I was recently diagnosed with Crohn's Disease in September of 2013. I am a very active and busy 16 year old with high ambitions to be successful in life, but this disease has completely turned my life around. I like and am used to being in control of everything in my life and with Crohn's I feel like that's impossible and it's very frustrating.
I guess I can start off with my initial symptoms. In July of 2013, if you can remember that nasty bug that was going around in the pools and stuff during the summer. My sister was at the pool the day before my local pool was tested positive for it. And she, who is usually constipated, had diarrhea for like two weeks. After she was almost back to normal, I got diarrhea, and I didn't think anything of it. I'd had diarrhea many many times before and I just figured it would eventually go away. I was just confused as to how I got that nasty bug because I hadn't been to the pool for over a month and you can only get it from being in the pool or close contact and both me and my sister like to be clean. But, still, I put it off, I didn't even tell my mom. But, about two or three weeks later into the very beginning of August, I started having blood in the stools. I also put that off, I thought it would maybe go away. I didn't have any pain then either though. But, halfway through August, I started having the abdominal cramping. That's when I told my mom what was going on, because nothing had gotten better in over a month. She just said to keep watching it and we would go to the doctor. We both kept putting it off, I was fine most of the time, and we were going back to school really soon and we were throwing a big family birthday party for me and my dad the weekend after school started so we were both pre-occupied. We went to the Peds doctor and they referred us to the GI doctor and she also didn't know what was going on and they gave me a stomach med to see if that would help. I also lost about 11 pounds in two months over the summer and I hadn't even been trying.
But as Labor Day weekend rolled around, my conditioned worsened. The cramps were stronger and more often, more blood, and my temperature was even higher than normal (for over 3 years now I have run a constant low-grade fever in the 99.0 and 100.0's which we could never understand, but now realize this is probably from inflammation from the disease). So my mom called the ER and since we had previously been to the GI there, they said that they would just send me to Blank Children's Hospital in Des Moines so we drove down there on Labor Day. The people there didn't help at all. I got an IV and they gave me Benadryll so that I would fall asleep, before we left at 12:30 AM. :ymad: That was frustrating. My mom had also previously called the Peds GI office down at Blank a few days before, trying to get in for an appointment. We stayed in a hotel overnight and when we were out for breakfast the next morning, my mom got a call saying that there was a cancellation and that we could come in later that morning! So we went to the appointment and met the doctor and I told him everything that was going on. He told me that he couldn't tell me exactly what was going on without testing but that he suspected Crohn's. He gave us information on Crohn's and we headed all the way back home, but I had an colonoscopy and endoscopy scheduled for that Thursday. I prepped at home and drove back down (2 hr drive) and after the scopes, we met with the doctor and he confirmed it as Crohn's. I had a few lesions in my stomach and quite a few in my large intestines and rectum. After that I started on 40 mgs of Prednisone and 150 mgs of azathioprine. I started to feel a lot better, besides the stupid side effects. I was always so tired and drained and irritated and not myself. I used to be a happy and positive girl, but ever since I got sick, I'm just not myself.
Weirdly, after feeling better, I was going number 2 less and less. About 3 weeks of taking my meds, I was really confused as to where all this food I was eating was going. All I had was little pieces and some blood. Sometime in September I believe, I was scheduled to have an MRE to check part of my small intestine that the scopes can't get to and I had to prep for that. I thought that I was completely cleaned out, but after the doctors checked the results, which were good and bad, my small intestine was looking great, but I was really full of poop in the large intestine. So we tried a few bottles of mag citrate, and again I thought I was clear. But as it turned out ever thing was going around the hard stools sitting in my colon. The second week of October, I was so sick, I wasn't hungry, I wasn't going much at all, and I had terrible cramps. So my doctor wanted me admitted into Blank. I had a tube go down my throat into my stomach and over the course of three days and two nights, I had FIVE two liter jugs of Go-Litely go through my system and finally everything was actually out. I had another colonoscopy the last morning there. And everything was actually looking great the Prednisone worked! I had no more lesions and my doctor figured the blood was from irritation of the stools in my colon. He then wanted me to take 4 doses of Miralax every day to keep things normal. I was feeling very well for about two weeks after that and I think that's when I started tapering off of the Prednisone (I can't remember off the top of my head). A month later, things weren't too much better, but not too much worse either... I saw my doctor again and with my symptoms I was still having (cramps, gas, going between constipation and diarrhea) he thought I may have Irritable Bowel Syndrome on top of the Crohn's. Also, he ordered labs for blood work to check my aza levels, and if they were normal, yes normal (still doesn't make sense to me) I would need to try something else, like Remicade. Which my mom is very against; it's basically poison. I don't want to try it either. But, it turned out that the levels were too low, so a few weeks ago, I was bumped up to 200 mgs of aza. I actually got a little better, but in the past week, I've gotten more blood in the stools, so I just can't find anything that works long term.
This whole time though, I cannot pinpoint what foods bother me. I've been eating what I always eat. I usually don't feel good after eating ANYTHING but sometimes it's worse, I just can't find a correlation. Now that it's a new year, I'm going to start journaling down to the half hour with what I eat and symptoms. I have been trying to eat better, though. More water, organic foods, less processed crap. And my mom went gluten free about the time I first got sick and she's gluten intolerant, so we want to try gluten free for me but I'm not sure about it. Advice about that would be helpful! I guess were still working on the diet part. So any advice about diet would be VERY helpful, I am willing to try anything instead of just taking more meds!
The hardest part though, for me with all of this, is the social and mental part of this. My friends don't understand what I'm going through. I'm tired all the time and all of my energy goes into school work and my dancing. I don't have energy to do all the things I used to do with my friends. Also, I am a very good student in school but this past semester of my sophomore year has been hard. School used to be easy for me, but I have missed SO MUCH school this year so far and my grades were not my average grades. Which is hard for me, I'm a perfectionist and being stressed out all semester just made me stressed out. It's a vicious circle. My mom thinks I'm slipping into depression, which I agree...it's not bad, but I'm not myself anymore.
Nobody around me except my mom understands exactly what's going on, but I'm really glad I found this forum! It's been really helpful to read what other people say who know exactly how I feel. So if any of you have ANY advice about medication, or diet, or mental issues PLEASE SHARE! I am trying very hard to get into remission. Thank you for reading this if you got all the way through it! Much love
I guess I can start off with my initial symptoms. In July of 2013, if you can remember that nasty bug that was going around in the pools and stuff during the summer. My sister was at the pool the day before my local pool was tested positive for it. And she, who is usually constipated, had diarrhea for like two weeks. After she was almost back to normal, I got diarrhea, and I didn't think anything of it. I'd had diarrhea many many times before and I just figured it would eventually go away. I was just confused as to how I got that nasty bug because I hadn't been to the pool for over a month and you can only get it from being in the pool or close contact and both me and my sister like to be clean. But, still, I put it off, I didn't even tell my mom. But, about two or three weeks later into the very beginning of August, I started having blood in the stools. I also put that off, I thought it would maybe go away. I didn't have any pain then either though. But, halfway through August, I started having the abdominal cramping. That's when I told my mom what was going on, because nothing had gotten better in over a month. She just said to keep watching it and we would go to the doctor. We both kept putting it off, I was fine most of the time, and we were going back to school really soon and we were throwing a big family birthday party for me and my dad the weekend after school started so we were both pre-occupied. We went to the Peds doctor and they referred us to the GI doctor and she also didn't know what was going on and they gave me a stomach med to see if that would help. I also lost about 11 pounds in two months over the summer and I hadn't even been trying.
But as Labor Day weekend rolled around, my conditioned worsened. The cramps were stronger and more often, more blood, and my temperature was even higher than normal (for over 3 years now I have run a constant low-grade fever in the 99.0 and 100.0's which we could never understand, but now realize this is probably from inflammation from the disease). So my mom called the ER and since we had previously been to the GI there, they said that they would just send me to Blank Children's Hospital in Des Moines so we drove down there on Labor Day. The people there didn't help at all. I got an IV and they gave me Benadryll so that I would fall asleep, before we left at 12:30 AM. :ymad: That was frustrating. My mom had also previously called the Peds GI office down at Blank a few days before, trying to get in for an appointment. We stayed in a hotel overnight and when we were out for breakfast the next morning, my mom got a call saying that there was a cancellation and that we could come in later that morning! So we went to the appointment and met the doctor and I told him everything that was going on. He told me that he couldn't tell me exactly what was going on without testing but that he suspected Crohn's. He gave us information on Crohn's and we headed all the way back home, but I had an colonoscopy and endoscopy scheduled for that Thursday. I prepped at home and drove back down (2 hr drive) and after the scopes, we met with the doctor and he confirmed it as Crohn's. I had a few lesions in my stomach and quite a few in my large intestines and rectum. After that I started on 40 mgs of Prednisone and 150 mgs of azathioprine. I started to feel a lot better, besides the stupid side effects. I was always so tired and drained and irritated and not myself. I used to be a happy and positive girl, but ever since I got sick, I'm just not myself.
Weirdly, after feeling better, I was going number 2 less and less. About 3 weeks of taking my meds, I was really confused as to where all this food I was eating was going. All I had was little pieces and some blood. Sometime in September I believe, I was scheduled to have an MRE to check part of my small intestine that the scopes can't get to and I had to prep for that. I thought that I was completely cleaned out, but after the doctors checked the results, which were good and bad, my small intestine was looking great, but I was really full of poop in the large intestine. So we tried a few bottles of mag citrate, and again I thought I was clear. But as it turned out ever thing was going around the hard stools sitting in my colon. The second week of October, I was so sick, I wasn't hungry, I wasn't going much at all, and I had terrible cramps. So my doctor wanted me admitted into Blank. I had a tube go down my throat into my stomach and over the course of three days and two nights, I had FIVE two liter jugs of Go-Litely go through my system and finally everything was actually out. I had another colonoscopy the last morning there. And everything was actually looking great the Prednisone worked! I had no more lesions and my doctor figured the blood was from irritation of the stools in my colon. He then wanted me to take 4 doses of Miralax every day to keep things normal. I was feeling very well for about two weeks after that and I think that's when I started tapering off of the Prednisone (I can't remember off the top of my head). A month later, things weren't too much better, but not too much worse either... I saw my doctor again and with my symptoms I was still having (cramps, gas, going between constipation and diarrhea) he thought I may have Irritable Bowel Syndrome on top of the Crohn's. Also, he ordered labs for blood work to check my aza levels, and if they were normal, yes normal (still doesn't make sense to me) I would need to try something else, like Remicade. Which my mom is very against; it's basically poison. I don't want to try it either. But, it turned out that the levels were too low, so a few weeks ago, I was bumped up to 200 mgs of aza. I actually got a little better, but in the past week, I've gotten more blood in the stools, so I just can't find anything that works long term.
This whole time though, I cannot pinpoint what foods bother me. I've been eating what I always eat. I usually don't feel good after eating ANYTHING but sometimes it's worse, I just can't find a correlation. Now that it's a new year, I'm going to start journaling down to the half hour with what I eat and symptoms. I have been trying to eat better, though. More water, organic foods, less processed crap. And my mom went gluten free about the time I first got sick and she's gluten intolerant, so we want to try gluten free for me but I'm not sure about it. Advice about that would be helpful! I guess were still working on the diet part. So any advice about diet would be VERY helpful, I am willing to try anything instead of just taking more meds!
The hardest part though, for me with all of this, is the social and mental part of this. My friends don't understand what I'm going through. I'm tired all the time and all of my energy goes into school work and my dancing. I don't have energy to do all the things I used to do with my friends. Also, I am a very good student in school but this past semester of my sophomore year has been hard. School used to be easy for me, but I have missed SO MUCH school this year so far and my grades were not my average grades. Which is hard for me, I'm a perfectionist and being stressed out all semester just made me stressed out. It's a vicious circle. My mom thinks I'm slipping into depression, which I agree...it's not bad, but I'm not myself anymore.
Nobody around me except my mom understands exactly what's going on, but I'm really glad I found this forum! It's been really helpful to read what other people say who know exactly how I feel. So if any of you have ANY advice about medication, or diet, or mental issues PLEASE SHARE! I am trying very hard to get into remission. Thank you for reading this if you got all the way through it! Much love
