Voices of IBD (20) - Sara's Story

Welcome to PART 20 of the Inflammatory Bowel Disease series, where we talk to people from all walks of life with this condition; to give everyone a platform to share their story, and help to raise awareness.

This week we talk to Sara about her battle with Crohn's Disease.

What is your name and age?

Sara Elizabeth Cain, 35 Years Old

What is your occupation?

Senior Medical Secretary 

What form of IBD have you got?

Crohn’s Disease

How old were you when you were diagnosed?

I was 33 (Nov 2015), however, I had been diagnosed with IBS at age 17 and dealt with it without really getting any additional help or answers from my doctor, who really just brushed me off as a dramatic teenager. After that, I just stopped talking about it.

About the disease...
What were your main symptoms that led to your diagnosis?

I went to the ER thinking I had appendicitis because I was having such severe pain in my lower abdomen. The tech, who gave me an abdominal ultrasound, noticed something severely off about the loop of bowel that showed up on screen and called the doctor. Next thing I know I was being rushed in for a CT Scan. Turns out that in addition to severe inflammation & fistulas, I had an abscess in my abdominal wall and an elevated white blood cell count. They admitted me and started me on IV antibiotics. 

How did you feel when you got diagnosed?

Honestly, I felt relieved that I finally had an answer and some treatment options. I would have liked to say I was shocked, dismayed, and terrified, but the truth was, it felt like something I had been expecting to hear for a very long time. 

What support did you get during and after your diagnosis?

My parents were with me in the hospital all day long. My husband would have been there too but in my feverish mind, I somehow thought I was doing the right thing by telling him to go to work and that I wasn’t that bad. I, to this day, have no idea why I did that when all I wanted was for him to by my side more than anything, and I know that he was extremely hurt by that. I was very sick, in terrible pain, fevered out of my mind, and really thought in the moment that I was doing the right thing. I honestly didn’t know better. Looking back on it I will never forgive myself for making that choice. My husband is a wonderful, loving and supportive man who has been there for me, and continues to be there for me, every step of the way. I will never take that for granted and will always be grateful to have such an incredible human being as my partner in this life. My husband and my parents have been a wonderful support system through all the hell, and I would not have gotten this far without them.

Do you take medication, if so, what?

Right now I take Pentasa, Zofran, and give myself a Humira injection every other Friday. 

I also take Ambien when I can't sleep; I've had insomnia since childhood and not sleeping seriously exacerbates my symptoms and leaves me barely able to function.

What are your experiences with hospitals? Have you had many stays in hospital or colonoscopies? Do you have an IBD nurse?

I've been in the hospital five times in the past two and half years.  Before that, I hadn’t even so much as been to the ER.

The first hospital stay (in which I choose the hospital closest to my home because at the time I thought my appendix was bursting) was a nightmare. I think some of the worst experiences I had were having my vein rupture during an IV contrast injection, having a nursing student disconnect my failed IV and not report it, which led me to be feverish and without any fluids for 9 hours. My mother and best friend came in and raised hell. At which point they brought down a nurse practitioner from oncology to run my IV. She was so sweet, and a true expert. Her name was Shirley. I think if I didn’t have a viable vein she probably would have created one! 

The next few times were just overnight admissions and a few ER trips for pain, nausea, and one particularly harrowing gastritis flare that will haunt me for years to come.

My next multi-day hospital stay came last year on February 27th, 2017, when I had my bowel resection surgery (ileocolic resection in which my terminal ileum and the right half of my colon were removed) after I developed a bowel obstruction from scar tissue. I was in the hospital for five days, and I must say it was an awesome hospital stay. It felt very strange because I had my surgery in the hospital where I work, so the surroundings and the people were all very familiar, and my co-workers came up to visit me on multiple occasions, which was very sweet.

It just so happens that after my surgery I got a room in the “ultra fancy wing” by pure chance.There were no other rooms available at the time and I was told that I would have to give it up and move to a regular double room if this room was requested. Thankfully no one requested it during the duration of my stay, and I had a huge river view room in a beautiful wing all to myself. That was really nice and was definitely a much-needed experience at a time when I was truly depressed and terrified. 

I have a wonderful Gastroenterologist’s who I have been seeing since my first hospital admission and I would recommend him to anyone. Dr Richard Fazio In Brooklyn NY.

What seems to affect your IBD the most? What triggers it?

Stress. Times of severe stress brings out the worst in my condition. That being said so does food, and I have to be very careful of raw veggies and fried food, my worst enemies. Especially asparagus! Ouch.

Do you currently, or have in the past, struggled with mental health? If so, what?

I have struggled with severe anxiety, confidence, and self-worth issues for as long as I can remember.

I was formally diagnosed with Generalized Anxiety Disorder (GAD) when I started seeing a therapist in my mid 20’s.

Was this because of your IBD, or influenced by your IBD or vice versa?

I think it’s just part of my genetic makeup, as it runs in my family. I am sure this has contributed to my IBD, or at least exacerbated my symptoms.

Do you get support for your mental health?

Honestly, not at the moment. I wish I could say yes but the truth is that as rough as things have been in my life, especially the last few months, I have not put the effort into finding a new therapist.

Do you feel like you get the right support?

When I seek support, yes. But truthfully I have a bad habit of trying to be superwoman and often catch myself trying to give my unconditional support to others, even at my own expense. I know at 35 I should know better and that I alone am responsible for the choices I make. That being said I have been making a very big effort to put myself first as often as possible.

How do you cope?

Meditation, and snuggling with my dogs.

What is your go-to routine for when you are flaring?

Rest, medication, a heating pad, snuggling with my dogs, and going on “bowel rest” (aka a liquid diet) for a few days, or sometimes a week.

What do you do to give yourself a break or relax?

Not much. I'm still trying to teach myself this trick. Anxiety issues often impede my ability to relax as I'm constantly looping worst-case scenarios in my head.

Meditation, mainly mindfulness practices help with this. And hot baths... if I do anything for myself to relax it’s taking a hot bath.

What lifestyle/diet/changes have you made to cope with your IBD?

No raw veggies (except for those safety veggies like lettuce and spinach). Lots of fruit, baby food, smoothies, soup, and eggs. If I'm in pain I'll lay on the couch and snuggle with my dogs.

What advice would you give to someone who may think they are experiencing early signs?

Don’t ignore it. See a doctor ASAP.

What advice would you give to the friends and family of those with IBD?

Be patient, sometimes it takes us longer to do what takes you seconds. Be understanding, we are not ignoring you, we are sick. We are not insulting you by turning down food, we may just not be able to safely eat what you’ve offered. Don’t give up on us if the road gets too hard and don’t stop loving us if we get too sick. Don’t judge us at our worst, just know that your loving support and presence helps us to have more days when we are at our best. Know that we appreciate you.

If there is one thing that keeps you motivated and focused through it all, what would that be?

Honestly, it has been a struggle. Some days I can barely get out of bed and the only motivation I have is the need to earn a paycheck. Other days I feel like I can take on the world!

What is your favourite quote?

“Courage is what it takes to stand up and speak. 
Courage is also what it takes to sit down and listen.” 
Winston Churchill

Thank you Sara for sharing your story here on BecxBlogs. If you are affected by Crohn's or Colitis; please go to the Crohn's & Colitis UK website for further support and information.

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