- Joined
- Jan 6, 2010
- Messages
- 661
I apologize everyone, as I'm sure this isn't going to be the most upbeat first post on the forum here. I'm just, well you can guess from the title, frustrated. That's kinda what drove me to seek out a forum tonight.
Anyways, I'm a 24 year old fellow sufferer. I don't know if I can remember exactly when my issues started. I know that in 2002-early 2003, a doc suspected I had Crohn's after realizing I was dealing with anal fissures. I know I'd had it for years because I remember the pain and bleeding going back possibly even three years before that. However, as a young teenage girl, I'd been too embarrassed to tell anyone I bled when I went to the bathroom, so I just dealt with it. Finally, when I realized a huge skin tag had formed with the fissure and freaked out thinking it was a hemmorhoid, I went to the doc. The nice colon and rectal surgeon did a sigmoidoscopy, which really did nothing except HURT my already tender backside. Nothing showed. Had an Upper GI with small bowel follow through. Nothing showed. So we did the surgery to remove the fissure and thought nothing more of it.
As years went by, I noticed bleeding again, but tried once again to brush it off because I REALLY didn't want to go through that surgery again. Finally, it became intolerable. Again, it took me years to see the doc. Christmases were ruined because I would find myself curled up on the floor of the bathroom in agony. Diarrhea became so common that it seemed odd to have a solid bowel movement. Blood and mucus became major parts of my bowel movements. Going to the bathroom 10-20 (or more!) times a day started to seem normal to me. Fatigue became so common I just thought I naturally didn't have as much energy as others. I faced mortifying accidents in public. Well, I don't think I need to run down the full list. You understand.
Slowly, I started weeding out the things that seemed to cause me the most problems. My beloved coffee was quickly cut. I gave up Chinese food because it just wasn't worth the "Revenge of the Chinese." Et cetera...
Finally, I had enough. After I spent a weekend away crippled by the pain, urgency, and frequency and watching the toilet turn red, I realized this couldn't possibly be normal and called my doc who quickly referred me to a gastro.
That brings us up to November 2008. I saw the doc, who was amazing, and started the whole process. Had a colonoscopy in early December 2008, and he said he definitely saw evidence of Crohn's. I wasn't thrilled, but it was an answer and meant finally getting on the road to treating. Then the biospy came back and... TADA!... did not confirm that it was Crohn's. We did a small bowel series too, but that didn't show any conclusive evidence of Crohn's either. That was frustrating, but he said it didn't rule it out, and he still had what he saw during the colonoscopy. I'd started a round of Entocort right after the colonoscopy, and things seemed to be improving some.
I was given an option at that time since the biospy and small bowel series didn't confirm Crohn's... I could start medication or try to see how I did without it and play it by ear. I'm not fond of meds, so I thought I'd see how it played out. I HOPED maybe it wouldn't return.
I wasn't so lucky. For about a year now, I've suffered through various TERRIBLE bouts. One over the summer prompted me to call the office, and the NP relayed the message to just go to the ER. I wasn't having any parts of that. The ER here would have done little more than I could do for myself at home, and I didn't feel like dealing with it. So, I suffered through. Made the same decision one or two other times when I called and couldn't seem to get an appointment for months. Two notable times, I had significant bleeding again... I know there were more, but these were notable because I was out of town trying to enjoy myself.
Finally, I had enough again. I called back, and this time there was a cancellation within the week. Honestly, I cried tears of joy.
The appointment went well. I have another colonoscopy scheduled for Tuesday. Can't say I'm thrilled about it, but I would do almost anything to get a TRUE answer and start to feel better. I'm going in for blood work Saturday. Today I had my small bowel series, which I'm guessing showed nothing since it took maybe 45 minutes start to finish. But that means no obstruction or anything, which is great. Just not any closer to answers. And of course, the barium has just made my already sensitive intenstines even worse.
So basically, I just needed to find myself among friends who understand. I'm frustrated, in pain, and just want answers.
Anyways, I'm a 24 year old fellow sufferer. I don't know if I can remember exactly when my issues started. I know that in 2002-early 2003, a doc suspected I had Crohn's after realizing I was dealing with anal fissures. I know I'd had it for years because I remember the pain and bleeding going back possibly even three years before that. However, as a young teenage girl, I'd been too embarrassed to tell anyone I bled when I went to the bathroom, so I just dealt with it. Finally, when I realized a huge skin tag had formed with the fissure and freaked out thinking it was a hemmorhoid, I went to the doc. The nice colon and rectal surgeon did a sigmoidoscopy, which really did nothing except HURT my already tender backside. Nothing showed. Had an Upper GI with small bowel follow through. Nothing showed. So we did the surgery to remove the fissure and thought nothing more of it.
As years went by, I noticed bleeding again, but tried once again to brush it off because I REALLY didn't want to go through that surgery again. Finally, it became intolerable. Again, it took me years to see the doc. Christmases were ruined because I would find myself curled up on the floor of the bathroom in agony. Diarrhea became so common that it seemed odd to have a solid bowel movement. Blood and mucus became major parts of my bowel movements. Going to the bathroom 10-20 (or more!) times a day started to seem normal to me. Fatigue became so common I just thought I naturally didn't have as much energy as others. I faced mortifying accidents in public. Well, I don't think I need to run down the full list. You understand.
Slowly, I started weeding out the things that seemed to cause me the most problems. My beloved coffee was quickly cut. I gave up Chinese food because it just wasn't worth the "Revenge of the Chinese." Et cetera...
Finally, I had enough. After I spent a weekend away crippled by the pain, urgency, and frequency and watching the toilet turn red, I realized this couldn't possibly be normal and called my doc who quickly referred me to a gastro.
That brings us up to November 2008. I saw the doc, who was amazing, and started the whole process. Had a colonoscopy in early December 2008, and he said he definitely saw evidence of Crohn's. I wasn't thrilled, but it was an answer and meant finally getting on the road to treating. Then the biospy came back and... TADA!... did not confirm that it was Crohn's. We did a small bowel series too, but that didn't show any conclusive evidence of Crohn's either. That was frustrating, but he said it didn't rule it out, and he still had what he saw during the colonoscopy. I'd started a round of Entocort right after the colonoscopy, and things seemed to be improving some.
I was given an option at that time since the biospy and small bowel series didn't confirm Crohn's... I could start medication or try to see how I did without it and play it by ear. I'm not fond of meds, so I thought I'd see how it played out. I HOPED maybe it wouldn't return.
I wasn't so lucky. For about a year now, I've suffered through various TERRIBLE bouts. One over the summer prompted me to call the office, and the NP relayed the message to just go to the ER. I wasn't having any parts of that. The ER here would have done little more than I could do for myself at home, and I didn't feel like dealing with it. So, I suffered through. Made the same decision one or two other times when I called and couldn't seem to get an appointment for months. Two notable times, I had significant bleeding again... I know there were more, but these were notable because I was out of town trying to enjoy myself.
Finally, I had enough again. I called back, and this time there was a cancellation within the week. Honestly, I cried tears of joy.
The appointment went well. I have another colonoscopy scheduled for Tuesday. Can't say I'm thrilled about it, but I would do almost anything to get a TRUE answer and start to feel better. I'm going in for blood work Saturday. Today I had my small bowel series, which I'm guessing showed nothing since it took maybe 45 minutes start to finish. But that means no obstruction or anything, which is great. Just not any closer to answers. And of course, the barium has just made my already sensitive intenstines even worse.
So basically, I just needed to find myself among friends who understand. I'm frustrated, in pain, and just want answers.
