In retrospect, we know that I had been sick for a while.
I was a very tired, sleepy child, and frequently had heartburn and stomach pain. Of course, my mother had never heard of crohns disease, and so she figured that the pain I was complaining of was either psychosomatic, or a result of the amount of stress I routinely dealt with. When I was sixteen, I had what we now know was a crohns attack; we were told, at the time, that it was just a bout of food poisoning – despite the rectal bleeding.
Then, a couple of years after my first daughter was born I noticed blood in my stool. I spent the next couple of weeks watching, and I noticed that I was bleeding daily. At first, I thought I had an ulcer, or something else stress related; my marriage was on the rocks, so an ulcer would not have been totally out of the realm of possibility. My current doctor recently retired, so I went and saw a new doctor and told her what was going on. She ran a couple of tests that were ‘inconclusive’, and then told me that my symptoms were all in my head. While I could go for pain being in my head, blood is not something you can make up; it is either there or it is not.
I made an appointment with another doctor,
but before I saw her, I discovered I was pregnant; nothing could be done because I was pregnant, and any and all tests involved the use of some sort of x-ray machine, and therefore was unsafe. I was not too concerned, after all – I thought it was just an ulcer.
My pregnancy with my daughter was difficult, but pregnancies for me always are. I was exhausted, my bleeding was getting worse, and I was not gaining any weight – in fact, I gained a total of two pounds the whole pregnancy. More obnoxious, on a day-to-day level, was the raging abscesses that no amount of antibiotics seemed to get rid of. Luckily, my daughter was born, healthy and heart, a month early at a whopping eight pounds, 1 ounce (if I had carried her to term she would have probably been between twelve and thirteen pounds). At my two-week checkup, after having Beth, we discovered I had lost a total of 35 pounds during my pregnancy. I planned to make another appointment with my primary, but then the bleeding stopped, so I did not.
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- Crohn's Disease - National Digestive Diseases Information Clearinghouse
Provides general information on what Crohn's disease is and how it develops. Describes symptoms, diagnosis, potential complications, and treatment.
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The Crohn's and Colitis Foundation of America is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. It was founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Mod
Two months passed,
during which things seemed to be doing well. I was not bleeding, I was active, and my daughters were doing great. Then there was the terrorist attack of 9/11 – shortly after my husband was laid off, and I was called to testify in a court case against the truck driving company that had hit my stepdad’s truck. A week later, the blood reappeared, along with persistent nausea. I figured that it was the flu, and went to bed for what I thought might be a couple of days. A week later, I was heavily bleeding and had become so weak I could not walk from one room to the other without falling. I could not keep any food down, and liquids were a struggle. My husband took me to my primary, who told me I had the flu, come back in a week if I was not better. She also said the bleeding was from postpartum hemorrhoids, and not to worry. A week later, we were back in her office, and she said the same thing. A week later, and then a week after that, she said the same thing each time. We were getting frustrated.
FINALLY, she referred me to a gastroenterologist. She was rather defiant about the referral, almost as if I was going to regret making her give me a referral, but that is what I get for nagging her about minor problems like the flu. Personally, I was thrilled. I explained to the woman who made the appointments what was going on, and the doctor squeezed me in two days later; he scheduled me for a colonoscopy within 24 hours. I can tell you from experience that colonoscopies, in themselves, are not that bad – the doctor gives you something so that you sleep right through them; it is the preparation for colonoscopies that are awful. I was told to mix my prep (an evil substance called go-lightly) with 7-up. I do not drink 7-up anymore – it tastes like go-lightly to me. The colonoscopy went well, and I woke up to a quiet room. My nurse came in and told me that I had what they call a ‘very ticked off colon’. They had not been able to get the scope very far, because I was nearly swollen shut, but we found out later that my entire colon was ulcerated and infected (which explained the constant infections when I was pregnant).
Then the nurse told me, very fiercely, “You don’t let them take your colon. Do you hear me? You don’t let them.” I just stared at her, because I still did not know what was wrong. Then my doctor came in, handed me three prescriptions, and said, “You have crohns disease. Make another appointment in a week, and start taking these.” He left the room and my husband said, “What’s crohns disease?” I just shrugged my shoulders. Then the nurse came back in, reinforced her original message - my husband and I still did not know what crohns disease was; thank God for Google.
You would think that things got better after this, right? WRONG! The prescriptions written for me were for an antibiotic designed to work directly on your colon, an anti-inflammatory designed for the colon, and an autoimmune suppressant. For the layman, with crohns disease your autoimmune system is what kills germs and the like, the idea is to make my immune system weak enough that it can’t attack my colon. Then, my insurance informed me that they would not pay for anymore GI appointments, so I had to return to my primary for my care. Nevertheless, I was not getting better. Finally, on the advice of my old doctor (who is also a family friend), I went in and made my doctor take some blood to check my hemoglobin. Hemoglobin and hematocrit (sometimes called h&h) are usually taken during any routine blood test; your hemoglobin is the measure of an oxygen carrying protein in your red blood cells, and hematocrit is the measure of blood you have, totaled. Either way, my doctor took the test, but was rather snippy about it … that is, until later that night. The blood test was taken around 2pm. Six hours later, she called me at my home because the lab had called her at her home. I do not remember what my hematocrit was, just that it was low. I do know that my hemoglobin was six (the average for an adult woman is 12). My doctor was so shook up that she did not remember to block her phone number, and she did not bother to greet me. She said, “This is Dr. ---, I just got a call from the pharmacy, I am admitting you to the hospital now for blood transfusions. Go in - they’re expecting you.”
I was admitted to the hospital that night to begin the transfusions, and I was taken off the autoimmune suppressants; it turned out I was too sick for autoimmune suppressants. Plus, the bit of tissue they had taken during the colonoscopy was not healing and I was, quite literally, bleeding to death. To speed healing, and save my life, they put me on what I call Satan’s-Little-Tic-Tac’s – they call it prednisone. I also received three units of blood, and that did not even replace my blood volume to where they wanted it to be. However, it was Christmas, so they let me go home.
Why do I share this? Because with the number of people in this world who have either crohns disease or ulcerative colitis it’s AMAZING how few people have ever heard of it. Crohns Disease and UC are autoimmune disorders similar to MS, lupus, and rheumatoid arthritis, but in our case, our immune systems are attacking our colons and/or small intestines. While large majorities of us are underweight, because of malnourishment, not all of us are. People who have in the past suffered from malnourishment (I have lost up to seventy pounds in a two-week period) are quite often fat because our metabolisms are permanently damaged. Not to mention the damage that prednisone does to you – the last time I was on prednisone I gained 75 pounds, and I cannot seem to lose it.
I have also learned that the definition of ‘well’ and ‘healthy’ is fluid and depends on the person you are talking with. A good day, for me, is a day when I do not need a nap and I do not have to go to the bathroom more than six times in a day. I am doing ‘well’, but it has been a long road. Many of the drugs given to people with crohns disease did not work for me, or I developed allergies to them. I am currently on a medication, called cymzia, that has to be injected into my stomach once a month and it works better than anything I have ever taken before, and I do not break out in hives when I take it – always a plus.