Author: cberenblum97

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!

College and the Emergency Room (ER)

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Over the course of this past year, I’ve had two different surgeries. In March, I had an ileocecal resection, and an ileostomy takedown in May. For my surgery in March, I was in the middle of the second semester of my freshman year (I conveniently ended up in the hospital right before spring break), and my surgery in May was right after final exams. I thought I would record my experiences both with the Emergency Room, and with Surgeries while being in college, as well as provide any tips if any of you find yourselves in these unfortunate situations.

I had been having intense pain (to the point of being unable to walk) in the lower left quadrant of my abdomen for two whole days before going to the emergency room. I told myself I could put up with the pain, take acetaminophen to calm it down, and generally just try to put it in the back of my head. This was my first mistake. When the acetaminophen isn’t calming the pain for as long as its supposed to, or not breaking it at all, it’s time to go to the Emergency Room. I bet that if I had gone to the ER when I realized that I couldn’t manage my pain on my own, I wouldn’t have been in such bad shape when I got to the ER.

Luckily, the ER was relatively close to my dorm (I took an Uber there, freaking out the driver in the process). However, make sure you have a way to get to the hospital quickly if the need arises. Once I got there, I registered and they took me into pediatrics. Don’t try to be brave and tell them you’re in less pain than you’re actually in. Your body is being damaged by the fact that you’re withstanding immense amounts of pain, so don’t underreport the pain you’re in. The doctors generally won’t give you more painkillers than you actually need. Don’t put up with the pain if you’ve been given painkillers and they’ve done nothing, either. Sure, some painkillers take 20 to 30 minutes to kick in, but if time has passed and you’re still feeling the same pain, tell your nurse. Nurses are your best resources in the Emergency Room. When I had my first surgery, we quickly discovered that morphine does nothing for my pain, but I only reported this to anyone after two days of putting up with full fledged post-surgery pain.

Being in the emergency room for the first time by yourself is definitely daunting. You have to fill out a bunch of medical forms, and possibly make decisions about your own well being while you’re there, decisions you may be unused to making. Tell your closest friends that you’re in the hospital so you have someone there with you. I was in too much pain when I got to the Emergency Room to talk to my parents or try to text them, so it was great to have a friend there for not only support, but also to help me out with contacting my family.

Don’t tell your parents that they can’t come if it seems like you’ll be there a while. Although you may feel like you can manage the situation yourself, it will be much better for both you and your parents’ emotional states if they’re there. Eventually, your friends have to go to class, and you’ll be by yourself. You want someone there to vouch for you when you don’t feel like you’re able to.

If it seems like you’ll be staying in the hospital, make sure you let your professors know. Make a group email with all of your professors’ emails and send them emails updating them on how you’re doing and how it looks like things are going to go. They’d much rather get a number of emails than be surprised when you don’t show up for three different classes. If they don’t know about your condition, tell them politely before explaining your current medical situation. Don’t be shy about this — most professors are willing to help you out in a situation like this.

If you had any packages you were going to have delivered like I did, you can usually email the shipping department and ask them to authorize a friend to pick them up for you. 

Also, let your RA know what’s going on. If your parents or friends need to get into your room to get you clothes or supplies, it’ll be convenient for your RA to know that.  They’re there to help you, whatever the situation.

If you’re coming to the emergency room and you have a doctor at the hospital you’re visiting, call your doctor’s office on your way there (if you can) or send them an email to make sure they call the emergency room before hand and explain some of your history/why you’re coming in. They can better prepare for you if they know you’re on your way, and your doctor can inform them as to any steps he/she wants to take when you get there. Plus, this can make triage and registration a lot faster.

Most importantly though, don’t be frightened. You can do this. The people in the hospital are there to help you. Finally going to the emergency room felt like a breath of relief for me, because it meant that I wasn’t the only one worrying about my health anymore, and that at least part of my suffering would be over soon.

 

 

College and Crohn’s

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One of the biggest struggles I had when applying to college was knowing how to tailor my college experience to help with my disease. For many, college is the first time you’ll be away from home, and facing new experiences while garnering some backlash from your body can definitely be difficult. Below are some tips if you’re applying to college, or steps you can take to make things easier if you’re already there.

Look for schools with hospitals near by.

This one is especially important if you’re going to be more than a short car ride away from home. I can’t tell you how happy I was to be able to walk to the Emergency Room from my dorm, or to have my doctors just 10 minutes walking away. Even if you’re in remission, or if you haven’t had symptoms in a while, having a hospital near by is paramount. You’ll be thankful you have one if you’re unlucky enough to need one.

Make sure you have health insurance. 

This one goes along with the first one. If you’re moving out of state, make sure you have health insurance coverage wherever you’re going. Also look into the health insurance your school offers, as it may be a great alternative.

Establish relationships with doctors over the summer. 

Again, only necessary if you’re farther from home, but seeing a gastroenterologist over the summer is incredibly important if you’re moving to a new city. Some hospitals don’t offer short-term doctors appointments, so if you try to make a preliminary appointment once you get there, it may take you months to see a doctor. If you’re on any kind of medication, you’ll be thankful for a doctor close by to write you prescriptions. If you end up in the hospital, having a doctor you can call to manage your care while you’re there will keep you healthier and safer. It’s worth a trip to the city you’ll be moving to over the summer to make sure you’ll have the care you need when you arrive.

Check out the food situation. 

When I was going to college, I was on the Specific Carbohydrate Diet. I needed to make sure that my school’s dining halls and restaurants in the surrounding areas had food I could eat. Check to see if there’s a supermarket in your area! Even if you’re not on a specific diet, however, Crohn’s and Colitis can often react negatively to eating unhealthily. Make sure you scope out the dining halls and surrounding restaurants on your campus before you arrive. Make sure they offer options that aren’t limited to junk food, because even if you’re not on a diet now, treatments for these diseases can always change, and dietary restrictions may be deemed necessary.

Ask for accommodations.

This one is VERY important. Even if you’re symptom free, asking for accommodations at your school can be an absolute lifesaver. Crohn’s Disease and Ulcerative Colitis are unpredictable, so it is VERY important to have accommodations even if you’re not experiencing symptoms. If you start feeling sick, you’ll greatly appreciate having them instead of having to go through the process of getting them while not feeling well. I only asked for accommodations after my first surgery, which was a huge mistake. Most universities (if not all) have a disability or accessibility office, and will require a note from your doctor that states exactly what accommodations you need before they give them to you. Do this over the summer! It can take weeks to get the accommodations you need. Some of the accomodations I got were the following:

–  Transportation to and from class. This is a big one if you’re ever anemic or in pain. –

– Notification to your professors. Accessibility offices will tell your professors that they have a student with a disease. This will help professors understand if you need to miss class or be late. It’s good to go up to your professors during the first weeks to notify them of your condition anyways, though. –

– Food accommodations. I follow a very specific diet for my Crohn’s disease, and when I had my ileostomy, it was difficult to find food I could eat in the dining halls. Have your doctor put this on the sheet to make sure that the dining halls at your school offer accommodations if you ever need them. –

– Your own room. This one came more as a surprise than anything else (I didn’t ask my doctor for this one) but can prove incredibly helpful if your only other option is to live with a roommate. Although having a roommate is a good part of the college experience, being able to get a good amount of sleep a night is incredibly important for your health. It’s difficult to do this if your roommate wakes up earlier than you, or if they like to stay up studying with the lights on into the night. Having your own room means that you have a space where things are predictable, and especially where you can control your sleeping hours, when you have guests and your environment. This is also very important if you’re taking any forms of immunosuppressants. If you have a roommate who’s sick, you’re more likely to get sick as well. –

– Bathroom accomodations. Even if you don’t have symptoms now, they can creep up at any time, so having accommodations for a reasonable bathroom can be helpful. I shared my bathroom during my first year with three other people, which wasn’t bad at all. But when it came time for my second year and that wasn’t an option anymore, I discussed my accommodations with housing. I could either share a bathroom with 7 other people, or live across the hall from one in a hall style dorm. I opted for the latter option. Although I had a “private” bathroom in the first option, the second option meant that there were more stalls per person on the floor, and that even if all the stalls were taken, I could walk down to the other floors and use one of the bathrooms there, which I couldn’t do with the first option. –

Some other accomodations it may be wise to consider is the ability to have a car on campus (if your school doesn’t allow you to), accessibility parking (so that you can have your car close by to make sure you can get to doctor’s appointments), and placement in substance free housing (as this can help with the noisiness of regular dorm life. 

How to Stay Positive

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By far the most important part of knowing how to live with a chronic disease is knowing how to stay positive in spite of it. Although knowing what an MRE is like, or how to change an ostomy bag is important, the significance of all of these things pale in comparison to keeping a positive attitude. Crohn’s and Colitis are autoimmune diseases, and the immune system is affected in part by one’s mental state. Being anxious or depressed, while perfectly understandable, can also contribute to triggering symptoms or a relapse of the disease.

Having Crohn’s or Colitis is certainly daunting. The idea that you’re going to have a disease for (probably) the rest of your life is not one that’s easy to grapple with for anyone, especially if you were diagnosed when you were young, like many patients. I was diagnosed when I was 10 and could hardly grapple with the fact that this would be something that would affect me for the rest of my life. When we’re small, it’s difficult to think in a broader context — we really only focus on what affects us, and something like being diagnosed with a disease can seem insurmountable.

I always find it helpful to think of my Crohn’s disease as something else I have to face, just like an exam or trying to get into college. Rather than being a large, daunting force, I try to view it as a simple part of my life. I’ve learned that everyone deals with something difficult at some point in their lives, whether it’s a divorce, a death in the family, or a chronic disease. One person’s struggle isn’t any lesser or greater than the other, because each struggle is happening to one individual, and affects that individual uniquely. Having a chronic disease shouldn’t be a tragedy — it is simply something that has happened to us by chance alone, and that we must face as part of our lives.

Having a disease can also have a positive impact on your life. Had I not been diagnosed with Crohn’s, I wouldn’t be half as responsible about taking care of my health as I am now. I wouldn’t have nearly as much self control, and I wouldn’t have realized how important it is to take care of your body and your mind. Granted, I’m not always this positive in the face of my disease. Over the past nine years, I’ve felt like quitting multiple times, and I’ve questioned my ability to keep going. But without fail, I’ve gotten through difficult times, and come out as a better and stronger person because of them.

I also find it incredibly helpful to use my disease for something positive. When I first got diagnosed, I was terrified of discussing my disease with anyone (let’s be honest, digestive issues aren’t the most tantalizing conversation points). Slowly I learned, however, that the more I discussed my disease, the more I raised awareness of it, and the more I helped other people understand what I was going through. Crohn’s or Colitis aren’t easy diseases to deal with on your own, so discussing your experiences with friends or family will help those around you to help you along the way. I also started to mentor younger patients (with the help of my doctor) who had been recently diagnosed. Rather than my disease being a negative force in my life and in those of the people I loved, I could use my experiences with it to help others who were going through what I went through, and to tell them that they were capable of facing whatever obstacles it threw at them. Any struggle we face teaches us something, and it can be incredibly helpful to transform these learning moments into things we can teach others.

As I’ve said above, I can’t say I’ve always had a positive outlook on my disease. When I first got diagnosed, it was an incredibly difficult obstacle to face, and over the course of my life since, there were many times in which I doubted my strength and my ability to overcome. However, every time I’ve doubted myself, I’ve come out stronger and more prepared to face obstacles that come my way. Having a chronic disease is definitely something that isn’t easy to deal with, but the experiences we have while surmounting obstacles can make you stronger and more resilient as a result.

A Little Introduction

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Hi!

My name is Catalina. I’m 19 years old at the time of writing this, and I’ve had Crohn’s Disease for the past 9 or so years.

This site is meant to be a resource for young people with Crohn’s Disease or Ulcerative Colitis. As I was growing up with Crohn’s Disease, I realized that while there were plenty of resources available for young children and adults, resources for teenagers and young adults were lacking. This was alarming, especially because many IBD patients are diagnosed at a young age, meaning that they have to go through adolescent years with the disease.

Although this blog will have some posts tailored to adolescents and young adults, I also plan to include quite a few resources for everyone, considering that over my nine years with the disease, I’ve experienced just about everything Crohn’s Disease can offer you.

Below, I thought I would put a list of all of the medications, diets, surgeries and miscellaneous experiences I’ve had with my disease so you can know what to expect from the blog!

  • Medications:
    • Humira (currently taking)
    • 6MP (Mercaptopurine)
    • Prednisone
    • Asacol
    • Flagyl
    • Immodium
    • Acetaminophen
    • Benadryl
  • Painkillers
    • Toradol
    • Oxycodone
    • Dilaudid (Hydromorphone)
    • Morphine
  • Supplements:
    • Probiotics (VSL#3)
    • Vitamin D
    • Zinc
    • Turmeric
    • Iron
    • Calcium
    • (among others)
  • Diets:
    • Exclusive Enteral Nutrition
    • Specific Carbohydrate Diet
    • Parenteral Nutrition
    • Low-residue diet
    • Ostomy Diet
    • Low Oxalate Diet
  • Procedures:
    • Body CT scans (CAT scans) (oral and IV contrast)
    • MRE
    • Ileocecal resection
    • Ostomy placement
    • Ostomy reversal
    • PICC Line
    • Drain pumps
    • Colonoscopies
    • Endoscopies
    • Every kind of blood test you can possibly think of
    • Enema
    • Ultrasound
    • Iron infusions
  • Conditions:
    • Anemia
    • Kidney Stones
    • Alopecia
    • Psoriasis
    • Fistula
    • Abscess
    • Crohn’s Disease
    • Ileostomy