Posts filed under ‘Diet’
Cure vs. Remission: Thoughts from a Crohn’s Caregiver
Recently, I was engaged in a Facebook argument (mature I know) with someone about whether or not Crohn’s disease could be cured. She (who doesn’t have the disease) was claiming that it could be cured by eliminating trigger foods from the patient’s died. I was trying to explain to her, with little success, that yes, if you eliminate trigger foods, some patients will experience a decrease in symptoms and subsequently may enter into a period of remission; however, that does not mean they are cured.
This argument really made me angry and I started to do a little digging online and was astounded to see how much misinformation there is out there. That is why I wrote this piece for the Huffington Post:
Crohn’s disease and ulcerative colitis are the two main diseases that make up the broad inflammatory bowel disease diagnosis. In patients with these diseases, the body’s immune system attacks parts of the digestive tract and causes inflammation, cramping, diarrhea, bleeding and all sorts of other issues.
According to the Crohn’s and Colitis Foundation of America, “To date, there is no known cause of or cure for IBD, but fortunately there are many effective treatments to help control these diseases.”
Medications, surgery, and diet modifications can help patients with inflammatory bowel diseases live regular lives. In patients with Crohn’s disease, neither of these treatments induces a cure; the best they do is bring a patient into a symptom-free state (remission, see below). Patients with ulcerative colitis can be treated with the surgical removal of the colon; however, surgery will not cure the underlying inflammatory disorder that the patients have, leaving them susceptible to pouchitis, arthritis, skin ulcers and other autoimmune diseases. The bottom line: When you have an inflammatory bowel disease, you have it for life.
Please take a look at the full piece here!
Not Just a Pooping Disease: 10 Things You Didn’t Know About Inflammatory Bowel Disease
I recently had the privilege of working on a piece for the Huffington Post with Stephanie from The Stolen Colon for Crohn’s Disease and Ulcerative Colitis Awareness Week. The piece posted today and I wanted to share a snippet from it with you:
These diseases have been known primarily as “pooping diseases” because many patients frequent the bathroom as a result of the cramping and abdominal pain caused by IBD. However, there are many aspects of the disease that are far worse than spending time in the bathroom.
Here are 10 things you didn’t know about IBD:
IBD patients often take many medications with powerful side effects.
Patients with IBD often depend on medication to control the inflammation and pain caused by their disease. Medications commonly used include antibiotics, anti-inflammatories, steroids and immunosuppressants.While beneficial, these medications can cause side effects including nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.
IBD causes extraintestinal issues.
Crohn’s disease and ulcerative colitis can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.IBD can have significant impact on the mental health of patients.
According to Oak Park Behavioral Medicine, about 25 percent of people with IBD will experience depression even when in remission, and that number rises to 60 percent during a flare. Outside of depression, the Crohn’s and Colitis Foundation of America reports that patients with IBD often experience anxiety, denial, dependence, stress and poor self-image.Having IBD is exorbitantly expensive.
The annual direct cost of Crohn’s disease and ulcerative colitis in the United States is estimated to be $6.1 billion. A recent study showed that the mean annual cost for a patient with Crohn’s was $8,265 and for ulcerative colitis was $5,066. Each patient’s situation differs, but the most common costs of IBD include diagnostic tests, hospitalizations, surgery and medications, some of which can cost as much as $10,000 per dose.
You can view the full piece here.
A Baffling Side Effect
We are confused.
In the six and a half years that Dan has been treated for Crohn’s disease, he has lucked out in that, for the most part, he has not experienced any serious side effects from medication. Asacol did nothing to him (in fact, it didn’t even help him). The only other medication he’s been on is 6-MP and that gave him terrible fatigue so severe that he could barely function.
Remicade
For the past 3 years, Dan has getting Remicade infusions every six weeks. He suffers very little side effects from it- in fact, the only thing he feels from it is sleepiness after the infusion caused by Benadryl and a slight headache. These all pass within a few hours to a day of the infusion.
As you know, Remicade can cause a variety of side effects ranging from mild ones like headaches, stomach pain or nausea to serious ones like joint/muscle pain, vision changes and anaphylaxis. Dan’s reaction to the medication, so far, has been on the mild side (knock on wood).
However, for over a year now, we have been baffled by one side effect he’s been experiencing since being on the medication – extreme thirst. Dan is extremely, insatiably thirsty every day. He has some days where when he wakes up, the thirst/dehydration is so bad that he feels nauseous and ill. He drinks constantly throughout the day but nothing seems to help his thirst.
Attention Tri-State IBD-ers: Great Education Program in CT This Weekend!
This is going to be a fantastic education event! Speakers include Dr. Jack Chuong (Digestive Disease Associates), Dr. Dinesh Pashankar (Yale Medical Group), Dr. Francisco Sylvester (CT Children’s Medical Center), Dr. Sandra Escalera, Dr. Joel Garsten (Digestive Disease Center of CT), Dr. Harry Schwartz, Dr. Phil Ginsburg (Gastroenterology Center of CT), Dr. Yanni Oikonomou (Yale Medical Group) and Dr. Michelle Smedley (Connecticut GI).
Topics to be covered include IBD in children, nutrition, medical & surgical care for adults, novel therapies, and support groups.
And the best part of it all- it’s free!
Make sure to RSVP and check it out if you are around this weekend in CT.
Celebrating Passover without the Matzah
I’m sitting at my parent’s house in New Jersey waiting for the first Passover Seder to start and I started thinking about Passover, food restrictions and IBD.
Passover is, hands down, the worst holiday for people with inflammatory bowel disease. The lack of bread and the sheer amount of matzah we consume is a double whammy and definitely makes for terrible bouts of constipation, even in those without stomach issues.
IBD & the Paleo Diet
If you’re like me, cooking special foods to help your loved one with IBD feel good is like a second nature. IBD patients have different needs than those who can tolerate normal diets. There are a lot of different diets that IBD-ers try as a way to help reduce symptoms and enable them to live pain-free lives- SCD, low-fiber, low-residue, gluten-free, dairy-free, etc. Today, I will be focusing on one specific diet: the Paleo diet.
According to the Food Lover’s Kitchen, the Paleo, or “paleolithic,” diet
“…is based upon the idea of eating the foods our bodies were designed for through thousands of years of evolution. These foods were available to early people through hunting and gathering [meat and fish, nuts and seeds, fruits and vegetables].”
Holiday Eating for IBD
With Thanksgiving tomorrow, I thought it would be appropriate to do a short write up about holiday eating for Crohnie’s and UC-ers.
Holidays mean food and lots of it. Some is good, some is bad, and some is all around delicious. But for those with IBD, eating the wrong thing or too much of the right thing can ruin the holiday and equal hours in the bathroom.
Eating with Crohn’s & UC
Anyone with IBD knows how much having the disease sucks. It limits what you can do, where you can go (in proximity to a bathroom), and what you can eat. While you can’t control when you are going to flare or need the bathroom, you can control your diet and try to suit it to help you feel as well as you can.
Whether or not you are on a special diet, it’s always important to keep track of any foods that may trigger you. For some people, that’s spicy foods, for others dairy. Each person is different so please don’t take what I write as an end-all be-all for IBD diets. Do what works best for you. So without further ado, here are some of the more common diets and food restrictions for Crohnies.
Genetically Modified Food & IBD
Today’s blog post comes from a topic my coworker mentioned to me- genetically modified organisms in food. We were out for pizza last week and he approached me asking if I had read anything about the relationship between GMOs and IBD and I hadn’t. He said that there have been recent studies/papers showing that GMOs are linked to causing IBD In fact, it hadn’t even crossed my mind. So I did a Google search and found this out:
Genetically modified organisms have had specific changes introduced into their DNA by genetic engineering techniques. Common genetically modified foods include soybean, corn, canola, rice, and cotton seed oil.
Routine Eating
When you live with someone with Crohn’s, there are things far and few between that are more important than having a routine. I’m not talking about a full daily routine for when you wake up, go to the bathroom, etc. but instead a routine schedule of when you eat.
I personally don’t need to eat at a specific time or specific number of times a day (yes I do know that isn’t the healthiest if I am not eating three times a day but I’m not the one with a stomach disease :-)). However, Dan needs to stay with a strict routine, especially during the school year. When he is working, he can’t eat after 6:30 p.m. because it might make him have to leave his class unattended the next morning to use the bathroom. He also can’t eat in the morning for fear of having the same thing happen.
Caring for Crohn's & UC 