Tips for a Successful I.V. treatment

When I was first diagnosed with UC my doctor reccomened the standard pill treatment. I took 3 to 4 horse pills everyday while also taking prednisone to try and get things under control. However as we ended the prednisone treatment the UC symptoms increased again. Obviously we could've kept me on prednisone but for the safety of my family and the world as a whole we decided instead to change medications all together. I started an I.V. medication Remicade and I've been on it since. 

You may have some questions about all this so let me briefly explain how things work. I schedule my I.V. appointment through my Drs office and on the scheduled day I arrive at my local hospital. After checking in and getting my wrist band I go to outpatient short stay. They get me checked in and in a room. A standard room has a little reliner for me to sit in as well as a few chairs for others and all the equipment needed by the nurses to perform my procedure. Then they check my weight (the medications quantity is based off of weight and they mix it up in the hospital pharmacy) and do my vitals. Then the nurse gives me my pre-meds (Tylenol and benadryl) to help with any side-effects from the medication. And they get an I.V. in my hand. Once the medication arrive they hook everything up and I hang out for a few hours while the bag of meds empty. Once that's done they remove the I.V. and send me home. Ta-da! Now that you know the jist of the experience you can better appreciate my 10 tips for an I.V. treatment. 

1. Dress comfy! (And warm) Sounds weird but honestly go in PJs, bring the slippers, and above all don't choose fancy outfits that require lots of clasping and stuff! You are having huge amounts of fluids pumped directly into your blood stream you'll be using the bathroom a lot. Also ask for those warm blankets! They are a godsend and sooooo nice. 

2. Just like with an airplane, download your media entertainment before hand. You will want to watch a movie or read a book or listen to music. However in my experience hospital free WiFi isn't the greatest so download ahead of time to save your data and have better streaming in the moment. 

3. Bring a friend. Before Covid-19 I always asked a friend or family member to drive me. I usually feel pretty sleepy afterwards and it gives me someone to talk to. That's not to say you can't go by yourself and be just fine but it's nice to not be alone. 

4. Be an advocate for yourself!! I cannot stress this enough! If you know which hand you like the I.V. in tell them nurses! If you want apple juice to drink instead of water ask for it. Don't be a "Karen" or anything but speak up for yourself and take care of yourself. Your future self will be grateful for your courage. 

5. Use lidocaine! Lidocaine is the numbing medication that they can put in your hand before the I.V. to help with any pain or discomfort. USE IT!! You will be more comfortable and less anxious if you know its not gonna hurt. And when necessary be a self advocate and ask for it from your nursing staff. 

6. Be okay with napping. Benadryl makes me sleepy but even if it didn't you get bored sitting in a little room. Let yourself rest I.V.s aren't easy and your body needs you to take care of yourself. Don't come into your I.V. with a huge to-do list (unless you can be forgiving if you don't get it done) just allow yourself the time to relax and rest. 

7. Get to know the staff. You will have I.Vs anywhere from every 6 weeks to every 8. Get to know these people, try to remember them and their lives. It makes the experience nicer to feel like you're going to visit some friends instead of being sick at a hospital. 

8. Go easy on yourself after the I.V. don't make plans for that evening. Don't over use your hands and don't be surprised if it takes a few days for you to feel 100% again. Be patient with yourself! 

9. Expect it to not go well sometimes. Sometimes the I.V. isn't gonna go in well. Sometimes the medications will take longer to get from the pharmacy. Sometimes it's gonna hurt more than others. Sometimes you'll get giant bruises. This is all OKAY!!! For every time it doesn't go well there will be 3 times it does. Also be patient as the staff and you get used to things it's gonna take a few visits to find your rhythm. 

10. Find something to be grateful for. Sounds silly and sorta unrelated, but if you can find something to be grateful for you will find joy. There is some much you have been given and remembering that will keep you kind and happy. Life is hard, this might be hard too. But don't give up! 

Flare-up Rules

So you're in a flare up, it sucks obviously, but what do you do now? Here are some hard and fast rules that have helped me! 

1. You can only call out sick from work IF you have diarrhea, are vomiting, or have a fever. They need you to be there, and you can do this!  

2. You have dietary restrictions! Corn will end you! Dairy is a no-no! So JUST SAY NO!

2.5 You must eat food everyday! Your body needs to be fed, find something it will eat! 

3. You must brush you're teeth and put on deodorant EVERYDAY! Changing clothes is optional changing underwear recommend. 

4. You have to get out of bed everyday. No specific requirements on the amount of time spent outside of bed and you can get back in it however often as you need too. 

5. You must see and feel the sun everyday! Through your bedroom window doesn't really count and you know that. Go get some of that D! 

6. Be nice to someone everyday! Kindness counts and will make you feel a little better. 

7. You are not allowed to wallow! Cry about your afflictions for a moment feel  all the sorrow and suffering, and then remember that the sun still shines and tomorrow will be better than today. 

Reaction

So I literally just got home from seeing a new movie, Five Feet Apart (heard of it? Yeah the sappy chick flick about CF... seen it? Well you should! Yes, you'll cry but it'll be so worth it), it was really good and made me cry, a lot, so points. But it also made me want to write this. Here's why:

#1; Awareness! This movie centers on the struggle and lives of 2 individuals who live with CF, Cystic Fibrosis, which is a terminal illness and it's all very sad. This particular movie did an incredible job promoting awareness for CF. The director was a friend of Claire's (if you follow the CF vlog community you know who that is) and she helped and played a role in the movie although she died before it was finished. It was sorta obvious throughout the movie that a huge part of its purpose was awareness. Many people have compared it to The Fault in Our Stars another teen rom-com about sick teenagers who "against all odd fall in love" (which in my opinion is a crap ton of BS but that's another blog) however a key difference was the lack of awareness tFiOS. Yes it's cute and whatever but significantly different. Among the CF community there has been a huge response to five feet apart, both positive and negative. But for the most part the movie did some incredible justice. They really tried to be authentic and show us what CF is really like. That alone was powerful. And for people who live with disease the desire for awareness is huge!!! I mean it's so important to us for people to know and understand what's happening in our lives. In addition to that awareness leads to money that allows for study and that keeps the dream of a cure alive. A real cure. A miracle. Obviously one movie doesn't make you an expert but hopefully it makes you more aware and more open to learning more. Because, speaking for myself alone here, I'd be more than happy to explain my illness to you. I don't know everything but I try to. And if you want to know I'll happily tell you. I honestly think the key to awareness is taking away all the taboos!!! It's okay to not understand something and ask about it. It's okay to be asked. Stop being sensitive. And yeah Google is great but 9/10 each illness is unique to the person so they can really tell you what's up. Anyways... I think yes awareness is the goal. But let's remember to pace ourselves! Just because you know about CF doesn't mean you're aware of UC and you can't know everything about every disease out there but being open and trying makes all the difference.

#2; It felt really relatable. Now let me preface I do not have CF nor do I know anyone personally who does. However as someone who lives with a chronic disease there where just moments that felt so real and relatable to me. Example (no spoilers fear not) expressing fears about relationships. From medical costs to needing extra care to the general uncertainty of being sick. It's hard, so hard and it's a nightmare to imagine bringing another person into that. Or imagining another person being okay with that. Now UC, ulcerative colitis if you don't know, is NOT a terminal illness. However people do die from it, that's usually due to not properly treating it though. More often than not they die of complications it involves, i.e. cancer or ruptured bowels and such. So yeah death is real but not at all like it is for those with CF. That being said the fact that it sort of looms in the corner of your vision is real. And the fact that it take and steals so much from you. That was so real... so real. Any disease, I don't care what, steals something from you; be it freedom, "normal", touch, peace, happiness, breast's, colons, breath you name it... it takes it. And that sucks. And it hurts. So there are moments when you take or steal things back. And I think that's so important.

#3 Obviously the whole premise of five feet apart is that they literally can't be together for fear of the chance of transferring bacteria and well, R.I.P so you can probably guess the ending. My thing is that's a bunch of bull sh*t. Literally Drs know basically nothing (JK they know so much and I'd probably be dead if they didn't). A lot, a painful amount honestly, is still being learned about illnesses, UC and CF alike. And you have to be willing to way your own risks and do your own research and make your own choices. Now am I saying be reckless and who care nobody's getting out of life alive anyways? NO! I am so totally not saying that. However I am saying that we were put on this earth for a reason, each of us has divine purpose here. And one of our personal purposes of living is to have and find Joy. If we can't have that then what's the point. I mean really? Why are we even here if it's just to take our medicine and follow every rule and go through the motions. I call crap on that!!! Find what makes you happy and hold onto it. Why in five feet apart did they literally separate to the point of loosing contact? It doesn't have to be that way. Stay friends, stay close with the boundaries you choose. YOU CHOOSE! Don't give up what brings you true happiness because fact is happiness, joy, true joy is a gift. And if it's the whole point of this than it should be cherished above all else.

My UC Story

I was diagnosed with ulcerative colitis in March of this year, just following my 21st birthday. But that is not where my story begins....
My story starts like many great fairytales, with an upcoming adventure. I had just turned 19 and made the decision to serve as a full time missionary for the Church of Jesus Christ of Latter day Saints, that meant that for 18 months I would live somewhere away from home serving, teaching and working to help those around me. I was so excited! I had a deep love for those around me and I wanted to share the happiness I had found in following the teachings of Jesus Christ. I received my mission call to Jacksonville Florida and I would go to Utah for 3 weeks to recieve training and preparation at the MTC I was to report there April 13th of 2016.
I was nervous to be leaving home for the first time but I took a deep breath and off I went. It was kinda insane but in a good way. My body didn't react well to the stress, I got sick very quickly being unable to eat and needing to use the bathroom very frequently. Which is more than an inconvenience when you have to bring another person with you, it's a rule for missionaries to stay with a companion 24/7. I was also having some rectal bleeding now I know that should've been a red flag for me but since I had worked as a CNA I knew how to recognize internal bleeding in a BM and that's not what this was. Frankly I thought it was hemroids, they run in my family and I've struggled with bleeding on and off most of my teenage years, always attributing it back to hemroids.
Regardless I was concerned and between my companion and my Branch President in the MTC they had me go to the Dr to try and figure things out. It helped they gave me medications that made it possible to eat and did some blood work. Things looked fine, other than low iron (the bleeding would explain that), they checked for hemroids and surprise I didn't have any! Also a little concerning becuase where was the blood coming from? The Dr wanted to do some stool samples but that would've kept me in Utah and I didn't want to be kept there. I wanted to get to Florida and get to helping people. So I declined and off I went, probably the first if many dumb decisions. (Haha)
Florida was beautiful! My first companion was compassionate and patient. She was a huge blessing. And my health improved slightly. Until suddenly I was sick with fever and chills and the runs all out if no where and unexplainable. Well back to the Dr's I went and this time I did the stool sample, turns out I had gotten Salmonella. Medications helped (sorta) and I was also put on a probiotic to help heal my gut.
The next hurdle came when my grandfather passed away at home. It was hard not to be around to help and my health plummeted. It wasn't made any easier becuase at the time I was training a new Sister Missionary who was struggling with anxiety among other things. I was stretched beyond my limits and so overwhelmed. Once again the bathroom became a close friend and I began to notice bleeding again, I was exhausted constantly, I was hurting and I stopped being able to eat regularly I just sorta nibbled and then forced myself when in public. I sought help but everyone attributed it to stress and irritable bowel syndrome, which also ran in my family. I did get a priesthood blessing where I was promised the ability to eat throughout the remainder of my mission. And that promise was fulfilled! Which was a huge blessing and made things far more manageable.
All things run their course, this was no different, eventually things changed I went to a different city in Florida and was put it a different situation, slightly less stressful. And things actually got quite a bit better. But my health just couldn't behave for long so just over a year in Florida, in March actually, I ended up in the ER and needing emergency surgery due to Appendicitis. That was easily the hardest part of my mission. For a few weeks I was too week and trying to heal so I stayed mostly in bed. I was blessed with caring companions and friends who were wonderfuk caregivers and taught me how to seek help. It was a humbling experience and it very nearly broke me. My health directly following the surgery actually seemed to be perfect and then BAM! Suddenly I was so sick everything came crashing down around me so I once again asked for help and decided to cut sugar and dairy from my diet and it was an answer to pray for over a month my symptoms where in remision and I thought I'd found my answers.
Until once again I was moved to a new area and was asked to train a new Sister Missionary. This sweet sister was my rock as my health both physically and emotionally fell apart around me. She was more patient and understanding than I could've asked for. I even remember talking with her and mentioning that I wondered if I had Crohns or something, I knew nothing about it but I wondered, at this point I was too tired of the hoops it took to get to the Dr and the never ending string of questions with no answers. I only had a few months left I decided to soldier through and deal with it when I got home.
My final month and a half in the mission was my breaking point. There wasn't a day I didn't see blood after a bowel movement, the pain never ceased and I   was totally exhausted. My stress level was once again through the roof between coming home and my health and just struggling with my new and final companion I could go no further. And although it broke my heart I was relieved to be going home. And I was hopefull I could finally find answers, despite my fears of what those might be.
I got home to Wisconsin on Halloween and was too busy to deal with anything at that moment! Both my older siblings got married in rapid succession first November then December. When I finally got to the Dr they did some allergy testing which came back negative and decided to send me to a GI specialist. I met with Dr P. and I wasn't surprised when he simply diagnosed me with IBS. That's what's I'd called it my entire mission. It seemed like a logical diagnosis. We even decided to try a newer treatment for IBS it was an antibiotic treatment that had put many sufferers with IBS into remision.
I started the antibiotic treatment just following a bout with the flu and my health spiralled into nothing the last few weeks of April I was a disaster. I tried to tough it out, downplayed my problems and keep life as close to normal as I could.
March came and so did my 21st birthday and it was the Sunday following that I went in to the ER I couldn't pretend any longer something was wrong and I was terrified. Finally the right questions were asked and they determined to do a CAT scan. My colon lit up light a Christmas tree and the Dr gave the diagnosis of Colitis, however a confirmation was still needed before treatment could start so we got me scheduled for a colonoscopy a week later. That week was hell, no point in sugar coating it. I couldn't eat I had fevers and exhaustion. Emotionally I was broken. My life was held together by my loving parents and a few close friends who repeatedly came to my rescue. The Sunday before my colonoscopy I thought I was going to die, only being slightly melodramatic there. I was so sick at this point I had lost over 20 pounds and saw no end in sight. I tried to go to church and ended up puking in the female bathroom before just going home with a fever to sleep on the couch. My heart was breaking... I was so broken....
They performed the colonoscopy and I was finally diagnosed with ulcerative colitis which is a chronic inflamitory bowl disease. The treatments started and slowly I've begun to heal. Sadly it's been an uphill battle and it's not over yet. And I still fight daily against the anxiety this has created and the pain as we try to find the right medications and truly understand what my bodies doing. Throughout this all I've learned a lot about empathy and compassion both giving and receiving. I've also learned about hope and faith, what they are and what they are not. I've also been so blessed in hundreds of small ways each one reminding me that I am not alone.
The most important thing I've learned is that this isn't "my story" this is simply a chapter in my novel. There is more to who I am than this disease and there will be so much more to my life and my future than this. I am a daughter of God, a true and loving friend, a creater of beautiful food, a lover of good books, a professional napper, a girl with a chronic illness but most of all I am a warrior! UC got nothing on me.