Some of you may already know, but Lauren has not been feeling well. Between her lack of energy and the new added responsibilities at work, her spoons have been at an all-time low. In an effort to help her, I figured I would make Caregiver Corner a little more regular. In addition to writing more, her lack of spoon has got me thinking about other ways to help.
My first post covered dating a spoonie, this post will cover caring for a spoonie. Spoonies are, in my opinion, some of the strongest people around. Lauren has a strength that astonishes me at all times. How she manages to do all she does through the day, dealing with all of the issues, all of the chronic pain, and the constant lack of energy. I honestly could not be more amazed by her strength. That being said, even the strongest spoonie needs the support of friends and family.
If you are caring for a spoonie, I strongly recommend open communication. Make sure they know you want to help and that you care. Lauren and I talk often about how she is feeling and what she needs. We also have many conversations about what is important for our family. It is important to determine what you and your spoonie need. For Lauren and me, the most important thing is for her to use her spoons on work first and then use the rest on things that make her happy. Though we could manage without her working, she really enjoys the people she works with and the company she works for. Without her working, things would also be tight, and though my job offers good healthcare plans, they are not as good as our plan through as her job. I can take on all of the house work, cooking, cleaning, the dogs, really anything outside of work.
I take on all of these tasks because I care about her. She means the world to me and I can see as she uses each spoon. I know I cannot make her pain go away, but I make sure she knows that I am here to help. That is the second thing about taking care of a spoonie, make sure they know you are there for them. It can be hard for spoonies to ask for help, they want to keep their independence, and they can feel like a burden if they are not able to help. It is important for them to know that you are there to support them. Lauren loves to do things on her own without asking for help. For example, I ordered the dog’s food the other day and it arrived in the mail today. Rather than waiting until I got home to carry it in, she picked up a 25 lb box and carried it to the garage. I know she is capable of doing these things, but I also know that every time she does this, she uses multiple spoons that she does not always have. As someone who cares for her a great deal, it is hard to watch her use spoons on something I can do.
Finally, make sure you take care of yourself. As the caregiver for a spoonie, it is easy to forget this important part. You can feel like you have unlimited spoons and can do anything. In reality, there is only so much time in the day and only so much can be accomplished each day. This is something that took me a while to accept. I wanted to help and do everything for Lauren. I would take on more and more things, trying to get it all done. I have come to realize that I need to prioritize the important things and plan out my nights and weekends, making sure to take care of myself, which allows me the ability to continue to care for Lauren.
Caring for a spoonie can be tough, but when you are madly in love with them it is totally worth it. Love makes you do crazy things and gives you strength to take on things you never realized you could do. What recommendations do you have for caring for your spoonie?
I had started drafting this post about a month back, and Dynamo (Steven Frayne) coming forward to speak of his Crohn’s disease seemed like a great reason to finish and post it. Here’s the link to a wonderful The Mighty article that includes Dynamo’s video and more information on the “MoonfaceForDynamo” movement (link).
I was prednisone dependent for most of college – being thrown into a flare anytime I dipped below 15mg a day. Once I began biologics, starting with Humira, I only needed prednisone during a flare. I don’t know if it was because the length of time I was on steroids or due to other factors, but 3 years ago, prednisone stopped working for me. I was no longer seeing any benefits or improvement from it – only the negative side effects. Thankfully, my doctors have trusted me and my body, and I have not been prescribed it during a flare since then.
My moon face while on prednisone was one of my biggest insecurities. Hearing strangers mention it was one thing, but comments (even the most well-meaning) coming from family and friends were definitely rough. A few weeks before my final year of college began, I was in Resident Assistant/Housing training for the fourth time. I wasn’t able to go to the camp outing that year due to a ulcerative colitis flare. Though my GI at the time couldn’t get me in, one of the campus clinic doctors was very concerned and ended up giving me her cell phone number in case my condition worsened. Though she couldn’t do much, she wanted to do what she could to help keep me out of the hospital. When training resumed after camp, one of my fellow staff members exclaimed, “Oh! You weren’t at camp because you were getting your wisdom teeth out!” This is my clearest roid rage memory. In my head, I was screaming, “no, I didn’t get my wisdom teeth out, stupid! It’s because I’m on fucking prednisone!” Since she was a team member I liked, and I knew it would be inappropriate to scream at people during training, I responded by explaining that I had not and it was a side effect of one of my medicines. Though I felt like the Hulk on prednisone (and the steroid-induced insomnia didn’t help), I had become quite skilled at hiding my rage and keeping up my Bruce Banner front.
My first hospitalization during the four-month-long c. diff ordeal, there was a mix up with my steroids that ended with a lot more than moon face. I was with my parents in northern Michigan at the time, so they called and consulted with my GI downstate – prior to the c. diff diagnosis. They had me on patient-controlled analgesia (morphine) that also gave me a small dose automatically at a regulated/scheduled rate. Though it helped with horrible pain of the combination of c. diff and ulcerative colitis, it made me less cognizant of the care I was receiving. It wasn’t until they were coming in to give me what they said was my “second-dose of steroids” that day that I began to be concerned. My GI had said 30 mg of steroids, but the hospital heard it as 300mg and did not question it. They were attempting to give 3 100mg doses throughout the day. They insisted on giving me the 2nd dose as I was beginning to fight back. I got my family involved. I was telling the staff that my GI never prescribed more than 45mg, so I knew this wasn’t what he recommended. They called my GI back and he was outraged. I was so glad that I fought back and they finally listened, but it shouldn’t have taken that much effort for them to realize they were administering much more medication than I should have been receiving. Needless to say, I blew up like a balloon. Think Violet Beauregard. My fingers were slowly turning into Aunt Marge’s from Harry Potter, and they hurt so badly they needed to be iced. Thankfully, the swelling didn’t last long, and I went back to normal prednisone moon face, but that is not an experience I would ever want to repeat.
A few months after my c. diff was cleared, my primary doctor ordered a bone density scan, which showed signs of early osteoporosis. That obviously wasn’t just from this event, but also from the years during which I was steroid dependent. Steroids definitely have their benefits in reducing inflammation, but they do have many negatives as well. Though prednisone once provided me relief, I am personally glad that I no longer tolerate them. Each patient needs to weigh the pros and cons in their specific case and make their own decision from there. Moon faces, unite!
Megan from The Front Butt Youtuber channel started the #IBDAdvocacyTag, so this week I am answering her five questions to help spread awareness & challenge you to answer them too!
What form of IBD do you have?
I have ulcerative colitis – specifically ulcerative pancolitis, meaning my entire colon is affected by the disease.
Why is IBD advocacy important?
IBD advocacy is important in helping to educate others to bring a better understanding. A great example is with my team at work. Though my colleagues were supportive off the bat, the more I tell them about IBD, my other diseases, and how the conditions affect me specifically, the more supportive they are. The more awareness we can provide about IBD, the more understanding people can be.
Awareness and advocacy also can bring advancements in treatments and eventually a cure. The medicine I am currently on for my ulcerative colitis was not available when I was first diagnosed. Everyone’s disease is unique to them and the medication that could help someone else could still be in trials or not even thought of yet! The more IBD patients speak out and participate in studies, the more research will be done leading to better treatments and the closer we will be to a cure.
Describe a socially awkward moment with IBD.
The first story that comes to mind occurred when I was working as a manager at a restaurant on my first shift after being hospitalized. The General Manager of the restaurant and I were standing at the “seating chart” podium while guests were standing and sitting in the lobby waiting for tables to open up. Loudly, he begins to ask me about my “irritable” bowel disease and how my “irritable” bowels were. Super weird conversation since I wasn’t that comfortable with him, only made weirder by the ten other strangers in the lobby. This was earlier in my disease when I wasn’t as comfortable discussing it as I am now, so I awkwardly let him know that the “I” stands for “inflammatory” and just kind of shrank in size and stature, not saying anything else. Not my proudest advocacy moment, but it does lead into the next question…
What is a common stigma you run into?
The most common thing I run into is people thinking IBD is the same thing as IBS. I’ve had people who have/had IBS tell me that theirs improved by eating better and managing stress, and I would be cured if I did that. Though there can be food triggers or foods to avoid and stress doesn’t do anyone any favors, IBD is so much more than that. As an autoimmune disease, IBD is our bodies attacking their own (what was at one time) healthy tissue. When I encounter this misconception, I take the time to explain the differences and share my IBD story.
What do you want other people to know about IBD?
As I said earlier, everyone’s disease is unique and it affects people in different ways. A treatment that worked for one person might not work for another. There are different factors that go into everyone’s IBD symptoms and it is not fair to hold everyone to a single standard of what it looks like to have IBD.
As I’m sure many of you understand, I never want to be in the hospital. I never get much rest, am at higher risk of infection (especially if I don’t have a private room), and would much prefer to be home with my husband and pups. Because of this, when I am in the hospital, I like to do what I can to keep entertained and comfortable. I am typically kept overnight for observation – if not longer, so I bring my toiletries from home including gluten free toothpaste and Burt’s Bees Sensitive Skin face wipes. My baby blanket tags along for the adventure, as I can’t sleep without it. As a spoonie in the 21st century, I also pack my phone, computer, and both chargers in my bag. Netflix and Hulu can help make a hospital stay better outside of visiting hours and distract from the pain. Sometimes I feel silly bringing my big bag into the hospital with me, but it’s worth it to feel more comfortable while I’m there.
Depending on how long the stay is, I have my husband bring a change in clothes and coloring books when he visits. As I said in “Keeping Cozy,” button up shirts allow easy access to my port while being much more comfortable than a hospital gown.
What do you bring from the hospital to help you feel more comfortable?
Today’s post is a bit shorter than most, as I haven’t been feeling well. With pain top of mind today, I wanted to touch on what clothes I find the most comfortable on bad pain days.
When I’m in a lot of pain, the texture of clothing is a big thing that helps me. Though it doesn’t reduce my pain, soft, smooth, flowing fabrics help reduce any additional pain. Two of my favorite shirts are cotton/polyester blends that have been worn and softened through washes for years. When it’s colder, flannel button-up shirts are another go-to of mine. Especially with my powerport, button-up shirts are one of my go-tos for infusions and long hospital stays – definitely more comfortable than a hospital gown and it still allows people to my port site. I also wear a Christmas sweater (around the house) all year round because it’s so comfortable!
Though not flowing, I have also found a pair of soft leggings that have good coverage that I love. When I moved to my current company a few years ago, I took advantage of their casual dress-code and bought 6 additional pairs – so I could wear them all week. If I’m not at home in my sweatpants, I am wearing leggings with a soft shirt and a sweater. Though I still have a few pairs of jeans, I prefer not to wear them because my skin has been much more sensitive to rough fabrics. Ever since I began showing fibromyalgia symptoms, my skin hurts when wearing rough fabrics – even with my sweatpants when it gets really bad. The stretch of leggings is also more forgiving and as comfortable as possible when I’m distended.
What is your favorite thing to wear on bad pain days? Why does it help you?
Clostridium difficile (C. diff) typical comes on after normal gut flora is destroyed or altered by antibiotics. It grows and multiplies – overpopulating the bacteria in your intestines. C. diff damages cells and mucosal, triggers inflammation, and forms a yellow plaque over the damage. Common symptoms are fever, cramps, abdominal pain, and uncontrollable diarrhea.
Since I didn’t have a job lined up upon college graduation, I moved 4 hours upstate with my parents. A few weeks after moving, I was admitted to the local hospital due to a UC flare, where they tested for C. diff among other typical labs. Since I got worse over the following days, they called my GI downstate and decided to retest for C. diff – which returned as “positive” meaning I likely became infected in the hospital. Since I hadn’t been on antibiotics in the last year, my doctors and I suspect it had something to do with how my body and my flora was reacting to Humira. Having Clostridium difficile colitis and an ulcerative colitis flare at the same time is the second worse pain I’ve experienced, just below the pain I experienced from drug-induced lupus on Remicade. During this week-long stay, I was hooked up to a pain pump with morphine and given steroids – too much at first, but I will cover that in another post. The doctors and nurses at this hospital worked with my care team downstate as I was not established with a specialist in the area yet.
At its worst, I was going to the bathroom 40 times a day. Most of the trips were between 3am and 8am – where I was running back and forth. This resulted in the second accident I had where I pooped on the floor on the way to the bathroom. Because I was embarrassed at the time and also knew how contagious C. diff is, I cleaned the mess up myself the best I could and hopped in the shower. In retrospect, I am not embarrassed and should have asked for help, but this was a low point for me at the time. Because of my frequent and numerous bathroom trips, I ended up losing 30 pounds within a week and a half and was extremely weak. They began me on IV vancomycin and discharged me with a prescription for Flagyl after a week because they weren’t able to do much more for me. I was told if things worsened when I got home, I should go to the larger hospital the next town over.
Later that day, things took a turn for the worse and I ended up in McLaren Hospital. The ER doctor who was assigned for my care was extremely rude and initially refused to treat me and admit me since I did not yet have a GI I was established with in the hospital system – even though I had just been in the hospital for a week and instructed to come there. This is the first time I had ever encountered this as I had always been assigned a specialist in the hospital if I didn’t yet have one. After some pushing, he ended up giving me IV fluids and potassium (since my levels were low) and then discharged me. If you’ve never had a potassium infusion before, you are very lucky. If it’s not mixed with enough saline, it can really burn. Since I was turned away at McLaren Petoskey, I returned to the smaller hospital and they continued to manage my pain and switched me from oral to IV Flagyl and potassium. They kept me for about another week and I also had a colonoscopy during this stay.
My GI downstate was still working with my doctors up north, but during my second week, he said he would no longer do this. I was told if I wanted him to still be part of my care, I would have to move back downstate. I was sent down with oral/liquid vancomycin and potassium powder mix, and I moved in with my grandparents. I was still up from 3am – 8am running to and from the bathroom every day. I remember watching The Night at the Museum (the original and Battle at the Smithsonian), Princess Diaries, and a lot of Ace of Cakes on repeat during these mornings as something to distract me from the pain. My grandparents ended up taking me back into the hospital after a few weeks, and I still tested positive for C. diff. I was admitted for just under a week. I was given IV Flagyl and had another colonoscopy. Though my C. diff wasn’t gone, I was starting to improve a bit and I headed back up north to my parent’s house.
When I returned to my parents, I became established with a GI out of McLaren hospital. A few weeks later, I went back in through McLaren’s ER. I had the same doctor as the first appointment, and he apologized for his behavior in my first appointment. He gave me IV fluids and potassium again, and they admitted me. During my stay, they set me up with an infectious disease doctor who did consults with me during this week-long stay, during which I did yet another round of IV vancomycin.
Once I was discharged, I saw the Infectious Disease doctor in her in the office to discuss the option of a fecal transplant and retest after Flagyl. I still tested positive so they had me continue Flagyl, and we got the ball rolling for the stool transplant. My cousin who lived nearby agreed to be the donor, and she had to go through multiple tests to rule out any diseases she may have that could be passed to me – HIV, hepatitis, infections, etc. Though the results had come back and she had been given the green light, there were roadblocks in getting the procedure scheduled. Because of this, I ended up back in McLaren hospital. I was admitted and my gastro came to see me. I asked for my infectious disease doctor to come do a consult as well, but she straight up refused. She finally agreed to talk to me on the phone and had the gall to tell me that since I had C. diff for almost four months, what’s the problem in continuing to treat the pain while waiting another two weeks for my transplant. Boy, did she hear it! It wasn’t as if I had been leaving it untreated or refusing care this whole time, but I had been in the hospital six times and on six rounds of antibiotics. This infection combined with my UC had left me with very minimal quality of life. After pushing, she was able to get me scheduled for the next week. They also let me stop taking the Flagyl that was making me feel sick, which I was thankful for since it wasn’t helping anyway.
Day of, I picked up my cousin’s sample and took the stool and the cheap blender I had purchased for the occasion and traveled to the hospital. A NG tube placed by radiology – this is the first time I had one. (A NG tube is through the nose then threaded down past your stomach to the beginning of your small intestine.) There was lots of gagging and dry heaving while they placed the tube. I threw up when they pushed the fecal transplant – I couldn’t taste it or anything. It was just the feeling of the push. The fecal transplant works by replacing the bacteria in your intestines with healthy flora. From the first day into the hospital to the date of my fecal transplant was exactly 4 months. I was thrilled that my C. diff cleared up completely within 48 hours after the fecal transplant. If I ever get antibiotic resistant C. diff in the future, I would definitely push for this earlier in the process.
One of the first things my now-husband and I did once engaged (after telling our families) was pick a date. Since I’m on Entyvio, which typically has an eight-week infusion cycle, and we knew we wanted a fall wedding, we picked a few dates that would be in the middle of my infusion schedule. We chose this because my immune system would be stronger than immediately following an infusion, and if I were to pick up germs from either wedding guests or our honeymoon at Walt Disney World, I would have time to recover before my next infusion. Thankfully, the only thing I suffered from was additional fatigue, which I would take over catching a cold.
My husband proposed a week before I started with my current company. Since my previous company did not take me up on my two weeks, I had one week to plan as much as possible before beginning my new job. Our wedding was going to be in my uncle’s backyard right on Lake Michigan. Between this and our theme being Pixar’s Up, we had many DIY elements to our wedding. I enjoyed this aspect quite a bit, because I love crafting and it is one of my stress relievers. While you’re in the planning process, pace yourself, practice self-care, and lean on your fiancé and family/friends/support system. Some of my wedding party helped with crafts and my wedding shower favors. My husband also helped with much of this. We made our own mailbox, adventure book, Paradise Falls jug, compass escort cards, painted initials, and other items. If crafts aren’t your thing or stress you out, don’t go this route and find something else that is relaxing and cathartic to include in your wedding planning process.
We were planning our wedding while living 4 hours away from our venue and any potential vendors. If you are planning a destination wedding, I would highly recommend planning a trip to meet with your vendors before the wedding, if possible. We had a short engagement, so we only traveled once to meet with our vendors before traveling for our wedding. Luckily, my parents and other family live in the town we were being married in, which helped. We were able to much of the vetting with the vendors via phone and email prior to our visit and narrow down who we wanted to book. Our trip to my parents included a tasting with our baker, one with our caterer (who did a full plated meal of each appetizers and dinner for both my parents, my fiancé, and I), had an engagement shoot with our photographer, and a quick consultation with our florist. Though it was a busy weekend (that included me forgetting my purse that had my meds for the week at our baker’s kitchen an hour and a half away), it also made a lot of the other planning easier.
Though we planned quite a bit, and may have over planned, we still did not have a plan C. I had created binders with multiple checklists, an alphabetic list of guests to help organize the escort cards, pictures my bridesmaids had chosen as hairstyle inspiration, and sketches of where each table should go and each item on each table should go. As I said, I thought I was overprepared. Since we were having an outdoor wedding, our plan B was to use my parent’s event tent in the chance they called for rain. Instead, the forecast was calling for 100% thunderstorms all day. Thunder and lightning under a tent on the beach did not sound like the safest plan, so we ended up taking the Wednesday before our wedding off work to call different venues and locations to find something. Anything. At this point, we were even considering the library, VFW hall, or the old middle school gym – as long as it was indoors and could fit us and our 60 guests. Luckily, an event barn only 8 miles from our original location had a cancellation and was open all weekend. On our drive up north, I called all of our vendors to let them know of our change in venue. Our caterer drove out the day before our wedding to scout the new venue for setting up.
We were able to use the barn on Friday for our rehearsal, rehearsal dinner, and to set up most of the wedding decorations with our families and wedding party. They also gave us access to a condo on the connected golf course to get ready the following day. During set up, my husband and bridesmaids created a strict rule that I was not allowed to decorate and risk over-exerting myself while setting up. Though it was hard not to help execute the plans I had created, with how much pain I was in, I appreciated it. I was feeling so poorly that had it not been the weekend of my wedding, I would have gone to the hospital. The stress of final wedding items and finding a new venue last minute didn’t help. My fiancé set up a chair for me in the middle of the venue where I could instruct others in decorating by referencing the diagrams I had drawn. With the venue change, these diagrams and other items I had included in the binder helped smooth the transition, as they translated well to the new venue and helped make sure we didn’t forget anything. We loved our new venue, everything went amazingly, and we were very happy with the change. Learn from me and have some plans and ideas in place in case of emergency.
The biggest tips I have for day of is having your support system protect you from stressors, wear comfortable shoes, rest when you can, and make sure you eat! There were a few minor things that happened on our wedding day in final set up with the venue that were kept from me until after they had been resolved, and I am so thankful for that. My Maid-of-Honor’s boyfriend drove about 20 minutes to the nearest Joann Fabrics to get a new frame and also helped resolve other issues. Not needing to stress about a problem that would be resolved was lovely. If you have people who can act like buffer, it will help ease your stress on your big day. Making sure you’re comfortable is also very important, especially if you suffer from chronic pain. I wore flats with my dress and broke them in with thick socks around the house before the wedding. I didn’t even notice my shoes because they were so comfy!
Make sure wherever you’re getting ready has plenty of places to sit and rest and have anything you may need both for your health and for the wedding. During pictures and before the ceremony, I sat as much as I could and took the opportunity to conserve energy. During the reception, I took many breaks and tried to stay as well hydrated as possible. In addition to staying hydrated, I did my best to eat throughout the day. We were getting our hair done at the condo, and I was the first one to arrive to have my hair curled and pinned so it had time to set before styling. I forgot to grab food and needed to be there at 7:30am, so the first bridesmaid to arrive brought me eggs from a local café. Around noon, my mom and one of her best friends put together a cheese and fruit plater and brought gluten free pretzels and hummus for us to snack on throughout the afternoon. Once we were dressed and ready, we did pictures with me and my side of the wedding party, the first look, pictures of my husband and his side of the wedding party, all of us, and then family. After that, the whole wedding party went back to the condo to relax during the guests’ cocktail party before the ceremony. Our caterer made a special tray with a variety of the hors d’oeuvres and had one of the waiters deliver it to the condo for us. We had decided to do the whole wedding gluten free, as we did not want to take the chance of me being glutened on our wedding day. Our caterer was very understanding, took great safety precautions, and created a delicious menu. We thankfully were able to eat our whole dinner and our cake without interruption during the reception. Eating throughout the day definitely helped keep my energy up.
Lean on your fiancé and the rest of your support system during planning, prep, and the big day. It’s your day, so don’t plan anything that you and your fiancé do not want or would stress you out on your wedding day. Wear what makes you comfortable, rest, and make sure you eat and stay hydrated. And most of all, enjoy this celebration with those you love!
**Some of the photography is by Thomas Kachadurian**
There is another non-profit I wanted to highlight that is very close to my heart – The Great Bowel Movement. It is an IBD and ostomy focused non-profit focused on empowering patients to start conversations and educate others.
The Great Bowel Movement was founded by Megan Starshak & Andrea Meyer in 2010. Both women have Inflammatory Bowel Disease, ulcerative colitis and Crohn’s disease (respectively), and met at Camp Oasis – a summer camp program established by the Crohn’s & Colitis Foundation. After establishing a bond and becoming friends, they created GBM, which is run by volunteers, a collection of patients and caregivers, who are equally as passionate about this movement.
The organization started with the shirts – Andrea’s idea and Megan’s design – as a way to start conversations, empower patients, and make an invisible illness visible. When people ask about the shirt, an opportunity is presented to share your story of how IBD affects you – it’s a tool to increase awareness. As I mentioned in “Changing the Conversation,” my “Ask Me About My Colitis” shirt was a great resource in helping me educate my co-workers on one of my chronic illnesses and why I was taking the extra precaution of wearing my Vogmask. With my first shirt order, I also received two pins, a bathroom card, a “Mad Libs” style IBD elevator pitch, and information for caregivers. I wear the two pins on my coat, which have also started conversations and education.
They also publish articles and provide resources and tools to patients and caregivers. Though their website is in the process of being redesigned, they will be bringing back the content and resources along with new posts when they launch! One of the new posts is a guest blog I wrote about going through the job search and interview process as someone with a chronic illness and deciphering your benefits package – a piece I’m very excited for you to read!
As they say on their website, “We all have stories that matter.” This is one of the things I love most about GBM – they foster a community where we can feel comfortable sharing our stories and experiences with each other and educating those who have not yet heard of IBD.
February is my Portiversary month! I have a single lumen power port that was placed two years ago.
Once upon a time, I had good veins that nurses were able to access. After the many IVs started during my hospitalizations over the four months I had c diff and received multiple potassium infusions (which hurt like crazy) and other hospitalization for my ulcerative colitis, I became quite the hard stick. The journey to getting my port began during my final loading dose of Entyvio. On a Friday at the University of Michigan infusion center, five different nurses tried to start an IV a total of six times. They brought out all of the tools in their arsenal and were still unable to get one started. The infusion center was closing in less than hour, and I was told that I would need to reschedule my infusion. Since I am not able to infuse during the week (except for Friday afternoons) due to the way Entyvio affects me, I was quite concerned at the idea of waiting until Monday for my infusion, and the effect it would have on the rest of the week. Though this is not something that is typically done, one of the nurses was able to schedule my infusion for the next day in the hospital on the Thoracic Intensive Care Unit (TICU) floor in a small infusion room. This floor had a dedicated IV nurse who thankfully was able to access me in one attempt – using a vein that had never been accessed on the back of my arm.
After my loading doses had finished, my infusions were moved to a center closer to my home. During my first maintenance dose, there was similar trouble getting an IV started, but since there was more time, they were able to get one started after an hour or two. Though we had thought about a picc line or a port after the U of M infusion, this is where the conversations truly began. My favorite nurse at this center was working that day, and she sat down with us to discuss both options in more detail. With my infusions being every 8 weeks, it was decided that a port was the better option, as it could be deaccessed between infusions.
I brought this up to my gastroenterologist, and he was in full support of a port and referring me to a surgeon – as long as there was evidence the Entyvio was working. We scheduled a colonoscopy and my first upper endoscopy – as this GI thought I might have misdiagnosed crohn’s instead of ulcerative colitis. During this scope, my colon looked the best it ever had since diagnosis! Because of this, my GI’s office set up an appointment for me with their recommended surgeon. The consolation went great and he made me very comfortable with the procedure. He even gave me a port that I could look at to get an idea of what would be going into my body (Honestly, it made me think of a mouse! Haha). He was able to get me on the schedule before my next infusion – which was great!
The day of my surgery, I was quite anxious, and since they wouldn’t allow my now husband to come back to the pre-op area at first, my anxiety was heightened. While in pre-op, I debated with my husband whether or not I wanted to do this surgery. (Spoiler alert: I am extremely glad he encouraged me to follow through.) When starting my last peripheral IV, the nurse injected lidocaine in my arm but I could still feel her digging and having a rough time finding the vein. They ended up giving me two doses of a calming/anti-anxiety medication through my IV, before the surgeon came in the room to talk to me. After speaking with him, I agreed to move forward with the surgery. He did say he would check back in with me before I was wheeled down to the operating room, and when he didn’t, I started having a panic attack as they were transporting me. They ended up giving me a third dose right as I began talking to the doctor and then they pushed the anesthesia. And then I woke up with a port! It was not my finest hour nor my proudest moment, but I am so glad that I pushed through the anxiety because the end result has made my life so much less stressful, as well as reducing my anxiety when going to infusions and hospital trips.
During recovery, the site was painful for a bit, but that didn’t last long. Most of the discomfort was due to the skin being stretched out over the port. I wore loose tops for the first week or so as that helped lessen the discomfort. I did ice the site many times throughout the day. While I was healing, I did somehow pull one or two of my anchoring stitches (the silicone on the side of the port is used to anchor it in place), which wasn’t uncomfortable for long and the only lasting effect is that my port shifts a bit if it’s not being held steady while accessing.
My first infusion with the port – and every infusion after – went splendidly. I used to always dread infusion days even though it made me feel better because I knew what an affair it would be to get my IV started. For my first few infusions, I did use the Emla cream prescribed, though I haven’t used it since. It helped make me more comfortable as I was getting used to the port, so I would definitely recommend it. One of my nurses suggested covering the Emla cream/port site with the Press’n Seal cling film, which worked very well. If you have IBD and are talking with your doctor and/or a surgeon about getting a port, I would suggest asking it to be placed on your right side. Mine is placed on my left, and though I was still able to use it, it made things a bit tricky at my colonoscopy last month, as patients need to lay on their left side for that procedure.
Caring for the port is pretty simple. Thankfully, since the port is under the skin, there is not much risk except when accessed. I am able to shower, take baths, or swim without having to take special precautions. Since my infusions are only every 8 weeks, I get my port flushed and locked with heparin every opposite month. When I do have a fever or other signs of infection, I have to have blood cultures taken from both my port and a peripheral site to verify that there isn’t an infection in my port.
Whether you have a port, picc, or get regular IVs, you know your veins best. Advocate for yourself, and when you’re getting a peripheral blood draw or IV, assert that nurses access only the veins you’re comfortable having accessed. I often have nurses insist that they can get a vein that many nurses before them haven’t been able to successfully access. I have reached a point where I now stand my ground and only allow them to draw blood or start an IV on select veins. Thankfully, many nurses I have encountered have the mentality that I know my body best. I still come upon the occasional nurse who fights back, but I ask for another nurse in those situations. I really stand my ground because that’s what’s best for me and my body.