Happy to Provide Information About Crohn's and IBD's

When I was first diagnosed with Crohn's, I wanted to learn as much about my disease as possible. I read hundreds of websites and started thinking that I was spending hours upon hours searching for more information.

That is the reason that I wanted to start this Blog.

I hope I can provide a source of information that touches on as many topics as possible. In my research I could not find a single source to gain basic knowledge about my condition. There are many good sources but sorting through all the Medical Terminology took time because I did not know the terms being used on many of the sites.

My goal here is to provide a good starting point for people that are interested in learning about Crohn's and Irritable Bowel Diseases.

Please comment and if you have questions, please ask.

Bob

Updated Pages

Be sure to check back often as I update the pages here with many informative subjects on Crohn's and IBD's

Getting Support

In the last several months, I have searched for support and groups that relate to Crohns.
One of my favorites is a free phone app called GI Monitor.

Support is an important part of living with IBD's. People that have the disease or are in remission understand the daily aches, pains and habits that we deal with on a daily and sometimes minute by minute basis.

GI Monitor allows you to track your IBD symptoms such as Stool form, frequency, blood content and add custom symptoms. The app also allows you to track meals, stress levels, pain levels and medications. The app also has a social feature that allows you to communicate with other sufferers of IBD.

The group, known as "Butt Book" is very knowledgeable and friendly group of people from all over the USA and the world. You can learn about symptoms, medications, treatments, tests and procedures that you or someone you love may encounter when dealing with any of the IBD's.
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You can search facebook for other social outlets and reference www.ccfa.org. Crohns Colitis Foundation of America is an excellent place to start learning about the disease and find local support groups and events.

Dining Out

Dining Out and What to Do

  

Eating out at restaurants or at social functions can be a tricky situation for people with inflammatory bowel disease (Crohn's disease and ulcerative colitis [IBD]). It is especially difficult when you are dining with people you have a professional or casual relationship with, since they are not likely to know about your health problems. (Nor would you necessarily want them to know.) How can you handle a high-powered business lunch or romantic dinner without bringing attention to your problem?

Before you leave for the restaurant, decide on what you will eat and how much you will eat. If you're afraid that you will be hungry and tempted to eat something you shouldn't -- have a safe snack before you leave.

·                           Is There A Special Diet For IBD?

Look At The Menu

If you know what restaurant you're going to, do a little reconnaissance first. Many restaurants and catering halls have web pages that include their menus. If you're really concerned, you can even call the restaurant and ask if they serve any dishes you know are "safe" for you to eat.

Locate The Restroom First

Ask the host or hostess where the restroom is located before you are seated or right after being shown to your table. If your dining companions don't know about your health problems, you can use the excuse of wanting to wash your hands before dinner. This way, you know where the facilities are located and you can check to be sure they're clean and stocked.

Skip The Cocktails

Alcoholic drinks may not be a good idea for people with IBD. Try sparkling water or a virgin cocktail (or a "mocktail") if you're concerned about appearing chic but don't want to drink. If you need an excuse, you can always say you're taking antibiotics or other medications that don't interact well with alcohol. Or there's always the old standby -- "I have to drive myself home so I'm not drinking."

Watch Out For Appetizers

Appetizers such as mozzarella sticks, hot wings, nachos, and chicken fingers are all fatty, fried or dairy-filled foods that might not be good to your digestive system. If everyone else is having an appetizer and you're feeling left out, have some soup instead or dig into the breadbasket.

·                           Low-Fat/Healthy Appetizers & Tips

Anticipate Any Awkward Questions

Not everyone is tactful. Someone may ask you "Why are you ordering chicken at a famous steakhouse?" Decide beforehand how you will answer. You could mention your illness briefly if you think it will be well received. If not, "I'm on a diet" or "I stopped eating red meat and dairy" are also common reasons that aren't likely to bring up more questions.

Amber Tresca was diagnosed with ulcerative colitis at the age of 16. After 10 years of active disease, medical therapy failed and she underwent the 2 step j-pouch surgery (removal of the large intestine and creation of an internal pouch from the last part of the small intestine).

Experience:

Amber was a copy editor and staff writer for a major medical publishing house that produces specialty medical journals for physicians. She is currently a group web producer for the same publisher, working on several web sites that provide clinical information for healthcare providers.

Education:

Amber graduated with a bachelor's degree in Environmental Science from the Lymann Briggs College at Michigan State University.

From Amber J. Tresca:

After my gastroenterologist found severe dysplasia in my colon, I realized how little I knew about my disease, and how dangerous that was to my health. I hope to raise awareness of inflammatory bowel disease (Crohn's disease and ulcerative colitis) and other digestive conditions, as well as reach out to patients like me who are in need of news and accurate information.

Summertime Suggestions from Amber Tresca

Summer means long weekends, fragrant nights, and vacations with the family. When you have inflammatory bowel disease (IBD), summer does not necessarily come with the same anticipation it does for other people. But there are things you can do to take care of yourself and have fun this summer.

One of the chief dangers of warmer weather is dehydration. If you've got diarrhea or vomiting, you are even more at risk for developing dehydration. Be aware of how much water you are drinking during the day, and be sure to drink extra if you are exercising in the heat. You may want to consider sports drinks (without caffeine!) if you are really sweating it out in the sun.
We are all at risk for skin damage and skin cancer from being out in the sun. In addition, people with IBD may be taking medications that have a side effect of sun sensitivity. Be aware of the potential side effects of your medications, and cover up during peak sunlight hours with either clothing or sun block to prevent burns.

So, You are Flaring and Don't Know What To Eat Try These

The following is a list of foods that I was given by the Mayo Clinic in Rochester Minnesota.

Foods Recommended:	Foods to Avoid:
Breads, Cereal, Rice and Pasta: - White bread, rolls, biscuits, croissant, melba toast - Waffles, French toast, pancakes - White rice, noodles, pasta, macaroni, peeled cooked potatoes - Plain crackers, Saltines - Cooked cereals: farina, Cream of Rice - Cold cereals: Puffed Rice, Rice Krispies, Corn Flakes, Special K	Breads, Cereal, Rice and Pasta: - Breads or rolls with nuts, seeds or fruit - Whole wheat, pumpernickel, rye breads, cornbread - Potatoes with skin, brown or wild rice, kasha (buckwheat)
Vegetables: - Tender cooked and canned vegetables without seeds: carrots, asparagus tips, green or wax beans, pumpkin, spinach, lima beans	Vegetables: - Raw or steamed vegetables - Vegetables with seeds - Sauerkraut - Winter squash, peas, broccoli, Brussels sprouts, cabbage, onions, cauliflower, baked beans, peas, corn
Fruits: - Strained fruit juice - Canned fruit, except pineapple - Ripe bananas - Melons	Fruits: - Prunes, prune juice - Raw or dried fruit - All berries, figs, dates and raisins
Milk/Dairy: - Milk, plain or flavored - Yogurt, custard, ice cream - Cheese, cottage cheese	Milk/Dairy: - Yogurt with nuts or seeds
Meat, Poultry, Fish, Dry Beans and Eggs: - Ground, well-cooked tender beef, lamb, ham, veal, pork, fish, poultry, organ meats - Eggs - Peanut butter without nuts	Meat, Poultry, Fish, Dry Beans and Eggs: - Tough, fibrous meats with gristle - Dry beans, peas, lentils - Peanut butter with nuts
Fats, Snack, Sweets, Condiments and Beverages: - Margarine, butter, oils, mayonnaise, sour cream, salad dressing - Plain gravies - Sugar, clear jelly, honey, syrup - Spices, cooked herbs, bouillon, broth, soups made with allowed vegetables - Coffee, tea, carbonated drinks - Plain cakes, cookies - Gelatin, plain puddings, custard, ice cream, sherbet, popsicles - Hard candy, pretzels	Fats, Snack, Sweets, Condiments and Beverages: - Nuts, seeds, coconut - Jam, marmalade, preserves - Pickles, olives, relish, horseradish - All desserts containing nuts, seeds, dried fruit, coconut, or made from whole grains or bran - Candy made with nuts or seeds - Popcorn

Living With Crohns and IBD

LIVING WITH CROHNS DISEASE

AND

IRRITTABLE BOWEL DISEASE

In December of 2011, I was celebrating the holidays with my family and enjoying our 4 boys and 9 grandkids. After the Christmas festivities, I felt a flu bug coming on. I was experiencing abdominal pains, indigestion and diarrhea.

I put up with the symptoms for a couple of weeks at which time I went into Urgent Care due to unstoppable diarrhea, stomach pains and rear end that I could barely touch to clean myself. My stomach pains were the worst pain I ever experienced in my life. The doctor told me there was a flu bug going around and she gave me medicine to relieve the cramping and recommended Imodium for the diarrhea.

After another two weeks with no relief I went into my General Practioner. He initially diagnosed me with Diverticulitis, a disease that affects the digestive tract in the Colon. He recommended a colonoscopy which revealed that I had Ulcerative Colitis a more severe form of the disease that affected about 70% of my colon.

I was later referred to a Gastroenterologist (a specialist in the digestive tract). After an MRI and another Colonoscopy I was diagnosed with Crohns Disease. All of these diagnoses are related to the digestive tract. Colitis and Diverticulitis generally affect the colon whereas Crohns can affect everything from the mouth to the rectum.

THE DISEASE

In general these diseases will fall into the family of Irritable Bowel Disease. Most of these diseases cause extreme dehydration, extreme bleeding from the digestive tract, abdominal cramps, urgent bathroom runs with accidents occurring, ulcerations, Fistulas (a cyst like formation in or near the rectum), Fissures (small tunnels from the rectum or intestine to the outside of the rear end), and sometimes life threatening ruptures.

These diseases cause extreme pain, frequent trips to the Emergency Room and many trips to the restroom.. The diseases are generally hereditary and are an auto immune disease, where the body attacks the good bacteria in the digestive tract. There is no cure for Crohns Disease since it can occur and re-occur anywhere in the digestive tract. Patients can experience extreme weight loss, vitamin deficiencies and contract other bacteria and viral infections. Patients of course experience extreme fatigue.

Many patients find themselves carrying “emergency packages” with change of clothes, toilet paper and many times planning a simple outing based on their knowledge of the area and available bathrooms. Some patients barricade themselves in their homes because they don’t want the embarrassment of multiple bathroom trips during an outing. Many patients are totally secretive about their disease and cannot find anyone to talk to or anyone that understands what they are truly experiencing.

TREATMENT

They are initially treated with very strong Corticosteroids. The steroids reduce inflammation in the intestines or colon where the disease is appearing. One such drug is Prednisone. This drug has severe side effects. I was going 50 plus hours with no sleep. I was continuously eating and gained weight. I also experienced extreme joint pain that required me to walk on crutches from one to two days until the side effect passed. Other colon related diseases can be cured by removing the colon and replacing it with an ostomy bag (a bag placed externally to collect body waste) or replace the colon with a section of the small intestine. Sometimes various medicines will eliminate the symptoms and put the disease into remission and sometimes never recurs for months or even years.

Crohns however cannot be cured. The treatment can vary from patient to patient, most probably being treated with a biologic medicine. Humira is injected into the skin like diabetes insulin shots and injected every week to every other week depending on the patient. Remicade is considered the “Big Dog” treatment which requires infusions that are similar to Chemo Therapy without the radiation. Remicade requires an every 8 week infusion once the initial acclimation process is complete.

Many of these drugs have extreme side affects from nausea to cancer forming. Since the biologics suppress the immune system to trick the body into not attacking itself, a patient is more apt to contract many types of viruses and sicknesses from their environment. Infections and other things like colds and flu are easy to contract and hard to alleviate since the immune system is being suppressed.

When the symptoms recur, it is called a “flare”. I have been off work for almost five months trying to force my “flare” into remission. Short Term disability does not cover the medical bills and monthly bills. One infusion of Remicade can cost from $3000 to $8000. My infusions are $5000 every eight weeks. The effect on my family members and me are emotional, physical and financial stress. My wife having to wake up in the middle of the night two to three times a week to drive me to the Emergency Room is physically draining when her work start time is from 5 AM to 8 AM. My children worrying if I will be ok and the worry of the risk of cancer forming from a weakened immune system from the Infusions and precancerous cells found during the colonoscopy.

This is truly a very misunderstood disease by the general public and not fully understood by the medical community. The most knowledgeable Doctors are the Gastroenterologists. Your regular physician cannot treat this disease. It must be treated by a specialist. I found Mayo Clinic to be absolutely thorough and knowledgeable in diagnosing and treating my disease.

There is a lot of research being done on the IBD diseases. Hopefully with enough research, there will eventually be a cure for these diseases.