Not All Holidays Are Created Equal

For many people, holidays are a point of struggle. Memories, sometimes even flashbacks of hospital visits, can linger, blocking good holiday cheer. We sometimes fear that we may land in the hospital again for yet another holiday. This tends to be the case for many people dealing with flares around the holiday and it’s not easy to manage while in the spotlight socializing at holiday get-togethers. In fact, the stress of even getting there can be a big trigger.

Just getting dressed to go to a party can be stressful and emotional.

When you’re pulling up your dress pants or putting on your Sunday or Christmas/Holiday best, things might take an ugly turn. You may realize that you’re clothes have suddenly become parachutes that show off your worst assets. Then there are a few of us who put on our favorite dresses and realize that due to the steroids we’ve been on long-term, “snug” is a word that no longer applies. It can be detrimental to your self-esteem and mental health and it can completely take you by surprise.

Preparing food can be difficult, but sitting down to eat while others feast on things you cannot touch can be even more painful. It can be hard sometimes to control your urge to grab “just a small bite” knowing that you will most likely severely pay for it later. And sometimes, there comes a point where we just want to live in the moment and we will take that bite with the chance.

Small talk can be difficult for those living with any type of chronic illness, too.

Especially for those whose lives are consumed by the illness. When it comes to small talk, you might think “no one wants to hear about how sick I actually am or how my last hospital visit went.” So many times, we remain quiet, uncomfortable and count down the hours and minutes until we can go home, hop in our PJ’s, pull out our flare foods and binge on some Netflix.

Don’t be offended.

We go, despite all of these concerns, anxieties and fears… because we love you. And we need your support. So please, don’t be offended.


Throwback picture of Halloween – a holiday every IBD-er can enjoy 🙂


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Crohn’s Disease of the Vulva

In the last few articles (What Women Should Know About Living with IBD, and Crohn’s Disease in Your Where?), we’ve talked about the complications that the female reproductive system can endure, such as vulvar inflammation. In this article, we’ll dig a little deeper into how Crohn’s can manifest in the vulva, how to identify symptoms, and how it can be diagnosed. It’s not talked about enough, and far too many women suffer in silence, not knowing where they can find support.

Crohn’s disease of the vulva can be very painful.

It can be extremely hard to diagnose and additionally, hard to treat. Often, some of these complications can be misdiagnosed due to symptoms presenting without bowel issues or problems. My care team involves a high-risk OBGYN and a Urologist as well as my most important team member, my GI.

But there are some things that GI’s might not specialize in, like vulvar Crohn’s, that may require multiple team members. This will ensure they are providing the best care for patients who struggle with vaginal symptoms.

So what are the symptoms and what can exactly be defined at “Vulvar Crohn’s?”

Swelling of the labia, ulcers in/around the vulva and topical lesions may be some of your first clues. Painful swelling, bumps, and ulcers can become a very serious issue and in some cases, surgery might be necessary if the patient fails different courses of antibiotics and immunosuppressants.

So why is it so hard to diagnose?

First, there is a stigma surrounding these symptoms and many women are embarrassed to deal with these issues. Sex is impacted, there is a lot of pain involved and if you’ve ever had a fistula, you know the pain an open wound or impacted wound can bring. Unfortunately, some of these abscesses and other symptoms can appear like an STD. Many gynecologists will screen for sexually transmitted diseases to rule it out, especially if they’re unaware of your Crohn’s. Some doctors may use a pelvic MRI to help determine the specific diagnosis in addition to finding the right course of treatment.

Again, this is why it’s so important to be completely open and honest regarding your sexual health, including any pain or symptoms you may have. The worst thing you can do is ignore the issue, as it may become incredibly painful, infected and even result in an abscess requiring surgery.

What types of complications are observed in the vulva with this type of Crohn’s?

Edema or swelling of the vulva may occur. Ulcers may also be present. Some ulcers may be completely asymptomatic, with no pain at all, but can wreak havoc long-term. Some may actually appear as small knife-like cuts in the perianal and vulvar regions, or in the folds of the vagina. The most common symptom of vulvar Crohn’s is slow-to-heal labial swelling on only one side. Some ulcers or abscesses may require drainage if they do not respond to traditional therapy.

Have you had experiences with vulvar inflammatory bowel disease? How did it affect your physical or mental health?

See the full post here at Crohn’s of the Vulva


Expecting the Unexpected

One of the worst parts about going to bed with chronic illness is knowing that you’ll wake up still next to it, soon realizing you can’t do a walk of shame out the door to get away because you’re literally chained to an illness that can put out your fire for days. I don’t mean to be negative, but it’s many patient’s reality

…waking up day after day in the same nightmare you’ve lived in for far too long.

Going to bed knowing the next day might be the exact same bad day that was today, maybe even worse. Not knowing what will happen is painful and not having people around you who understand is far more difficult and expends far more energy than necessary.

In June, I experienced joblessness. In October, I lost my insurance. To say that 2017 was a character-building year is an understatement. I learned what it meant to be nearly homeless, on food stamps and not being able to make rent. I learned that taking any job would be not a choice but a necessity for me to keep my house and my rescue animals. I was 30 years old and had nothing left to my name, nothing in my fridge and what’s worse, I felt like I had no support.

When I finally did achieve employment, it was through a very wonderful company that cares deeply about its employees. Health Union has truly saved me in many ways, and for that, I express my solemn gratitude for them and everyone in this community, who seem to want me to keep writing.

My dream came true when I lost everything and I’ve never looked back.

Writing has always been my passion, my way of communicating to the world. I’m an introvert, so when I first had to learn how to deal with a serious disease and then more illnesses along the way, it was extremely difficult to me to reach out for help. And for so many years, I was so grossly misinformed by certain doctors and specialists which made accepting my disease even harder. Not understanding your disease can make you want to crawl into a hole and never talk about it. So I understand why so many people “stay in the bathroom” with their disease secrets. I am certainly glad that I have found support online, through social media and patient advocacy groups that I can truly rely on in my time of need. These amazing, supportive people will also respect my silence – as they know this is one of the ways I cope.

I know that what I do for a living now, working multiple part-time jobs in addition to writing and blogging full-time, doesn’t exactly mean stability to some of my family members or friends. Someday, I wish just to be enough. To make them proud by making others feel empowered and educating others on a disease they may know so little about.

I’m happy now. Genuinely happy.

I may not be where I would like to be financially. I may always have bills in collections because let’s face it,  there will always be more money going out than coming in for me, no matter how many jobs I work. I have two beautiful nieces and nephews and one on the way that I could not be more excited about. I get to travel a few times a year if/when I’m asked to collaborate with other patient leaders and advocates and I’m still amazed that other people want to hear MY story. I’m grateful that both my blessings and curses have impacted people enough to say “can you explain to me how your disease affects you?” The most rewarding thing to a patient living with chronic disease can be hearing “Thank you for sharing your story with me; I have learned so much and have such a different outlook on the things that patients go through.” That, and a few other nice things.


Being a patient is a full-time job and I will back up anyone who says that for the rest of my life. People who don’t experience illness don’t realize how much illness can consume a person’s life and how much it can change their path… until it does.

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See the full article here on Expecting the Unexpected