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 CrohnsDisease.com: Crohn’s of the Vulva

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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 CrohnsDisease.com: Expecting the Unexpected

Advocacy & Politics

I grew up in a family that didn’t speak of politics. I mean, I don’t remember politics EVER being brought into a conversation in any family or one on one conversations. Especially not at the dinner table. In fact, I grew up without TV. I appreciate it now and if I ever have kids, will likely have the same rules apply in my household.

But there came a time in my life that politics became more than a tight-lipped topic.

It came my turn to educate myself, speak up, and get involved with things that would affect my future. That moment came soon after I was diagnosed with Crohn’s disease. I got to vote in the presidential election when I moved away to college and it was a big deal to me, though you’d never really know it by having conversations with me. A time and a place? Well, the last few years it has been the time and the place and it was evident to me that I must do my part to feel heard and to do what I feel I need to.. writing to my Representatives, Resistbot and appeals have been a large part of my vocabulary in the last 3 years.

But one question always seems to float to the surface: why must I have to explain to people why they should care about me? About my well-being? Because for me and my “family,” healthcare is my well-being. And truth be told, no one wants to be just a number.

So why do I continue? Because I know people so much more ill than myself who aren’t able to get out physically to make it out to advocacy events due to their disability. My ability decides my direction – I won’t stop until I physically have to.

My voice speaks for those who can’t be heard.

This is the one reason that advocacy keeps me grounded every day I wake up and decide to voice my truth: others depend on me.

So little of this actually has to do with politics, and more about actually caring for your fellow man. Imagine during this time where we see so much crisis, being able to put someone else’s needs over your own…especially over your wants. It has to do with caring for one another, so that we may all have a future, not just bettering one part of the population.

I’ll step off my political pedestal and leave you with this: I wake up 365 days a year knowing that without advocacy, my life wouldn’t amount to much. This is what I choose to do to serve people. Realizing that I have to keep explaining to others why I matter and why my life is important is one of the most heart-breaking things a patient with chronic medical issues can go through. Feeling meaningless, invisible and worthless in a crowd of millions of people. Please don’t make me explain why my life is valuable.

Want to become more involved in your legislature but not sure where to begin?

Text RESIST to 50409 and ResistBot help you contact your officials – from there it will prompt you to put in your location and find out who your representatives are and how to get in touch with them. Simply compose a text and it will fax that text to them automatically. Just follow the steps.

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You can also Visit CCF’s National Council of College Leaders: http://www.crohnscolitisfoundation.org/get-involved/national-council-of-college-leaders/ or TheHill.com

See the full article here: Advocacy & Politics 

The Power of Yoga for IBD

There are so many positives to practicing yoga. For me, short-term it changes my mood, my level of anxiety and relaxation and it seems to actually help calm down my gut a little bit. I find as I hone in on my body, instead of my surroundings and environment, I am able to better focus with a clear state of mind.

After I complete my routine, I feel refreshed, renewed and like I’ve changed my batteries.

According to Yoga International, “Yoga can reduce stress, anxiety, and fatigue in people living with chronic illness, and it can improve immune function. Yoga can also stimulate the parasympathetic nervous system (the part of the nervous system that helps you to rest and heal) and increase GABA levels in your body (GABA—gamma-amino butyric acid—is a neurotransmitter which can help calm the brain. Low levels of GABA have been linked to anxiety, depression, and insomnia).”

Yoga has helped many people physically, mentally & psychosocially recover from traumatic events such as surgery, long hospital stays and overall well-being (1). For me personally, if I don’t do yoga twice a day, I find myself more irritable and much sorer than if I had done my practice. Without yoga, I find my arthritis is much more obvious to me in the way I walk, the way I handle objects and my overall coordination.

I have been religiously practicing mindfulness and meditative yoga twice a day for the last two months using the App “Daily Burn.”  There is a short quiz in the beginning about what type of classes you’d like to take and yoga is included in many categories. There are a ton of classes to pick from that are beneficial to specific groups of people. I picked strength training and one of the classes is meditative yoga; I do this once when I wake up and once before bed. I’ve been sleeping better and my anxiety has reduced before bed, which is when it’s at its peak. When I feel like I’m having a down, depressing day, I’ve made a point to “press my restart button” and do some yoga, whether it’s in a chair, standing up, sitting on the porch, or on my bed. My endorphins kick in which helps as a form of short-term therapy for me.

Because my arthritis impacts me in different ways, every day when I first get on my mat, there are certain adaptive devices I use to help me get into a better rhythm. I use blocks, a yoga wheel, towels, pillows and other props. Sometimes sitting in one position during meditative yoga can be painful not only for my bottom but also my spine. I am currently using a gel cushion to sit on to make things a little more comfortable when sitting for long periods of time.

As an athlete dealing with pretty consistent Crohn’s flares, it’s hard to just get back on the road and start running again. Yoga has provided me avenues to explore abilities of each body part. The mindfulness of yoga is a very important aspect. It lets my body “melt” and stretch as far as possible, letting go of the stress in my joints. Just like many people use foam rollers to help their recovery process, I look at yoga like my recovery tool when I’ve physically had a very bad day. Because of flares and being unable to participate in endurance events, at least when I practice yoga, it feels like I’m a bigger part of something.

Doing yoga in a studio with an Instructor, friends and an appropriate environment can make a world of a difference. There are often many free local events that you could check out in your town, especially in summer. Where I’m located, we have Yoga in the Park every week in different locations, as well as Yoga on the Deck located downtown where all the action is happening. Yoga has helped me to be a bit more social. So that, for me, is huge!

Do you practice yoga? How do you think it positively affects you short & long-term?

New to yoga? Try searching for free classes on YouTube to get started!

See the full article here on CrohnsDisease.com: Power of Yoga