- Joined
- Oct 2, 2013
- Messages
- 5
For a long time, I've had Crohn's symptoms. I have historically been constipated, and when I was 12, I saw a doctor to help take care of this. However, after trying Mirolax and Milk of Magnesia, we just kind of dropped it. So it wasn't surprising when I began having more diarrhea at 14. My mom made a doctor's appointment. She was expecting more constipation, but I felt differently. I knew that if I was also vomiting a lot and movement seemed to make it worse, then something else was probably wrong. Once the appointment came though, the doctor asked me how much fruit I was eating, and my answer was usually less than one serving a day, so the doctor blamed this as the cause and moved on.
Throughout that summer, I never got better. About halfway through July, I started getting worse. By the end of July, I completely crashed. I was in bed all the time, puking/pooping several times a day, losing weight, hair was falling out excessively, constant pain, etc. So then my mom took me back to the clinic, but I saw a different doctor, who did a stool sample and found cryptosporidium, a parasite that comes from bad water (we never figured out where that came from, and nobody else I knew had it). However, the doctor thought that the parasite was on top of something along the lines of Crohn's or UC. She referred me to a gastroenterologist. It took FOREVER to get an appointment, and the wait really tested my patience, but I got in, he ordered a colonoscopy and upper endoscopy, and that's when he found the Crohn's. So then I received a big fat envelope full of Crohn's brochures and info. I'm sure many other new Crohn's patients remember getting this also.
I was put on Prednisone, and got better pretty fast. Lucky for me, I felt better just enough in time, because during this crash, my mom, sister, and I were in the process of moving to Idaho, and without this I would have been in NO shape to sit up in a moving truck for 4 days. So when we got to Idaho, I began seeing a new gastroenterologist, who I actually liked better. He looks like Bob Saget. And he's very "on the ball." He has called me personally when he couldn't get a hold of my mom, he's very good about not forgetting about me after I leave his office, he draws his own labs, etc. He started me on Azathioprine, and then I crashed shortly after the prednisone ended. He did another round or two of prednisone for the next crashes, and then I crashed again. So then I was also on Apriso.
In the spring of my freshman year, I was still not feeling good, so he suggested we try a Low FODMAP diet. I was reluctant at first, because I'm a very picky eater, and there were more foods I'd have to give up than what I could have. But he and my mom kind of tried to push me into it, and he referred me to a dietician. For some reason, the dietician's office never got in touch with us, so nothing happened for another month or so, and we did another round of prednisone. At the end of that month of nothing happening, I discovered this website that had all these great recipes for low FODMAP diet. I was encouraged, so I searched and searched the internet for recipes, and I tried the diet. I stuck to it completely for about 2 weeks, which was really good for me, and I felt a lot better, but we had to start weening off the diet a lot because I was going back to Iowa for 5 weeks, and it just wasn't possible to follow the diet completely there. However, my best friend's parents were super helpful and helped me do a pretty decent job, dietwise. I did have some pain while in Iowa- a lot was just random bursts pf discomfort that didn't keep me down, and I only spent about a day and a half laying low. That was a record for me.
When I got home from Iowa, I took a few days to unpack and redo my room (my sister moved back to Iowa for her senior year, so I had a lot of her stuff to store, and I wanted to rearrange and reorganize a bit) and get ready for school to start. However, after this I crashed again. I was able to get through the first 2 weeks of school just fine (I do online school, which helps me a lot). Then I kept getting worse, so Mom made another appointment with Bob Saget (that's what I call my tummy doctor
). When that appointment came, he didn't like that I was still in pain and still losing weight (I've lost 40 pounds, although around 10 of that was from quitting pop and exercising), so he ordered a barium study because he thought I was hurting more than we realized and my labs were coming back mostly normal because of all the vitamins I take.
The barium study really sucked, and it took me over 2 days to recover from it, but I made it, and we got the results quickly. There was a 5-inch stricture in my small intestine. So the options were surgery, shots once a month, and shots every two weeks. All of these were expensive options, so we left the insurance to approve something while we waited. I was consuming mostly liquids and soft foods meanwhile. The insurance eventually approved for the shots every two weeks (Humira), PTL! That's the one Bob Saget wanted, and my mom and I didn't know the details, so we knew that shots would be the better option either way, we just didn't know that one shot was better than the other. I can't believe how expensive humira is though! $12,000! Dang, maybe I'll have to become a lab technician or a medical researcher. That is crazy! PTL for the insurance covering it.
We took the shots to the doctor, and I had four the first day. The doctor and his nurse did them all. They really hurt. It wasn't the needle that hurt, but the goo really stings. Hopefully it'll be better tomorrow, when I have my next round, since there's only two. I'm probably going to have to do one! :eek2: I'm kind of scared, but I think I'll feel more comfortable after I do one. The doctor sent me home with two practice pens last time, which I used, and they mailed me a talking practice pen, which I have yet to use before tomorrow. Wish me luck, and prayers would be much appreciated, if you're a praying person. Then after tomorrow, I have one every two weeks and I do it at home. :eek2: That's another milestone to conquer. Tips would be very helpful!
Throughout that summer, I never got better. About halfway through July, I started getting worse. By the end of July, I completely crashed. I was in bed all the time, puking/pooping several times a day, losing weight, hair was falling out excessively, constant pain, etc. So then my mom took me back to the clinic, but I saw a different doctor, who did a stool sample and found cryptosporidium, a parasite that comes from bad water (we never figured out where that came from, and nobody else I knew had it). However, the doctor thought that the parasite was on top of something along the lines of Crohn's or UC. She referred me to a gastroenterologist. It took FOREVER to get an appointment, and the wait really tested my patience, but I got in, he ordered a colonoscopy and upper endoscopy, and that's when he found the Crohn's. So then I received a big fat envelope full of Crohn's brochures and info. I'm sure many other new Crohn's patients remember getting this also.
I was put on Prednisone, and got better pretty fast. Lucky for me, I felt better just enough in time, because during this crash, my mom, sister, and I were in the process of moving to Idaho, and without this I would have been in NO shape to sit up in a moving truck for 4 days. So when we got to Idaho, I began seeing a new gastroenterologist, who I actually liked better. He looks like Bob Saget. And he's very "on the ball." He has called me personally when he couldn't get a hold of my mom, he's very good about not forgetting about me after I leave his office, he draws his own labs, etc. He started me on Azathioprine, and then I crashed shortly after the prednisone ended. He did another round or two of prednisone for the next crashes, and then I crashed again. So then I was also on Apriso.
In the spring of my freshman year, I was still not feeling good, so he suggested we try a Low FODMAP diet. I was reluctant at first, because I'm a very picky eater, and there were more foods I'd have to give up than what I could have. But he and my mom kind of tried to push me into it, and he referred me to a dietician. For some reason, the dietician's office never got in touch with us, so nothing happened for another month or so, and we did another round of prednisone. At the end of that month of nothing happening, I discovered this website that had all these great recipes for low FODMAP diet. I was encouraged, so I searched and searched the internet for recipes, and I tried the diet. I stuck to it completely for about 2 weeks, which was really good for me, and I felt a lot better, but we had to start weening off the diet a lot because I was going back to Iowa for 5 weeks, and it just wasn't possible to follow the diet completely there. However, my best friend's parents were super helpful and helped me do a pretty decent job, dietwise. I did have some pain while in Iowa- a lot was just random bursts pf discomfort that didn't keep me down, and I only spent about a day and a half laying low. That was a record for me.
When I got home from Iowa, I took a few days to unpack and redo my room (my sister moved back to Iowa for her senior year, so I had a lot of her stuff to store, and I wanted to rearrange and reorganize a bit) and get ready for school to start. However, after this I crashed again. I was able to get through the first 2 weeks of school just fine (I do online school, which helps me a lot). Then I kept getting worse, so Mom made another appointment with Bob Saget (that's what I call my tummy doctor
). When that appointment came, he didn't like that I was still in pain and still losing weight (I've lost 40 pounds, although around 10 of that was from quitting pop and exercising), so he ordered a barium study because he thought I was hurting more than we realized and my labs were coming back mostly normal because of all the vitamins I take. The barium study really sucked, and it took me over 2 days to recover from it, but I made it, and we got the results quickly. There was a 5-inch stricture in my small intestine. So the options were surgery, shots once a month, and shots every two weeks. All of these were expensive options, so we left the insurance to approve something while we waited. I was consuming mostly liquids and soft foods meanwhile. The insurance eventually approved for the shots every two weeks (Humira), PTL! That's the one Bob Saget wanted, and my mom and I didn't know the details, so we knew that shots would be the better option either way, we just didn't know that one shot was better than the other. I can't believe how expensive humira is though! $12,000! Dang, maybe I'll have to become a lab technician or a medical researcher. That is crazy! PTL for the insurance covering it.
We took the shots to the doctor, and I had four the first day. The doctor and his nurse did them all. They really hurt. It wasn't the needle that hurt, but the goo really stings. Hopefully it'll be better tomorrow, when I have my next round, since there's only two. I'm probably going to have to do one! :eek2: I'm kind of scared, but I think I'll feel more comfortable after I do one. The doctor sent me home with two practice pens last time, which I used, and they mailed me a talking practice pen, which I have yet to use before tomorrow. Wish me luck, and prayers would be much appreciated, if you're a praying person. Then after tomorrow, I have one every two weeks and I do it at home. :eek2: That's another milestone to conquer. Tips would be very helpful!
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