Sunday, November 20, 2011

My Treatment Options

I had one day to prepare for the discussion with Dr. Sigmon. My Mother and I talked quite a bit on this evening, and I prepared a list of questions that I saved on my iPhone to ensure that I didn’t forget any. At this point, I had not spent much time with Dr. Sigmon because I was primarily dealing with Tanya. I not only wanted to make sure to get the answers to all of my questions, but I also wanted to determine if he was going to be the doctor I would trust and remain with for the next several years of my life.

As I began researching Crohn’s disease, it was evident that this was not something going away in the near future. Most everything I researched calls Crohn’s an auto immune disease with no cure. It’s a very nasty disease and it increases the risk of colon cancer as well. But the symptoms are debilitating so sum, and miserable for most. All of the symptoms I had had for the past few months are what people with Crohn’s live with forever. There are bouts of remission which is managed with medication.

Ultimately, Crohn’s is a chronic inflammatory bowel disease affecting the gastrointestinal (GI) tract. The disease consists of ulcers in your intestines or bowel. The ulcers involve all layers of the intestine. In my case, I only had Crohn’s colitis, which limits the disease to the colon.  

Some of the complications of Crohn’s includes obstructions, fistulas, abscesses, perforations and hemorrhage.  The ulcers create cavities and swelling. The swelling and scarring that occurs can obstruct the intestine and inhibit proper digestion. This creates cramping, and sometimes vomiting due to food that is not able to pass through.

Fistulas can sometimes be caused by Crohn ulcers that go too deep and actual penetrate the intestinal wall. These can become infected and create abscesses. Worse yet these ulcers can tunnel through the layers of the intestine into the abdomen. Imagine all your simidigested food leaking out of your intestines into other organs. Yuck.

More common chronic issues that many Crohn’s sufferers experience are Anemia and malnutrition.  Active ulcers in our GI tract prevent proper digestion and assimilation of nutrients. Our nutrients enter our blood stream by being absorbed in our intestines. When our intestines are diseased, this doesn’t occur properly and we do not absorb nutrients properly, and therefore we will lack the iron and folic acid which is needed to produce red blood cells. Add the lack of red blood cells to blood loss due to the ulcers bleeding, and the result is Anemia.

For similar reasons, malnutrition is common among Crohn’s sufferers. Most people don’t have good diets to begin with and inflamed and ulcer ridden intestines do a poor job of assimilating nutrients. When you add the two together, it often results in malnutrition and weight loss.  Worse yet, one of the most common treatments of Crohn’s as well as other inflammatory bowel diseases is the use of steroids. Steroids cause tissue breakdown which makes the GI tract even more vulnerable in the long run. This just adds to the problem. But we’ll talk more about that later.

So this was what I researched that night I found out that I had Crohn’s. Below are all the questions I had for Dr. Sigmon:

  1. Does my diagnosis mean that my Crohn’s is only limited to my colon, and not the rest of my GI tract?
  2. Are you sure I have Crohn’s and not Ulcerative Colitis?
  3. What is the plan if I want to get off of these drugs?
  4. Will I ever feel normal again?
  5. Are there any treatments being tested that you can recommend for me to participate in?
  6. One of these drugs I’m taking is a steroid. When can I stop taking it?
  7. Can I stop taking the Flagyl and other drug that is for my upset stomach?
  8. How long until you retire?
  9. Can I live a full life with this disease?
  10. Has anyone been cured from this disease?

1.    With Crohn’s colitis, my disease is only limited to my colon. This is good news simply because it leaves the rest of my GI tract healthy which will help in digesting and assimilating nutrients. There are five types of Crohn’s disease: colitis, Ileocolitis, Ileitis, gastroduodenal and Jejunoileitis.

Ileocolitis is the most common and this affects the ileum (the canal between the small and large intestine) and the large intestine (the colon). Ileitis only affects the ileum. Gastroduodenal affects the stomach and duodenum (the part of the small intestine adjacent to the stomach). And Jejunoileitis affects the upper half of the small intestine.

2.    Dr. Sigmon was certain that I had Crohn’s and not some other form of colitis. Crohn’s is the worst of all forms of colitis so I was hopeful that there might be a slight possibility that it could have been misdiagnosed. He showed me the pictures of my ulcers and compared them to other forms, and even I could see that there was no mistake in the diagnosis. My case was severe and even a lay person could see the issue.

3.    When I asked about a plan to get off the drugs, Dr. Sigmon was at a loss for words. Ultimately, there is no plan. The treatment for Crohn’s is drugs or surgery. There are different types of drugs; some with more side effects than others, but drugs or surgery were my options. He started by giving me the gentlest treatment which was a corticosteroid called budesonide and an anti-inflammatory called mesalamine.  But the options for other treatments came with more side effects, and surgery was a last resort.

4.    When I asked if I’d ever feel normal again, he said, “That is the goal.” But realistically, most never do.

5.    All of the experimental treatments that were in the works came with more side effects and were only being recommended for people who weren’t getting relief from the more mild medications that I was on. It amazed me that the mildest treatment involved a steroid. This is one nasty disease.

6.    The only good news I seemed to hear up to this point is that the steroid only needs to be taken to control flare ups, which is how they describe all of those nasty symptoms I was having. Once the flare up was controlled, I could be weaned off of them and only take the anti-inflammatory. He didn’t want to commit to a time in which I could stop taking the steroid, but said we could consider reducing the dose depending upon how I felt and progress at the next visit, but he wanted me taking it for at least 30 days or until the next visit.

7.    The other two drugs I was taking I would be able to stop taking soon. The one for my upset stomach I could use only when I felt I needed it, and the Flagyl, which was the antibiotic, he wanted me to continue using until I completed the prescription, which was only a couple days longer. Yay:)

8.    Since everything I read about Crohn’s indicated that it was a chronic condition, I was going to need a long term partner as a doctor, and Dr. Sigmon is an elderly man that appeared close to retirement. So I had to ask how long he planned on continuing his practice. Many of my questions, not only were asked for the sake of wanting the answer, but I also needed to assess if Dr. Sigmon was the right doctor for me. He plans on working for another ten years! So I felt good about that.

9.    The Crohn’s symptoms take a toll on the body and put the individual at risk for colon cancer. When the body is living with chronic issues, the immune system and nervous system have to work hard on one issue, leaving little left to work on other issues in the body. So it is likely that life is shortened whenever there is a chronic disease.

10. When I asked if anyone has been cured of Crohn’s, Dr. Sigmon referenced one of his patients. She has had her Crohn’s in remission for years and her follow up colonoscopies show no active ulcers. Now Dr. Sigmon has been in the GI field for a very long time. He is 60 years old and the majority of his time as a doctor has been as a Gastroenterologist, and he could recall only one person that appears to have cured the ulcers. He indicated that she had done so through diet.

I spent over an hour talking with Dr. Sigmon that day. He is a wonderful caring man. We were there until the place closed, and never once did he make me feel like I was taking too much of his time. When I first arrived and he realized I had so many questions, he suggested that he send me off to get my lab work done, while he gathered some information for me.

He gave me quite a bit of information about experimental drugs, as well as other available treatments that he was not recommending at this time because the treatments were harsher and came with more side effects. But the information he was providing was meant more as educational than a suggestion for me at that time. He also gave me the latest issue of Crohn’s Advocate magazine. I was surprised to see that Dr. Sigmon himself was the “Go To” doctor in the magazine.

I was pleased with everything I experienced with Dr. Sigmon and knew at that moment that I would keep him as my Gastroenterologist and partner. I was disappointed, however, that the disease is considered pharmaceutically incurable, and that only one of his patients cured her ulcers:( But she was the one I was going to focus upon. If one person can cure the ulcers through diet, than I was certain I could too. So that was what I left with, and for those of you that know me, I’m pretty persistent and determined. That soon became my mission…

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