FMLA Update – Week Two – Five

For the past month of my FMLA leave, I have been trying to balance living in the moment and doing things with friends and family while also taking care of my health.  I’ve begun taking longer walks than I had previously over the past month and even tried some yoga for arthritis.  Though it felt helpful at the time, I woke up in a lot of pain the following morning, so I haven’t felt terribly inspired to try it again.  I have also started to take baths most nights.  The hot water has helped to relieve some of the pain and combined with reading, it helps relax me and allow me to evade the ever persistent painsomnia.

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I have also started to work on puzzles more frequently.  Whether solo or with Alex, they are also a calming activity to use energy towards that helps me focus – especially in days of intense pain.  Since I am not working at the moment, I have been able to put those spoons towards other things – such as visiting with family or doing housework.  Chronic illness has really helped to put things into perspective for me.  I never thought there was going to be a day where folding laundry or emptying/loading the dishwasher would be exciting, but as a Spoonie, I see it as an achievement.

Sometimes, I am still having trouble balancing the number of spoons I use.  It’s not uncommon for me to be in the hospital the week leading up to my infusion.  Because I had energy, I pushed myself too hard the week before my infusion, and though I had fun, I definitely paid for it.  Dinner with former coworkers, dinner with my brother-in-law, his wonderful girlfriend, and her adorable dog, seeing my grandpa for the first time in over a year, hanging out with one of my best friends, and finishing the week with my Entyvio infusion and MTX shot made for a very lazy weekend. 😊  I worked on cross-stitch and dusted off my drawing skills for something my husband and I are working on.  Once I finished the book Big Little Lies, I began the series which is really good so far!  After some rest, I started the next week by having my friend and mentor over for dinner before she moves to start her new venture, which made for a really lovely night.  Later in the week, Alex and I went on a craft date to Joann Fabrics to get materials for a few different projects – he is seriously the perfect person for me!  Since 2+ hours walking around wore me out, I got to start the next day by catching up with one of my other best friends and watching The Bachelorette together over video chat.  She is someone who has always been by my side, and I love that we can still connect, even when we’re not as close location-wise as we once were.

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Medical updates within the past month haven’t been too vast.  I had my first appointment with my new primary doctor – who I learned was originally training to specialize in GI during his residency.  I also made an appointment with a new GI in my hospital system who my primary recommended.  The only other notable update is that once the insurance company processing my Short-Term Disability claim received my files, they decided to look at my records and evaluate my case for both Short-Term and Long-Term at the same time, because they recognize that my conditions – individually and combined – make for a complex case.  I was originally only going to file the LTD paperwork if I need it, but it is nice that I will likely know whether or not that would be approved prior to needing it.  They reached out to my employer for additional information and requested my medical records from both my current GI and my rheumatologist.  They have all of the information they need, and now I am just waiting to hear their decision!

I hope all my fellow spoonies are doing well!

Healthcare Bluebook

In the United States, health care and cost of services can vary between both doctors and facilities.  The most extreme example of this that I have personally witnessed is the cost for both Entyvio and the nurse to infuse it.  I have received Entyvio infusions from four different locations – two hospital outpatient infusion clinics, a doctor’s office, and at home.  The total costs have ranged from $2,500.00, on the low end, to $22,000.00 – for the same drug, with the same premeds, being infused over the same period of time.  The price difference between the two hospitals was even shocking – a delta of $18,500.00.  Thankfully, many biologics and other drugs offer co-pay assistance plans, which have helped a great deal.

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The good news is that you can compare prices for procedures or medications at different facilities to keep from being surprised.  In my role as the benefit administrator for the company I work for, I learned of Healthcare Bluebook during this year’s open enrollment period.  A rep from one of the carriers I work with brought it to my attention.  It allows you to search in your area by either typing in a specific service or by selecting a category such as hospital, physician, imaging, labs, medications, etc.

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Once you search or select a service, the site will give you the low, fair, and high price for the area – 90210, in my example.  Depending on what your searching for, Healthcare Bluebook also offers prices for facilities in the area.

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This post is not endorsed by Healthcare Bluebook in any way, I just wanted to share this helpful resource with my fellow spoonies and warriors!  I hope this helps you navigate the health care system while saving some money in the process! 😊

Infusion Day

Good evening, my hooman friends!  I am Lauren’s puppy doctor – Dr. K-9!

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Nurse Corine was kind enough to take this picture of me and Mom! Don’t I look so darn tail-wagging cute?!

Today was her Entyvio infusion and she will also be getting her Methotrexate injection before bed, so I’ve ordered LOTS of rest.  Her nurse gave her Benadryl before starting her infusion, so my mom and I took a nap on the couch after her infusion finished.  This is the first infusion I got to see, and Mom and Dad said I was the goodest boy and was on my best behavior.  I sat in her lap for most of the time and helped her relax.

I was curious about some of the things Nurse Corine was doing to my hooman, especially when she put a band on my mom’s arm and squeezed a squeaky toy to check her blood pressure.  Nurse Corine let me examine and sniff the squeaky toy and it looked safe, but much different than my toys.  (I wonder if any of my squeaky toys will tell me Mom’s blood pressure… I’ll have to test this out!)

Between resting and working on a puzzle, Mom is working on some new content for the blog that she should have up soon!

De-stressing Family Situations

Hello everyone, Alex here again. Lauren had her infusion today, so I decided to do another edition of Alex’s Caregiver Corner. Today, I want to talk about family and friends, those wonderful crazy people that helped raise you and made you the great person you are. Family and friends can be great, but when you are living with a chronic condition, or if you marry/date someone with a chronic condition, family can be stressful. Even the most well meaning family members can accidentally cause stress. Over the course of meeting, dating, and finally marrying Lauren, I have seen a number of different ways family reacts to chronic conditions.

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First, there is the “My friend cured that with…” aunt. This is the family member who means well and wants to help you get better, but thinks that they have the perfect solution that your doctors refuse to share with you. Normally these people will listen to you and you condition, then come back to you with a homeopathic remedy that worked for their friend. It is not easy to deal with these people. It is obvious that they mean well, but their so called solution will do nothing at best or hurt you at worst. My suggestion to dealing with them is to not get angry and start by explaining the condition you or your significant other has. Help them understand what causing the condition and what you have tried. I have been lucky that when people have made suggestions it was because they lacked an understanding of the difference between IBD and IBS. If they do not listen or if they go Agent Mulder on you and start spewing conspiracy theories about a secret society of gnomes who control the doctors, then change the subject and do not bring up the condition again. It is not worth wasting time on someone who will not listen to you.

The second I’ve run into is the “yes but…” grandpa. This family member can be told about your condition a million times, even witness first had what you or your spouse goes through, but will never understand. They will continuously think that the condition is fake or that they just need to tough it out. Personally, these are the hardest to deal with. In my opinion they can be told a million times the limitations or special diet you need, but still insist that you can eat the giant gluten filled pie with uncooked carrot and then down a big glass of milk. These people just do not want to understand. Be polite, talk to them, but do all you can to avoid there stress and keep your significant other away from them if you can.

The last is my favorite, I call this one the “great saint” mother. This is the person who just understands. They listen to you, provide you with a sounding board, do not over burden you, and are there when you need help or support. The best part is, these people do genuine research to understand you or your spouse’s condition. When you tell them about your lack of spoons, they are happy to step in and take care of things like mowing the lawn, walking the dogs, or just making you a good dinner. When you find friends or family like this hold on tight, they are the best to have around to give you strength and encouragement. They also they come in handy when dealing with the other two.

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Family and friends are wonderful – they are a source of laughter and happiness, and provide a support system when things are tough. However, not all family and friends can be helpful and some can add a great deal of stress. What have you had to deal with in your adventures with chronic conditions?

Keeping Cozy

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!

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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?

The Agony of Clostridium difficile

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.

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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.

C. diff & Einy

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.

Wedding Planning with Chronic Illness

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.

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Painted initials

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.

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Clay “Carl & Ellie” chair cake toppers

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.

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Original Venue

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.

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Actual Venue

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.

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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!

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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.

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Resting and eating pretzels

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!

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**Some of the photography is by Thomas Kachadurian**

The Adventure of My Port & Me

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!

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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.

Port Accessed

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.