The Story of My Life With Crohn's Disease Page 2

After finally being officially "diagnosed" with Crohn disease, my doctor started me off by putting me on high doses of steroids (prednisone/60mg). He then put me on a strict diet (low fiber and ruffage foods with nothing too spicy or greasy). Little did I know at the time what THAT stuff (the prednisone) was going to do to me! My mother also made sure NOT to tell me what would happen to me as a result of taking the prednisone (even though she knew)! I suppose that she was aware of the fact that with me being a very self-conscious teenager, I wouldn't have taken the medication had known about all of the unpleasant side effects associated with it. In addition to the steroids, my physician had me start taking multi-vitamins, iron (feosol), and folic acid tablets daily. Afterwards he put me on Azulfadine, which is a sulfa drug. I found out several years later that the sulfa never did a THING for me. Apparently it only helps those who have disease in their lower intestines (because of the way that it is dissolved. Mine was affecting the small bowel, and where the small and large bowel joined (ileum). As I was saying.... I was started out on high doses of steroids. The first thing that I began to notice was my appetite increasing dramatically--even while I was still in the hospital! I used to call the nurses to my room in the middle of the night asking them for a "midnight snack". LOL :-D I began getting "hot flashes", my cheeks got red a lot, my face also began to fill out (quite a bit!). I started experiencing heart pounding and palpations, severe acne (severe for me), night sweats, insomnia, moodiness, anxiety and restlessness (to name a few things). I gained a total of about 10 lbs. or so during that first course of treatment. I looked like a Cabbage Patch Kid!!! My cheeks eventually got so large and stretched out that my face actually HURT! My cheeks used to literally shine from being stretched so much. To this day, I still have stretch marks on my body from my first encounter with steroids! Needless to say, I
found out rather quickly that SOMETHING was not right. I just felt too "strange". I was eventually told about the side effects of the drug I was on (as if by this time I didn't already kinda' figure that out!) I was warned NOT to miss any doses or stop taking my medication for ANY reason without the doctors direction. I was even told that I could go into a coma if I were to suddenly STOP taking it. I was under the close supervision of my doctor at that time.
During this period, I wasn't able to attend school, because my doctor didn't want me to be exposed to all of the various "germs" out there. He was concerned about my weakened immune system (as a result of the intense steroid therapy). I had already missed a lot of school due to being ill, but this time I was assigned a private tutor (by the government), who came to our home to teach me. I managed to pass ninth and tenth grade--I even made it on the honor roll those years! Eleventh grade was a different story. I continued to miss school, but was no longer eligible to receive free tutoring by the state. My parent's could not afford to hire a tutor, so I ended up having to repeat the grade. I dropped out of school the following year and got my G.E.D. (not something I would personally recommended to anyone, but at the time it seemed like the "thing" for me to do). This story could easily be a book! I'm going to have to try to shorten it and only hit the "highlights". How do I do that? Basically, life as a teenager was "hell" for me (at least it was from my point-of-view at that time). Here I was a 'teenager', and I was hiding out in my bedroom or staying at home. I didn't want anyone to see me. I didn't want to have to explain one more time "WHY" I missed school or explain exactly "WHAT" was wrong with me. I felt so abnormal! I thought I was so fat and ugly because of the weight, chipmunk cheeks, and acne I had due to the steroids. I was supposed to be finding out "who" I was, and I did NOT like what I was finding! I now know that Crohn's is not WHO I am, it's just something that I have to deal with. At that time, it was hard for me to differentiate between the two things. I stayed on high doses of steroids for several months after that (until I weaned myself off of them without my doctor or mother's knowledge--I DON'T recommend that either, but I was young AND desperate!). I have been battling flare-ups since that time. Some incidents have been worse than others. Basically, I had a two-year remission from 1987-1990. I say "remission", but actually I still had some "less significant" flare-ups when stress levels mounted, I failed to get proper rest, or my personal diet restrictions were ignored (by my own choice of course!).
In 1991, shortly after my second daughter's birth, and during the process of going through a difficult divorce, I had begun to get extremely sick. I'm sure that an accumulation of factors contributed to the acute flare-up I experienced at that time. It started with me being diagnosed with gallstones during my 2nd pregnancy. After delivery, everything went crazy for me! I ended up having emergency gallbladder surgery to have my gallbladder removed. Unfortunately, because of the circumstances, I had to have it done the "old fashioned" way!. I've got a six-inch, vertical scar to remember THAT! I was only nine-weeks postpartum (9 wks since giving birth to my daughter) at the time and lactating (breast-feeding). My doctor (surgeon) basically forced me to stop breast-feeding because of the Flagyl that he had me taking. He told me that if I refused to take the Flagyl, he would no longer see me as a patient. Even though I have now forgiven him, I still feel a bit of resentment about that fact to this day. I regret that I was forced to break the special bond that I had with my child before I was ready to.
I had been enrolled and was ready to start my first semester at a local community college right before all of this happened. I was planning to go to school to become a physical therapist assistant. I guess that God had other plans for me. I was forced to drop out of college because I was so sick between CD complicated with the diagnosis of, acute billiary cholecystitis (gallstones). I needed to have surgery and it wasn't optional anymore. About three to four weeks after having the surgery, I found myself back in the hospital with nausea and pain. Apparently the operation had aggravated the Crohn disease even more. I was diagnosed as having a Crohn disease flare-up, put on another round of prednisone (steroids) and sent on my way. The surgeon also suggested that I may have been suffering from a partial bowel obstruction due to adhesions in my abdomen as a result of the prior surgery.
In July of 1991, I re-enrolled in college. I was trying to go to school full-time and be 'Mommy and a Daddy' to my daughters at the same time too. I was doing all of this while going through one of the worst flare-ups in my life! I got SO sick that I stayed on the couch anytime I wasn't doing something that absolutely HAD to be done. I almost passed out while driving on several occasions because I had gotten so weak from the continual diarrhea and vomiting.
I lived in almost constant pain. I weighed in at 98 lbs. soaking wet. My skin was whiter than white (probably even see through!) At times I wasn't even able to take care of my own children! I remember days when I had to miss school because I was so deathly ill. I would lie on the couch, feeling helpless. I had no energy and constant pain. The only time I would get up is to RUN to the bathroom (and HOPE I'd make it upstairs in time!). I was throwing up or nauseous on a continual basis, and I had exhaustingly endless chronic diarrhea!

My "babies" (my girls are 15 months apart) were basically left to "occupy" themselves in their play pen with their toys. Their diapers didn't get changed for several hours at a time. It was ALL I could do just to get them a bottle or some food. I felt like the world's worst mother, but I had no one there to help me at that time. I was all alone and it seemed that no one cared. Those were some pretty rough times for me. I look back on them now, and I am SO very glad that they are over with. I have battled pain and other symptoms and complications of Crohn disease since then, and none quite compare to that time. The worst part about that particular time in my life, was all of the "other" things that I was dealing with emotionally as well as physically (dealing with a recent divorce, trying to get a "real" education so I would be able to provide for' my family' (I got absolutely NO support from the girl's father whatsoever), being deserted by all of my "so-called friends", staying sick, failing school because of staying sick, feeling like a complete failure as a mother and student, my family being literally a thousand miles away, problems with my ex-husband.......I could go on! Needless to say, I battled suicidal thoughts constantly and was so very desperate for answers and help. If it weren't for my two beautiful daughters, Alyssa and Shannon, I might not even be here today. I knew that they needed their "Mommy", even if I wasn't everything that I thought a "Mommy" should be. So, I finally moved to another state after my parents came and got (rescued) me. My health was in a sadly deteriorated condition. Things had gone too far for me. I was nothing but skin and bones. I wasn't able to do very much at all without becoming completely exhausted. I had refused to take prednisone up until that point (mostly because of having such bad experiences with it in the past). I truly believed and thought that I was "dying". Shortly after moving to Alabama, I ended up at an emergency care facility to be treated. This was over the Christmas holidays. I was really sick! They couldn't even find my blood pressure! I said, "Maybe I'm dead and don't even realize it" LOL Eventually I got referred to a physician and got on some prednisone at that time, but it took literally MONTHS before things even began to stabilize for me.