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.

When I looked in her eyes, I saw myself

I recently met a 15-year-old girl who was diagnosed with Crohn’s disease. Like many parents of teens newly diagnosed with inflammatory bowel disease, her mom reached out to me for words of advice and comfort. It’s not too often that upon learning this news and connecting with families that I get to meet both the parent and teen in the same room, at the same time.

Maybe this can be chalked up to pregnancy hormones. Maybe it was because my heart hurt for her. It was probably both. But, I kept getting emotional looking at her and talking to her. My eyes welled up with tears because without her saying a word, I felt and could see her pain. In that moment, I felt like I had time traveled back to the first few months of my diagnosis.

I felt the loneliness and isolation she was feeling, even though she was in a roomful of people. I watched as we ate dinner and she quietly sauntered in the hallway, behind the kitchen table to make her way to the bathroom…more than six times in less than an hour. I listened as people questioned why she wasn’t eating…and told her to get ready for dessert. Her mom telling us as she was in the bathroom that she’d dropped four pounds in the last week and only had an Ensure to drink that day. I told everyone to stop talking about food and allow her to come into the kitchen when she felt ready. I remember all too well how it feels when people are watching you like a hawk, questioning every morsel you put down your throat. Food and the relationship we have with it while taking on IBD and navigating familial relationships and friendships can feel like psychological warfare.

She pulled her mom to the side after she overheard her telling me about her medical issues and told her not to tell anyone. I touched her arm and with tears in my eyes, I quietly told her I’ve had Crohn’s for more than 13 years…and that I understood how she felt. I pointed to my 18-month-old running around and to my baby bump and told her that if she wanted a family in her future, it was still possible, despite her disease.

Oftentimes, it can be difficult to connect with teenagers, because they seem guarded and are private about their disease. For many, it’s still a top-secret part of who they are. I get it. I took me nearly a decade to share that I had Crohn’s disease with the world. There’s no sense in rushing anybody. We all find the time that is right. We all know when we feel strong enough physically, mentally and emotionally to open ourselves up to questions, opinions and thoughts from those around us. It’s completely normal to want to keep others (especially strangers) at arm’s length, because during those impressionable young years, you don’t want to be seen as different. You know the moment you say, “I have IBD.”… it’s truly your reality. Your identity, how people view you…it’s all forever changed.

A message for parents

Parents—I know it must be SO difficult to feel like you’re on the outside looking in at your child in debilitating pain as they deal with the burden of a lifelong disease for which there is no cure. If this is a “new” disease to you and your family, you probably feel overwhelmed by all the information on the internet, what you’re hearing from specialists and what is best for your child. Lean on people like me, who live your child’s reality. Ask us the questions. Talk to us about how it feels. Equip yourself with knowledge and understanding so you can get acclimated to life with chronic disease in your family, just as your child needs to. It’s a learning process for every person in the family. Have patience. I know it sucks. I know there are times you just feel like screaming from the tallest mountain… “WHY IS THIS HAPPENING!!!???” I know you are reminiscing back to when life seemed so simple. When health was never in question. There’s no use in romanticizing the past.

You must embrace your new normal and be a pillar of strength for your child. If they see you waver, if they see you upset and frantic, that will directly impact how they feel. Communicate with your child and see if they’d like to talk with someone else who is living with Crohn’s disease or ulcerative colitis. If not now, maybe later. The IBD family is strong, resilient and welcoming…and we’re not going anywhere.