be the degree of stress I placed myself under.

Additionally, many IBD patients who I’ve spoken to have mentioned that their GI symptoms tend to get worse when they’re stressed, which follows seamlessly with the information gained from the studies above. The problem just worsens when you consider that many IBD patients are adolescents. Being a teenager brings with it a host of stressors, independently of a diagnosis with a chronic disease. Having IBD can make the issues faced by adolescents that much worse, creating the perfect breeding ground for anxiety and stress.

So, how do you actually deal with mental health issues and IBD? Getting control of your mental health symptoms is vital to getting control of your physical symptoms, so I’ve noted a few of the skills that have helped me in this endeavor below:

  1. Get help if you need it. However long it’s been since you were diagnosed, having IBD is not a walk in the park. It’s perfectly fine to need to talk to someone about how you’ve been feeling. Mindfulness-Based therapies have shown success with IBD patients, but it can be good to try out a number of different types of therapies until you find one you’re comfortable with.
  2. Do some sort of exercise. I hate exercising. I’ve never gotten to the point where I actually enjoy a run, or where I do it to relieve stress. However, it’s important to do some kind of exercise if you’re feeling up to it. Not only will the exercise help your mental health, but its regular exercise has been shown to increase IBD remission rates. Whether it’s a full body workout, yoga or simply setting yourself a daily step goal, a little bit of exercise is incredibly important.
  3. Practice self-care. Self-care is important for everyone, including IBD patients. Find some kind of activity that will relax you, whether that’s watching a series on Netflix, sitting in the bath, or reading an enthralling book. Taking time away from your busy life to do something that relaxes you can greatly increase your outlook. If you’re having trouble fitting it in, or find yourself thinking about all the work you have during this time, schedule it in. It should be a task on your to-do list like any other. Take into consideration that without your mental + physician health, you wouldn’t be able to do any of the other things on your to-do list. Good mental health is an investment in your future.
  4. Listen to your body. Probably the most important tip I can give is to listen to your body. If you’re tired, sleep more. If it seems as though something you’ve eaten isn’t sitting well with you, cut it out of your diet. If your GI symptoms are at bay, your mental health symptoms are more likely to be as well.