Close to 700,000 Americans live with a disease for which they may never see a cure.
It’s known as Crohn’s disease.
Like ulcerative colitis, another type of inflammatory bowel disease (IBD), Crohn’s disease continues to receive attention in the medical field as an increasing number of cases surface and a cure is sought.
Though the cause of Crohn’s disease is undetermined, research suggests it is the result of an altered immune system that attacks common bacteria in the gastrointestinal tract, thereby causing bleeding and inflammation. This often causes swelling of the intestinal walls and causes blockage, making digestion difficult if not impossible.
Medication and surgery are options, but not cures. Crohn’s can reappear at any time and at any point in the gastrointestinal tract.
While victims may take solace in knowing that others have the same diagnosis, the disease often affects each carrier in a completely unique manner.
Some may experience minimal symptoms, while others desperately need surgery. Some will have a strict diet regimen, some are relatively unaffected by food intake. Some have lived with it for a week, some their entire lives.
Each case is different.
These are three of those stories.
Marana resident – Pharmacist –
35 years old
“How do I cope with it? I don’t like to cope with it. When I’m really bad, I’ve thought ‘Why am I here?’”
For 16 years, Caryn Fisher has dealt with the unbearable pain often associated with Crohn’s disease – a pain she says she wouldn’t wish on her worst enemy.
“A twisting, cramping, stabbing… just awful,” Fisher describes.
Diagnosed at 19 years old, Fisher vividly recalls her initial diagnosis and correlating symptoms.
“I would be sitting in class at U of A, and there was this pain in my stomach,” she said. “It would come and go. Then I’d eat, and sometimes I’d have a lot of diarrhea. There was always a lot of pain.”
While dealing with the cramping, bloating, and bleeding that comes with Crohn’s, Fisher was also having difficulty finding a common diagnosis, going through five doctors before her diagnosis was finalized as Crohn’s disease.
Fisher was prescribed medication for her symptoms, but as the years passed, she would find herself in and out of remission. Her symptoms grew far more consistent over the past seven years, and spiked in the last two years.
She called out of work more frequently. Caring for her young daughter was a challenge and sometimes impossible. Her husband, Jamison, often had to call out of work to look after both of them.
It was a depressing, angering time, and Fisher admits that often those emotions were unintentionally directed toward Jamison.
“That’s been tough to deal with to be honest, but you try to justify that it’s coming from a dark place,” said Jamison. “The niceties of life go out the window when you’re focusing on that is what I can imagine, but again I don’t know what it’s like to feel it. Sometimes I wish I knew what it was like.”
Last December, Fisher had one of her worst episodes to date as she and her husband were traveling to see family on Christmas Day. They were forced to cancel plans in lieu of the emergency room.
The pain eventually became so debilitating that Fisher pushed for surgery. Her intestines had become so narrowed that doctors agreed it was the best option.
In June, Fisher had a foot of her ileum (small intestine) removed.
There was recovery time involved, but Fisher was more than okay with that given the end result.
Since surgery, she has been able to expand her diet, and more importantly, the pain has ceased.
Asked what life is like since surgery, Fisher smiled.
“Awesome,” she said. “Let’s hope it lasts.”
Fisher continues to work two days a week as a pharmacist.
Tucson resident – Stay-at-home mom – 31 years old
Diagnosed nine years ago, Donna Saavedra has faced every would-be mother’s worst nightmare – she has had three miscarriages during her battle with Crohn’s disease.
Like most diagnosed with Crohn’s, the disease was more than physical symptoms and correlating limitations. It was enough to change her attitude on life, particularly when she had her miscarriages.
“I was very down and angry,” Saavedra recalls.
After her diagnosis, Saavedra was placed on non-steroidal anti-inflammatory medications. Despite the fact her doctors told her the medication would not affect pregnancy, Saavedra suffered two miscarriages while on medication and a third while detoxing and ill from the disease.
Her fourth attempt, which took place while she was off medication, was a success, though it also came with nine months of worry.
“I was in flare when I became pregnant with my oldest,” said Saavedra. “I cramped and bled and worried constantly, thinking I was losing my fourth baby.”
But the baby was healthy, and for the next two years following the birth, Saavedra went into remission. After having her second child, however, Saavedra relapsed and has been trying to get the disease back under control ever since.
Despite her struggles, Saavedra encourages women with Crohn’s not to let it dictate their choices.
“I don’t want women to be afraid to have kids because of the disease,” said Saavedra. I have the disease, it doesn’t have me. Once I realized that I could be in control and not let it rule my life, I became optimistic and happy.”
Saavedra has not had to undergo any operations. While currently on a non-steroidal anti-inflammatory, Saavedra prefers natural remedies whenever possible.
Sometimes though, the pain is too unbearable not to medicate.
“It’s like a hurricane in your intestines,” said Saavedra. “When I’m at my worst, I am tired, very low energy, and I don’t want to be around people. All I want to do is sleep and stay in bed. At my worst, food is my worst enemy. At my worst I am plagued by intestinal bleeding and intense cramping, making being close to a restroom a necessity.”
That was the case years ago on her honeymoon when what was supposed to be a memorable seven-day cruise turned into a nightmare when each meal sent her into another painful episode in the bathroom.
The disease also sometimes affects Saavedra’s ability to enjoy playtime with her children, which, as a stay-at-home mother, can be frustrating.
“I try to hide it from them and spend as much time with them as possible,” said Saavedra. “My four-year-old will sometimes come up to me if I don’t want to play, and he’ll say, ‘Mom, is your stomach bad again?’ So, he knows mommy has issues.”
Saavedra takes things day-to-day, knowing Crohn’s will sometimes win the daily battle, but that she will win the war.
“I was diagnosed with an incurable disease. Scary, yes. But there are far worse diseases, illnesses, cancers that I could have been diagnosed with. This I could adjust to. This I could use to help others. There is always hope.”
Oro Valley resident – Retired
engineer – 83 years old
Despite having had Crohn’s disease for about 50 years, Larry Wolf considers himself a lucky victim because his symptoms have been minimal.
His earliest symptoms arrived in 1968, before the disease had even earned the “Crohn’s” name, instead referred to as regional enteritis or “The President’s Disease,” as both Dwight Eisenhower and Harry Truman suffered from it.
Then 38 years old, Wolf recalls eating breakfast one morning and going to work where he began to vomit. Each subsequent meal that day brought the same result.
After four days of the continuing pattern, Wolf was forced to put himself on a liquid diet.
Then, after four months of an attempted diagnosis by doctors, it was determined Wolf had a near-total intestinal blockage caused by Crohn’s disease.
Wolf’s case was extremely rare in that the blockage was in his duodenum (first section of small intestine), which only affects about two percent Crohn’s victims.
Wolf underwent surgery, in which doctors constructed a bypass around the blockage.
“After that I was in fine shape,” said Wolf. “I had no symptoms, no medications, and no problems with anything until 1980.”
That was when Wolf, who was living in Europe at the time, began to experience the same symptoms he had prior. He discovered the nausea was related to his favorite cereal – Grape Nuts.
“I eliminated that from my diet, and the problem went away,” said Wolf.
But upon his return to the United States in 1985, his symptoms also returned.
As the years passed, undergo endoscopies to resolve intestinal blockage, and by 2011, doctors convinced him surgery was the best option, as the disease had spread to the lower part of his small intestine down to his ileum.
Wolf had a section of his colon and about six inches of his small intestine removed.
Unlike Fisher, but similar to Saavedra, Wolf says his family has strong genetic ties to intestinal problems.
Research supports the fact that those with genetic ties are at least five percent more likely to develop IBD.
Despite his longtime exposure to the disease, Wolf says pain has never been an issue, and his symptoms have been mild.
“It really doesn’t affect my lifestyle or relationship with my family at all,” he said. I so rarely have symptoms, and have no diet restrictions. It doesn’t curtail my outdoor activities or my stamina – any of that. I’ve been very fortunate to live with it the way I have.”