Short answer: No. Long answer: Staying home during COVID while I’m currently healthy is nothing like staying home because I’m sick. Last year I spent a lot of time at home while recovering from surgery and multiple abscesses. Staying at home while in serious physical pain is no picnic. Not being able to eat solid food and having nothing to do is very challenging, not only physically, but mentally. 

I went into detail about how awful things were last year for me. My recovery timeline was constantly changing and with going in and out of the hospital it seemed like there was no end in sight. I suffered from my very first (and hopefully last) panic attack. I was on anti-depressants, which was difficult because you weren’t supposed to take those pills on an empty stomach, but I wasn’t allowed to eat!   

I was out of work for six months which made me feel like a burden. My job was to just get better, but easier said than done! Towards the end of that stretch when I was physically stronger, I started working on activities to keep me busy, like cross-stitch and making jewelry.  

Now, I am still employed but with COVID I am working from home. I have adjusted to the WFH life and it wasn’t easy at first, but I’ve grown to really enjoy it. I learned to make the most of it and have become very productive while working from home. We invested some money in a monitor to connect to my laptop (highly recommend) and got a little desk from Walmart and now I have a proper office in the corner of my dining room. Hey, it beats the dining room table.   

I am also healthy so I feel strong and pretty good most days. I’ve had some symptoms here and there (some acid reflux) and a few new IBD related symptoms that have surfaced, I am currently dealing with that with upcoming doctor appointments, but nothing major, just want to get things checked out. Don’t let things linger because of COVID, something minor could snowball into something major down the road and everyone should try and avoid being in the hospital right now (or anytime really).  

I can eat, which is a HUGE improvement on last year. I’ve been using my Insta Pot every week and enjoy figuring out what we are going to cook. Thankfully I’m busy with work most of the day so I’m not sitting around just eating everything, which would be a complete 180 from last year. I have found things to keep me busy when we aren’t working like reading, beading, tie-dye, Netflix, and redesigning my blog. I wouldn’t have had the energy for all of that last year.  

It’s hard to tell you which I prefer because they are apples and oranges. I prefer to be healthy, but I also prefer to live in a world where there isn’t a global pandemic that has already killed 200,000 Americans and put millions out of work (like my mom). They are two very different situations and the only thing they have in common is that I’m home most of the time. Being on lockdown to help prevent the spread of a contagious virus is not like being home recovering from surgery or an illness. Sorry to burst your bubble, but if you have never been on medical leave and now you think you know what it’s like, you don’t. Don’t compare the two, even though I just wrote an entire post doing just that.  

Friendly reminder: there is still a pandemic, please wear your mask and avoid crowds and large gatherings. I know you may be bored with COVID but we will never get through this if people continue to be careless and selfish and refuse to get with the program. 

The medication I am on suppresses my immune system (very common for most people with IBD) and because of that, I am high risk for contacting COVID-19. Therefore I have been listening to the experts and taking their advice seriously.

This is what I have been up to as I try and keep my sanity and avoid COVID-19:

• As I mentioned, I am still working full time, and I understand how lucky I am right now. This summer I was super busy with work and thankfully that occupied a lot of my free time so I didn’t have time to be bored. However, things are a bit back to normal so I am working the average 40 hours a week.

• I order my groceries online and have them delivered, I don’t go to the store.
• Once a week we drive 30 minutes north and meet my in-laws and my mom and brother for social distancing and bagels. We pick up bagels and set up our chairs in a shady quiet spot in the parking lot. It feels like tailgating and we look forward to it every week.
• We also order take out once a week and utilize curbside pick-up at our favorite restaurant. Every other night we cook or heat up leftovers.
• I tried and failed at puzzles. It’s not easy and I think Kevin was annoyed with my abandoned puzzle that I couldn’t finish, so I eventually put it back in the box and gave it away.
• I have not tried to make bread (yet) but have done some very limited baking here and there. I’m a sucker for a simple box of Funfetti cake mix. Hell even our wedding cake was Funfetti or “Superfetti” from Publix. It was sooooo good.

I did get on board with the tie-dye trend (a few months late) and have had a lot of fun with it. I have ordered so many white shirts and face masks from Amazon to keep myself entertained. Honestly having spent months at home last year recovering from surgery my loungewear selection is pretty good, but now I have a ton of comfy and cute tie-dye shirts on top of that.

I ordered an inflatable pool for our patio because I wanted to hang outside for a bit without feeling like I was going to burst into flames from the Florida heat. I ordered mine from Walmart and it was worth it. It may not be the same as a full swimming pool, but it feels nice and it’s a great option to have when your stuck at home all day during the weekends.

Wear your mask, it is not hard and everyone agrees that a mask helps slow down the spread of COVID-19. One day when I was bored I got into a debate (strong word for what it actually was) with an idiot online over if you can get carbon dioxide poisoning by wearing a mask. You can’t and that man is a moron and I only argue with these morons when I’m bored. I’ve ordered a ton of cute masks from Etsy.

Once a week when we do go out we also bring hand sanitizer and are constantly using it, this isn’t news breaking. When we get home I wipe down my phone and wash my hands. If I have come from a medical facility (for my monthly infusion for example) I always throw my clothes into the laundry and take a shower before I do anything else. I would rather overreact than under-react and catch this damn virus. The simple flu put me in the hospital last year so I don’t want to find out what COVID would do to me. I don’t want to scare anyone, but just make sure you are taking all the right precautions necessary.

Back in March I received my monthly infusion at a hospital-based clinic and my insurance was not excited about paying for the higher cost, and I was moved to a location that wasn’t following the CDC guidelines for social distancing and that entire story is enough for a separate blog post which I will write in the next few weeks. Long story short, I am now at a new infusion clinic that is small, clean, safe, and only has at most, 3 patients at a time and always 12 feet apart. If you have to go to a medical facility that you feel isn’t adhering to the proper guidelines speak up right away, it is not worth the risk.

In July I had a routine ileoscopy, I had scheduled it back in January in the pre-COVID days. What a simpler time. I almost forgot about it until I was called and told I needed to get a COVID test 2 days before my scheduled procedure. I got the full nasal brain swab, which honestly, wasn’t that bad. The nurse was so nice and kept apologizing before she even began and I assured her that I have had tons of unpleasant medical tests and a nasal swab would be a walk in the park and it was. It lasted about ten seconds, it feels weird and then all of a sudden you want to sneeze. If you find yourself in a situation needing to get a COVID test just know it’s not that bad, close your eyes and count to ten and it will be over.

My ileoscopy was like every other scope I’ve had with a few exceptions. I couldn’t bring anyone, so my mom dropped me off but couldn’t stay and wait. I had to wear a mask the entire time. Also, the hospital I go to does not allow cloth masks, I had to wear a disposable mask. When the nurses and techs put the nasal cannula (oxygen for the anesthesia) on my nose, they removed my mask and then put it right back on over the nasal cannula. I wore my mask for the entire procedure, even when sleeping. When I woke up and was ready to go, the nurse in recovery called my mom and my brother came to pick me up. The nurse walked me outside to meet my brother, they don’t want you wandering off after you’ve been drugged.

The important thing to remember during all of this, among many things, is to not ignore your illness. Stay on top of your current treatment plan, notify your doctor of any new symptoms, and don’t put off asking for help just because you don’t want to go near the hospital. Minor symptoms now can become something more complicated down the road, trust me I’ve been there.

For now stay safe, listen to your doctor, and wear a freaking mask.

All drugs come with side effects, many minor and some unfortunately can be serious. It is important to know what to expect before starting a new medication and what you need to watch out for. This is a conversation you should have with your doctor when he/she discusses new treatments that they want to prescribe for you. Another resource that people tend to forget about is your pharmacist. This is your pharmacist’s job, to know about your medications and how they interact with other prescribed medications you are taking. You can always ask your pharmacist when you have a question about a prescribed treatment, they have a wealth of knowledge and are there to help you.

Thankfully I knew that the medication I took for my UTI could possibly change the color of my urine, otherwise I would have been a little scared.

Now the most common set of side effects are gastrointestinal, which is frustrating if you are taking a medication to treat an actual GI issue, for instance . .  Crohn’s Disease. How do I know if my upset stomach is a side effect of a medication or just stupid Crohn’s Disease? It can be tricky in the beginning, but with time you’ll really know your body and what feels like an IBD symptom, or just an upset stomach from a new medication. It’s hard to put down in words, it’s just something you’ll understand if you’ve been through it.

Last year when I was home from my many hospital stays and only on clear liquids and TPN, the doctors prescribed a three week course of several antibiotics, I believe I was on 4 or 5. It was a lot and it wasn’t easy. The big problem was these medications will upset your stomach if you don’t take them with food. Well, I didn’t have that simple luxury so I had to take them on an empty stomach and I’m not exaggerating when I tell you that I threw up every day while on those antibiotics. Since I wasn’t eating, I was pretty much just dry heaving some times and/or throwing up a little bit of water. It was awful.

I can’t forget to mention the one we all hate and all have to be on at some point or another, corticosteroids. When I say “we all” I’m talking about my comrades with chronic illnesses. The steroids we have to take suck, BUT sometimes they are the only thing that can control a flare-up. Steroids can give you chipmunk cheeks, insomnia, mood changes, increased appetite, increased sweating, headaches, and they can also slow down your healing. Another big kicker is that they can weaken your immune system and thus making it easier for you to get an infection. I’m always trying to dodge colds and flues like I’m in the Matrix. In the hospital when I’m given a high dose of steroids via IV, it can upset my stomach, which again is annoying since I came to the hospital with stomach issues.

via GIPHY

If you take a medication that improves your overall health but the side effects are rough, are you allowed to complain about it? I ask this because in recent news (I’m writing this amid the COVID-19 Global Pandemic) I saw some tweets critical of Rita Wilson’s interview about her COVID-19 recovery. She talked about the medication that was used to treat her and how rough it was and people thought she had some nerve to complain. She should be grateful that she didn’t die like so many others. I voiced my opinion on Twitter and those with opposing views didn’t respond.

As someone who has been on countless medications to treat a disease (including chemo) I can tell you that many drugs have awful side effects that at times can be worse than the disease/symptoms you’re treating. https://t.co/YB7RdhFHTY

— Julie (@SemiColonGirl) April 15, 2020

Hey caner patients! If you survive you better not complain about chemotheraphy, which is another treatment I’ve endured. Yes, I’m grateful when a medication can successfully do it’s job and make me better, but if it made me throw up every day, you better believe I’m going to be bitching about it. I immediately knew that those who were upset with Rita Wilson for complaining about side effects have clearly never really been sick and have only ever taken Tylenol.

There’s a fine line we walk, managing our symptoms and THEN managing our side effects. It’s not easy and it is just one of those things that comes with the territory. In a perfect world we wouldn’t have to worry about side effects, but also, in a perfect world I wouldn’t have Crohn’s Disease! The double edge sword of side effects is something I can’t avoid and I must get through to improve my health overall.

Anytime I’ve been in the hospital, and especially following a surgery, I am usually given an anticoagulant to prevent blood clots since I’m not walking around as much as I normally am. Blood clots can easily form when you are laying in bed and not moving around. There are a lot of risks that come with being in the hospital, that’s why they really try and get you discharged as soon as they can.

Well, last year during my endless hospital admissions I ended up with bilateral obstructing blood clots in my upper arms. However, I didn’t get them from being inactive and laying in bed. While I was in the hospital the doctors wanted me to get a PICC line to receive my TPN infusions because I have terrible veins and  I needed a high volume of fluids, therefore it was vital that I needed a more central line than your typical standard peripheral IV.

Typically nurses that are specially trained come to your room to insert a PICC line. They use ultra sound and other techniques to place the line. It is a sterile procedure but does not take that long. In my opinion it hurts the same amount as a normal IV. Which is a simple prick. The nurse made several attempts, but could not advance the catheter far enough to where it needed to be. He left me with a mid-line (see below), which is almost like a PICC line, but the catheter doesn’t advance as far.

I was sent to the Interventional Radiology department of the hospital to have the PICC line inserted by a doctor under floroscope. I was assured this would work because they could clearly see my veins with the fluroscope and easily advance the catheter. I was almost twenty days into this admission (which was my second admission with an abscess) so I was already mentally and physically exhausted. The doctor and his team of techs made multiple attempts to advance the PICC line. Every time they made an attempt, they pricked my skin after injecting a local anesthetic to numb it. A local anesthetic stings and burns and I hate it and they insisted that it needed to be used EVERY TIME. I felt like a human ashtray that was being used to extinguish cigarettes.

They tried on both upper arms multiple times. I started to cry because I felt like a literal pin cushion on this table covered in sterile drapes with this team around me talking to each other about my veins and all their failed attempts. They had to give up and I was sent back to my room with a simple mid-line catheter, which is what I started the day with. The hassle would have been worth it if they were successful, so I was pissed and exhausted. No one brought up different IV access ideas, which looking back on, was pretty stupid.

Within a few days my right upper arm (where my mid-line IV was placed) was hurting and I couldn’t lift it. I mentioned it to my nurse and within a few hours I was sent downstairs for an ultra sound. They confirmed that I had an unobstructed blood clot. My mid-line catheter needed to be removed and replaced on my other arm, which was done later that day.

I was discharged within a few days of this and sent home with TPN infusions so my mid-line catheter came home with me. My first night I woke up and my arm where my newer mid-line catheter was inserted, was in severe pain (again). I knew what that meant. I had to stop my TPN infusion myself because it was too painful. I went to the ER that morning and at the same time my abscess came back (that’s another story) and they confirmed that I now had OBSTRUCTING blood clots in both upper arms!

They sent me back to see my friends in IR after I was readmitted. It was a different doctor and he explained that the order was to try again for a PICC line. I immediately stopped him and said no and told him what had happened. I explained that I didn’t want to keep doing the same thing and expecting a different outcome. He was great and I wish I could remember his name, because he understood what I was saying and respected my wishes, even though I don’t have a medical degree. He said lets try and put a tunnel catheter port in and he explained the process and it didn’t sound that bad. So that’s what we did and it was done in less than 30 minutes. They spent more time preparing and sterilizing the area than actually placing the line.

I can’t tell you how relieved I was when I had the port inserted and a viable IV access point that I knew was going to be fine. I was able to restart my TPN infusions and start getting the treatments I needed. I ended up going home with the port and having it removed 5 months later.

Now, for the blood clots. They were unable to use a blood pressure cuff on my upper arms because you don’t want to rub or squeeze the area that has a blood clot. They had to use my legs to measure my blood pressure even though the reading will be a little off. All of the nurses understood and had no issue, except for Nurse Ratched. She kept telling me that the reading would be inaccurate, and I told her I would rather have a blood pressure reading that was a little higher than have a blood clot travel and fucking kill me. Maybe I didn’t use those exact words, I’m probably para phrasing here.

They upped my dose of blood thinners and I was now getting two daily injections of an anti-coagulant. A hematologist was sent to see me and they said with the anti-coagulant treatment and time the blood clots would resolve, but they had to keep an eye on it and I was advised against rubbing or squeezing the area where the blood clots were. The soreness in my arms immediately started to show signs of improvement once the mid-line catheter was removed, it did take maybe up to a week later for it to feel 100% again. I was kept on the anti-coagulant as a preventative measure.

When I was discharged and finally sent home I followed up with my hematologist who has been treating me for anemia for the past ten years. He kept me on the anti-coagulant for as long as I had the port. Once the port was removed I was allowed to stop taking the anti-coagulant.

Now, I couldn’t have prevented these blood clots because they were a result of multiple botched PICC line attempts. However, it is very important to get up and walk around whenever you are in the hospital and stuck in bed. Walking helps get your circulation going and is a great way of preventing complications such as blood clots. Blood clots suck and trust me, you don’t want them. This ordeal was just a big nightmare within a nightmare and I’m so happy it’s behind me.

I receive a monthly IV infusion to manage my Crohn’s Disease. This medication, like many that are used to treat IBD, suppresses my immune system and many patients have been worried about continuing these treatments because it puts us at a higher risk to contract the Novel Coronavirus (COVID-9). As I always say, I don’t give medical advice and you shouldn’t listen to random people online when it comes to making medical decisions for yourself or a loved one. However, for this, I’m breaking my rule because it’s got to be said and it needs to be repeated. DO NOT SKIP YOUR MEDICATION DOSES! Please, if you are concerned, speak to your doctor. Do not change anything in your drug regimen without consulting a medical professional that is familiar with your case and knows your history.

Yes, the Novel Coronavirus (COVID-19) is awful and we are still learning so much about it. However, you do not want to be in a flare-up right now if you can prevent it. Imagine you get so sick, you need to be hospitalized. Hospitals are still operating and taking care of patients with non Coronavirus related issues. We can’t shut down chronic illnesses like we are with non-essential businesses. If you need to be hospitalized because of a flare-up, most hospitals are not allowing visitors at all. The hospital I go to is only allowing one visitor if the patient is a minor or at end-of-life. Other than that, you have to be there by yourself. No one can hold your hand in the ER or keep you company during your hospital stay.

Last week I received my monthly treatment in our new world and I discussed my experience on Amber J. Tresca’s podcast, About IBD. The most important thing I want to stress is that I felt safe and confident in the level of care I received and I know I have a better chance of staying healthy while on my meds. Think about it . . . have you ever thought about skipping your medications during flu season every year? Probably not. Listen, my last flare-up spiraled into a total colectomy that resulted in multiple hospital stays post-op with lingering abdominal abscesses and a whole mess of complications. I was on medical leave for six months, I couldn’t eat solid food, and I spent about 10 weeks over a four month span in the hospital. If that had happened this year, I would have been by myself after my surgery and every day I was hospitalized. And I’m sorry to those that are currently in the hospital during this pandemic and have to go it alone. It can’t be easy.

Many patients receive their medications via a self-administered injection that they get at home, which is a great option in this current pandemic. However, not everyone has that choice. So, if you’re like me, and you have to go to a medical facility to receive your treatment, please know there are new systems being put in place for your safety. Call ahead to find out what to expect. The facility I go to currently does not allow visitors and screens you before you are allowed to enter the building. If you have been exposed to anyone with symptoms or a confirmed case of COVID-19, please ask what are your options to receive your treatment.

Please be patient with health care workers right now. They are scrambling to adjust to this new normal and working with what they have to keep us and themselves safe. Allow for extra time since you most likely will be screened before being allowed to enter. I chose to wear a mask that I happened to have leftover from my medical supplies from last year. I know the mask isn’t filtered, but it kept me from touching my face while I was out. The nurses and staff were also wearing masks the entire time and they are not allowed to remove them while working.

Patients who had appointments were all moved to a teleconference. They are trying to limit the number of people who have to physically be there. The building was empty compared to a normal day. Patients receiving infusions were kept in separate exam rooms to keep up with social distancing. Normally we are separated by a few inches and a curtain, however, my facility had to improvise and make the necessary changes. I have to go again at the end of April and by the looks of it, the current system will still be in place. I’m sure there will be more changes by then because every day we are learning more and more about this.

Now for doctor appointments . . . I happened to have one this week. For a simple follow-up appointment, I got to say, I love the teleconference option and hope this continues into the future. It was so easy and I could do this from work and save so much time since I don’t have to drive and check-in and sit and wait for the doctor. I was sent the teleconference information through my patient portal and logged in right at 2:30 p.m. for my appointment and there was my doctor’s Nurse Practitioner sitting in her home office. She had access to all of my recent lab orders and we were able to discuss the plans for my care going forward. Check with your doctor’s office if you have an upcoming appointment to see what procedures they have put in place.

I don’t know how this is going to play out in the long run, do any of us really know? I just know, we are going to have to adapt to this new world and these constant changes. But anyone with a chronic illness can tell you that we know all about adapting to quick changes. For now, stay safe out there, and stay home and wash your damn hands!

• By January I got hit with the flu which dragged on and rolled into a flare-up with bowel obstructions which led to me having major surgery removing what was left of my colon.
• I spent 4 weeks recovering and right as I was about to go back to work I ended up back in the hospital with an abscess.
• The entire month of April was spent in the hospital.
• I suffered my first ever panic attack. I never want to go through that again.
• I was finally discharged (without being readmitted the next day) on May 7 (my mom’s birthday).
• The only thing I was allowed to eat for three months was broth and Jello.
• I spent six months out of work on medical leave.
• We bought a house!
• We got married!
• We did manage to travel before and after Crohn’s got the better of me: Cruise to the Caribbean, Weekend in Cancun, and Honeymooned in Disney World. We were planning to go to Europe but with everything that happened this year we decided it was best to try again later (maybe next year!).

2020 will officially be my 20th year of living with Crohn’s Disease (wow). I hope to celebrate this milestone by not spending one night in the hospital and eating solid food every day next year. Cheers to 2020!

I went wedding dress shopping with my mom about two months after Kevin proposed. I honestly wasn’t expecting much and thought I was going to hate the experience. I just wasn’t a fan of how I looked in white dresses. Fortunately, I was no longer worried about running to the bathroom thanks to my ostomy but didn’t want anything form-fitted around my lower abdomen just as a personal preference.

I went to David’s Bridal with my mom one Saturday afternoon and I spoke for a few minutes with my consultant about what I wanted and what I didn’t want. I showed her pictures of dresses I liked and showed her one that was my favorite, but if they didn’t have it wouldn’t be the end of the world.

I was so impressed with my consultant because she clearly listened to my concerns and wishes because she brought me five dresses and I absolutely loved each one. I thought I was going to dread the process, but I ended up loving it and not wanting it to end.

The dress I chose was the first one I put on and also the one that I loved from the online selection. I think I was worried I would get there and be let down by something that I had built up in my head. However, it lived up to the hype. I did try it on first and then again at the end to see if it was the one and I knew immediately.

As far as going to the bathroom, because this was A LOT of dress. I skipped wearing the slip with the extra tulle on my wedding day simply because my dress didn’t need the extra poof and it was fine without it. When it came time to use the bathroom with my dress on my mom helped me when I had to pee, but later when I had to empty my ostomy I didn’t want to ask for help from anyone (even though I know several people would have helped no questions asked). This may sound weird, but this is what I did and I did it twice with no issue: I sat on the toilet backward. I pulled my dress up easily and was able to empty my ostomy bag without any issues.

I did buy a product on Amazon called the Bridal Buddy, however, it was shipped to my office the day before the wedding and not my house so I didn’t get it in time. That was my fault. It’s an extra slip that you wear and basically works as a net to help gather your dress up and keep it out of the way when you go to the bathroom. I read reviews and most were favorable, some did say it didn’t work well with poufy dresses. I can’t give you my honest review because I returned it, however for only $35, it’s worth a roll of the dice.

I loved my dress and was so happy wearing it on my wedding day. My legs did get a little sweaty so I’m glad I skipped the extra tulle underneath and when I took it off at the end of the night I was a little sad knowing that I was never going to wear it again, but it served its purpose. Also, I was a little relieved to take it off and take a shower. I was in that dress for a long time dancing the night away, so I was a sweaty hot mess.

Our physical symptoms are talked about every day all day, there are multiple diagnostic and lab tests that our doctors dissect at every appointment. There is usually one question directed towards your mental health when you check-in for an appointment. A nurse will ask you “Have you had any suicidal thoughts?” That’s it.

I wish they would worry more about our mental well being as well as our physical symptoms. I wish that doctors would send patients to a therapist as soon as they are diagnosed. Being diagnosed with a life long chronic illness is life-changing and overwhelming.

I’ve reached out for help a few times over the years, but I had to seek that help and I’m glad I did. But I wish I didn’t have to. It would have been easier if it was offered to me in the first place or if someone recognized that I needed help beyond my physical symptoms.

This past year was rough. I suffered my first ever panic attack and it was terrifying. I had recovered from my surgery but ended up back in the hospital with an abscess and then when I recovered from that, I was readmitted the next day with another abscess. It was never-ending and depressing.

On about Day 16 of this abscess saga, I was in my hospital room at night. Kevin had gone home for the night and my night nurse was starting my TPN treatment. It was around 10 or 11 p.m. Not too long after my infusion began, I felt like something was wrong. I couldn’t really put it into words. My nurse walked back into the room and I told her something was not right.

She was immediately attentive to my concerns especially when I couldn’t explain why I felt that way. Also, this was my first night with this nurse, so she didn’t really know me that well. Within a few minutes, I felt this tightness in my chest and I was very short of breath, I couldn’t take a deep breath. I was agitated and told my nurse I can’t breathe! Of course, I know that if you’re talking you can breathe. My nurse put the oxygen on me and started measuring my vitals.

Within minutes there were multiple people in the room. All there to do different tasks, EKG, lab work, chest x-ray, etc. My nurse had called a Rapid Response, which is about a level below a Code Blue.

I was profusely sweating, dripping wet. My nurse kept wiping off the sweat, so my distress was visible. All the tests were coming back normal. But I couldn’t shake the feeling that all of a sudden I was going to stop breathing and no one was going to be able to do anything about it. Which was completely irrational. I was surrounded by medical professionals with life resuscitating equipment. If I was going to stop breathing I was in the right place.

Within about 20 minutes my breathing calmed down and my nurse called Kevin for me, I couldn’t talk the way I was breathing. I told my nurse I didn’t want to be by myself and she said she wouldn’t leave me until Kevin got there. After a heart attack was ruled out, they considered the idea that it could have been an allergic reaction to something and gave me diphenhydramine as a precaution but by the following day, it was decided that I had suffered from a panic attack.

It was one of the scariest things I have ever been through and I’ve actually almost died, but those times were more just physically grueling. This was mentally exhausting and scary. The next day I was transferred to a University hospital because my doctor recommended it and said I needed to go where they specialize in Crohn’s Disease and have resources that he couldn’t access. By the time I got there I was crying at random times throughout the day. When my new doctors came to meet me, I told them I needed to meet with someone from Psych.

I met with a Psychologist and he prescribed some anti-depressants for me, which did really help me. However, they never followed up with me. They never once came back to check on me. I was there for another three weeks.

It’s okay not to be okay and it’s okay to ask for help. I just wish that it was offered more often so we didn’t have to ask because not everyone is going to raise their hand and say I need help. I’ve learned a lot over the last twenty years and I know I have to stick up for myself, but a patient that was diagnosed today may not know that yet and probably will need that extra help.

I’ll let the photos tell the rest of the story.

Photography: Pamela Perrin Photography

Nurses are amazing and I can’t tell you how many have been there for me and truly cared about my wellbeing. However, this is not about them. This is the story about those who shouldn’t be nurses and how I was put in the care of some incompetent people who just didn’t care, and it was at a time when I really needed help.

Quick recap back to April of this year when I was in and out of the hospital because of constant abscesses in my abdomen. Abscesses are scary and not to be messed around with. If one ruptures inside of you as it did to me many years ago, your intestines may perforate, and a massive infection will spread.

I was readmitted a day after being discharged because I had obstructing blood clots in both upper arms and my abscess had returned. I was sent home on TPN infusions, however, my line stopped working because of the obstructing blood clots. Upon readmission, I had an IV line in each hand since I needed a Heparin drip on its own. As you can imagine, it made simple things like going to the bathroom very difficult.

I was readmitted to a different floor so the staff was all new to me, but I didn’t think that would be a problem.

• It took all day to get the barium delivered to my room so I could drink it and have a CT scan to find out what was going on with the abscess.
  • Yes, part of the blame falls on the Radiology department for taking forever to send it, but my nurse said she was going to get it and two hours later still hadn’t brought it in my room even though my mom found her with it at the nurses’ station.
• The night nurse just didn’t care. I needed help with my dressing and ostomy bag because my fistula had a massive amount of discharge from the new abscess. With limited movement in my hands, I couldn’t do much on my own. Kevin had to practically drag her into my room to help change the dressing and bag. She seemed clueless around my ostomy.
• When I asked her about my CT scan she informed me that the hospital doesn’t do CT scans at night. Not true. It’s a hospital and there are always things going on. And considering I had drunk all of the disgusting barium, I was insistent of having the CT scan.
  • Nurse Ratched came back to ask if I wanted to do a pregnancy test that is required for the CT scan or just sign a waiver (something I had previously done). I let her know the waiver would be easier since it is difficult to get up and go to the bathroom right now.
  • Nurse Ratched came back later to start some IV medications and casually mentioned to me that my CT scan was canceled because I wouldn’t do the pregnancy test and Radiology doesn’t accept waivers.
    • It was about midnight at this point and I had been at the hospital since 9:00 a.m. and was tired, but this floored me. Why not come in and give me the option to pee in a freaking cup? Why would I want to cancel a test I’ve asked you about a million times AND that I already drank the barium for?!? I explained I will pee in a cup to get it done because it needs to get done and I just need help getting out of bed.
    • I had taken a sleeping pill so I fell back asleep when Nurse Ratched left my room to call Radiology and let them know I was going to do the pregnancy test. I woke up when the Nursing Assistant dumped a bedpan on my stomach and then left me.
      • This was not the help I was asking for!! I wanted help getting up. I tried to use the bedpan, but it turns out I can’t pee laying down. I somehow got up by myself and peed in the freaking cup.
    • I woke up around 6:00 a.m. and I heard Nurse Ratched in the hall on the phone with the lab checking on the status of my pregnancy test. The sun was rising. How was this possible that it took them this long?!
    • Around 7:00 a.m. I heard one of my doctors talking to Nurse Ratched and my day nurse, which was the same one from the day before, and asking why I hadn’t had my CT scan and why did it take so long to get a pregnancy test.
      • Nurse Ratched tried to blame me and explained that it took some time to get me to pee.
    • As soon as my doctor walked in I asked her to close the door and told her I need to be moved from this floor. I told her about everything that had happened up to that point and she was furious. She immediately pulled out her phone and started making phone calls to get me transferred, but more importantly to get the CT scan I had been waiting for 24 hours for at this point.
    • I had to drink an extra cup of barium because of all the time that had passed. But I did get my CT scan not too long after my doctor made some angry phone calls.
    • While I was waiting in my room to be moved, I still had the nurse from the day before who was not so great.
      • I was in pain and I told her, and she went out to get the pain medication. Twenty minutes passed and she hadn’t come back. So, I pressed the call button and I was told my nurse was on break and only my nurse could give me medications (not true) and that I would have to wait WHILE I WAS IN PAIN! I then asked for the charge nurse who never came. Kevin had to go into the hall and drag another nurse into my room who then told me my nurse was coming.
      • Nurses are entitled to breaks and deserve them, but their patients should be covered by another nurse when they are off the floor.
      • My nurse KNEW I was in pain and left the floor for her break anyway.
      • No one was able to take care of me while she was on break AND the charge nurse wouldn’t respond! It was so upsetting and exhausting.
    • Within a few hours, I was transferred to my old floor and the nurses remembered me (I was discharged the day before, so not as they could forget).
    • I felt ten times better once I was there because I had more confidence in the staff. Immediately my new nurse noticed my dressing needed to be changed and so did my ostomy bag. Together, with my help, since she wasn’t sure what to do with my ostomy, we put on a new bag and cleaned me up. She was receptive to what I was telling her, and it was a complete opposite of what I had experienced before.

Over the years, I can only think of a couple of times where I complained to the charge nurse about my care. Never have I been so upset with the nursing staff that I demanded to change floors and file a formal complaint. It was a very rough time, but I’m getting upset all over again thinking about it.

I’m glad I spoke up and demanded to be moved, I’m glad I made a fuss and that both Kevin and my mom were on top of the staff when they weren’t responding in time. I did speak with the Nurse Manager from that floor a few days later and I have no idea what came of it, I left it in their hands. I hope to never receive that kind of treatment again.