Crohn’s disease and colitis: Advocates strive to raise awareness, break stigma for ‘invisible’ illnesses

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Lauren J. Mapp | The San Diego Union-Tribune

When Vista resident Michelle Harvey packed an overnight bag so her son could undergo testing at Rady Children’s Hospital in June 2020, she expected to return home the following day. Instead, Mason Harvey was hospitalized for two months as he was diagnosed and subsequently treated for Crohn’s disease, an inflammatory bowel disease marked by chronic inflammation in the digestive system.

Prior to his hospital stay, a blood test showed that Mason had low levels of hemoglobin — the protein found in red blood cells that carries oxygen throughout the body. He weighed about 45 pounds, much lower than the 60 to 120 pounds that is typical for an 11-year-old boy.

Mason was diagnosed nine days into his hospital stay, but before he could be sent home, doctors wanted to ensure he was in stable condition. For four weeks of his stay, he was on “gut rest,” meaning he was unable to eat solid foods.

“It was pretty hard because I like snacks and stuff, especially when going through hard times,” said Mason, who is now 14. “I was getting shots and things, but I couldn’t eat anything; I couldn’t even drink water.”

Crohn’s disease is an inflammatory bowel disease that the National Institutes of Health estimates impacts half a million people throughout the United States. The Centers for Disease Control and Prevention reports that 1.3 percent of American adults — about 3 million people — are diagnosed with inflammatory bowel disease, meaning they have either a form of Crohn’s disease or ulcerative colitis.

Living with an inflammatory bowel disease can make many people feel alone, because they are reluctant to share their experience, said Iris Magid, executive director for the Greater San Diego & Desert Area Chapter of the Crohn’s and Colitis Foundation.

“It’s really an isolating disease, and it’s a silent disease because you can’t tell if someone has Crohn’s or colitis just by looking at them,” she said.

While both conditions are chronic, Crohn’s disease most commonly affects the small intestine and the beginning of the colon, according to the Crohn’s and Colitis Foundation. Ulcerative colitis, however, only affects the rectum and the innermost lining of the colon, also known as the large intestine.

Because there isn’t a single diagnostic test for inflammatory bowel disease, many patients spend years either undiagnosed, misdiagnosed or untreated. A 2014 study published in the United European Gastroenterology journal found that about 10 percent of inflammatory bowel disease patients are misdiagnosed with irritable bowel syndrome, and about 3 percent spend at least five or more years before receiving the correct diagnosis.

There are several forms of inflammatory bowel diseases that can impact different parts of the digestive system in various ways, but some common symptoms include diarrhea, nausea, rectal bleeding, weight loss and mild to intense abdominal pain or cramps after eating.

Although inflammatory bowel diseases share some symptoms with irritable bowel syndrome, such as abdominal pain and nausea, there are some major differences. Unlike colitis or Crohn’s disease, IBS doesn’t cause inflammation, rarely causes hospitalization or surgery, and it does not increase the risk for colon cancer.

Inflammatory bowel diseases can cause someone to drastically alter their lifestyle, especially when they’re experiencing a flare-up of symptoms.

“Many patients know where every bathroom is anywhere they travel, any route they go on, because of that urgency,” said Cindie Barbera, the chapter’s deputy executive director.

Treating inflammatory bowel disease

Although there is not yet a cure for inflammatory bowel disease, it is possible to be in a state of remission by adhering to a treatment plan to reduce inflammation. That plan can involve various medications, avoiding trigger foods, eating foods that contain healthy fats and insoluble fiber.

In some cases, treatment for inflammatory bowel disease can require surgery, as was the case for former San Diego Chargers kicker Rolf Benirschke.

In 1979, as a 23-year-old during his second season playing professional football, Benirschke thought he had caught the flu from some of his teammates when his first symptoms of Crohn’s disease started. But when his symptoms persisted long after his teammates got better, his father — who was a physician — connected him with a gastroenterology specialist at UC San Diego.

When he was diagnosed with Crohn’s disease, Benirschke said he “continued to play and manage my illness as best I could, but there were not a lot of medical options” at the time.

Although he was taking two medications to stave off symptoms, he started to lose weight — about 20 pounds — and experienced a bad stomachache with bloody diarrhea throughout the season. After playing games on Sunday, he would be brought to the hospital to be fed intravenously throughout most of the week, then released on Saturdays to play with the team.

“If you look statistically at the 10 years that I played, it was really one of the better seasons of my career, but there could have been a footnote that said, ‘Young kicker is dying,’ ” Benirschke said.

During the off-season, he changed his diet and tried every possible treatment, including acupuncture and biofeedback, an alternative medicine approach that aims to teach people to have a greater awareness and control of their bodily functions.

But while flying home from New England a few games into his third season, Benirschke fainted on the plane. After landing, he was taken to the hospital, where he experienced a series of surgeries to remove his large intestine and install two ostomy bags.

Benirschke thought his career was over, but one of the Chargers coaches trained him during his recuperation. He rejoined the Chargers the following year, won the NFL Man of the Year award in 1983 and played until retiring from the league in 1987.

VISTA, CA – SEPTEMBER 26, 2023: Pages of a book about living with Crohn’s disease by Mason Harvey, 14, who has Crohn’s disease, and his mother, Michelle Harvey on Tuesday, September 26, 2023. (Hayne Palmour IV / For The San Diego Union-Tribune)

Although living with the disease has impacted him in many ways, Benirschke said it has also given his life meaning. For decades, he has been an advocate for bringing greater awareness of inflammatory bowel diseases, and has given other patients guidance, including Mason.

“I get the perspective now, looking back, and that illness changed my life,” he said. “Everything about me changed — who I am, what was important to me — it gave me a purpose, and ultimately, God turned it into just the richest life I could possibly have imagined.”

How caregivers can support loved ones with IBD

Caregiving for a loved one with colitis or Crohn’s disease demands not just patience and understanding, but also a deep well of empathy and knowledge to navigate the challenges of the care recipient’s complex condition.

The Crohn’s and Colitis Foundation offers support to patients and caregivers by providing educational resources, hosting support group meetings and raising funds for research into treatment options. The organization also offers Camp Oasis, a weeklong summer camp for children with medically stable Crohn’s disease or ulcerative colitis.

Michelle and Jason Harvey said connecting with the organization was vital to understanding the disease when their son was first diagnosed.

“In the very beginning it was tough, but I think reaching out and looking for support and talking about it helped,” Michelle said.

Some patient and caregiver teams — like Mason and his parents — find it helpful to keep a meal journal to track whether any foods trigger a flare-up of symptoms.

Today, Mason’s parents check his weight daily so they can be aware of any sudden drops. To ensure he is getting enough vitamins and nutrients, they make him a supplemental drink three times daily by mixing lactose-free milk with Carnation Instant Breakfast. Twice a month he receives biologics, medicines that help the immune system target inflammation-causing proteins.

Throughout Mason’s two-month hospitalization, Michelle and Jason rotated between staying in his room and sleeping in their car in the parking lot because pandemic protocols meant only one parent could be there at a time. Because he was unable to eat for a full month during that time, Mason starting drawing all the foods he looked forward to snacking on.

Those drawings eventually became the inspiration for “Not Your Average Slice of Pizza,” a children’s book that Mason and Michelle co-wrote about Crohn’s disease that they hope will help other children.

“You’re not alone with this disease, there’s a lot of other people out there and it’s different for everyone,” Mason said. “Someday you’re going to get into remission and everything’s gonna be fine.”

For more information about the nonprofit, call (619) 497-1300, email sandiego@crohnscolitisfoundation.org or visit crohnscolitisfoundation.org/chapters/sandiego.

‘Bosch: Legacy’ Season 2 review: Half the show works like gangbusters. The other half is just a bust

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Nina Metz | Chicago Tribune (TNS)

Titus Welliver has played Harry Bosch on television for nearly a decade, starting with the seven-season Amazon crime series “Bosch.” Once a grizzled cop who would squint into the harsh Los Angeles sun and uncover ugly truths hiding in dark crevices, he has since retired from the police force. “Bosch: Legacy,” now in its second season on Freevee, is proof that Harry’s story is more interesting — and closer to the noir sensibility hinted in the original — as a private investigator teaming up with the wily and poised defense attorney Honey Chandler, played by Mimi Rogers.

At first glance, they’re opposites. He’s gruff and hardened by life, happy to do his job in jeans and a T-shirt. She’s methodical and strategic and impeccably turned out. They share a world-weary cynicism that has not yet diminished their shared interest in righting a few wrongs. And their mutual respect remains unmuddied by sexual tension. Together, they are a formidable brain trust, thinking through all the angles. If the show were only about them I would give it four stars, no hesitation. Welliver and Rogers have such an easy chemistry playing this pair of professional puzzle-solvers.

But their efforts are only half the narrative.

The other half focuses on Harry’s daughter Maddie. A young cop, she’s eager and earnest and, as played by Madison Lintz, never once believable. Shoehorned into a role she doesn’t have the skill set to play — it’s a performance that amounts to staring and then staring harder — neither the writing nor the ensemble she’s surrounded with can inch things closer to the subtleties achieved in the Harry and Honey portions. Toggling back and forth, the show only invites this comparison, and not to its benefit.

Despite their dual need to project a tough exterior, Harry and Maddie have enough trauma between them to keep a team of psychiatrists in business. They pretend otherwise (get therapy? As if!) and that makes sense for the characters. But the show often falls into this trap as well. “Worrying about you has become a full-time distraction,” she tells her father. “OK, OK,” he replies annoyed, “so don’t worry about me.” It might be the most dysfunctional relationship on television, if only anyone took the time to seriously zing Maddie’s career arc (you’ll never get your father’s approval!) or didn’t just sigh and shake their heads exasperatingly at Harry’s reckless savior complex-slash-death wish.

The first two episodes of the season center on a grisly abduction, with Harry in rescue mode. I prefer him as the gruff, thinking man’s hero, and he reverts to form for the remaining episodes, which pick up four months later, when Honey hires him to work on another case. A woman’s been murdered. Honey believes her client didn’t do it. So she and Harry try to piece together what really happened, often skating around the law — greasing palms, mainly — with Honey gritting her teeth the entire time. They soon realize a pair of corrupt and wildly dangerous vice cops are somehow in the mix.

The FBI is also looking into one of Honey’s older cases involving a pipeline explosion, some murders and the Russians. The feds think she and Harry were involved, or at least connected. “The FBI is here asking for you,” says one of her colleagues. “Me?” Her shrug is so perfect. “Send them in.” This eventually ensnares Harry’s hacker-for-hire, played by Stephen A. Chang, whose overconfidence and desire to impress a pretty face might land him in hot water. Or not. Consequences are rarely long-lasting in this franchise.

That’s actually preferable when it comes to Honey. Steely but with a light touch, she’s thinking five steps ahead. The picture of class, she doesn’t raise her voice or lose her cool. She’s too seasoned, too organized for that. It’s a great late-career role for Rogers and one that has been overlooked by Emmy voters. With the number of TV series competing for attention right now, it’s harder for first-rate but nonshowy performances to stand out. Even so, the character’s shrewd competence is riveting in the hands of a veteran like Rogers.

The finale sets up a storyline that might put Honey and Harry on opposite sides going forward. If so, that will be a shame. Their partnership is the show’s primary draw.

The other draw, as always, is Harry’s house, with its floor-to-ceiling windows cantilevered over the Hollywood Hills. At night, the city glitters in the distance. The Bosch stories have never been interested in Hollywood, despite the L.A. of it all. Harry’s house is the show’s one nod to the glamour of its setting.

———

‘BOSCH: LEGACY’

2.5 stars (out of 4)

Rating: TV-MA

How to watch: Freevee

———

©2023 Chicago Tribune. Visit chicagotribune.com. Distributed by Tribune Content Agency, LLC.

High school football: St. Thomas Academy, Mahtomedi, Hill-Murray, St. Agnes grab sectional No. 1 seeds, while Two Rivers is seeded … fourth?

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The Two Rivers football team finished with a 7-1 regular-season record and the top spot among teams in Class 5A Section 3 — and fifth overall — in the Class 5A Quality Ratings Formula put together by Minnesota Scores.

Yet the Warriors were assigned the No. 4 seed when the section bracket was revealed Thursday.

The top spot went to St. Thomas Academy (6-2), which finished the regular season one spot behind Two Rivers in the QRF. Bloomington Jefferson (7-1) received the No. 2 seed. The top two spots come with first-round byes.

Most surprising was that Two Rivers, a section finalist last season, was seeded behind three-win Apple Valley.

The Warriors will now play Tuesday in the section quarterfinals, where they will host fifth-seeded Hastings (2-6). Hastings handed Two Rivers its lone loss way back in Week 2, edging the Warriors 9-7. That lone data point was likely heavily relied upon during the seeding process.

The winner of that game will meet St. Thomas Academy in the section semifinals.

In Class 5A, Section 4, Mahtomedi (4-4) did indeed earn the top seed by virtue of its dominant Week 2 victory over Central (6-2). Central, the No. 2 seed, had the better QRF number, but the head-to-head result carried the day.

So Mahtomedi gets the section’s lone bye, while Central will meet Academy Force (1-7) in the quarterfinals.

Third-seeded Certin-Derham Hall will host Harding/Humboldt, while Highland Park, the No. 4 seed, will host fifth-seeded Tartan. Highland Park edged Tartan 6-0 earlier this fall.

CLASS 4A

Hill-Murray (6-2) earned the top seed and Section 3’s lone bye. Despite sporting a lower QRF, Chisago Lakes (6-2) received the No. 2 seed over defending state champion Simley (5-3). That really only affects the site of the potential second-round matchup between the two teams.

Simley will host sixth-seeded South St. Paul (3-5) in Tuesday’s quarterfinals. The Spartans beat the Packers 35-12 in late September.

Johnson (5-3) will host Como Park (4-4) on Tuesday in the No. 4-5 matchup.

CLASS 2A

St. Agnes (8-0) is the top seed in Section 4, and will meet the winner of Randolph and Rush City in the section semifinals.

More importantly for the Aggies, they’re on the opposite side of the bracket from Norwood Young America (8-0) and Cannon Falls (6-2), two state-quality teams in their own right.

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Opinion | Jim Jordan’s Bid for Speaker Is Collapsing. The GOP Is Lucky.

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Jim Jordan’s improbable rise to the cusp of Capitol Hill’s top job has delighted many conservatives, who see an accomplished infighter bent on impeaching President Joe Biden.

He’s a model presence on Fox News during an era in which success for many Republicans is measured in cable news hits, instead of old-fashioned legislating. His installation as speaker would mark the first time the GOP’s top lawmaker hailed from the party’s growing hard-right contingent. He’s in good standing when it comes to one of the GOP’s most important yardsticks — his relationship with former President Donald Trump.

Yet for all those reasons and quite a few others, he would be badly miscast as speaker of the House, and Republicans should be relieved he has, for now, fallen short of the votes. Jordan on Thursday abandoned a third speaker’s ballot for the moment, instead endorsing a measure to let acting Speaker Patrick McHenry (R-N.C.) run the House temporarily.

Set aside the fact that Jordan has virtually no legislation to his credit despite 17 years in Congress. The speaker’s job requires a very particular set of skills — an ability to build bipartisan coalitions, to work with one’s adversaries, and to learn to accept half-victories. That makes it a particularly crummy job for Jordan because the very essence of the position requires compromises that are anathema to the right wing and to the conservative media ecosystem that powered his ascent.

In this moment, there are violent thunderstorms on the horizon — the job comes with a daunting roster of unfinished must-do business, including keeping the government open and providing tens of billions of dollars in aid to Israel and Ukraine. Passage of a bipartisan stopgap funding law last month cost then-Speaker Kevin McCarthy his job; Jordan opposed it.

Jordan’s critics worry that he would allow Trump to meddle in House business, an especially worrisome prospect since Trump, as president, drove the government into a lengthy shutdown in 2018-19 only to emerge empty-handed.

Then there’s the question of which Jordan would Washington get? There’s the prototype who, in a prior time, helped orchestrate government shutdowns and was once described by former Speaker John Boehner, a fellow Ohioan, as “a legislative terrorist” and an “asshole.”

Then there’s the pragmatic insider version who embarked on a leadership track a few years back, forging a close relationship with McCarthy. He sided with McCarthy earlier this year by voting for a debt limit deal that the California Republican made with Biden. He’s managed to win support from GOP pragmatists like Rep. Mike Rogers (R-Ala.) after promising that he would shepherd passage of must-do legislation including defense policy, agency budgets, and next year’s reauthorization of food programs and farm subsidies.

Previous GOP Speakers like Boehner and Paul Ryan (R-Wis.) came from the party’s governing wing. Boehner worked with Sen. Ted Kennedy (D-Mass.) to pass the No Child Left Behind education law in 2002; Ryan negotiated a 2013 budget accord with veteran Sen. Patty Murray (D-Wash.) and went on to chair the tax-writing Ways and Means Committee.

Jordan has nothing remotely similar on his résumé. Now he’s hoping to get thrown in the deep end, taking on a Democratic president and a twin Senate threat of top Democrat Chuck Schumer and Minority Leader Mitch McConnell (R-Ky.), who are allied against Jordan on aid to Ukraine and government spending levels. Jordan has vilified Schumer in the past and has virtually no history with McConnell.

Conflict in the Middle East has further upended the equation. Biden is sending Congress a huge aid package request for both Israel and Ukraine; Jordan is a skeptic of Ukraine aid and his party is badly split on the question.

A pessimistic take on Jordan is that he’d simply be unwilling to cut compromises with the Senate and the Biden White House, especially as the House slides toward a possible Biden impeachment. A partial government shutdown is in the offing if gridlock hits.

For those seeking it, there’s ample evidence in Jordan’s past battles with leadership figures such as Boehner to suggest he won’t play well with others now. Jordan helped drive Boehner from the speaker’s chair in 2015. He and other Freedom Caucus figures gave Ryan fits during the first two years of the Trump administration, including a drawn-out battle over repealing Obamacare that almost led Ryan and Trump to abandon the idea. Instead, the repeal died in the Senate.

When Boehner quit the speaker’s chair he left himself time to “clean out the barn” — passing politically difficult bills like a debt limit increase before handing the gavel to Ryan.

Now, the barn is a mess. Jordan wouldn’t get the grace period afforded Ryan. Critical deadlines loom. Hard feelings permeate the competing leadership camps of Jordan and Majority Leader Steve Scalise. (Scalise bowed out of the speaker’s race despite besting Jordan in a nominating ballot, complaining about bad faith from Jordan partisans.

More than 20 Republicans, however, including several from the compromise-seeking Appropriations Committee, have united to block Jordan’s path in two separate votes this week.

Some of the pressure tactics employed by Jordan supporters irritated holdouts such as Appropriations Chair Kay Granger (R-Texas), a leadership loyalist whose opposition raised eyebrows. “This was a vote of conscience and I stayed true to my principles,” Granger wrote on X, the platform formerly known as Twitter. “Intimidation and threats will not change my position.”

McHenry may now end up cleaning out the barn, but it’s clear Republicans would still be mistaken if they handed power to Jordan afterward.