Hello everyone,
My name is Matt, I'm 19 years old and currently studying engineering in university. My journey to diagnosis started a rather cramped one. Terrible trouble having a full BM, bloody stool, etc. I knew something was obviously not right but I let this go on for a year or more without telling anyone. I wished more than anything for it to go away so I wouldn't have to see my doctor (somewhat of a fear of medical procedures) however this never happened. One night while attempting to use the bathroom my dad overheard me swearing on the toilet out of frustration. He told me I needed to see our family doctor so I did just that. First visit (week of my 19th birthday) my doc gave a rectal exam and I was told I had some pretty bad fissures and scarring. He prescribed Cipro and Flagyl. As we all know, Flagyl and alcohol don't mix, therefore, I couldn't even celebrate my 19th birthday with a beverage (or 10). He also told me the Restoralax should help with the BMs. After weeks of trying different med combinations, he told me that all the trials were for nothing, as there was pretty much no progress in the healing down there. He sent me to see a gastro specialist who happened to be somewhat of a family friend. We talked and did an exam and we set up an appointment for a colonoscopy. The day before the exam was downright awful. Having to drink the PEG mix was one of the worst things I've had to do as I didn't even finish it. I was sedated for my colonoscopy but I do think I remember waking up for a moment feeling a little drunk, looking at the screen and asking my doc if I did an okay job at cleaning myself out but then, nothing. After I woke up my doc came to tell me that my colon was inflamed and that I had fistulating crohn's diesease around my rectum and at the start of my large intestine (ileum?). I was pretty depressed about the news, in fact, all the medical testing and worry that I had caused me to fail all my courses, which I found out the same day I was diagnosed. I can definitely say that was the worst day of my life to date as I've never felt so depressed and hopeless. My girlfriend brought over some of my favorite junk food and she essentially spent the evening comforting me. My new doc put me on azathioprine which still requires reg. blood monitoring and is encouraging me to try anti-TNFs however I'm reluctant to get on Humira or Remicade due to the fact that I can't stop once I'm on it and the idea of self injections or IV drip for hours a month, the fact that I won't be on my parent's health insurance in a few years, etc. So right now I take 150mg Azathioprine and 5mg folic acid daily. I still have some pain and stool leakage everyday so I have to wear an always pad in my underwear which is not a big deal however it challenges the days that I can swim which I love doing in the summer. Besides the butt pain I'm pretty well pain free. My stomach hurts occasionally it seems when there's nothing in my stomach however I'm not sure what this means as it's kinda new and I haven't been able to see my doc at home since I'm away for school. Also feel dizzy sometimes which is always new so hopefully I can get some answers when I'm home next week for Christmas
this is my first post on CF so I'm looking forward to chatting with you all and getting through this unfortunate disease as a team!
See you on the forums!
-Matt
My name is Matt, I'm 19 years old and currently studying engineering in university. My journey to diagnosis started a rather cramped one. Terrible trouble having a full BM, bloody stool, etc. I knew something was obviously not right but I let this go on for a year or more without telling anyone. I wished more than anything for it to go away so I wouldn't have to see my doctor (somewhat of a fear of medical procedures) however this never happened. One night while attempting to use the bathroom my dad overheard me swearing on the toilet out of frustration. He told me I needed to see our family doctor so I did just that. First visit (week of my 19th birthday) my doc gave a rectal exam and I was told I had some pretty bad fissures and scarring. He prescribed Cipro and Flagyl. As we all know, Flagyl and alcohol don't mix, therefore, I couldn't even celebrate my 19th birthday with a beverage (or 10). He also told me the Restoralax should help with the BMs. After weeks of trying different med combinations, he told me that all the trials were for nothing, as there was pretty much no progress in the healing down there. He sent me to see a gastro specialist who happened to be somewhat of a family friend. We talked and did an exam and we set up an appointment for a colonoscopy. The day before the exam was downright awful. Having to drink the PEG mix was one of the worst things I've had to do as I didn't even finish it. I was sedated for my colonoscopy but I do think I remember waking up for a moment feeling a little drunk, looking at the screen and asking my doc if I did an okay job at cleaning myself out but then, nothing. After I woke up my doc came to tell me that my colon was inflamed and that I had fistulating crohn's diesease around my rectum and at the start of my large intestine (ileum?). I was pretty depressed about the news, in fact, all the medical testing and worry that I had caused me to fail all my courses, which I found out the same day I was diagnosed. I can definitely say that was the worst day of my life to date as I've never felt so depressed and hopeless. My girlfriend brought over some of my favorite junk food and she essentially spent the evening comforting me. My new doc put me on azathioprine which still requires reg. blood monitoring and is encouraging me to try anti-TNFs however I'm reluctant to get on Humira or Remicade due to the fact that I can't stop once I'm on it and the idea of self injections or IV drip for hours a month, the fact that I won't be on my parent's health insurance in a few years, etc. So right now I take 150mg Azathioprine and 5mg folic acid daily. I still have some pain and stool leakage everyday so I have to wear an always pad in my underwear which is not a big deal however it challenges the days that I can swim which I love doing in the summer. Besides the butt pain I'm pretty well pain free. My stomach hurts occasionally it seems when there's nothing in my stomach however I'm not sure what this means as it's kinda new and I haven't been able to see my doc at home since I'm away for school. Also feel dizzy sometimes which is always new so hopefully I can get some answers when I'm home next week for Christmas
this is my first post on CF so I'm looking forward to chatting with you all and getting through this unfortunate disease as a team! See you on the forums!
-Matt
