Hello I guess.
Well, I don't know how to start this. My name is Moe and I was diagnosed with Crohn's a year ago. I'm now 18 and starting uni next fall (yay!). I wanted to share my story for two reasons. The first is so that people that could relate to this story don't feel alone in this world anymore. And the second is because I wanted to get this frustration out of me. I'm from Saudi Arabia (yeah go figures) and I'm quite fed up with feeling so alien.
As an overweight child I always had problems with my immune system. Eczema at birth that deformed the left side of my face. Asthma, also at birth, crippling me from any activities that I found enjoyable. I always imagined myself as a caterpillar waiting in my ugly cocoon to become a butterfly.
When I reached my early teens both the Eczema and Asthma symptoms wore off. I was finally becoming that butterfly!! I enrolled in a gym and started working out like crazy. I needed to be fit and so I became. I lost 30kg and was happier than ever. I enrolled in all sports clubs and made it to the school's soccer team, I was even nominated for captain. I made such a good athlete and was able to be good at almost any sport.
Goodbye antibiotics, goodbye steroids I said.
My story with Crohn's began two years ago. One day, I noticed some skin tags forming in my anus area. As days go by I encountered pain coming out of these skin tags. I went to a surgen and he told me that I either have hemorrhoids or a perianal abscess. It turns out that it was a perianal abscess (don't know how he made this assumption). He told me that the abscess may have been caused by an ingrown hair that got contaminated. So I had a drainage surgery done and went through a couple of pain free months until another abscess formed, which drained itself (it literally blew up). And then when all seemed well, another abscess formed, and drained itself. I lost count of how many surgens I met, and they all had the same diagnosis, ingrown hair. I think it was luck that led me to a GI doctor. No one referred me nor suggested a GI. Though I went to one out of despair. Surgens were getting me nowhere! And last time I checked the anus was part of the digestive system (or I suppose). So I went and my diagnosis was finally confirmed to Crohn's disease. Doctors say that it is common not to show all the symptoms of the disease. I didn't have any diarrhea, cramps, nor constipation. My only symptom was the abscesses that then formed fistulas. Some doctors think that my weight loss was also a symptom, but that would mean that I worked out for nothing, and I don't want to think that. My colonoscopy showed some horrible results, I had fistulas all over my intestines and the dangerous part of all was that I had large inflammations in the Ileocecal valve.
My course of treatment wasn't that bad at first. I had two seton threads inserted and underwent biotherapy (infliximab) every two months. And it wasn't that bad because for a long time this was the first that I didn't feel any pain. I started out with Pred, which was a complete nightmare!! I gained A LOT of weight. My bmi now says that I'm obese. And because of the seton stitches I can't workout anymore. But my doctor switched me to Imuran now, my weight should be stabilizing anytime soon.
I encounter some excruciating pain sometimes where the seton stitches are located but it's better than nothing.
And I'm now waiting for the 11th of August to come so that I would see weither my second colonoscopy shows any improvements. I sure hope that I could get these seton stitches out and start working out soon.
I surely hate the seton stitches. Yeah they keep out abscess from forming but it's really hard to control my personal hygiene now. I feel so filthy all the time because of it. And it's really embarrassing sometimes. But I try my best. I shower 600 times a day. And change clothes double that number. I manage cause it's a term that I'll have to settle with if I don't want recurring abscess.
Anyhow, one thing I learned from these experiences is that to hold on no matter what!! Through all the pain and tough times, HOLD ON!! This will only make you stronger! There is more to life than some inflated bowel! You are not defined by your illness!! You will get depressed, you will be embarrassed! But remember to HOLD ON cause life is worth it...
I'm sorry if a rambled too much. And please excuse my poor English writing skills. Having it as my second language doesn't help that much. But truth be told, even my first language writing skills suck. I don't know why but writing just isn't my thing.
Thanks for reading this! And wish me luck on the 11th.
Till next time earthlings.
Goodbye.
Well, I don't know how to start this. My name is Moe and I was diagnosed with Crohn's a year ago. I'm now 18 and starting uni next fall (yay!). I wanted to share my story for two reasons. The first is so that people that could relate to this story don't feel alone in this world anymore. And the second is because I wanted to get this frustration out of me. I'm from Saudi Arabia (yeah go figures) and I'm quite fed up with feeling so alien.
As an overweight child I always had problems with my immune system. Eczema at birth that deformed the left side of my face. Asthma, also at birth, crippling me from any activities that I found enjoyable. I always imagined myself as a caterpillar waiting in my ugly cocoon to become a butterfly.
When I reached my early teens both the Eczema and Asthma symptoms wore off. I was finally becoming that butterfly!! I enrolled in a gym and started working out like crazy. I needed to be fit and so I became. I lost 30kg and was happier than ever. I enrolled in all sports clubs and made it to the school's soccer team, I was even nominated for captain. I made such a good athlete and was able to be good at almost any sport.
Goodbye antibiotics, goodbye steroids I said.
My story with Crohn's began two years ago. One day, I noticed some skin tags forming in my anus area. As days go by I encountered pain coming out of these skin tags. I went to a surgen and he told me that I either have hemorrhoids or a perianal abscess. It turns out that it was a perianal abscess (don't know how he made this assumption). He told me that the abscess may have been caused by an ingrown hair that got contaminated. So I had a drainage surgery done and went through a couple of pain free months until another abscess formed, which drained itself (it literally blew up). And then when all seemed well, another abscess formed, and drained itself. I lost count of how many surgens I met, and they all had the same diagnosis, ingrown hair. I think it was luck that led me to a GI doctor. No one referred me nor suggested a GI. Though I went to one out of despair. Surgens were getting me nowhere! And last time I checked the anus was part of the digestive system (or I suppose). So I went and my diagnosis was finally confirmed to Crohn's disease. Doctors say that it is common not to show all the symptoms of the disease. I didn't have any diarrhea, cramps, nor constipation. My only symptom was the abscesses that then formed fistulas. Some doctors think that my weight loss was also a symptom, but that would mean that I worked out for nothing, and I don't want to think that. My colonoscopy showed some horrible results, I had fistulas all over my intestines and the dangerous part of all was that I had large inflammations in the Ileocecal valve.
My course of treatment wasn't that bad at first. I had two seton threads inserted and underwent biotherapy (infliximab) every two months. And it wasn't that bad because for a long time this was the first that I didn't feel any pain. I started out with Pred, which was a complete nightmare!! I gained A LOT of weight. My bmi now says that I'm obese. And because of the seton stitches I can't workout anymore. But my doctor switched me to Imuran now, my weight should be stabilizing anytime soon.
I encounter some excruciating pain sometimes where the seton stitches are located but it's better than nothing.
And I'm now waiting for the 11th of August to come so that I would see weither my second colonoscopy shows any improvements. I sure hope that I could get these seton stitches out and start working out soon.
I surely hate the seton stitches. Yeah they keep out abscess from forming but it's really hard to control my personal hygiene now. I feel so filthy all the time because of it. And it's really embarrassing sometimes. But I try my best. I shower 600 times a day. And change clothes double that number. I manage cause it's a term that I'll have to settle with if I don't want recurring abscess.
Anyhow, one thing I learned from these experiences is that to hold on no matter what!! Through all the pain and tough times, HOLD ON!! This will only make you stronger! There is more to life than some inflated bowel! You are not defined by your illness!! You will get depressed, you will be embarrassed! But remember to HOLD ON cause life is worth it...
I'm sorry if a rambled too much. And please excuse my poor English writing skills. Having it as my second language doesn't help that much. But truth be told, even my first language writing skills suck. I don't know why but writing just isn't my thing.
Thanks for reading this! And wish me luck on the 11th.
Till next time earthlings.
Goodbye.
I will certainly be keeping fingers crossed that the 11th brings good news for you! 