9 Things I Have Learned From Living With Ulcerative Colitis

It has been almost 12 years since I was diagnosed with ulcerative colitis and I have learned a lot since then. As a sixth grader, I had no idea what my diagnosis would mean, but it has most certainly changed my life. Before getting into what I have learned, here’s a brief synopsis of my story.

I was originally told by a doctor who I met only once that I did not have enough fiber in my diet. Anyone want to take a guess how that went when I began to increase my fiber intake? You guessed it. The symptoms got 10 times worse. After that disaster, another doctor had me get an endoscopy, a barium x-ray and a colonoscopy. From that experience, I discovered I never want to get a barium x-ray again. When that was all said and done, I was diagnosed with ulcerative colitis. Since then, I have found out that my case is a little more along the lines of the Crohn’s disease, but it does not change the medication I need to take. From the regular colonoscopies to the bad days, I have learned what it means for me to have ulcerative colitis (UC). While no one has the same experience, this is what I have learned over the years about my UC. I still have plenty to learn, but these are some of the things I have learned that have changed my life.

1. You will continue finding out that people you have known for years have a similar diagnosis.

This never ceases to amaze me. Over the years, I have discovered that so many people I know have UC, Crohn’s or some form of inflammatory bowel disease (IBD). Not surprisingly, it makes you feel way more comfortable with that person. It’s like a bonding experience. If I have a question to ask them about their experiences, I know they are always open to talk about it. Bathroom talk is widely accepted in the IBD community, and I very much appreciate that. If we’re being honest, you really can’t be diagnosed with any form of IBD and not appreciate poop jokes.

2. You will never stop learning about your condition.

And no one wants to hear about the gross details…what a bummer. Pun intended.

3. You will have really terrible days, and you won’t be able to do anything about it.

I have figured out that laying on my stomach sometimes relieves pain, but on many of my worst days, I can’t even stand up straight. Other than that, I can only crawl around the house while staying close to the bathroom. No matter what anyone says, staying at home on bad days is actually not even close to being great. I feel completely helpless and basically all I can think about is how much pain I am in and how ridiculously unproductive I am being.

4. You will figure out who understands invisible diseases.

From family members to teachers, some people just don’t get it. I’ve been so blessed with amazing people in my life that are understanding, but it’s surprising who doesn’t believe you. “You don’t look sick, though…” Thank you…?

5. Colonoscopies are actually awesome.

Some may disagree, but stepping on the scale after a clean-out is pretty cool. I also really dig the deep sleep and the cool socks you get to wear during the procedure. During the first colonoscopy I had as a pediatric patient, I was given a stuffed animal. I told my mom it was like we bought the stuffed animal and I got a free colonoscopy with it. She informed me that would probably not be a big selling point. Weird.

6. As a future special educator, I have gained a better understanding of invisible diseases.

Although I have always been understanding of those with invisible diseases, I used to struggle with understanding the pain behind an invisible disease, like depression and anxiety. I consider my UC a blessing in disguise because one day, I will be able to be understanding of my students when no one else is. My goal is to not only be an effective educator, but a responsive patient and considerate teacher.

7. Medications may not get reduced and that’s OK.

When I tell people my disease has yet to be cured they immediately make assumptions. Usually the only correct assumptions they make are relating to the massive amounts of medication I take. No matter how many medications I take, I know they are made to help me work towards keeping my UC under control.

8. You will figure out you are not alone.

This is incredibly reassuring. Since the very beginning of my diagnosis, I have been especially aware of those around me who are constantly supporting me. Additionally, the online presence of the Crohn’s & Colitis Foundation of America and other supporters have greatly increased over the past few years. Believe it or not, it helps to hear the stories of those in very similar situations as your own.

9. “Take these broken wings and learn to fly.”

When I was diagnosed with ulcerative colitis in sixth grade, I had to take my imperfect intestines and learn how to do life with them in mind. Since then, I have had to approach everything with my guts in mind. While that sounds like a pain, it’s taught me the importance of my own health. Whether I am traveling to another country or going to hang out at a friend’s house, I have to think of myself. Do I need to bring my medications along, or will I be home in time to take them? Do I need a doctor’s note, or just my prescriptions? What should I eat? What shouldn’t I eat? Where is the nearest bathroom? These have all become a part of my internal dialogue and I rarely have to think twice about some of them. However, it has changed how I have taken my broken wings and learned to fly.

Even though I have been dealing with my UC for years, I still have plenty to learn about how to “take these broken wings and learn to fly.” Keep fighting and learning about your colon.

SOURCE:https://themighty.com/

THIS WOMAN CAN SMELL PARKINSON’S DISEASE

Meet the woman who can smell Parkinson’s disease.

Joy Milne, a retired nurse, has an extraordinary sense of smell. However, it goes beyond simply having a very sensitive nose.

Milne has the ability to detect Parkinson’s disease years before a doctor’s diagnosis.

As described by Milne herself: “I’m in a tiny, tiny branch of the population somewhere between a dog and a human.”

She first stumbled across her unusual gift when her husband Les started omitting a strange odour.

At first, Milne attributed the smell to bad hygiene on her husband’s part, but everything changed when the couple attended a Parkinson’s meeting.

She then realised that her husband smelt the same as the other people in the room.

10 years later, Les was diagnosed with Parkinson’s disease.

“I smelled it 10 to 12 years before Les was diagnosed,” Milne explains. “As the Parkinson’s got worse, the smell got worse.

“It became just part of him, but I with my sensitive sense of smell, I could smell it all the time and it became quite uncomfortable really, but I had the sense not to nag too much.”

According to Milne, Parkinson’s disease has a very thick, musky smell.

Sadly, Les passed away at 65 years old, 20 years after his official Parkinson’s diagnosis.

Milne is now working with scientists to create a test that can detect Parkinson’s at an earlier stage of the disease.

Professor Perdita Barran, from the University of Manchester, illustrated how they’re testing Milne’s sense of smell.

“This experiment is to see whether Joy can distinguish the Parkinson’s smells from the samples that we’ve taken from patients as they’re separated and if she smells it we’ll then know right away what that molecule is.”

So far, Milne’s tests have been producing very promising results in the laboratory.

She’s feeling very optimistic about what the future may hold for the fight against Parkinson’s disease.

“If we get the test right, then we’ll never get to that stage because at that stage of diagnosis 60 to 70 per cent of damage, neural damage, is already done,” she says.

One person in the UK is told that they have Parkinson’s disease every hour, as stated by Parkinson’s UK.

That amounts to approximately 127,000 people in the UK and one out of every 500 people in the world.

There is currently no cure for the disease. However, there is hope that breakthroughs may be made in the future.

SOURCE:http://www.independent.co.uk/

Chronic Pain & Me: A Mom’s Tale

According to a report by the Institute of Medicine (IOM), more than 116 million Americans suffer from chronic pain. Managing chronic pain can be a complicated task, especially for expecting mothers with limited options. In partnership with Walgreens, this feature follows three mothers on their journey through pregnancy and their battle with chronic pain.

 Danielle Pumilia (Seattle, Washington)

31-year-old Danielle Pumilia was diagnosed with rheumatoid arthritis right after delivering her first child. Following months of random pains and body numbness, the Washington native was ready for an answer. “I would wake up and my hands would be stuck, I couldn’t do anything,” she said. After being misdiagnosed at several neighboring hospitals, her condition escalated. She couldn’t walk; she couldn’t move. Luckily for the young mother, her internist husband noticed the signs and suggested she see a rheumatologist. With compassionate care, Pumilia’s rheumatologist placed her on the appropriate medications to turn her life around. For the first time, Pumilia was able to control her pain. After months of guidance from her doctor and her husband by her side, Pumilia gave birth to her second child exactly five months ago.

 

Ava Meena (Charlotte, North Carolina)

When 27-year-old Ava Meena first experienced pain, she didn’t know what was causing it. She traveled to two specialists for clarity before receiving a formal diagnosis. The young North Carolinian had fibromyalgia and she needed help. “My condition only allows me to do one activity a day,” she said. However, with the help of her doctors, Meena can manage her life without her pain managing her. During a routine checkup at beginning of last year, she found out she was pregnant. Meena listened to her doctors and immediately replaced her regular medications with Acetaminophen. The young mother is now working with her doctors to balance her chronic pain with over-the-counter pain relief solutions and preparing for delivery of her first child.

 

Stacey Philpot (Clairmont, Florida)

Growing up, Stacey Philpot never knew what it meant to be healthy. For as long as she can remember, the 39-year-old has battled disease after disease, infection after infection. As she got older, her health continued to decline. Ten years ago, she found she had CVID (Common variable immunodeficiency disorder), rheumatoid arthritis, and vasculitis. With a daily medication regimen and scheduled doctor’s visits, Philpot thought she had it all under control, until a trip to the neurologist changed everything. Her pre-screening pregnancy test results for an MRI came back positive. She was pregnant and expecting a baby girl. A seemingly regular checkup turned into a blessing. From the loving guidance and prenatal care, she received from her doctors to the constant support of her family, the 39-year-old who struggled with illness her entire life, was about to give birth to her first child.  For the next several months, alongside her doctors, Stacey fought to make the impossible possible. “I wasn’t ever sure that I’d ever actually have her. My body was going so crazy. I didn’t ever know if my husband would actually meet her. I just wanted to treasure every day that she was living inside of me and I was getting to know her,” said Philpot. With the help of specialists, her primary care doctor, and the use of Acetaminophen to manage her chronic pain, Philpot was able to completely wean off of her prescription pain medication and safely deliver a healthy baby girl. She is now managing a disease that she thought would forever control her life, and embracing the miracle of motherhood with her loved ones.

A study by the Institute of Medicine revealed that chronic pain costs account for more than $600 billion a year in medical treatments. A patient should consult their doctor to help manage their condition and review pain relief options throughout their pregnancy. Walgreens makes it easy for expectant mothers to find the right solutions for chronic pain. Walgreens is always here to help you feel good.

SOURCE:https://www.huffingtonpost.com