Sticking to your guns: How to Speak up During Blood Draws and IVs

All it takes is one experience to alter how you respond and react to the way you receive medical care. For me, it was July 2008. I was getting admitted for an abscess the size of a tennis ball in my small intestine. No one could start my IV. I was in excruciating pain. It took eight tries to get an IV going. EIGHT tries. It was so emotional…and aggravating. It took two nurses, a rapid response nurse, and finally an anesthesiologist to get the job done. For many in the IBD community, we have medical PTSD. A term not to be taken lightly. It’s moments like the one I mentioned before that have scarred me in a way that impacts every single IV I receive. I get anxious, my mind reverts to the past trauma, and I don’t trust that the person taking care of me will be able to get me in one stick.

While this may not be fair to the medical professional, in my 15-plus years with Crohn’s, I can attest to the fact that no matter how many times you say, “you have bad veins” or that you’re a “tough stick”, you’re typically told “it will be fine” and that they “hear that all the time.”

This week—I offer up some tips for communicating your needs when getting blood draws and IVs. Sometimes it can be overwhelming when you feel as though your fears or worries are being downplayed. You may not want to be “that patient”—the one who speaks up and demands the care they deserve but are scared to ask for. This also goes for parents who are watching as their child may be stuck over and over and over again, and not knowing when the right time is to speak up and say something.

  1. Ask for a butterfly needle for blood draws. As soon as you sit down to get your blood drawn, casually say you have tiny veins, and a butterfly works best. If the phlebotomist says you don’t need one (yes this happens)—say you have IBD and get blood draws all the time and know what works best for you, especially considering the number of vials that are generally taken in one sitting.
  2. Give each person two tries. Once I experienced eight tries for an IV, I instituted this rule for my care from that point forward. I usually tell the nurse/phlebotomist nicely at the start that I give each person two tries, and after that someone else must try me. If they successfully give me an IV in one try, I make sure to give them kudos and thank them.
  3. Know your spots. If you have bad veins like me, you know where your “good vein” is. If the antecubital is not working, go for one in your hand. If it’s an IV, try and do your non-dominant hand, as the placement can be challenging if it’s in for multiple days.
  4. Ask the medical professional to break out the vein finder. This can save everyone (not just the patient) some time and energy. This has worked wonders on me in the past to help healthcare professionals locate and access which vein is best to go for. It’s completely painless. It’s like x-ray vision that shines light under your skin and shows the veins below.
  5. Take advantage of numbing cream for pediatric patients (adults can also ask!) While the cream can be great for taking away the sting of the needle, it’s important to keep in mind it can take 30 minutes to activate (which feels like an eternity while mid-flare) and can also make the patient more anxious as they wait. The medicine is also known to shrink the vein underneath as well, which can make getting the IV started a little more challenging. You may consider putting a lidocaine cream on at home before you head to the hospital if you have some available.
  6. Be hydrated and warm. If you anticipate the need for an IV, try and drink as much water as you can ahead of time. Have a heating pad or warm pack placed on your veins. Even putting the warmed-up hospital blankets around your arm prior to the stick can help get you prepped.
  7. Breathe deeply. Try not to watch the needle going in. Focus on a focal point on the wall or go to your happy place to distract yourself from the initial prick of the needle.

The most important thing of all is to be your own best advocate. Don’t worry about hurting feelings or coming off as high maintenance. Offer up as much intel you can in a constructive and calm way as possible. Once you’re diagnosed with IBD and experience the hospitalizations, scopes, surgeries, scans, and lab work, you become a “professional” at being a patient and knowing your body. Unless you use your voice and communicate your needs, they may not be met. Rather than thinking of those caring for you as instilling pain or as the adversary, it’s in our best interest to work together as a team with our physicians and nurses so they can provide the best possible care and so we can build a long-lasting relationship based on trust, rather than fear.

For parents, try and stay as calm as possible and allow the medical professionals to work their magic in distracting your child and making them feel safe and at ease. Your stress level and energy (both positive and negative) will reflect onto your child. If you feel your child is being given the best possible care, try and go with the flow as much as possible. You’ll know when and if you need to speak up. Know that your child is watching. Be tactful, confident, kind, and direct if you believe something different needs to be done or tried. You are your child’s voice piece.

Through the years, whether it’s in the ER or getting a blood draw, the moment I say “I have Crohn’s disease” it’s like I just dropped major street cred. Medical professionals know when you have IBD you have to be tough as nails, you don’t have any other choice. So, when you say that—be confident that when you offer up advice pertaining to IVs and blood draws you have that going for you.

Serving as the Glue to Keep My Care Together: Advice from an IBD mom

For as long as Danielle Fries can remember, Crohn’s disease has been part of her story. Even though she was officially diagnosed with IBD at age 13, she had stomach issues since infancy. Over the last 16 years, she has tried medications, diet adjustments, holistic treatment options, and therapy to reach a happy balance and remission. This week she shares her experience of flaring during pregnancy and how she managed to bring her baby girl into this world and take care of herself at the same time.

When I found out I was expecting, my GI health was stable. I was only taking Lialda and my most recent colonoscopy showed minimal signs of disease, which left me feeling confident. After my first OB appointment, I was referred to MFM (maternal and fetal medicine) for a consult solely because I had Crohn’s and the pregnancy is considered high risk when you have IBD. The MFM specialist took my history, let me ask more than enough questions, and ultimately decided I was on track for a healthy pregnancy. We parted ways feeling confident that my disease was under control and I should return in the third trimester for one more consult to confirm all was well.

My Crohn’s disease had different plans

I struggled early on with morning sickness but something about those stomach pains felt different. As a Crohn’s patient for more than a decade, it can be easy to tell when something is off. By 12 weeks, it was very evident that these symptoms – cramping, nausea, burning, bleeding, the works – were more than just morning sickness. I was on my way to a full-blown flare and my little one growing inside me was stuck for the ride.

My first feeling was fear. I was terrified enough about becoming a mom, but now that my Crohn’s complicated the pregnancy, my mind started racing. Would the baby be able to grow properly? Would the baby end up with complications? Would I make my baby sick? Will my baby end up with Crohn’s like me? The anxiety and unknown of the situation felt beyond overwhelming and I knew I needed to find the right support system to make me feel somewhat in control of all the chaos.

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29 weeks pregnant with baby Nora

Turning to my most trusted fellow IBD warrior, my mom

My mom was my first source of reason. She could understand and relate to what I was going through more than anyone since she too has Crohn’s. She got diagnosed while pregnant and flaring with me! While her Crohn’s has never been as severe as mine, it really helped to find someone who related to the fears and uncertainty I was experiencing and made it through with a positive outcome.

I was extremely fortunate to find a group of specialists to help bring some answers and clarity to my journey. The entire pregnancy I was in close contact with both my OB and the MFM. The MFM was honest in her lack of understanding of how Crohn’s disease can fully affect the pregnancy and referred me to a GI she trusted. My new GI doctor became my confidant, my champion, my source of calm in the pregnancy. She specialized in the intersection of women’s health and Crohn’s disease, with a specific interest in pregnant women. Finding a GI doctor who I trusted to lead me with a care plan for both my Crohn’s and my baby’s development was the greatest sense of relief I felt since the day I found out I was expecting.

Struggles in the Second Trimester

As I entered the second trimester, I struggled to gain weight and it became apparent that my baby was suffering from intrauterine growth restriction (IUGR). My doctor’s visits became more frequent, the tests (non-stress tests, growth ultrasounds, blood flow ultrasounds) increased and I found myself at the doctor 3-5 times a week. As the visits and tests increase, so did my constant questions, fears, and uncertainties. Never ever be afraid to ask questions – you are the one on the journey and deserve to understand what is going on!

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Final date night at 37.5 weeks

I quickly learned that while I was lucky enough to have three doctors in my court supporting myself and my baby, I still had to be my own advocate. Each doctor had their own niche of where they could help, and I had to serve as the glue to keep my care as one seamless plan. I trusted all the doctors, but wish they could have just had a conference call titled “What the heck to do with Danielle Fries and baby?” rather than leave me playing telephone in the middle. But I learned to be the squeaky wheel to advocate for my health and my baby’s health and not fall through the cracks.

An early induction

After many weeks of testing, deliberation, questions, and my baby’s decreasing growth, my doctors and I decided as a team that an early induction was the best course of action. The OB and MFM felt confident that my baby would grow better on the outside than on the inside and the GI doctor wanted to be able to get my health back in control. I trusted my doctors and asked way too many questions, but felt more confident with a plan of action.

My trust in my care team paid off. Baby Nora was born teeny at 38 weeks and measured in at the 3rd percentile. She spent a few days in the NICU while she gained her strength and learned to breathe on her own. Now that teeny nugget is 6 months old and weighing in at the 90th percentile! I complain daily about how heavy she has gotten and that carrying my baby is more work than going to the gym, but I feel so fortunate. Every single roll (and trust me, they are endless) is a reminder that this girl and I were cared for by the best team of doctors who were by our side every step of the way and gave us both our health. Just after giving birth, I started a new treatment regimen of Stelara shots every 4 weeks and I finally feel like I have my Crohn’s disease back under control.

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Three lessons from one IBD mom to another

  1. Find doctors/care team you trust. You will be talking to them a lot and you need to feel comfortable asking anything.
  2. It is okay to be scared. The unknown is scary and add in the hormones, and it’s a recipe for more! But as much as you may be afraid, you can and will do it and your baby will be okay too!
  3. Be willing to adapt. Whether it’s your timeline for getting pregnant, your birth plan, your own treatment regimen, testing, doctors visit frequency, something is bound to change. I really did not want to be induced (I had heard horror stories of 4 days in labor), but ultimately all my doctors agreed that was the best option for me the baby. And things worked out fine (better than I ever expected!) DANIELLE