Learning to Live With Ulcerative Colitis

“An interesting read about living with Ulcerative Colitis.”

— Dr. Dale

From Learning to Live With Ulcerative Colitis 

When I first wrote about living with ulcerative colitis (UC), I was very optimistic, as I typically am. I had just been released from the hospital and was on a heavy dose of steroids to control my symptoms and inflammation. I was a rookie. I didn’t know what was to come, but I was just so happy to get back to my normal life and be free.

What I didn’t know was that three years later, I still won’t have found freedom from my disease. Three years. Three years of pain, various medications, steroids, colonoscopies, blood labs, tests, trips to Mass General, desperate calls to my doctor.

One of the worst parts about UC, IMO, is the uncertainty of it. No one knows the cause, how your body will react to certain medications, when or why a flare will occur, a cure. Not being able to understand why this is happening makes things more difficult for one reason: on top of all the physical symptoms, it makes me feel guilty. Am I doing something wrong? Should I be taking different vitamins? Spending my money on acupuncture? Should I stop eating gluten? Should I stop drinking alcohol? Should I stop having a life?

I don’t know. No one knows. So, I just keep living, day after day, unsure of when I’m going to be bedridden in the fetal position again.

Despite my struggle with UC, I consider myself truly blessed. I know that God would not put so hard a burden on me that He knew I could not handle. I count the positives in my life, and understand I could have been dealt far greater problems. I am strong, in every sense of the word. My parents instilled that strength and confidence in me, yet they worry about my health more than I do. I accept things as they are. I accept that I have UC, and that I have to wake up and take several pills every day, even though I hate medication. I accept that despite being in my mid-20s I have annual colonoscopies. I accept that I have to get bi-monthly blood labs to be sure my medicine isn’t affecting my liver. I accept that I often have to pretend I am okay because I can’t continuously cancel plans, or miss big-moments. But what I forget sometimes is that this isn’t normal. I forget that other people, besides me, care about me and I need to manage that. UC has become such a part of who I am, that when people ask me if I’m feeling okay, it takes me by surprise to remember that I’m very sick.

Since my rookie year, I’ve learned a few things:

· People react differently to different medications – one person’s side effects may be completely different than yours

· Don’t consider what you read online as fact

· Sometimes you’re going to cry and it’s okay

· People LOVE to complain. Keep counting your blessings rather than joining their pity  parties

· Vegetables aren’t always good for you. Eat them sparingly

· Cinnamon is an anti-inflammatory. Add it to your coffee

· Baby wipes are not just for babies

· Tylenol is okay, not ibuprofen

· Invest in a heating pad, it is magical

· Drink more water than you want to

· Going for a short, slow walk can help pain. If you’re too sick for a short walk, go to the ER

The past three years I have been on and off steroids, which is terrible to be on and off of for that long. I consider steroids the devil’s drug. They work immediately, but have terrible side effects. Along with steroids, I started with a Level One medication, an aminosalicylate, which stopped working for me after a year. I moved onto a Level Two medication, an immunosuppressant, which has also now stopped working. I’m moving up and onto the final Level of medications: biologics. This medication is not a pill, it is an infusion, I am out of pill-options.

My goal going into this new medication is to find the freedom that three years ago I thought would come as soon as I was released from the hospital: remission. If I don’t find myself in remission, the last step for me is surgery. I’m not afraid of my UC, nor am I afraid of what it may bring. A friend of mine who had the surgery explained it well, she told me that you lose one year, but get the rest of your life back.

Like everything else around my disease, I’m unsure. I’m unsure about what the future will hold for me, but I do know that it will be nothing less than great. The rest of my life is a blank slate, and I intend to overfill it with love, family, friends, and uber-happy moments. I don’t have much space allotted in my future for sitting on the couch with my heating pad. So, we shall see where this next year takes me, I’m aiming for freedom.

Nearly half of adults in US infected with HPV

“An interesting read about adults in the U.S. with HPV”

— Dr. Dale

From Nearly half of adults in US infected with HPV

If you currently are sexually active, have been sexually active in the past or have sex in the future, there's an extremely high chance that at some point before your sex life is over you will have been infected with the human papillomavirus (HPV), a sexually transmitted infection that is linked to several cancers. Just this month, the National Center for Health Statistics announced that it found that 45.2 percent of men and 39.9 percent of women 18 to 59 years in age were infected with genital HPV during 2013 to 2014.

Even more alarming, the center found that during the same time period 25.1 percent of men and 20.4 percent of women were exposed to high-risk genital HPV, which result in about 31,000 cases of cancereach year.

A viral infection, HPV is the most common sexually transmitted infection and can be spread between partners through anal, vaginal, or oral sex, and even through close skin-to-skin touching. The center's latest figures are a reminder that nearly everyone who is sexually active becomes infected with HPV during some point in their lives, according to the federal Centers for Disease Control and Prevention (which includes the NCHS).

"HPV is very common; up to 80 percent of sexually active people have been exposed at some point in their lives," says Summer Dewdney, MD, a gynecologic oncologist at Rush University Medical Center. "But the vast majority never develop any symptoms, and the body's immune system can usually clear HPV on its own within two years."

HPV causes nearly all cervical and oral cancers

But other times, the infection does not clear up. And since there is no cure for HPV, the virus puts people at risk for potentially serious problems—such as cancer and genital warts—down the road. Every year, more than 27,000 women and men are affected by the following cancers linked to HPV:

• Anal cancer
• Cervical cancer
• Oropharyngeal cancer, which includes oral cancer and throat cancer
• Penile cancer
• Vaginal cancer
• Vulvar cancer

Almost all of the more than 11,000 cases of cervical cancers diagnosed in the U.S. each year are caused by HPV. While oral cancers used to be attributed mainly to tobacco and alcohol, now 72 percent of oral cancers (particularly in young men) are caused by HPV.

"There has been significant change in the last decade. The HPV-associated oropharyngeal cancer has reached epidemic proportions," says Kerstin Stenson, MD, a head and neck cancer surgeon at Rush.

"By 2020, HPV is projected to cause more oropharyngeal cancers than cervical cancers in the U.S.," adds Karen Lui, MD, a pediatrician at Rush

Protect yourself with HPV vaccine ...

The doctors recommend taking precautions to prevent HPV infection and catch infections that do occur before they become major health problems. "We have a vaccine for cancer," Dewdney says. "Use it!"

Two vaccines, Cervarix and Gardasil, are available to protect against the types of HPV that cause the most cervical cancers, as well as anal cancers in men. A doctor can administer the vaccine in three shots over a six-month period.

• Gardasil is recommended for girls and women between ages 9 and 26
• Cervarix is recommended for girls who are 9 years of age, plus women of any age who have not previously been vaccinated and have not previously been diagnosed with cervical cancer.
• The HPV vaccine is also recommended for boys, starting at age 11. 

"If you aren't eligible but your children are the right ages, consider taking them to be vaccinated," Dewdney says. "But the important thing to know is that even if you were not vaccinated as a child, you can still get the vaccine up to age 26."

... get regular pap tests and dental exams ...

Additionally, Lui recommends annual PAP tests for women starting at 21 years of age—whether they've been vaccinated or not. Pap tests enable doctors to detect abnormalities—changes on the cells on a woman's cervix—and take action before cervical cancer develops. "Screening is the best way to catch HPV-related cancers early," Liu says.

"Once you turn 30, we recommend pap smears every five years as long as you have HPV testing with your Pap and the results are negative," Dewdney says. "In addition, any bleeding with intercourse should be evaluated by a gynecologist."

According to the American Cancer Society, between 60 and 80 percent of women in the United States with newly diagnosed invasive cervical cancer have not had a Pap test in the past five years. And, even more alarming, many of these women have never had the exam.

Stenson stresses the importance of regular visits to the dentist. "Dentists play a key role in detecting oral cancer," she says. "You might not see a primary care physician even once a year, but most people see their dentist twice a year. Having regular dental visits can help catch cancers early to help ensure the best outcome."

... also, practice safe sex

Studies have shown that women who have many sexual partners increase their risk of developing HPV and their risk of cervical cancer. 

"If you are sexually active, use a condom every time you have sex," Dewdney says. "Unprotected sex leaves you at risk for contracting sexually transmitted diseases that can increase your risk of getting HPV and greatly increase your chances of developing precancerous changes of the cervix."

While condoms help to lower the risk of developing HPV-related diseases, including cervical cancer, be aware that HPV can infect areas that are not covered by a condom, so condoms may not fully protect against HPV. That's why it's essential get the HPV vaccine in addition to using condoms.

Though studies have shown that using a condom properly and consistently—meaning every single time you have sex—can reduce HPV transmission, any area of the penis not covered by the condom can be infected by the virus.

"While the infection is most commonly passed by vaginal or anal sex, you can also transmit it during oral sex and skin-to-skin contact, and in those cases a condom isn't going to protect you at all," Lui says. "That's where the vaccine can help safeguard you."

Protect your children 'for the rest of their lives'

Due to controversy about vaccinating young people against a sexually transmitted infection and parental concerns about possible long-term effects of these relatively new vaccines, many children, teens and young adults aren't getting vaccinated, leaving them vulnerable to future HPV infection.

Lui encourages kids and parents to have an ongoing, open conversation about their wishes when it comes to being vaccinated.

"It's hard for some kids to admit to their parents that they're sexually active or are considering it," says Lui. "But it's important to be honest with your parents and tell them that you want to protect yourself."

Also, research has shown that getting the HPV vaccine does not encourage kids to become sexually active or start having sex at a younger age—a common concern cited by parents.

"Parents need to understand that just because their kids want the HPV vaccine, it doesn't mean they're promiscuous, or even that they plan to start having sex right away," Liu says. "They're talking about doing something now that can help keep them safe for the rest of their lives—and as parents, that's all we really want for our children."

Early Colorectal Cancer: Missing the Clues? Third Annual Early Age Onset – Colorectal Cancer Symposium; March 12, 2017

“Colorectal problems can occur at any age. Here’s an article that will tell you more.”

— Dr. Dale

From Early Colorectal Cancer: Missing the Clues? Third Annual Early Age Onset – Colorectal Cancer Symposium; March 12, 2017 

In 2012, teacher Kristen McRedmond was the picture of health; by February 2017 she was deceased. Given that snippet of information alone, the story does not seem all that uncommon, but Kristen was only 38 years old when she died, and the cause of death was colorectal cancer (CRC).[1]

Josh Lambeth returned to his family doctor many times over the course of 3 years with the same rectal bleeding symptoms. The doctor told him he was healthy, chalked it up to hemorrhoids, and said that at age 30 he was too young for it to be anything serious. Even the gastroenterologist thought it would be nothing more than irritable bowel syndrome or ulcerative colitis. But the results of his colonoscopy proved far more devastating—stage II rectal cancer. And Josh was only 31 years old.[2]

Of course, virtually any disease can present outside the usual patient cohort, but CRC in younger adults is no longer unusual and has, in fact, become common enough to have earned its own name. In fact while CRC overall has been on the decline in the United States for decades, its incidence has increased dramatically in those under 50.

"[F]oremost for all of the attendees was the absolute necessity of early detection."

The Third Annual Early Age Onset-Colorectal Cancer (EAO-CRC) Symposium, which was held at New York's NYU Langone Medical Center on March 12, provided an opportunity for patients, clinicians, researchers, and caregivers to discuss and brainstorm a number of issues related to care and treatment. But foremost for all of the attendees was the absolute necessity of early detection.

A February 2017 article in the Journal of the National Cancer Institute (JNCI) [3]provides some sobering figures:

"...colon cancer incidence rates increased by 1.0% to 2.4% annually since the mid-1980s in adults age 20 to 39 years and by 0.5% to 1.3% since the mid-1990s in adults age 40 to 54 years; rectal cancer incidence rates have been increasing longer and faster (e.g., 3.2% annually from 1974–2013 in adults age 20–29 years)."

Since 1974, the incidence of rectal cancer in adults 55 years of age or older has declined. Since the mid-1980s, the same is true of colon cancer. But between 1989-1990 and 2012-2013, incidence rates of rectal cancer in adults 50-54 years old increased from half that of the 55-59 rate, to the equivalent (24.7 vs 24.5 per 100,000 persons: incidence rate ratio (IRR), 1.01; 95% confidence interval [CI], 0.92-1.10). At the same time, the number of rectal cancer diagnoses in those younger than 55 doubled, from 14.6% (95% CI, 14.0%-15.2%) to 29.2% (95% CI, 28.5%-29.9%).[3]

"CRC is up significantly in those under age 50."

As a result, people born after 1990 have about double the risk of getting colon cancer at a younger age than those born in 1950 (IRR, 2.40; 95% CI, 1.11-5.19) and quadruple the risk of early rectal cancer (IRR, 4.32; 95% CI, 2.19-8.51).[3]

The conclusions? Although the cause or causes of the increase are unknown, CRC is up significantly in those under age 50, and the increase of CRC in young adults in their 20s and 30s is alarming.

The Primary Care Connection

Early detection is where the primary care doctor plays a critical role.

For primary care doctors, the increase in the number of CRC diagnoses raises many questions and concerns: when to screen, how to increase awareness of symptoms, the need for better and more detailed family medical histories, and the recognition that a referral to a gastroenterologist for a colonoscopy should not be ruled out even when the patient is young.

The symposium's takeaway was this: When CRC-like symptoms are present, regardless of a patient's age, it is important not to dismiss them or chalk them up to more benign causes simply because the patient is under 50, 30, or, sadly, even under 20.

Dr Joshua Raff, director of the Digestive Cancer Program at White Plains Hospital in New York, who attended the symposium, told Medscape that "attitudes toward symptomatic young patients—for example, those with gastrointestinal bleeding or change in bowel habits—are important. This requires more attention on the part of primary care doctors, to allow them to consider a GI referral more readily." In addition, said Raff, "gastroenterologists need to be more considerate of the possibility of a GI malignancy in younger patients once referred." Family history must be taken more thoroughly too and updated on a regular basis, perhaps annually. But a negative family history does not obviate the need to proceed with a workup for concerning symptoms.

Making Connections for Early Detection

Lynch syndrome. In the case of CRC, family history is vital.

While "most colorectal cancer is sporadic," some "3% to 5% of all cases of colorectal cancer are thought to be due to Lynch syndrome," according to Cancer.Net.[4]