Posted 11/27/2005 10:05 PM (GMT -7)
My name is Jen, and I'm 32 yrs old. I was officially dx'd with crohns disease in 2003, but had seen a gastrodoc back in '98 because I was soo sick. I dropped down to 98lbs, had a fever for about 6wks straight that left me weak, dehydrated and couldn't hold any food down, had blood in my urine all sorts of things that they started testing me for everything and when I went to see that GI doc, he basically said I had all the symptoms of crohns. Thing was he wanted to do a colonoscopy and I was super scared so I never went back. I guess you could say I went into remission, other than some frequent chest pains that left me panicked, they said "your fine, it's just anxiety" Finally in 2003 after a series of unfortunate events, I ended up in the ER where they finally dx'd me.
Wow I suck at trying to explain myself, hope you can follow along and understand it hehee. Prior to 2003, I was seeing an internist for anxiety related problems and one particular night, I had a crushing pain in my chest along with a horrible stomach ache and was dizzy so my ex-husband took me to the ER... I was assuming crohns was rearing its ugly face, but they weren't concerned with that, they saw something on the monitor and with my symptoms believed I was having a heart attack. They did an EKG and it showed up abnormal, but when the blood tests came back, it showed everything was ok. They sent me home with some prevacid for the 'heartburn' and told me that because my EKG was abnormal it didn't mean anything dangerous. One ER doc said, it could've been abnormal due to the fact that I drank pepsi like water (caffiene sp?) and had smoked a cigarette before I went in and he also said anything can trigger it to go haywire such as stress too. Nicotine and caffiene could definitely make it go haywire. SO I QUIT that night, I didn't pick up another soda or a cigarette again mainly because of the fear I had that night..
So, ok, in january they put me on high doses of prednisone and pentasa along with some pain medicine and by August I had 3 surgeries to my tummy, a blood transfusion and picc lines, subclavial lines etc.. all crohns related cept they did take out a cysts on my ovaries...
But now jumping to this year, please bare with me.. trying to cram it in a short post... after trying new drugs to keep crohns at bay like remicade etc.. I went to Las Vegas for a convention with my son and ended up in the hospital down there :( Again, tho this time they did an ECG? and an EKG? because of the symptoms, racing heart (theres a name for it cant remember it tho) stomach pain and upper chest pain they again thought I might be having a heart attack. Blood tests came back normal.. But this time the ECG/EKG showed I had a delay of some kind, and the person who read it had typed "consider ischomisis" I read up on that and its terrifying! When they say consider, do they mean rule out? or do they mean really consider~ call cardiologist right away? I would have never known about that test and its feedback, because I had to get all medical records from everyone for SSI Disability. I'm kinda worried because I know someone in this forum knows what Im talking about and if you do, please put it in simple candy coated message if you think I need to see a cardiologist... I can't afford to hear negative things, but at the same time I need to know if I should take action because they never told me? I'd be really upset if they sent me home without that knowledge if it was something to worry about. Im naive when it comes to what doctors do.. In his case he was just addressing the more serious matter, that I had an obstruction and would have to have surgery... so I guess what I'm asking is if no one has brought it up, my regular docs who have seen it... gah. I can't even figure it out how to even type it... I mean doctors only treat you for what is more crucial at that time, and if I'm guessing correctly they assume I must know about it and am doing somethin about it... or its not an issue worth addressing...
Its been laying heavy on my shoulders as to what I should do. I'm worried because of what I have heard about this anterior ichmosis sp? I feel like I'm falling apart and with complications from my disease and now this, I am lost. *crying* So much has happened in the past 2 years that I feel like Alice in Wonderland spiraling down into some deep dark hole...If this is true that I have a heart condition, it makes an aweful lot of sense, because some of the symptoms of ischomisis mimick some crohns symptoms, and ,y doctors might have been not properly adding things up, I go in for a cough, and they say its part of crohns, I go in for muscle/joint pain and they say its crohns.. I have endometriosis and they say its possibly related to crohns... I wish they would just start over from scratch, without knowing I have crohns and listen to me and whats going on... it could mean life or death very quickly. And I would be haunting them doctors that treat one thing at a time...It should be what
But I am growing weary and I'm tired of it all. Although I'm startin to lose my faith, I do pray for you all here dealing with the most important ,life threatening, sentimental thing of all.. the heart.
P.S. If I don't respond right away its prolly because I'll be afraid to see what you all might have to say about
this post, or I'll come back here when I have enough courage to read...Either way I'm gonna say it right now, THANK YOU! for reading Im extremely grateful to anyone who will respond without the horror stories or the what can happens..
Balance of Nature
Life can be like a passing storm. It can be devasting & destructive but can also show you things that you would have never seen if only the sun shined. Storms eventually pass & storms will definitely come again. Just try & rebuild what it's destroyed in the meantime, because life does go on. Be thankful for the sun & the rain, for in this life you need both. You cannot appreciate one without having the other.. ~Nature's Spirit