hey guys, this is my first post here........ back in august I was diagnosed with crohn's after having symptoms for about 2 years. Back in 2007 when I was a junior in high school I started having dull cramps after eating. I thought it was just a bug that wouldnt kick, and I remember taking a lot of tums to help calm myself (had more of a placebo effect if anything). I either got used to the cramps or they went away, until later that summer I started working long days and not eating well. I remember sitting on the toilet thinking I was constipated because it hurt so much to poop, then what I saw come out made me say "that's it???" (no diarrhea at this point). That was perianal crohn's rearing (literally) its ugly head. I also occasionally saw blood in the toilet
anyway, into my senior year of high school things started to get worse. I would get cramps every few hours that made me want to curl up into a ball, then a minute later i'd feel fine. I'd only really have to go every 2 days (well, I did a lot of holding in because of the pain involved in pooping) but it was always diarrhea. At this point you'd think I'd see a doctor but I didnt see a doc until I had a routine physical in early 2009. I told him about the diarrhea and he sent me to get blood work. He didnt seem too alarmed, mostly because I only "go" once a day. It was comforting that the whole situation didnt seem to urgent to him, but I knew something pretty serious was wrong even though I didnt want to make a big deal about it. I kindve figured I had crohn's based on the symptoms, the only thing that didnt match up was the fact that I wasnt running to the toilet 10 times a day.
Anyway, blood work came back with low iron and elevated sed rate and he referred me to a GI.
OK so at this point you need to know that I have a thing about going to the doctor. I know everyone has a certain amount of anxiety...... it's just I had a fear of knowing what was wrong with me. I was so comfortable with the symptoms--i got so used to them-- that at that point it didnt matter to me what was wrong. I was dealing with it..... i felt like shit but I never missed a day of school or a day of work (and I was the one busting the most ass day in and day out).
So this past year consisted of me looking pale sickly, being tired/sleeping a lot, being irritable, and having to go every morning like clockwork, occasionally in the middle of the night, and every few weeks I'd have a few days where the flood gates would open and the toilet was filled with mostly liquid.
I didnt make an appt with the GI right away. In fact, I saw my regular doctor and got the referral the last time in jan, and I made my first GI appt in June. I thought I was "OK" enough to keep on truckin............ well until I met a girl....... I dont know why she liked me when she was healthy and beautiful and I was miserable and sickly.... but for some reason I pursued her and we got to know each other pretty well. I remember feeling like crap one day, more particularly than I normally did (well I was afraid I'd have to run to the bathroom at work), to the point where I had called out of work for the first time ever and she asked me what was wrong (and why I had been "sick" for going on a week without explanation). So I told her that I havent been well for a while......but the worst part was admitting that I wasn't getting help for it. That was basically the turning point for me, where I realized how pathetic it was that I wasnt helping myself, and that things would never workout between me and anyone if I couldnt take care of myself.
So I made an appt with the GI. After going over the lab results, my symptoms (or lack thereof in some cases) and my family history he was 99% sure I had celiac. I did some more blood work, this time looking specifically for celiac but it came back negative/inconclusive. I kindve starting thinking differently, feeling like an idiot that I thought I had crohns when this whole time all I had to do was stop eating wheat (my doc was so certain it had to be celiac). Anyway I went for my first scope about a month later... I actually postponed it once because I had so much anxiety about the whole thing... not the procedure itself, but telling my parents about everything and finding out what was really wrong.
So the day came for the colonscopy & upper endo, and I have to admit I actually look forward to getting put out for 20-30 minutes. The days I get scoped are probably the easiest days for me. I remember coming to while I was being wheeled to recovery, looked up at the doc and all he said was "it's crohn's". It was the weirdest feeling of relief (the sedation helped a lot). The rest of the day I felt like I had the biggest load taken off my back. Obviously I have a lot of mixed feelings since that day, but Ill never forget how relieved I felt that day to actually KNOW what was wrong.
So now over 2 months later I have had a whole workup of tests, I am on pentasa, entocort, flygyl and nexium, and zypram, which is hydrocortisone you squirt up your butt for fissures, and I am feeling somewhat better. Im still tired a lot, but the diarrhea is all but gone, the cramp are barely noticeable and apparently my iron is back up and my sed rate is down. My attitude has changed a lot since that day. Some days I feel like I can take on the world, other days I feel so hopeless because I will be sick forever. A lot more ups and downs than Im used to.
Crohns is everywhere from my stomach my anus, with the worst being in my stomach, which is why I lacked the more "traditional" crohns symptoms of having to go multiple times a day. According to my last endo, the nexium alone isnt helping, so my doc has me crushing up three caplets worth of entocort pellets and eating the powder before bed. He says it's either that, or prednisone. He also wants to start me on 6-mp. The thought of taking either of those two meds is very scary.
So that's my story....it's half about the disease and half about the struggle in my head. I know I included a lot of small insignificant details but thats the first time ive been able to tell it to anyone. My friends know what's wrong, but I spare them the details because I think they get the hang of it. If youre wondering about the girl, things didnt exactly work out and we went our separate ways for now (story for another time!) anyway thanks for listening........
anyway, into my senior year of high school things started to get worse. I would get cramps every few hours that made me want to curl up into a ball, then a minute later i'd feel fine. I'd only really have to go every 2 days (well, I did a lot of holding in because of the pain involved in pooping) but it was always diarrhea. At this point you'd think I'd see a doctor but I didnt see a doc until I had a routine physical in early 2009. I told him about the diarrhea and he sent me to get blood work. He didnt seem too alarmed, mostly because I only "go" once a day. It was comforting that the whole situation didnt seem to urgent to him, but I knew something pretty serious was wrong even though I didnt want to make a big deal about it. I kindve figured I had crohn's based on the symptoms, the only thing that didnt match up was the fact that I wasnt running to the toilet 10 times a day.
Anyway, blood work came back with low iron and elevated sed rate and he referred me to a GI.
OK so at this point you need to know that I have a thing about going to the doctor. I know everyone has a certain amount of anxiety...... it's just I had a fear of knowing what was wrong with me. I was so comfortable with the symptoms--i got so used to them-- that at that point it didnt matter to me what was wrong. I was dealing with it..... i felt like shit but I never missed a day of school or a day of work (and I was the one busting the most ass day in and day out).
So this past year consisted of me looking pale sickly, being tired/sleeping a lot, being irritable, and having to go every morning like clockwork, occasionally in the middle of the night, and every few weeks I'd have a few days where the flood gates would open and the toilet was filled with mostly liquid.
I didnt make an appt with the GI right away. In fact, I saw my regular doctor and got the referral the last time in jan, and I made my first GI appt in June. I thought I was "OK" enough to keep on truckin............ well until I met a girl....... I dont know why she liked me when she was healthy and beautiful and I was miserable and sickly.... but for some reason I pursued her and we got to know each other pretty well. I remember feeling like crap one day, more particularly than I normally did (well I was afraid I'd have to run to the bathroom at work), to the point where I had called out of work for the first time ever and she asked me what was wrong (and why I had been "sick" for going on a week without explanation). So I told her that I havent been well for a while......but the worst part was admitting that I wasn't getting help for it. That was basically the turning point for me, where I realized how pathetic it was that I wasnt helping myself, and that things would never workout between me and anyone if I couldnt take care of myself.
So I made an appt with the GI. After going over the lab results, my symptoms (or lack thereof in some cases) and my family history he was 99% sure I had celiac. I did some more blood work, this time looking specifically for celiac but it came back negative/inconclusive. I kindve starting thinking differently, feeling like an idiot that I thought I had crohns when this whole time all I had to do was stop eating wheat (my doc was so certain it had to be celiac). Anyway I went for my first scope about a month later... I actually postponed it once because I had so much anxiety about the whole thing... not the procedure itself, but telling my parents about everything and finding out what was really wrong.
So the day came for the colonscopy & upper endo, and I have to admit I actually look forward to getting put out for 20-30 minutes. The days I get scoped are probably the easiest days for me. I remember coming to while I was being wheeled to recovery, looked up at the doc and all he said was "it's crohn's". It was the weirdest feeling of relief (the sedation helped a lot). The rest of the day I felt like I had the biggest load taken off my back. Obviously I have a lot of mixed feelings since that day, but Ill never forget how relieved I felt that day to actually KNOW what was wrong.
So now over 2 months later I have had a whole workup of tests, I am on pentasa, entocort, flygyl and nexium, and zypram, which is hydrocortisone you squirt up your butt for fissures, and I am feeling somewhat better. Im still tired a lot, but the diarrhea is all but gone, the cramp are barely noticeable and apparently my iron is back up and my sed rate is down. My attitude has changed a lot since that day. Some days I feel like I can take on the world, other days I feel so hopeless because I will be sick forever. A lot more ups and downs than Im used to.
Crohns is everywhere from my stomach my anus, with the worst being in my stomach, which is why I lacked the more "traditional" crohns symptoms of having to go multiple times a day. According to my last endo, the nexium alone isnt helping, so my doc has me crushing up three caplets worth of entocort pellets and eating the powder before bed. He says it's either that, or prednisone. He also wants to start me on 6-mp. The thought of taking either of those two meds is very scary.
So that's my story....it's half about the disease and half about the struggle in my head. I know I included a lot of small insignificant details but thats the first time ive been able to tell it to anyone. My friends know what's wrong, but I spare them the details because I think they get the hang of it. If youre wondering about the girl, things didnt exactly work out and we went our separate ways for now (story for another time!) anyway thanks for listening........
