These are my experiences and although you may have similar ones, do not expect this all to happen to you or your loved one. Each case is different and requires the attention of a specialist, but I'll be happy to answer questions about myself or just talk.

Tuesday, May 16, 2006

September 1996: The First Hospital Stay

The beginning of my sophomore year was rough. I was in school for a few weeks before I had my first major flare-up and with the flare-up came pain and a lot of rushing to the bathroom. I don’t tend to have a big issue with pain or cramps. The only times I appear to really take notice is when things get really bad and I’m on the verge of hospitalization. I spent about a week at home, staying in constant contact with my doctor, and at the end of the week I was going nearly every 30 minutes, my Asacol pills were passing through whole, and I was throwing up. My intestines were so swollen from inflammation that very little was getting through and every time I tried to eat it had no where to go but back up. I was about six feet tall and weighed only 120 pounds. I was pretty thin before the flare-up, but not being able to keep anything down was making my body look like those poor Ethiopian kids without the distended stomachs. My doctor left the decision of staying in the hospital up to me. Seeing as how things just seemed to get worse as each day passed I thought it was the best thing to do. When I made the decision though, I was told I’d be there for a week at the most. I was in there for three weeks, maybe a month. I say a month, my parents said three weeks, but this was all much later after I had been released and dates were confused on both sides.

Since that first stay, each time I was in the hospital after that I pushed to get out as fast as I could. Living in a hospital is pretty depressing. You’re sleeping in a strange place that smells like disinfectant, I was sharing my room with little kids since I was in the pediatrics department (not that adults are much better), and I was constantly being poked and prodded to see how I was doing. Every four or six hours I had my blood drawn and sent to the lab. It’s hard to try and rest and recuperate when you can’t feel comfortable with your surroundings and you’re being woken up to have a needle jabbed into your arm. I had to have a number of IVs put in after my veins started to give up after a few days and each site would become painful. (I can still some scars from all the different IVs I’ve had and blood draws over the years.) Then dealing with little kids crying in the bed next to you for one reason or another just gets on your nerves.

While in the hospital I was put on a complete bowel rest. I started taking Imuran along with the Asacol and was given the option to start Prednisone, but with all the side effects I was told of I declined and waited to see what would happen. I was given IV fluids and lipids and the only time I was able to drink anything was when I had to take my pills three times a day. I got a look at the hospital food the first day I was there and I didn’t feel I was missing much. Besides, I had no appetite so it just made it all the easier for a while.

After a few weeks things seemed like they were getting better, it was hard to tell since nothing was going in but the bleeding appeared to slow down, so my doctor let me eat for a day. At that point I didn’t care what I was eating I was just glad to chew on anything. The next day though, it looked like things weren’t doing as well as everyone had hoped and I was off of the food again, but this time I was on a liquid diet. Broth, Jell-O and a popsicle for breakfast, lunch, and dinner. The doctor thought it would be better for my guts to have something to work on other than its self. It was also decided upon that if I was going to see any improvement I had to start on IV steroids. Things were just taking much too long and if there were any signs of improvement, they were so minute that it would have taken many months before I saw any serious improvement if any at all.

After three weeks, maybe a month as I said earlier, I was sent home. I really can’t recall if it was because I was showing signs of improvement or my parents and I were able to convince the doctor that I might actually do better if I was back at home. That entire time I was in the hospital I was so depressed with the situation and just going through this ordeal that the only times I left my room was for more tests and I was dragged outside once by some family members. I just wanted to rot in that uncomfortable bed with the plastic sheets. I showered once or twice that entire time too. I just really did not care about my appearance or what happened at that point. There were many nights where I would just cry and ask myself, “How and why did this all happen to me?”

But I got through my first hospitalization and was sent home on IV fluids and lipids, still no food but the liquid diet was still in effect. I had a pic-line IV put in to the major vein at the bend of my left arm, they are more of a long-term IV. But just like everything else I had dealt with in trying to treat this disease, there was a problem with it. The IV was supposed to be threaded up through the vein and to get as close to my heart as possible so it was easier for the thick lipids to be pumped to the rest of my body. It only made it up to my armpit though. When I was sent home I was supplied with an IV pump that I would be connected to overnight so I’d be free to roam about during the day without. The first night I tried the pump it kept beeping all night long. Apparently the tubing of the IV was getting kinked up around my armpit and the lipids were not passing through. The only way I could keep the alarm on the pump from going off was to sleep flat on my back with my arm out to my side to keep the vein as open as possible. This only lasted one night though. The next day I was on the phone with my doctor relaying the story of the previous night and I was allowed to switch to an “elemental diet.” The elemental diet consists of drinking nine cans of a drink that was very similar to Ensure. I had tried it in the hospital and found it very foul tasting. They even gave me some flavor packets to try and sweeten it up, but the after taste was what really got to me. It was similar to the taste you get when you leave a vitamin sitting on your tongue for too long. That’s basically what the drink was anyway, a bunch of vitamins, minerals, and nutrients in an easy-to-digest form. After getting used to this new routine with the elemental diet, taking care of my IV since I was still on IV steroids, and getting my strength back from laying in a bed for nearly a month I began to make the transition back into school.

Friday, May 05, 2006

January 29, 1996: Diagnosis

The only reason I remember this date is because it was the day after the Super Bowl. I’m not a real big sports fan and the big reason I like the Super Bowl is because it’s probably the second biggest food day of the year behind Thanksgiving. For those of you unfamiliar with the process in preparing for a colonoscopy (Recall from the previous post that I left off at being told I’d need to have a colonoscopy to figure out what was wrong with me.) it requires that the day before you do not eat solid foods. Complete liquid diet for a day, sometimes longer depending on the doctor’s orders, and then at the end of the day a complete flush of the system with laxatives to make sure everything is out of there. And it’s not just a laxative; it’s a whole helluva lot of ‘em. I felt like my brain was going to come out of my butt I was going so much. Like my body was going to collapse in on itself. I wish I could say that the first time is the roughest, but there was another time where I nearly passed out from dehydration. I can’t remember exactly when because I’ve had quite a few colonoscopies so I’m mentioning it here. These two times were by far the worst though, and I’ve, unfortunately, gotten used to the routine.

That night before I was very nervous, but was able to sleep because I was so exhausted from having nothing in my system thanks to the big evacuation of my guts I had to endure. That morning I was still nervous, but much too drained to fidget or appear so in any other way. I sat around for what seemed like an eternity before I was wheeled into the room where the procedure would take place. This was also my first experience with anesthetic and I thought it was kind of fun. When they told me to count backwards from ten and I could feel it kicking in and my tongue started to feel like a foreign object. I wanted to laugh but couldn’t because I was already asleep. I would have had no idea what had happened in that room if it weren’t for what I’m about to explain next.

Now, before I had been wheeled into the room I might have gotten an explanation of what exactly was going to happen, but I was too tired to pay attention. I wish I had remembered a little bit of it because that might have prepared me for what to expect when I woke up during the middle of it. I’ll level with you, there is a damn good reason as to why they put you under when they perform a colonoscopy and it’s not because it helps to put you at ease for when they’re staring at your butt and shoving a fiber-optic camera up there. It’s because it hurts. A lot. The camera is small enough in diameter to fit in there, but in order for anything to show up on screen they need to open everything up a little bit. In order to do that air gets pumped into you. Normally you wouldn’t know this happened and you’d wake up a little sore, and you’d probably be farting a lot just to get rid of it all. For some reason though, I woke up. I’m not sure if my body just doesn’t react to it as long as others my size or if I wasn’t given enough to begin with, but this wasn’t the only time I woke up during the middle of a ‘scope’ and I’ve told them I’ve woken up before and then never seem to believe me until I actually become alert as they’re all staring intently at the monitor.

Back to the procedure. So, they inflate your guts like they’re getting ready to make balloon animals out of you. I’m going to try to explain a bit better just how much it hurt when I woke up, I don’t want to scare anyone out of having a colonoscopy but it’d give you a good idea of what to expect in case you become aware of what’s going on like myself. Imagine the worst gas you’ve ever had. Not gas that was particularly odorous, but hurt and you wanted to get it out as fast as you could. Now multiply that by a thousand and that’s about right. The only problem is that you can’t burp or fart it out because the camera is blocking up the only exit. While looking around in there, they will also most likely take biopsies of polyps or anything out of the ordinary and run some tests on it. I’ve been awake for some of those too, and it doesn’t hurt (I’m not sure but I don’t think there are any nerve endings in your guts so you can’t feel it anyway) it just feels weird. I could actually feel them tugging on my insides and that just isn’t normal no matter how you look at it. I’m not sure which part of me was feeling it, but I swear I felt it. I guess I should mention that after they realized that I was awake and wasn’t going to stop repeating, “I’M AWAKE!” they knocked me out again and the next thing I knew I was out in the recovery area.

Having just come out of the anesthetic I didn’t get much out of the conversations that I had with my doctor, the nurses or my parents. I was shown some images of my innards. I had no idea what a healthy colon was supposed to look like, so I took the doctor’s word for it when they said what I was looking at was unhealthy. There were some spots that looked like they were bleeding and a lot of polyps and I’d never known that it wasn’t normal if I wasn’t told that day. I know I was told that it looked like I had Crohn’s disease because the inflammation wasn’t consistent like it is for colitis, but the doctor wasn’t entirely positive which one it was. I can’t remember if I was glad or not that I didn’t hear anything resembling the words “tumor” or “cancer” from that conversation. I had no idea what Crohn’s disease was and the just hearing that I would have this for the rest of my life knocked me on my ass. At least with cancer it was possible to be rid of it. Since I was having trouble following the conversation to begin with, once I had focused on the words “disease” and “rest of my life” I didn’t take much more in. It wasn’t until I had gotten home and read some of the stuff I was given that I found out that it’s possible to live a pretty normal life if you have Crohn’s or colitis.

Anyway, that day I was given my first medication, Asacol. It took a while, but after a few months of being on the pills the blood and diarrhea went away. But, if that was the end of my story, this would be a pretty crappy blog now wouldn’t it?

Friday, April 28, 2006

It Begins With Symptoms: 1994-1995

The exact date when I first started to show signs of Crohn’s disease is uncertain, but I do know it happened sometime during my 8th grade year, I was 13 years old. The only reason I remember having symptoms back at that time is because I was worried about having an accident at school, and being in a building with unmerciful adolescents is not the place to have diarrhea. I was having a hard enough time trying to not be labeled as a dork for wearing glasses, being lanky, and smart. I sure as hell didn’t need people to know that I was having chronic diarrhea problems. From fear of people finding out and the possibility of having accidents, I stayed home a lot. Not so much from school, but I avoided hanging out with friends. I missed out on a lot of things that I shouldn’t have because I was living in fear of what might happen. I regret that a lot and this won’t be the only time I let Crohn’s get in the way of living my life. I’ll get to those times when they come up, though.

The diarrhea was the first symptom that I ever had. When it first started I just took some Pepto Bismol, Imodium or a similar anti-diarrhea product and that seemed to help for a day. At least, it did at first. After awhile the diarrhea would come back sooner and I was taking more and more. During this time I was keeping it quiet from everyone I could. I was a very private person, still am to this day believe it or not, and really didn’t want anyone to think there was something wrong with me. More importantly, I didn’t want to know something was wrong with me. The only reason my family found out about my stomach problems was because the medicine was going so fast. I can’t remember how many times I was going a day back then, but I do know that I was able to get through the school day without having to use the restrooms there. The ride home on the bus wasn’t very comfortable, but I was able to make it home nonetheless.

Towards the end of that school year I might have started having some slight pains. Again, that was a little over a decade ago as I’m writing this so I’m really not sure. What I DO know is that blood started to appear in my stool before the year was up. I know this because I was tempted to ask a biology teacher about it. Not flat out, just one of those, “I have a friend…” questions that no one believes. I didn’t do it though because I could never think of a good way to phrase the question. Anyway, the first few times I saw the blood it was a small amount each time and I wasn’t sure if what I was seeing was blood or not. Then when I realized what it was and that it wasn’t going away I panicked. I quickly ruled out that it could possibly be the beginning of my transformation into a young woman because I have a Y chromosome and that just doesn’t happen for those with that special set of genes. So the first thing that came to mind was cancer. The big C. And although I was smart enough not to ask that teacher one of those “I have a friend…” questions, I was dumb enough to keep this a secret like I did with the diarrhea problem. I really didn’t want to know if something was wrong with me now. “Cancer?!? At my age?” I was a firm believer then that “ignorance is bliss” and would rather have it go undiagnosed than to know I have cancer and have to endure surgeries and chemotherapy.

After school was over for the year and I was still having problems I finally went to my doctor about it. No one knew about the blood yet though, and I kept the doctor in the dark too. Now if you’re wondering how it took me that long to go to the doctor, or more specifically why my parents didn’t push me into it, here’s why; in my dad’s younger years he had some pretty consistent stomach problems and doctors had told him that it was simply a nervous stomach. Since I was dealing with junior high and getting ready to move on to high school where the ridicule could only increase because of the higher number of students, it seemed like it was a good reason to me. That was before the blood showed up of course. Since school was over and I was still having the problems it became apparent to my folks that it was something more than nerves that were causing me gastric distress. The first few times that I went to the doctor about it he just sent me home with some Imodium, maybe it was something a little stronger, and perhaps some antibiotics in case I had some kind of infection, because I didn’t tell him anything other than my problem with chronic diarrhea. I was hoping that was enough and he’d just telepathically figure out the rest. He didn’t unfortunately.

So summer passed by and I was now into my freshman year of high school. The diarrhea and the blood stuck around like an annoying little brother wanting join the ‘big boys’. I’m not quite sure what changed my mind, maybe I was tired of dealing with it everyday or maybe I was having more pain, but I finally broke down and told my parents about the blood. Once they heard about it it didn’t take long for me to go back to the doctor and tell him. I played it off like the blood had just shown up when I told everyone though. I wasn’t sure how they’d react when they found out I’d kept something as serious as that from them for so long. Guess I’ll figure out when they read this, hehe. Anyway, once the cat was out of the bag my doctor barely hesitated before he told me that I should probably see a specialist.

I went to my first gastroenterologist sometime that fall. And my second and third, thanks to those handy HMOs. I only had one meeting with the first and second, but I at least had my first tests set up through that second doctor. I had some X-rays taken, for which I had to drink a lot of barium contrast and something that was like pop-rocks to get me to have gas. I also went through CT scans, MRIs, and ultrasounds. All of those came up with the same result. The results showing that I had some narrowing of the small and large intestine. The narrowing appeared consistent throughout my intestines, hard to tell with all the layers of guts to look through, and to my horror the C word was mentioned, along with two diseases that I had not heard of before; ulcerative colitis and Crohn’s disease. It wasn’t until January 1996, nearly a year and half (maybe) since I started having symptoms, that it was suggested that I have a colonoscopy to figure just what the heck was going on inside of me.

Monday, April 24, 2006

Idea Behind This

I've had the idea of creating this blog for some time now. The purpose of this is to give others with Crohn's disease a chance to read about someone else's experience. Maybe it will give them a chance to say, "Well, at least my case isn't as bad as this guy's," and provide some perspective. Perhaps those with more problems than myself will start their own blog to detail their experiences as well. Overall, I just want those with Crohn's disease to know that there are many people in the world going through many of the same ups and downs in trying to deal with this disease.

Now I've seen a few other blogs out there that tried to do the same as I am now, but the posts had stopped coming years ago. Since there is no cure for Crohn's I know they didn't stop writing because they no longer have to deal with it. Maybe they just moved on and decided no one was listening. I tested my commitment to blogging with another blog which is all for fun and other everyday occurrences. Here I will be concentrating solely on anything that I think someone might want to know. Maybe even just a friend or family member of someone diagnosed and who might not understand what's going on, or what that person is going through or feeling. I will be completely honest in anything that is posted here, so if anyone that I might know reads this hopefully I don't scare them with anything that I write.

This has been, up until now, something that I've tried to hide from nearly everyone that I've come into contact with. I've gone through periods where I didn't care who knew and I'd just tell anyone that asked what was going on. Other times I hid everything I felt and dealt with from all, just letting it bottle up inside of me. Now being open backfires on me quite a bit when I encounter someone too... shallow to be able to wrap their head around the fact that I'm still the same person they knew before I told them I had Crohn's. I don't want to interact with people like that in the first place, but the reactions are painful nonetheless.

Just to give you an idea of how long I've dealt with this I've lived with Crohn's disease since 1994, when I started to show symptoms. I'll be going into more detail as time goes by and I post everything that I've dealt with since then. I've been trying my best to recollect all that has happened over the many years, I know I'm still missing some things, and I'll be trying to go through it all chronologically. It will take quite a while for me to catch up, but bear with me and I hope that this blog will live up to all of the expectations that I've thought it would be able to achieve.