Traveling Preparations

Hear are some tips for traveling.

 

Time Required: 1 week before the trip

Here's How:

1. In the days before the trip, consistently follow the best schedule of meals and medications for your condition. This is not the time to try new foods or unfamiliar restaurants.
2. Contact local tourist boards or an auto club to find restrooms on your route. If you do your research far enough ahead of time, you'll have time to ask the local tourist agencies to send you maps and information in the mail (many times this information is free).
3. If there are no rest stops are on the highway, plan your route on surface streets where you are more likely to find a fast food restaurant or grocery store that has a restroom.
4. If your destination is in an unfamiliar city, obtain a good map and make a note of areas that may have public restrooms. Some good places include tourist info centers, shopping malls, department stores, hotels, and restaurants.
5. Make sure you have enough medication for the duration you're traveling, and add some extra, just in case.
6. Many public restrooms aren't clean or well-stocked. Carry a travel pack containing extra undergarments and trial sizes of toilet seat covers, wet wipes, antibacterial hand wash, extra toilet paper, and anything else you might need. If you need to make a dash for the toilet, you can just grab your bag and be off.
7. Pack a book, sewing project, crossword puzzle, or video game -- anything that will occupy you while you're a passenger in the car.
8. If you think it will help you, pack a portable toilet. It may not be useful in urban areas, but when traveling off the beaten path it could be helpful.
9. When possible, arrange your meal schedule around your trip. If you know that you have to use the toilet about an hour after a meal, leave enough time between your last meal and the start of the trip for that bathroom break.
10. Ensure that your traveling companions know that when you say you need to stop and find a restroom you mean NOW. They can also help you scout for restrooms and help explain if you need to jump to the front of the line.

Tips:

1. Does driving help keep your mind off how far the next bathroom is? Then maybe you should drive.
2. Gas stations rarely have toilets anymore. Some public places that are more likely to have easily accessible public restrooms are fast food restaurants, diners, supermarkets, department stores, discount stores, large book stores, craft stores, and bed and bath stores.
3. Places unlikely to have an easily accessible restroom include electronics stores, furniture stores, drugstores, toy stores, restaurants (other than diners), and small shops or boutiques.
4. If the worst happens, politely ask to use the available facilities and explain that you have a serious medical condition.

What You Need

• Maps of the areas you're traveling
• Wet wipes, tissues, or toilet paper
• Hand sanitizer
• More than enough medications or medical supplies
• Portable toilet (optional)
• Sympathetic traveling companion
• Hobby or book to keep you occupied

Amber Tresca

Interesting Article by Amber Tresca on Colonoscopies

I subscribe to Amber Tressca's News Letter and from time to time post her articles here. This is a good article for those wanting information about the procedure. A colonoscopy is an effective test used in diagnosing inflammatory bowel disease (IBD), irritable bowel syndrome (IBS), and other digestive disorders. A gastroenterologist (a specialist in digestive disease) or a colorectal surgeon should perform the test. A long, flexible tube with a light and a camera on the end is inserted into the anus, and guided through the large intestine.In the days before having a colonoscopy, a patient must clean their colon of all waste materials. Doctors may prescribe different techniques for different patients. For example, a patient with severe diarrhea may not need as much prep as a person with a healthier bowel. Common methods include drinking a solution to stimulate the bowel, laxatives, and enemas. By following the doctors' instructions correctly, the large intestine will be clean and free of waste so problems can be more easily seen and diagnosed.Patients are sedated during the procedure (this is an important point to discuss beforehand with the doctor performing the test) through an IV. The doctor may also use a heart monitor, oxygen, and other monitoring equipment to ensure the safety and comfort of the patient. The entire procedure commonly takes about 30 minutes. The doctor may take some biopsies, a small sample of tissue that will be sent to a pathologist for testing to ensure an accurate diagnosis.After the colonoscopy, patients are monitored for another period of time to reverse the sedation and make sure no complications have occurred. Because the colonoscope introduces air into the colon, there will be some bloating that will be relieved by passing gas. Patients should arrange to have someone drive them home from the procedure, as they will be quite groggy. This person can also remember any further instructions given by the medical staff.A few days after the procedure, patients will meet again with the doctor to discuss the findings. The results of the biopsies will be available at this time.No, having a colonoscopy is not what anyone would consider "fun." It is, however, a useful diagnostic test. Without it, those of us with digestive problems might never get an accurate diagnosis or effective treatment.

TIPS FOR CHOOSING THE RIGHT DOCTOR FOR YOU

Let me start by apologizing for not updating for a couple of weeks. I have been busy creating a new design for this blog and helping a friend create a new website for his auto repair business.

I have an appointment on 6-18-2012 for a new CT Scan and an appointment with my GI Sanadra Kane at Mayo Clinic Rochester, MN.

This article is about selecting the right GI for you. I have heard form many patients on the ButtBook Forum (GI Monitor) that they are unhappy with their GI or are switching or considering switching to a different GI.

Choosing the right GI can be challenging. Many patients feel they just don’t have a choice in doctors. Some patients feel helpless or don’t know what to do.

I have learned first hand that you do have a choice and and that it is up to me to make sure I have the best care possible.

Clearly, the doctor that you choose will have a direct impact on how well you do,  especially when you need treatment for a complex gastrointestinal condition. This will be an important relationship in your life so it's worth investing some time and energy into finding the right doctor.

RESEARCH

With a little research and effort you can find the right doctor for you.

Get the names of several doctors and hospitals that offer the newest, most effective treatments as well as clinical trials that compare the latest drugs with experimental drugs, which may provide even better results.

Ask you General Practioner for information regarding your disease. The willingness of providers to give you as much information as possible is a good sign. It shows that they are dedicated to maintaining and improving their quality and responsiveness to patients, and that they are confident in their capabilities.

One source of information that many people do not take advantage of is your insurance company.  It’s a good idea to call both your insurance company and the doctor’s office to confirm that your health plan will cover the doctor’s services. For instance, you might ask your insurance company for recommendations of specialists who are in your network

Check with "local universities and medical schools, especially if they specialize" in inflammatory bowel disorders such as Crohn's disease. Ideally, the same name or names should come up from different sources.

Look for a gastroenterologist who is board certified by the American Board of Internal Medicine, the organization responsible for certifying subspecialists in internal medicine. Board-certified gastroenterologists, for instance, have spent a certain number of hours practicing endoscopy, a type of diagnostic test essential in diagnosing Crohn’s disease. Other sources such as The American College of Gastroenterology, The American Gastroenterological Association, The Crohn’s and Colitis Foundation of American are all good sources for a selection of doctors in your area.

Your disease management will likely involve more than just your gastroenterologist, so it’s essential that you feel comfortable with the other health care providers on your medical team. Your primary care doctor might still treat you for non-Crohn’s related issues and may coordinate referrals, depending on your insurance. Nurses and the support staff will play a major role as well. Depending on your treatment needs, you might need to see a registered dietician, a mental health counselor, or a colorectal surgeon. Coordination and communication between different medical professionals involved in your care is extremely important, so ask who will be taking the lead role in making this group a high-quality team

Choosing a qualified and competent medical team is important, but at the end of the day you’re the one living with Crohn's. It is important to educate yourself as much as possible. “the Crohn’s & Colitis Foundation of America Web site is a good resource to find out about new developments in IBD research.”

GETTING COZY

When you have done your research and think you have found the right doctor, you need to remember this is your care and you and your GI are going to have a long term relationship.

You need to feel comfortable, safe, secure and confident that this is the right doctor for you.

The Crohn’s & Colitis Foundation of America recommends writing down your questions before your appointment/consultation, to ensure you don’t forget to ask something you particularly need to know. Take a pen and paper with you on your visit so you can write down the doctor’s answers and review them later.

The way in which the doctor interacts with you on a personal level should put you at ease, not make you feel more stressed about your condition. It is especially important to choose a doctor you can easily talk with openly and honestly.

Do I feel comfortable with this doctor? Am I satisfied with his or her answers to the questions I asked? Was I seen on time when I arrived for the consultation? Was the office staff helpful, knowledgeable, and friendly? All the little issues that you’d consider when choosing your primary care physician are just as important when choosing a specialist to work with you on managing your disease.

Choosing the right doctor is essential and important relationship in your life so it's worth investing some time and energy into finding the right doctor.

Personal Update

I spent Last Tuesday through Thursday in Saint Mary's Hospital in Rochester, Minnesota.
I had abdominal pains so terrible I was actually in tears. I was making trips to the bathroom about 10 times a day with slight blood.
All the lab test came back normal other than a slightly elevated White Blood Cell Count indicating some infection.

I went into surgery for operation on a new fistula. I returned home on Thursday but still not pain free.
Friday I went in for a Remicade infusion. My infusions have been changed from every 8 week to every 6 weeks. I am back on Prednisone at 20mg for 1 week and taper each week by 5 mg. Also taking Tramadol, Flagyl and Cipro again.

I recieved the lecture on being a smoker and will be starting Nicotrol in the next day in order to take smoking out of the equation.

I have a followup CT Scan and GI appointment on the 18th.

INFORMATION ABOUT FMLA AND DISABILITY BENEFITS

            When I was first diagnosed with Crohn’s Disease, I ended up in the hospital for 6 days. After being released from the hospital I was off work for almost 5 months.

            This was a big concern for me as I thought I would surely lose my job due to my illness and I was concerned about loss of income since I live paycheck to paycheck in todays economy. I contacted my company HR Manager to discuss what was going to happen if I was out for an extended period of time with my illness.

            I contacted him when I was admitted to the hospital and stayed in touch with him and my manager. The HR Manager provided paperwork for FMLA (Family Medical Leave of Absence).

            The federal government has enacted a law that requires employers to maintain your medical insurance for 12 weeks; however the employee must pay his/ her portion of the non company contribution. For example if my company pays out $200 per month and I pay $50 per month, I am still responsible for my $50 contribution. Some companies will cover the employee contribution if the company policy states as such. My company policy allowed me to go into arrears while I was off work. If your company does not have this policy, you will need to make those monthly payments or risk losing your coverage. Laws vary state to state so be sure you know your state laws.

            Federal law also requires the employer to hold a position in the company for the employee for the 12 weeks. Your position is not guaranteed but A position is held for you.

My company also offered Short Term Disability which was also 12 weeks of benefits at 60% of my monthly pay and I requested 30% of that to be withheld for taxes. You must pay taxes on the STD benefits and Long term Disability Benefits.

The FMLA paperwork should be completed by you and your attending Physician in addition to the Short Term Disability paperwork required by the STD Insurance company. Your STD paperwork can be submitted by you directly and in some cases through your HR department. My HR Manager had me submit my own paperwork after each Doctor visit to the Insurance Company and copied him on the same paperwork.

It is a good idea to copy your HR department for sake of good communication, respect and understanding of your medical status. The company cannot REQUIRE you to provide the information due to Federal Privacy of Information Act.

What do you do when the 12 weeks FMLA and Short Term Disability Benefits run out and you are still ill?

Before that time if you know that your illness will keep you out longer than 12 weeks, you should apply for Long Term Disability if your company has offered it or if you elected to take LTD. Not all companies will provide LTD. My company did not however I elected to subscribe to the policy.

The sooner you can notify the insurance company the smoother the transition will be from STD to LTD. In some cases LTD can take up to 45 days to be approved or disapproved. In most cases of Crohn’s and Inflammatory Bowel Diseases, the application will be approved. Check your company policy and know your benefits to avoid as much financial hardship or delays as you can.

Please share your experience about your company policies, state laws and how you managed to find your way through these benefits.

PERSONAL UPDATE

I was just released from Saint Mary's Hospital in Rochester, Minnesota after having a fistulotomy.

I had an active fistula that needed to be opened up after 1,5 weeks of abdominal pain and bathroom trips up to 10 times per day.

The Remicade Infusions were supposed to induce remission and hold the fistulas in Check.

Blood Work has been sent in to evaluate the effectiveness of the Remicade on my system The results will take about 10 days.

The Gastroenterologist at Mayo Clinic is increasing the frequency of the infusions from every 8 weeks to every 6 weeks. In addition I will be going back on Prednisone for several weeks. 20 mg/ day for 1 week, 15 mg/ day 1 week, 10 mg/ day 1 week and 5 mg/ day 1 week.

I will follow up with my GI on the 18th after going in for either a CT Scan or Colonoscopy.

Just another experience with good ole Crohn's disease.

Bob

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.
.
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.