ReportWire

Tag: Crohn’s disease

  • IBD and Cannabis  | NutritionFacts.org

    [ad_1]

    Smoking cannabis may help with symptoms of inflammatory bowel disease (IBD) in the short term, but it may make the long-term prognosis worse.

    As this study asks, “Medical Marijuana: A Panacea or Scourge?” For 5,000 years, cannabis “has been used throughout the world medically, recreationally, and spiritually.” It was even prescribed by American physicians “for a plethora of indications” from the mid-19th century to the 1930s, a fact that’s often used by medical marijuana proponents as evidence justifying the modern medical applications.” But the field of old-timey medicine is “fraught with potions and herbal remedies,” not to mention bloodletting and other questionable and harmful remedies.

    Skeptics criticize the medical marijuana movement as the “‘medical excuse marijuana’ movement,” insinuating that children with epilepsy and the terminally ill are being “used as a ‘Trojan horse’ for the legalization of recreational cannabis use” or to peddle “outlandish claims” about “miracle cancer cures,” frustrating researchers in the field who just want to get at the science.

    For example, what about the therapeutic use of cannabis for inflammatory bowel diseases like Crohn’s disease and ulcerative colitis? Conventional therapies work mainly by suppressing the immune system to try to tamp down inflammation. “Given the limited therapy options and known adverse side effects with chronic use” from these drugs, people suffering from these diseases often need to have inflamed sections of their bowels removed surgically, so it’s clear why there’s so much interest in alternative approaches.

    About one in six IBD patients who use marijuana say it helps with their symptoms, so researchers decided to put it to the test. Thirteen patients with IBD were given a third of a pound of marijuana to smoke at their leisure over a period of three months, and they reported feeling significantly better with “reported improvement in general health perception, social functioning, ability to work, physical pain, and depression.” There wasn’t a control group, so it’s unknown if they would have improved anyway or what role the placebo effect may have played. It’s like some of the studies of cannabis used for pediatric epilepsy that had response rates exceeding 30 percent and a frequency cut in half in a third of the kids. Amazing results until you realize you can sometimes get similarly amazing responses from giving kids nothing but a sugar pill placebo, as seen below and at 2:21 in my video Friday Favorites: Cannabis for Inflammatory Bowel Disease (IBD). That’s why it’s critical to do randomized, double-blind, placebo-controlled trials, but there weren’t any on cannabis and IBD until 2013. 

    For 21 patients with Crohn’s disease, nothing seemed to help. So researchers randomized them to either smoke two joints a day of marijuana or a look-alike placebo. The results? Ninety percent of those in the cannabis group got better, compared to only 40 percent in the placebo group. Shown below and at 3:11 in my video is a graph of their symptom scores. As you can see, there was no big change in the placebo group over the two-month study, but the cannabis group cut their symptoms by about half. 

    The researchers acknowledge that long-term cannabis use is not without risks, but it may be a cakewalk compared to the potential adverse—and even life-threatening—side effects of some of the more powerful conventional therapies, so the study was heralded in a paper entitled “High Hope for Medical Marijuana in Digestive Disorders.”

    The study was funded by a medical marijuana advocacy organization, the main supplier in the country, in fact. So, expectations may have been placed on the participants about how much better they would feel—in other words, they may have been primed for the placebo effect. But the researchers controlled for that, right? Those getting the real cannabis did significantly better than those randomized to get the placebo. But the point of a placebo is that it is indistinguishable from the real thing, so the participants don’t know which group they’re in—the control group or the treatment group. How can that be accomplished with a psychoactive drug? It can’t, which is the problem. The researchers tried to hide which group participants were in by only recruiting patients who had never tried cannabis before in the hopes that they wouldn’t notice placebo pot, but, unsurprisingly, most of them did. So, we’re basically left with another unblinded study. The researchers asked a bunch of subjective questions, like “How are you feeling?” and those who pretty much knew they were taking the drug said they were feeling better.

    There were no significant changes in objective lab values, like CRP, a sign of inflammation, so perhaps the “cannabis may simply be masking symptoms without affecting intestinal inflammation.” Another indicator that it may not be affecting the course of the disease itself is how quickly the symptoms rebound. Two weeks after the study ended, those in the cannabis group were right back to where they started, as shown here (see week 10) and at 5:05 in my video. 

    So, “there was no difference in objective inflammatory markers to indicate disease modification. Given the rapid rebound…to pretreatment levels after the 2-week washout period, it seems more plausible that cannabis ameliorated the symptoms of Crohn’s disease, rather than actually modulating the disease.” That may be, but the symptoms are terrible. A reduction in pain is a reduction in pain. Indeed, “from the point of view of the patients, a marked symptomatic improvement and ability to resume normal life is not trivial, even if inflammation persists.” Of course, what if cannabis somehow makes the disease worse in the long run?

    A survey study published the following year found that cannabis provided the same immediate symptomatic relief but was associated with a worse disease prognosis over time. Patients with IBD reported that cannabis improved their pain, cramping, and diarrhea, but use for more than six months by Crohn’s patients appeared to be a strong predictor of them ending up in surgery; they had five times the odds of going under the knife. There are two possible explanations for this: It’s quite possible that the increased disease severity led to the cannabis use and not the other way around. The alternative explanation: “Cannabis use may worsen the prognosis of IBD, leading to greater surgeries and hospitalizations.”

    This is why we need prospective clinical trials where people are followed over time to see which came first. Until then, perhaps we should consider cannabis use for IBD as “potentially harmful.” Not just to err on the side of caution, but because there was a study on hepatitis C patients that found that daily cannabis use was associated with nearly seven times the odds of worse liver fibrosis, which is like scar tissue. If cannabis really does make fibrosis worse, that may explain why cannabis users with IBD may be more likely to require surgery. 

    [ad_2]

    Michael Greger M.D. FACLM

    Source link

  • Eating to Treat Crohn’s Disease  | NutritionFacts.org

    [ad_1]

    Switching to a plant-based diet has been shown to achieve far better outcomes than those reported on conventional treatments for both active and quiescent stages of Crohn’s disease (CD) and ulcerative colitis.

    Important to our understanding and the prevention of the global increase of inflammatory bowel disease (IBD), we know that “dietary fiber reduces risk, whereas dietary fat, animal protein, and sugar increase it.” “Despite the recognition of westernization of lifestyle as a major driver of the growing incidence of IBD, no countermeasures against such lifestyle changes have been recommended, except that patients with Crohn’s disease should not smoke.”

    We know that “consuming whole, plant-based foods is synonymous with an anti-inflammatory diet.” Lists of foods with inflammatory effects and anti-inflammatory effects are shown here and at 0:50 in my video, The Best Diet for Crohn’s Disease.

    How about putting a plant-based diet to the test?

    Cutting down on red and processed meats didn’t work, but what about cutting down on all meat? A 25-year-old man “with newly diagnosed CD…failed to enter clinical remission despite standard medical therapy. After switching to a diet based exclusively on grains, legumes [beans, split peas, chickpeas, and lentils], vegetables, and fruits, he entered clinical remission without need for medication and showed no signs of CD on follow-up colonoscopy.”

    It’s worth delving into some of the details. The conventional treatment he was started on is infliximab, sold as REMICADE®, which can cause a stroke and may increase our chances of getting lymphoma or other cancers. (It also costs $35,000 a year.) It may not even work in 35 to 40 percent of patients, and that seemed to be the case with the 25-year-old man. So, his dose was increased after 37 weeks, but he was still suffering after two years on the drug. Then he completely eliminated animal products and processed foods from his diet and finally experienced a complete resolution of his symptoms.

    “Prior to this, his diet had been the typical American diet, consisting of meat, dairy products, refined grains, processed foods, and modest amounts of vegetables and fruits. Having experienced complete clinical remission for the first time since his Crohn’s disease diagnosis, the patient decided to switch to a whole food, plant-based diet permanently, severely reducing his intake of processed foods and limiting animal products to one serving, or less, per week.” Whenever his diet slipped, his symptoms started coming back, but he could always eliminate them by eating healthier again. After six months adhering to these diet and lifestyle changes, including stress relief and exercise, a follow-up “demonstrated complete mucosal healing [of the gut lining] with no visible evidence of Crohn’s disease.”

    We know that “a diet consisting of whole grains, legumes, fruits, and vegetables has been shown to be helpful in the prevention and treatment of heart disease, obesity, diabetes, hypertension, gallbladder disease, rheumatoid arthritis, and many cancers. Although further research is required, this case report suggests that Crohn’s disease might be added to this list of conditions.” That further research has already been done! About 20 patients with Crohn’s disease were placed on a semi-vegetarian diet—no more than half a serving of fish once a week and half a serving of meat once every two weeks—and they achieved a 100 percent remission rate at one year and 90 percent at two years.

    Some strayed from the diet, though. What happened to them? As you can see below and at 3:32 in my video, after one year, half had relapsed, and, at year two, only 20 percent had remained in remission. But those who stuck with the semi-veg diet had remarkable success. It was a small study with no formal control group, but it represents the best-reported result in Crohn’s relapse prevention published in the medical literature to date. 

    Nowadays, Crohn’s patients are often treated with so-called biologic drugs, expensive injected antibodies that suppress the immune system. They have effectively induced and maintained remission in Crohn’s disease, but not in everybody. The current remission rate in Crohn’s with early use of REMICADE® is 64 percent. So, 30 to 40 percent of patients “are likely to experience a disabling disease course even after their first treatment.” What about adding a plant-based diet? Remission rates jumped up to 100 percent for those who didn’t have to drop out due to drug side effects. Even after excluding milder cases, researchers found that 100 percent of those with serious, even “severe/fulminant disease, achieved remission.”

    If we look at gold standard systematic reviews, they conclude that the effects of dietary interventions on inflammatory bowel diseases—Crohn’s disease and ulcerative colitis—are uncertain. However, this is because only randomized controlled trials were considered. That’s totally understandable, as that is the most rigorous study design. “Nevertheless, people with IBD deserve advice based on the ‘best available evidence’ rather than no advice at all…” And switching to a plant-based diet has been shown to achieve “far better outcomes” than those reported on conventional treatments in both active and quiescent stages in Crohn’s disease and ulcerative colitis. For example, below and at 5:37 in my video, you can see one-year remission rates in Crohn’s disease (100 percent) compared to budesonide, an immunosuppressant corticosteroid drug (30 to 40 percent), a half elemental diet, such as at-home tube feedings (64 percent), the $35,000-a-year drug REMICADE® (46 percent), or the $75,000-a-year drug Humira (57 percent). 

    Safer, cheaper, and more effective. That’s why some researchers have made the “recommendation of plant-based diets for inflammatory bowel disease.”

    It would seem clear that treatment based on addressing the cause of the disease is optimal. Spreading the word about healthier diets could help halt the scourge of inflammatory bowel disease, but how will people hear about this amazing research without some kind of public education campaign? That’s what NutritionFacts.org is all about.

    Doctor’s Note:

    This is the third in a series on inflammatory bowel disease. If you missed the first two, see Preventing Inflammatory Bowel Disease with Diet and The Best Diet for Ulcerative Colitis Treatment.

    My previous Crohn’s videos include Preventing Crohn’s Disease with Diet and Does Nutritional Yeast Trigger Crohn’s Disease?. 

    [ad_2]

    Michael Greger M.D. FACLM

    Source link

  • Eating to Keep Ulcerative Colitis in Remission  | NutritionFacts.org

    [ad_1]

    Plant-based diets can be 98 percent effective in keeping ulcerative colitis patients in remission, far exceeding the efficacy of other treatments.

    “One of the most common questions physicians treating patients with IBD [inflammatory bowel disease] are asked is whether changing diet could positively affect the course of their disease.” Traditionally, we had to respond that we didn’t know. That may now be changing, given the “evidence in the literature that hydrogen sulfide may play a role in UC,” ulcerative colitis. And, since the sulfur-containing amino acids concentrated in meat cause an increase in colonic levels of this rotten egg gas, perhaps we should “take off the meat.” Indeed, animal protein isn’t associated only with an increased risk of getting inflammatory bowel disease in the first place, but also IBD relapses once you have the disease.

    This is a recent development. “Because the concept of IBD as a lifestyle disease mediated mainly by a westernized diet is not widely appreciated, an analysis of diet in the follow-up period [after diagnosis] in relation to a relapse of IBD has been ignored”—but no longer. Ulcerative colitis patients in remission and their diets were followed for a year to see which foods were linked to the return of their bloody diarrhea. Researchers found that the “strongest relationship between a dietary factor and an increased risk of relapse observed in this study was for a high intake of meat,” as I discuss in my video The Best Diet for Ulcerative Colitis Treatment.

    What if people lower their intake of sulfur-containing amino acids by decreasing their consumption of animal products? Researchers tried this on four ulcerative colitis patients, and without any change in their medications, the patients experienced about a fourfold improvement in their loose stools. In fact, they felt so much better that the researchers didn’t think it was ethical to try switching the patients back to their typical diets. “Sulfur-containing amino acids are the primary source of dietary sulfur,” so a “low-sulfur” diet essentially means “a shift from a more traditional western diet (high in animal protein and fat, and low in fiber) to more of a plant-based diet (high in fiber, lower in animal protein and fat).” “Altogether, westernized diets are pro-inflammatory, and PBD [plant-based diets] are anti-inflammatory.”

    What can treatment with a plant-based diet do after the onset of ulcerative colitis during a low-carbohydrate weight-loss diet? A 36-year-old man lost 13 pounds on a low-carb diet, but he also lost his health; he was diagnosed with ulcerative colitis. When he was put on a diet centered around whole plant foods, his symptoms resolved without medication. He achieved remission. That was just one case, though. Case reports are akin to glorified anecdotes. The value of case reports lies in their ability to inspire researchers to put them to the test, and that’s exactly what they did.

    Until then, there had never been a study published that focused on using plant-based diets for treating ulcerative colitis. Wrote the researchers, a group of Japanese gastroenterologists, “We consider that the lack of a suitable diet is the biggest issue faced in the current treatment of IBD. We regard IBD as a lifestyle disease caused mainly by our omnivorous (Western) diet. We have been providing a plant-based diet (PBD) to all patients with IBD” for more than a decade and have published extraordinary results, far better than have been reported elsewhere in the medical literature to date. (I profiled some of their early work in one of the first videos that went up on NutritionFacts.org.) The researchers found a plant-based diet to be “effective in the maintenance of remission” in Crohn’s disease by 100 percent at one year and 90 percent at two years. What about a plant-based diet for relapse prevention in ulcerative colitis?

    “Educational hospitalization” involved bringing patients into the hospital to control their diet and educate them about the benefits of plant-based eating (so they’d be more motivated to continue it at home). “Most patients (77%) experienced some improvement, such as disappearance or decrease of bloody stool during hospitalization.” Fantastic!

    Here’s the really exciting part. The researchers then followed the patients for five years, and 81 percent of them remained in remission for the entire five years, and 98 percent kept the disease at bay for at least one year. That blows away other treatments. Those relapse rates are far lower than those reported with medication. Under conventional treatment, other studies found that about half of the individuals relapse, compared to only 2 percent of those taught to eat healthier.

    “A PBD was previously shown to be effective in both the active and quiescent stages of Crohn’s disease. The current study showed that a PBD is effective in both the active and quiescent stages of UC as well.” So, the researchers did another study on even more severely affected cases with active disease and found the same results, with plant-based eating beating conventional drug therapy by far. People felt so much better that they were still eating more plant-based food even six years later. The researchers conclude that a plant-based diet is effective for treating ulcerative colitis to prevent a relapse.

    Why? Well, plant-based diets are rich in fiber, which feeds our good gut bugs. “This observation might partly explain why a PBD prevents a variety of chronic diseases. Indeed, the same explanation applies to IBD, indicating that replacing an omnivorous diet with a PBD in IBD is the right approach.” 
     
    It’s like using plant-based diets to treat the cause of heart disease, our number one killer. Plant-based eating isn’t only safer and cheaper, but it also works better with no noted adverse side effects. Let’s compare that to the laundry list of side effects of immunosuppressants used for ulcerative colitis, like cyclosporine, which you can see below and at 5:40 in my video. 

    We now have even fancier drugs costing about $60,000 a year, about $5,000 a month, and they don’t even work very well; clinical remission at one year is only about 17 to 34 percent. And, instead of no adverse side effects, the drugs can give us a stroke, give us heart failure, and can even give us cancer, including a rare type of cancer that often results in death. Also, a serious brain disease known as progressive multifocal leukoencephalopathy, which can kill us, and for which there is no known treatment or cure. One drug lists an “increased risk of death” but touts that it’s just “a small pill” in an “easy-to-open bottle.” I’d skip the pills (and their potential side effects) and stick with plant-based eating.

    Doctor’s Note:

    If you missed the previous video, see Preventing Inflammatory Bowel Disease with Diet and stay tuned for The Best Diet for Crohn’s Disease Treatment, coming up next. 
     
    Check the related posts below for some older videos on IBD that may be of interest to you.

    [ad_2]

    Michael Greger M.D. FACLM

    Source link

  • Foods That Disrupt Our Microbiome | NutritionFacts.org

    [ad_1]

    Eating a diet filled with animal products can disrupt our microbiome faster than taking an antibiotic.

    If you search online for “Crohn’s disease and diet” or “ulcerative colitis and diet,” the top results are a hodgepodge of conflicting advice, as you can see below and at 0:15 in my video Preventing Inflammatory Bowel Disease with Diet. 

    What does science say? A systematic review of the medical literature on dietary intake and the risk of developing inflammatory bowel disease finds that Crohn’s disease is associated with the intake of fat and meat, whereas dietary fiber and fruits appear protective. The same associations are seen with ulcerative colitis, the other major inflammatory bowel disease—namely, increased risk with fat and meat, and a protective association with vegetable intake. 

    Why, according to this meta-analysis of nine separate studies, do meat consumers have about a 50 percent greater risk for inflammatory bowel disease? One possibility is that meat may be a vehicle for bacteria that play a role in the development of such diseases. For instance, meat contains “huge amounts of Yersinia.” It’s possible that antibiotic residues in the meat itself could be theoretically mucking with our microbiome, but Yersinia are so-called psychotropic bacteria, meaning they’re able to grow at refrigerator temperatures, and they’ve been found to be significantly associated with inflammatory bowel disease (IBD). This supports the concept that Yersinia infection may be a trigger of chronic IBD.

    Animal protein is associated with triple the risk of inflammatory bowel disease, but plant protein is not, as you can see below and at 1:39 in my video. Why? One reason is that animal protein can lead to the formation of toxic bacterial end products, such as hydrogen sulfide, the rotten egg gas. Hydrogen sulfide is not just “one of the main malodorous compounds in human flatus”; it is a “poison that has been implicated in ulcerative colitis.” So, if you go on a meat-heavy, low-carb diet, we aren’t talking just about some “malodorous rectal flatus,” but increased risk of irritable bowel syndrome, inflammatory bowel syndrome (ulcerative colitis), and eventually, colorectal cancer. 

    Hydrogen sulfide in the colon comes from sulfur-containing amino acids, like methionine, that are concentrated in animal proteins. There are also sulfites added as preservatives to some nonorganic wine and nonorganic dried fruit, but the sulfur-containing amino acids may be the more important of the two. When researchers gave people increasing quantities of meat, there was an exponential rise in fecal sulfides, as seen here and at 2:37 in my video. 

    Specific bacteria, like Biophilia wadsworthia, can take this sulfur that ends up in our colon and produce hydrogen sulfide. Eating a diet based on animal products, packed with meat, eggs, and dairy, can specifically increase the growth of this bacteria. People underestimate the dramatic effect diet can have on our gut bacteria. As shown below and at 3:12 in my video, when people are given a fecal transplant, it can take three days for their microbiome to shift. Take a powerful antibiotic like Cipro, and it can take a week. But if we start eating a diet heavy in meat and eggs, within a single day, our microbiome can change—and not for the better. The bad bacterial machinery that churns out hydrogen sulfide can more than double, and this is consistent with the thinking that “diet-induced changes to the gut microbiota [flora] may contribute to the development of inflammatory bowel disease.” In other words, the increase in sulfur compounds in the colon when we eat meat “is not only of interest in the field of flatology”—the study of human farts—“but may also be of importance in the pathogenesis of ulcerative colitis…” 

    Doctor’s Note:

    This is the first in a three-part video series. Stay tuned for The Best Diet for Ulcerative Colitis Treatment and The Best Diet for Crohn’s Disease Treatment. 

    [ad_2]

    Michael Greger M.D. FACLM

    Source link

  • A Person of Color With Crohn’s Disease

    A Person of Color With Crohn’s Disease

    [ad_1]

    By Melodie Narain-Blackwell, as told to Michele Jordan

    I am an educated woman of color with good insurance from a good family who ate healthy food. But it still took more than 30 years for me to be diagnosed with Crohn’s disease. A lot of times, people think a late diagnosis happens for someone without these things, but what do you say about someone like me? Had I been diagnosed as a child, I’m sure I wouldn’t have had as many challenges as I do today. This is why it’s been my mission to help other people with Crohn’s – especially people of color – feel seen and heard.

    You Just Have Stomach Issues

    When I was about 5 or 6, I would get knocks on the bathroom door asking if I was OK. I would be in there longer than normal. I remember having terrible stomach pain. As a child, I was told time and time again that I just had stomach issues. Doctors would question my diet, but I didn’t eat poorly. My family cooked all the time. I come from a multiracial family (my mother is Black and father is Indian) and both sides of my family cooked. My grandmother had a garden. I grew up with my sister and a single mom, and she would get up at 5:30 a.m. to cook for us each day.

    When I was around 13, I remember having a lot of fatigue and some rectal bleeding. Doctors would say, “It’s hemorrhoids” or I just “need more fiber,” so I took Metamucil. But nothing was working. I’d have a lot of nights where I couldn’t sleep because I was in so much pain. I would sleep in the bathtub because it was cold and my body felt like it was on fire. I would go in there with a pillow and a blanket and go to sleep.

    I would tell my mom, teachers, and my cheerleading coach that I wasn’t feeling well, but since doctors continued to say it was just stomach issues or something I ate, I was told to go to school, go to practice, push through.

    College With Crohn’s

    My symptoms got worse when I went to college. I did my best to eat healthy – didn’t do the typical college pizza diet – but I still struggled. Trekking across campus in New York City was horrible. I would sleep in the bathrooms a lot because I was just so exhausted. My grades were hit or miss – I’d either make an A or a D – no middle. My professors would sometimes offer flexibility, but most times I would be penalized for being late on assignments or just having to miss class because of my Crohn’s symptoms. During this time, there was never a gap in my health care, but I still didn’t find relief.

     

     

    Finally, a Diagnosis

    By the time I was diagnosed in my late 30s, I had been so sick. I had stomach pains for 2 years straight (almost every day) and my rectal bleeding increased. I was stuffing gauze in because I couldn’t control the bleeding. I was having eye infections and swelling. I couldn’t keep food down, and I was having trouble walking. When I went to the restroom, it felt like I was being sliced! A few times I suspected I had Crohn’s, but I didn’t know anyone who had it. This is why representation is so important. You need to see yourself in order to put the pieces together sometimes.

    After years of being misdiagnosed with things like gout or being told to “squeeze the inflammation” out of my lips, I was admitted to the hospital in June of 2018 with a 104 F temperature and severe pain. I had a golf ball-sized abscess burst, and I needed emergency surgery. After that, my doctor finally recommended I get tested for Crohn’s. By October of that year, I was officially diagnosed. When people ask me how I felt to finally have an answer in my mid-30s – I say I felt joy.

    My Mission Is Clear

    Having the type of symptoms I did for so long can put you in a state of depression. You start to wonder if you’re doing something wrong. I knew I didn’t drink a lot. I didn’t eat poorly. None of the reasons I thought or were told was the answer. 

    I had Crohn’s.

    I shared many of my symptoms and my diagnosis on social media. People began contacting me out of nowhere to share their own stories, and I started a Facebook group. I was coaching other women of color about the importance of health and was saddened to learn just how many people felt alone – or went undiagnosed for years, like I did.

    In 2020, I started Color of Crohn’s and Chronic Illness (COCCI) because of such an outpouring of people who looked like me who felt alone and unheard. After 2 years, we are a multimillion-dollar organization that serves hundreds of people through policy action, research, and patient support. It truly is my faith in God that has brought me to this point.

    At my lowest, I called off my engagement and thought I was going to die. Today, I’m a married mom of two little ones (ages 2 and 8) and I have the chance to speak to people battling Crohn’s across the country. I encourage people to be aggressive about their health and not give up until they get an answer. My life isn’t perfect. I still have symptoms, but I’m pressing forward. I’ve got the victory, and I have to share it with others.

    [ad_2]

    Source link

  • Crohn’s Disease Doesn’t Define Me

    Crohn’s Disease Doesn’t Define Me

    [ad_1]

    By Christina Difeo Petrella, as told to Michele Jordan

    I’m from a large Italian family of five where food and love were so important. I am the youngest of three children and the only girl. My two older brothers were very protective of me. As a child, I loved sports. I played field hockey, lacrosse, and I ran indoor track. When I was 5, I started skiing and loved being on the slopes with my dad.

    After graduating from business school, I worked for a publishing company. I loved it, but in addition to my love for sports, I knew I had a passion for cooking and baking. My great-grandfather had a bakery, so I felt like it was in my genes. I was obsessed with Martha Stewart.

    This is why I didn’t see Crohn’s coming. I always enjoyed food. While I worked full-time after college, I went to pastry school at night. My co-workers loved me because I was the girl who brought delicious food to work the next day. I had no clue that my relationship with food would change.

    Is It Crohn’s?

    My active lifestyle remained with me as an adult. I worked out regularly with a trainer and ran marathons. One day, I was home dealing with a torn ACL when I started having weird symptoms. My stomach was bothering me and I was going to the bathroom — a lot. I thought it was a stomach bug and tried to just ride it out. Then, my joints started hurting and my legs and feet began to swell. I felt something was wrong but wondered if it had to do with my recent surgery.  

    I have a high pain tolerance, but my symptoms were getting worse. My dietitian friend suggested I try a low-FODMAP diet (one with food restrictions to help certain digestive issues). We tried to troubleshoot and nothing worked. I couldn’t even eat salads, which I loved. Really, it seemed the only thing I could eat was bread or rice.

    A Mother’s Dilemma

    One of my worst days with my symptoms was right before my Crohn’s diagnosis. My doctor put me on two strong antibiotics to see if they would help with my stomach issues. I was still nursing my son at the time, so before I started taking them, I called the pediatrician to see if it would be OK to nurse while I was on medication. She advised me not to, which made me extremely sad. I was feeling so sick and exhausted. Getting out of bed was a struggle, but nursing my son was a big source of joy for me. The idea of having to end that so quickly made me upset. I broke down. I cried for a while. I wasn’t ready to stop nursing him and didn’t think it was fair to stop without weaning.

    I called my doctor just to see if there was something else I could do. At that time, he suspected it was Crohn’s and told me I could hold off on the antibiotics since they wouldn’t be much help. He said I could wait to see what the CT scan showed. I can’t tell you how relieved I was. I cried tears of joy. Looking back, I’m glad I advocated for myself and my son and that my doctor was open to hearing me.

    Finally, an Answer

    I went to several doctors before finally getting diagnosed. By the time I got to a gastroenterologist, I had lost weight, was having joint pain, and was so exhausted that I couldn’t get out of bed. I told my doctor  I had the same symptoms when I was pregnant with my third child. At the time the doctor thought it was an infection. Now, I wonder if it was a Crohn’s flare.

    The doctor ran a variety of tests and did bloodwork. But a CT scan that showed inflammation in my digestive system finally confirmed I had Crohn’s disease. While Crohn’s wasn’t on my personal radar, I wasn’t totally unfamiliar with it. My older brother was diagnosed years prior, so I felt a little prepared.  Still, the diagnosis seemed grim at first. I cried all the way home.

    My New Life

    This new life has been an adjustment for me. I’m always on the go, but I’ve learned how to slow down and pay attention to my body. When I first heard I  would need to be on meds all my life, I was scared. It was heavy. I don’t like taking medications, but I’ve been able to talk to my doctor about tapering down my meds depending on whether or not I’m having flare. I’ve had a good dialogue with my doctor, and I’m glad he’s supporting me.

    I’ve had some awkward moments with friends and family when they don’t understand my new eating habits, but overall they are so supportive. Little things still pop up to remind me. Recently I was out to dinner with friends, and I had to pass on the sparkling water. I just said, ”Oh yeah. I don’t do well with this.”

    Overall, I have a great group of friends and family who understand. Many of them are dealing with their own health issues. The biggest challenge comes when I go out to eat and the restaurant staff doesn’t understand why I’m ordering a certain way. I’m not a diva. This food I’m asking about can actually hurt me. I don’t think they’re trying to be mean; it’s just a lack of education about certain diseases.

    One tip: Try to look at the menu before you go out to eat or call the restaurant ahead of time to ask questions.

    A Friendship With Food

    At home, I do a lot of meal planning. I add lots of vegetables to every meal. I have to plan. I know there isn’t much evidence that food can cure Crohn’s, but I found some information about a plant-based diet and how it may help gut health. I’ve always tried to eat healthy, but now it’s more important. I don’t eat a lot of processed food. I’ve cut back on dairy and I’m feeling better. I’m trying to eliminate sugar, which is tricky for me as a baker. But I’ve found some sources for cooking without a lot of sugar.

    My brother with Crohn’s has also helped me with my eating habits. I’ve found some healthy recipes that I’m trying so I am still able to enjoy my passion for cooking. I’ve started a food blog on Instagram, and I’m working on a cookbook. I’d love to have my own bakery or restaurant one day. I’m the same Italian girl who has a love affair with food. I’ve had to make some changes, but I still enjoy creating new recipes. I still love the Food Network.

    My goal is to set an example for my family. I’m trying to show in my blog while there are so many things I can’t eat, there are also a lot of things I can eat. As a wife and mom of three, I’m teaching my family to enjoy food and not see it as good or bad. It’s all about how it makes you feel.

    Grateful Each Day

    I’ve had a few flares throughout my life, but I’m so grateful that I didn’t get diagnosed until I was older. My heart goes out to people who are diagnosed earlier in life. Medications will be a part of my life from now on, and I’ll have to get colonoscopies and other tests more often. But my brother has been off medicine and without a flare for 15 years, so I’m hoping to have the same success. I guess I’m still trying to keep up with my big brother!

    These days, I’m still exercising and staying active. I want to do marathons again when I’m ready. In the meantime, I’m taking a food photography class to help with my food blog and website, and my friends want me to open a restaurant. Maybe I will, or maybe I’ll have a cooking show one day. Until then, I still enjoy just cooking for my family. It’s my legacy.

    [ad_2]

    Source link

  • A Cure for Crohn’s: How Close Are We?

    A Cure for Crohn’s: How Close Are We?

    [ad_1]

    A Crohn’s disease researcher talks about the quest for a cure and better treatments.

    [ad_2]

    Source link

  • My Journey With Crohn’s Disease: Coming to Terms

    My Journey With Crohn’s Disease: Coming to Terms

    [ad_1]

    By Christine Morris, as told to Susan Bernstein

    I was 16 when I was diagnosed with Crohn’s disease. It was 2004. I was just a very sick

    kid. Even as a baby, my mom told me that I had to be on soy formula because I was lactose intolerant. When I was older, doctors told my parents I had cyclic vomiting syndrome. This was a permanent thing where my diaphragm was hyperactive. If I throw up more than once, I can’t stop. I would just go on and on until there was nothing in my stomach anymore. I had to get fluids at the emergency room. I learned as an adult that I can get ahead of this as it starts. I take a drug called Zofran. It makes me drowsy, but the good thing is that it dissolves under the tongue, so you don’t vomit it back up.

    Alien in My Stomach

    It all started with those warning signs. Doctors said, “Well, maybe she is just more susceptible to catching stomach bugs.” At 13 or 14, I suddenly took a turn for the worse. I developed an intestinal blockage. Crohn’s had been doing damage to my small intestine for years. I missed almost a whole year of classes during my sophomore year of high school. I had vomiting episodes and severe abdominal pain.

    We joked sometimes that I had an alien in my stomach, because it would rise and fall so heavily. I wore sweaters and sweatshirts to muffle the noise it would make. Through this whole process, I saw multiple doctors and had multiple tests, including colonoscopies and endoscopies that didn’t find anything. It was terrible.

    Doctors would say to me, “Well, maybe it is psychological.” At that age as a girl, they were always thinking that my symptoms might be caused by an eating disorder. This condition can stunt your growth, too. I lost so much weight. I was unable to absorb any food or nutrients. I wasn’t developing at the normal rate a teenage girl should. I looked 12 at age 15.

    At 15, we finally decided to try to see a pediatric gastroenterologist in Atlanta. I grew up in Rome, GA. Unfortunately, I didn’t have access to high-quality care there. With a more severe disease, we wanted to be seen by a specialist at a research hub. We drove an hour into Atlanta to see a specialist at Children’s Healthcare of Atlanta at Scottish Rite. He was one of the greatest doctors I ever had and he knew Crohn’s so well. He looked at my hands and said, “Have you ever noticed that your fingernails are shaped like the back of a spoon?” He called this clubbing.

    Surgery, and an Answer at Last

    Eventually, the only way to definitely learn what was going on was to do exploratory surgery. In August 2004, they found exactly where my Crohn’s damage was located. It was just above the ileum, so too far in to be seen on a colonoscopy and too far down to be picked up by an endoscopy. Apparently, this had been developing for so long that inflammation had destroyed a whole section of my small intestine.

    I was relieved to get a diagnosis. The big thing you want when you go through all of this is to have an answer for your symptoms and a plan. When I woke up after the surgery, they said, “You definitely have Crohn’s disease. It’s a permanent, chronic illness.” They did a resection of my intestine while I was in surgery, and they thought that hopefully, my disease would stay in remission with medications. It did for 6 years. Then, it came back with a vengeance in 2010. I had flaring, active disease again in my large intestine.

    Play the Cards You’re Dealt

    Crohn’s can appear anywhere in your digestive tract from your mouth to your large intestine. Colitis is only in your colon. The unfortunate thing about Crohn’s is that no amount of resecting can cover it. It was at that point when I realized the unfortunate cards I had been dealt. I realized that it would always be difficult for me to keep my Crohn’s under control.

    Between 2004 and 2014, I was on seven different medications. At first, I only had to take an anti-inflammatory and an immunomodulator [drugs that treat the immune system to control Crohn’s flares]. That worked for 6 years. When I flared again, they put me on high doses of prednisone, a steroid: short bursts, but often. Then, I switched to biologics when nothing else would work. They worked longer, and initially, they were more effective. I have taken literally everything.

    Reach Out for Help

    What did I wish I knew when I was younger? I definitely wish I had known there were resources available to help us understand Crohn’s and what I was going through. Obviously, the Crohn’s & Colitis Foundation of America (CCFA) does all it can to get information out there for patients. My family and I had no idea what this disease was or where to go for help. We never knew anyone else who had Crohn’s. We found out later that a cousin on my dad’s side had Crohn’s, too, but nobody else in my family had it.

    Another thing I wish I knew was that, maybe for far too long, we thought the right doctor to see for my symptoms was my pediatrician. I really needed to see a gastroenterologist, because they specifically treat the GI system. Some of these doctors specialize in inflammatory bowel disease (IBD). I wish I had known that you could see someone who was also involved in Crohn’s or IBD research. They could have told us about clinical trials of new treatments that are not available to the general public yet but could be available for you if you have Crohn’s. These are medicines that can save lives.

    I wish I had known that there were other resources to help people with Crohn’s. It was a very big issue for me that I was missing so much school. My school didn’t understand why I was missing classes. My dad had to go to get doctor’s records and letters to prove that I was out of school for legitimate medical reasons.

    25 Bathroom Trips a Day

    By 2010, I kept trying different biologics. I was learning to do home injections. I kept telling myself, “Well, it’s better than the alternative! Better than experiencing all of my symptoms.” Eventually, those drugs weren’t working either. I was going to the hospital more and more for vomiting, pain, and incontinence. These were signs that something was amiss. I had loose, bloody stool. I was running to the bathroom 25 times a day. I could not even finish a meal without running to the bathroom.

    In 2014, I made the decision to do a diverting ileostomy [surgery to steer waste to a pouch instead of the inflamed gut]. They thought that giving my colon some bowel rest would help. I did that for a year, and I didn’t get better. My disease was severe. So, in 2015, I had permanent ileostomy surgery. They removed my large intestine and what’s called “the stump,” which is basically the anus. I don’t have a large bowel anymore. All stool comes through my small intestine to an ileostomy bag.

    Thankfully, I worked for 9 years at CCFA. They were very understanding about patients working for them and had good insurance. I had to take short-term disability and max out my FMLA [Family Medical and Leave Act] leave. They were able to work with me, and I was able to keep my job. Recently, I was laid off due to the pandemic, and I now work at Habitat for Humanity.

    Don’t Overlook Your Mental Health

    On the first day of my current job, I had so much scar tissue built up that I had a severe vomiting episode. On my first day! I had to have surgery to remove scar tissue. Thankfully, with this job, I was open and honest with my boss about my Crohn’s disease. She was able to give me leave time in advance so I could get better. I love my job.

    If I could give advice to someone who is first diagnosed with Crohn’s, it would be this: Have a support system, whether that’s your parents, a friend, or someone else. You will need people who can drive you to the hospital or for tests.

    Crohn’s can be mentally taxing as much as physically taxing. Don’t underestimate your mental health needs. Get help or medication if you need it. I learned this the hard way. When I had surgery, they prescribed pain medication, which you need at first. But these drugs can cause depression, too. You don’t feel the physical pain for a while, but when you come off those drugs, you can feel so low. Trying to avoid that situation whenever possible helped me. I also take an antidepressant. Talk about all of your options with your doctor. Over-the-counter probiotic supplements also helped me, and I wish I had known this earlier.

    One thing I’ve learned is that you must look at the whole body when you’re treated for an autoimmune condition like Crohn’s. My condition is more systemic. I have become very interested in the connection between the brain and the gut. They’re clearly connected.

    Stress can affect your gut health. My Crohn’s flares happened to me during stressful times in my life, such as when I was graduating from high school and college and planning my wedding. Don’t overlook your mental health.

    [ad_2]

    Source link

  • What People Don’t Understand About Crohn’s Disease

    What People Don’t Understand About Crohn’s Disease

    [ad_1]

    By McKenna Plant, as told to Barbara Brody

    I started having Crohn’s disease symptoms when I was 15 and was formally diagnosed about a year later. In a way, I was lucky: Many people wait years before getting the right diagnosis, but I got a jump-start because my father has ulcerative colitis, another form of inflammatory bowel disease (IBD). He rarely talked about it when I was younger — I don’t think I even heard the words “ulcerative colitis” or “inflammatory bowel disease” until I started having symptoms myself, but once I did, he opened up and became my advocate.

    In the years since — I’m 29 now — I’ve had a rough ride. One of the hardest things about living with IBD is the unpredictability. One day you could be feeling great and the next you’re curled up in a ball. I’ve found that connecting with others with IBD is immensely helpful. I was initially reluctant to join support groups because I thought that they were only for old people or those who wanted to sit around commiserating about their problems. But after I gave them a try I realized that it’s a relief to be able to open up in a safe space. I’ve also spent a lot of time on Instagram engaging with people who are really vocal about their experience with IBD or just chronic illness in general.

    Over the years as I built my IBD tribe — which now also includes my fiancé, who has ulcerative colitis — I’ve become empowered to advocate for people with IBD. I started volunteering with the Crohn’s & Colitis Foundation when I was a teenager. When I graduated from college, I joined the staff that manages Camp Oasis, the foundation’s residential summer camp for kids with IBD. I also frequently speak at fundraising events. I truly hope that by sharing my journey I’m encouraging others to share theirs.

    Talking about IBD isn’t easy. It’s not a glamorous illness, and discussing your intestines and bathroom habits can be embarrassing. But I believe it’s the best way to get the support you need while educating others. There are so many misconceptions about IBD, and it’s helpful for those who have it as well as those who don’t to learn the facts. Some misconceptions I try to dispel:

    “If you don’t look sick, you can’t be that sick.”

    This is a big one for anyone with an invisible illness. I look like a young, healthy, active person, but that doesn’t mean my body isn’t attacking me on the inside.

    “You’d feel better if you just ate healthier.”

    I wish it were that simple! Crohn’s is a chronic autoimmune ailment, and when I’m in a flare I won’t go near a vegetable. My body can’t even digest a piece of lettuce at that point.

    “It’s not a big deal; I have IBS.”

    IBD sounds a heck of a lot like IBS (irritable bowel syndrome), but they’re totally different. I fully understand that some people with IBS feel lousy, but it’s not the same thing as having an autoimmune condition. It’s not unusual for people with Crohn’s to develop serious complications including abscesses, bowel obstruction, and fistulas, which is when the body forms a tunnel that connects the intestines to nearby organs or tissue.

    I have a fairly severe case of Crohn’s, and I’ve already had to have two surgeries: one that entailed removing about 10 inches of my small intestine and another to create a permanent ostomy, which allows stool to exit my body though an opening (stoma) on my stomach and into an external ostomy bag.

    “Just take your medicine and you’ll be fine.”

    Even the strongest IBD medications on the market (I get two via infusion every 4 weeks) don’t work for everyone. And sometimes a drug that initially works for you stops working. That’s really scary as a patient because you’re worried you’re going to run out of options. It’s also why fundraising is so important; we need new treatments so that everyone with IBD can get the help they need.

    “Getting an ostomy will ruin your life.”

    I got my ostomy about 4 years ago, and I wish I had done it sooner! Before I had my ostomy I was constantly worried about where the closest bathroom was. I always kept an emergency kit in my car with an extra pair of underwear, pants, and toilet paper. Do you know how embarrassing it is for a 20-something person to have an accident? You feel like you never want to go out in public again and just want to isolate yourself. Now I can go for a run or take a road trip without being paralyzed with fear.

    “It’s better to keep Crohn’s to yourself.”

    I know how hard it can be to talk about having IBD, but staying silent is stressful. If you’re able to open up to friends, family, and co-workers, you’ll feel so much better because you won’t have to worry about hiding it. Sharing your story and letting others know what you’re going through also has the potential to make life better for everyone with IBD. I once got into a fight with a flight attendant because I was in the middle of a flare and desperate to use the bathroom as the plane was about to take off. If he had understood more about IBD, he would have known that waiting until the plane reached cruising altitude was not an option.

    Talking about IBD is also key to influencing legislators who have the power to enact laws that help you get the best care. Right now many insurance companies require that you try a series of cheaper treatments that don’t help before they’ll pay for more expensive options like biologic drugs. This process, known as “step therapy” or “fail first,” puts us at risk by delaying the right treatment, which can be dangerous.

    Many states have recently passed step therapy reform acts, and I’m hoping that California — where I live — will soon join them. I’m also optimistic that federal legislation called the Safe Step Act will be passed in the not-too-distant future.

    I hope that by talking to lawmakers, which I’ve done during various advocacy events, they’ll gain a better understanding of why these changes are so important. It’s a pretty amazing feeling to realize that simply sharing your story has the power to impact change on a local and federal level and will have lasting benefits for the IBD community.

    [ad_2]

    Source link

  • How Crohn’s Disease Affects Your Body

    How Crohn’s Disease Affects Your Body

    [ad_1]

    By Ryan Ungaro, MD, as told to Barbara Brody

    Back when I was in medical school, I decided to specialize in gastroenterology because I thought it was a  fascinating field. I still do. Inflammatory bowel disease (IBD) patients, including those with Crohn’s, are particularly rewarding to treat because I really get to know them and support them closely over many years. It’s my job to usher them through difficult times and get them back to enjoying a good quality of life.

    As director of the Comprehensive Care for the Recently Diagnosed IBD Patient (COMPASS-IBD) program at Mount Sinai in New York, I see many people who have only recently learned that they have Crohn’s. Often these patients have classic symptoms, which include diarrhea, abdominal pain, and urgency. But many don’t realize there are a number of Crohn’s disease symptoms, and potential complications, that aren’t so obviously tied to the digestive system

    Body-wide Issues

    Crohn’s disease is an inflammatory condition. That inflammation primarily affects the intestines. But fever might be a sign of Crohn’s, particularly when it happens in conjunction with other symptoms. Fever suggests systemic inflammation, which could be stemming from inflammation in the bowel.

    Unexplained weight loss can also be a symptom of Crohn’s because body-wide inflammation has the potential to speed up your metabolism. Meanwhile, people with Crohn’s often lose weight if they aren’t absorbing nutrients like they should. That’s most likely to happen when the bowel gets ulcerated or inflamed or because you have chronic diarrhea.

    For that reason, weight loss could indicate new disease (in someone who hasn’t yet been diagnosed) or be a sign of a flare up in someone who’s been living with Crohn’s for some time. In other cases, patients lose weight simply because they’re eating less in an effort to avoid triggering or worsening their GI symptoms.

    Fatigue is another common complaint among people with Crohn’s disease. It may be linked to inflammation, but we also see it in many patients who seem to have their disease well-controlled. This is an active area of research, so hopefully we’ll know more about why this happens in the future.  

    Non-GI Complications

    When someone has severe Crohn’s disease or is experiencing a flare, it isn’t only their digestive system that’s in trouble. Some people with Crohn’s develop eye problems such as episcleritis, scleritis, and uveitis, which are different types of eye inflammation. They can cause redness and vision trouble.

    Inflammation associated with Crohn’s can also lead to skin symptoms, like tiny red bumps (erythema nodosum) or sores (pyoderma gangrenosum) that appear on the arms or legs.

    Another possible complication is a disease of the bile ducts called primary sclerosing cholangitis. It’s more common in people with ulcerative colitis (the other type of IBD), but it does occur in some people with Crohn’s.

    Crohn’s and Other Autoimmune Ailments

    Crohn’s disease is an autoimmune condition. It happens when your immune system mistakenly attacks itself or responds inappropriately to a perceived invader. If you have one autoimmune disorder, the risk of having another goes up. Crohn’s disease frequently overlaps with inflammatory forms of arthritis, especially ankylosing spondylitis, a condition characterized by inflammation in the joints of the lower spine and pelvis.

    Psoriasis, an autoimmune disorder known for causing skin scaly patches, is also fairly common among people with Crohn’s.

    When someone with Crohn’s develops joint pain or skin problems, we often loop in a dermatologist or rheumatologist to tease out what’s going on. Sometimes the symptom turns out to be a complication of Crohn’s, but you can’t always chalk it up to underlying GI disease. Someone who turns out to have inflammatory arthritis or psoriasis may need specific treatment for those issues, in addition to the treatment they’re getting for Crohn’s.

    The Importance of Personalized Care

    No two people with Crohn’s are alike, so treatment needs to be individualized. One of the things we consider when figuring out how to treat someone is whether or not they have extraintestinal manifestations. That means symptoms or problems that aren’t limited to the gut.

    For instance, someone who has Crohn’s as well as psoriasis might be able to take a medication with broad anti-inflammatory action that helps both conditions. Another person with Crohn’s symptoms that are confined to the GI tract might be better off with a drug that specifically targets inflammation in the gut.

    I’m particularly interested in learning more about how to match each patient with the best treatment for them. At the moment, I’m conducting research funded by the National Institutes of Health aimed to predicting which patients, from the time of diagnosis, are likely to have a mild disease course versus a more severe disease that’s likely to lead to serious complications or require surgery. Right now it’s often a guessing game, but if we can figure that out early on (using blood or intestinal biopsy markers) it will help us determine who needs the most aggressive treatments to keep their entire body as healthy as possible. 

    [ad_2]

    Source link