Sunday, June 17, 2012


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.


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.”


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.

Monday, June 4, 2012

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.

Saturday, June 2, 2012


            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.

Friday, June 1, 2012


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.