Tag: surgery

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.

The Best Supplies for Packing Incisions

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I think I’m writing this post as a cathartic experience as well as to help people.

Last Friday, my surgeon took me back into the OR and opened up my ostomy reversal/takedown incision for the second time. This time, rather than just cutting into it with a scalpel without numbing me, he decided to actually knock me out so he could “be a little more aggressive”.

He didn’t actually find the stitch he claimed may have been stopping my incision from healing, and left me with a 3 inch long/2 inch deep hole to show for it.
THANKS.

If they’re leaving an incision open, though, it’s likely (hopefully) for a good reason. Packing the incision rather than just stitching it up lets it heal from the inside out. If the surface of the skin heals before the inside of the incision, the inside could fill with fuild and leave you with quite the abscess.

Anyways, even though I’m a little bitter, I thought I would write a post about how to pack larger abdomnial incisions/products I’ve found to be especially helpful in this endeavor.

Firstly,
USE HOSPITAL GRADE GAUZE. I’m currently packing my incision with 4×4 surgical gauze. I soak it in saline, wring it out, and then use a cotton tipped applicator to pack it. I do this softly, to make sure I’m not actually hurting myself in the process. I’ll put a corner of the gauze into the incision, push it in with the applicator and then cut off the excess.

The gauze they sell at CVS or Walgreens may seem great, but the soft, clothlike texture won’t absorb nearly enough fluid and isn’t flexible enough to fit well. Additonally, the soft texture makes it so that the gauze can’t clean up any issues you’re having inside of the incision.

To cover it up, I’ll put another 4×4 gauze on top, and then cover it in this tape. It seems to be pretty fluid-resistant and essentially acts like a giant bandaid you can choose the size for yourself. My nurse said they hide it in the sugical clinic because it’s so good.

If you don’t have quite as large of an incision, or if you need something to cover up a smaller issue, Bandaid’s Clothlike bandages are really good (BandAid Tough Strips).

The annoying thing about abdominal incisions specifically is that your abdominal region is one that’s constantly changing shape – you bend over, stand up, sit down, eat food that makes you bloated, etc. This can make it difficult to find dressings that will actually stay on your body.

If your incision is draining quite a bit, I’ve also found these bandages to be good. They’re foam so they protect the incision, and they’re ridiculously absorbant. Granted, they’re also pretty expensive, but I’m all in favor of treating yourself when you have a hole in your abdomen. Most importantly though, they don’t give me allergies!

Lastly, use this opportunity to get to know your body a little better! I stood up with my incision unpacked and looked into it with a mirror. Granted, I tend to be fascinated by this kind of thing, but it’s still pretty cool. Gory, but interesting.

I’ll be writing more posts when I’m home next week and not dealing with organic chemistry exams and having visits to the OR.

Thanks for reading!

 

Ostomy Tips and Tricks (Having an ostomy in college)

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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!