Hi everyone. My name is Jen. I want to start by saying, i have been reading posts for months now and have just not had the courage to jump in!! In part this is because this is all so new to me.
I have been dealing with bowel 'issues' for about 15 years now. (doesn't make me sound so new to this!! lol) i am 28 now, and finally been diagnosed with Crohn's Disease. CD sucks! for the last 3 years, things have been pretty trying on me and my family.
I have been through 2 bowel obstructions, a few adhesions, and strictures. I have been in a 3 year flare, full of ulcers from throat to ileum.
To top all of this off...about 2 yrs ago, i started having massive ulceration of my esophagus. They bleed, they constantly hurt, predinisone wont knock them out, and i can almost never eat.
I have been diagnosed with Crohn’s disease of the esophagus or Crohn’s esophagitis. I have been told it is diagnosed in less than 1% of Crohns patients.
I should slow this down for a second, cuz i havent explained, i havent had a minute to breathe through any of this. i know 3 yrs may seem like a long time, but i am still an infant to crohns. i was only diagnosed as of May this year. While i am thankful for the diagnoses, and the hope of getting better soon...im so scared. everything has been going so quickly since the diagnoses, and its also compounding quickly. "you have crohns, we will start this treatment, you will get better soon" "ok, maybe not, you have crohns of the esophagus, we have to try this" "ok, maybe this will work" "do this" "dont do that" MY HEAD IS SPINNING!!!!!!!!!!!!! (Quite literally due to dehydration! lol)
i was only within the last 8 weeks prescribed 4000mg of pentasa a day, and a prednisone taper starting at 80mgs a day (down to 15 today). the ulcers are still there, and hurt....SOOO badly. if anyone else who reads this has them, you know. it feels like i have just chewed up and swallowed a bunch of razor blades every time i swallow. i get to where i am afraid to swallow my spit...
My friends and family have been wonderful. Though they definately have thinned. nobody wants to b friends with the 'sick one.' i have truly found my real support system. But they dont understand how this is always on my mind. how i am constantly in pain, or uncomfortable. how i am always scared. What else is coming?!?!?!?!!
So i have gotten the courage to turn to all of you. I will be started on remicade very soon. the hep panel was just sent out. when that comes back, my first infusion starts. im scared as hell (pardon the french). i dont know what will happen...ive already had a med burn my veins! what will this one do to me? Plus i am experiencing everything i shouldnt be with pentasa, and thats scary but everyone is brushing me off now. My guard is on full alert...its always on my mind...and sometimes i pity myself I know we have all been through similar and yet oh so different stories. I am afraid though. I would love some feedback. Whats next?????!
Thanks all for your time. And even though i havent jumped in until now, thanks to all of you for your posts. you have helped me more than any other site by far.
~Jen-Bug~
I have been dealing with bowel 'issues' for about 15 years now. (doesn't make me sound so new to this!! lol) i am 28 now, and finally been diagnosed with Crohn's Disease. CD sucks! for the last 3 years, things have been pretty trying on me and my family.
I have been through 2 bowel obstructions, a few adhesions, and strictures. I have been in a 3 year flare, full of ulcers from throat to ileum.
To top all of this off...about 2 yrs ago, i started having massive ulceration of my esophagus. They bleed, they constantly hurt, predinisone wont knock them out, and i can almost never eat.
I have been diagnosed with Crohn’s disease of the esophagus or Crohn’s esophagitis. I have been told it is diagnosed in less than 1% of Crohns patients.
I should slow this down for a second, cuz i havent explained, i havent had a minute to breathe through any of this. i know 3 yrs may seem like a long time, but i am still an infant to crohns. i was only diagnosed as of May this year. While i am thankful for the diagnoses, and the hope of getting better soon...im so scared. everything has been going so quickly since the diagnoses, and its also compounding quickly. "you have crohns, we will start this treatment, you will get better soon" "ok, maybe not, you have crohns of the esophagus, we have to try this" "ok, maybe this will work" "do this" "dont do that" MY HEAD IS SPINNING!!!!!!!!!!!!! (Quite literally due to dehydration! lol)
i was only within the last 8 weeks prescribed 4000mg of pentasa a day, and a prednisone taper starting at 80mgs a day (down to 15 today). the ulcers are still there, and hurt....SOOO badly. if anyone else who reads this has them, you know. it feels like i have just chewed up and swallowed a bunch of razor blades every time i swallow. i get to where i am afraid to swallow my spit...
My friends and family have been wonderful. Though they definately have thinned. nobody wants to b friends with the 'sick one.' i have truly found my real support system. But they dont understand how this is always on my mind. how i am constantly in pain, or uncomfortable. how i am always scared. What else is coming?!?!?!?!!
So i have gotten the courage to turn to all of you. I will be started on remicade very soon. the hep panel was just sent out. when that comes back, my first infusion starts. im scared as hell (pardon the french). i dont know what will happen...ive already had a med burn my veins! what will this one do to me? Plus i am experiencing everything i shouldnt be with pentasa, and thats scary but everyone is brushing me off now. My guard is on full alert...its always on my mind...and sometimes i pity myself I know we have all been through similar and yet oh so different stories. I am afraid though. I would love some feedback. Whats next?????!
Thanks all for your time. And even though i havent jumped in until now, thanks to all of you for your posts. you have helped me more than any other site by far.
~Jen-Bug~
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