Living with Crohn's Disease

**Sorry for the VERY long post. I started writing and wanted to get it all out. Hopefully you'll find it insightful or at least educational.**For the last 6 years, I have suffered with abdominal pain. After years of visits to the doctors and numerous treatments, we concluded that I had endometriosis, a reproductive related disease. About 4 years ago, I had a surgery to have the endometriosis cauterized through laparoscopic surgery (they went in through a small incision in my belly button and another small incision about 4 inches below it), the normal treatment for this. I still suffered after the surgery and decided to see a specialist in Bend, OR. Instead of cauterizing the endometriosis, he uses a method in which he cuts out the diseased areas, and can therefore remove it from all the layers. I went ahead with the surgery, despite a less than comfortable pre-op with the doctor. When I awoke, my husband and parents came back to see me in recovery. They (not the doctor) informed me that the doctor believed I had Crohn's disease. During the operation, he found no indication of endometriosis, but saw that my ileum (connection between the small and large intestine) was covered in fatty tissue, typically an indication of infection. We were all shocked at the news. While I recovered, my family sought out as much information as possible about the disease. At the end of our one week stay in a Bend hotel, I returned for yet another unpleasant visit to the doctor. His bedside manner was poor, he was very belittling, he hit my incision (with no apology), he RIPPED the tape off of my incisions (three of them this time, one in the bellybutton and two 4 inches lower), neglected to listen to my chest (essential after anesthesia), and also handed me a letter that I should have been given before the operation, stating that he didn't believe that I actually had endometriosis. I was furious. In the aftermath of everything, my husband and I talked a lot about our feelings on everything. I'll sort of sum it all up here. Regarding my original doctor/ gynecologist, I have no bitter feelings. I saw the pictures from my first surgery and there were several spots which are in line with other pictures of endometriosis. All of my symptoms were also in line with the symptoms of endometriosis. I believe that he did everything he could and put extra time into researching my condition. I still see him regularly and wouldn't want to ever switch doctors. Regarding the specialist in Bend, I was very angry at him. The letter that should have been given to me pre-op was a big issue for me. When I asked why I wasn't given the letter before my surgery, he said that he didn't feel that it was necessary. The letter did say that he believed surgery was still necessary (though I'm not sure why since he didn't think I had endometriosis). I was stunned (and crying from the physical pain he inflicted during the post-op appointment) and just left the office with unresolved feelings. Some people asked me if I was going to sue him. I do feel that he kept vital information from me that could have ultimately affected my decision to proceed with the surgery, but I'm not sure if I would have believed him since I had been dealing with endometriosis for so long. I decided not to pursue anything further. I had new problems to deal with and did not want to put any more effort into dealing with him. I do believe that he helps a lot of women, too. Adding to the already poor experience, I also got to learn what it was like dealing with a doctor who does NOT work with insurance companies. I paid $4000 (that I had been saving for a future home) up front and had to agree to pay anything that the insurance company decided not to cover. This was more than $1200--just for his services. In addition, I also paid the anesthesiologist and hospital fees, though the insurance co-pay helped to cover and there was no agreement regarding un-covered billings like with the specialist, and the one week stay in Bend as well. I have not and never will recover the expenses. I was told that I could petition my insurance company to pay more, backing it with articles about the notoriety of the doctor, but again, I had new problems to put my energy into. I have let go of all this and do not have bitter feelings that haunt me now. A month after the surgery, I sought the services of a gastroenterologist (G.I. doctor). The pictures of the ileum meant little to him as Crohn's is a disease that is diagnosed from within the intestine. My symptoms seemed inconsistent with Crohn's except for the location of the pain. Though none of us, including the doctor, thought that I had Crohn's, we decided to pursue diagnosis to at least rule it out. Diagnosis includes blood tests looking for indicators, taking laxatives in both ends prior to being knocked out to have your ass snaked with a camera (colonoscopy), and also drinking what seems like gallons of barium for moving x-rays. It was the radiologist who told me that I have Crohn's Disease. I think her exact words were "You know you have Crohn's right?" **I do explain Crohn's Disease later in this blog. Keep reading, you'll eventually get to it.** It has been quite an experience dealing with the disease. Initially, I was on an emotional roller coaster. I was angry, depressed, and self-pitying. I started a regimen of medicine and vitamins (a total of 21 pills per day) and scheduled a surgery for the summer. The medicines were Pentasa (4 pills, 3 times/day) and a Corticosteroid that I can't recall the name of right now (1 pill, 2 times/day). Steroids have some side effects that I wasn't aware of before. 1.They deprive your body of potassium, causing muscle cramps several times per day, typically at very in-opportune times. 2.They cause a sort of thrush on your tongue called "Hairy Tongue." This will go away when you stop taking it and comes off in chunks (I invested in a tongue scraper to speed the disgusting process). 3.They caused increased hair growth. As if I wasn't already dealing with enough! I began growing sideburns and back hair! It was all very light blond and not noticeable to most, but I called my parents (who were working in Oklahoma) and broke down crying. Another small investment, a 'buff naked' hair-removing buffing pad, hurried along the process of the hair falling out. I had to stop taking the steroid because there are too many side effects, including a weakened immune system, for patients to take it longer than a few months. Believe me--there was no argument on my part. After a second consultation with the surgeon who was to perform the operation over the summer (during which they remove the diseased section of intestine and reattach the two healthy parts), I cancelled my surgery. I have adjusted my diet, eating no beef, more lean meats, less greasy foods, more vegetables, and less spicy foods (DOH!). I have also since been able to reduce my Pentasa to 2 doses per day. It is often a conscious effort to keep my pain from affecting my mood. I also have to fight fatigue and make sure to eat, even when I feel bad. I do go through periods of time when I hurt more often, but I am doing pretty well for the most part. Some things that I have found out in my research: *2/3 to 3/4 of all Crohn's patients will have a related surgery in their lifetime. About 1/3 of those people will end up having multiple surgeries. The two other people that I know have had surgeries, one having just one (he is younger than me) and the other having multiple surgeries (he is in his thirties). *Crohn's affects mostly young people, beginning sometime between age 15 and 35. *It is important to be in remission and have your doctor's OK before becoming pregnant. *Stress can contribute to flare ups and pain. One of the best resources for people with Crohn's Disease (or those who just want to know more is theCrohn's and Colitis Foundation of America web page. I find it difficult to explain, so I am pasting an excerpt from their page describing what Crohn's is. What Is Crohn's Disease? "Crohn's disease is a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon. The disease is named after Dr. Burrill B. Crohn. In 1932, Dr. Crohn and two colleagues, Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, published a landmark paper describing the features of what is known today as Crohn's disease. Crohn's and a related disease, ulcerative colitis, are the two main disease categories that belong to a larger group of illnesses called inflammatory bowel disease (IBD). Because the symptoms of these two illnesses are so similar, it is sometimes difficult to establish the diagnosis definitively. In fact, approximately 10 percent of colitis cases are unable to be pinpointed as either ulcerative colitis or Crohn's disease and are called indeterminate colitis. Both illnesses do have one strong feature in common. They are marked by an abnormal response by the body's immune system. The immune system is composed of various cells and proteins. Normally, these protect the body from infection. In people with Crohn's disease, however, the immune system reacts inappropriately. Mistaking food, bacteria, and other materials in the intestine for foreign or invading substances, it launches an attack. In the process, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury. When this happens, the patient experiences the symptoms of IBD. Although Crohn's disease most commonly affects the end of the small intestine (the ileum) and the beginning of the large intestine (the colon), it may involve any part of the GI tract. In ulcerative colitis, on the other hand, the GI involvement is limited to the colon. In Crohn's disease, all layers of the intestine may be involved, and there can be normal healthy bowel in between patches of diseased bowel. In contrast, ulcerative colitis affects only the superficial layers (the mucosa) of the colon in a more even and continuous distribution, which starts at the level of the anus." No one is really sure what causes Crohn's Disease. Here is a short explanation of current beliefs from the CCFA web page: "Although considerable progress has been made in IBD research, investigators do not yet know what causes this disease. Studies indicate that the inflammation in IBD involves a complex interaction of factors: the genes the patient has inherited, the immune system, and something in the environment. Foreign substances (antigens) in the environment may be the direct cause of the inflammation, or they may stimulate the body's defenses to produce an inflammation that continues without control. Researchers believe that once the IBD patient's immune system is "turned on," it does not know how to properly "turn off" at the right time. As a result, inflammation damages the intestine and causes the symptoms of IBD. That is why the main goal of medical therapy is to help patients regulate their immune system better." So, I hope I didn't bore everyone to death. I wanted to share this information so others can have some insight into what I have experienced and to offer at least some connection to others who live with a medical problem.