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.