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Crohn's Disease Forum » Your Story » A Little Nightmare


07-20-2017, 01:16 PM   #1
jeallen25
 
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Location: Philadelphia, Pennsylvania
A Little Nightmare

I got diagnosed with Crohn's 3 years ago. It was a hard diagnosis to get. My symptoms started in the busiest time of my life, and the most rewarding. I had a great job working at a call center, making really good money, I lived with awesome roommates. I remember the first day I knew something wasn't right. Granted I have always been the kid with tummy problems... upset stomach was my normal and I didn't think anything of it but things changed the day I was on the phone at work helping a customer with a sudden urge to GO! It was different, but if you've ever worked in a call center you can't just get up and go to the bathroom. I tried to fix the customers problem as fast as I knew how but upon standing to go... my body had different ideas... Thankfully I was not that far from a bathroom and desperately tried to clean up to no avail. It was then I knew I had to go home, and yet started a whole series of events.

I was always in pain, my energy went to nothing, and I knew something was wrong so I went to the ER. This is where they found inflammation and sent me to a GI. Who right away sent me to have a Colposcopy and Endoscopy done. It was heart breaking when he told me he didn't find any polyps or anything wrong just lots of GERD but I was still hurting with a new symptom... throwing up. It got worse and worse till I finally couldn't stand it and went back to the ER which they found yet again more inflammation in my intestine and referred me to my GI. By this time I had dropped 30lbs, and was calling in nearly every day for work, thankfully my boss had me fill out a medical leave, and then the family act before I got even sicker.

I went back to the GI and he decided it is possible it could be my gallbladder and took me for testing that. That test was painful, even though it wasn't supposed to be. I cried the whole thing, and to make matters worse I am a very hard stick so they had to send in an ER nurse with one of those special vein machines to even get an IV in me. (Testing was done in a hospital) After this, they ruled out that my gallbladder was not functioning properly and sent to meet with a surgeon who scheduled surgery. I warned them I was a hard stick, that my veins hate people but the day I showed up to the hospital and was to get IV's they poked me 17 times (after 5 using lidocaine) to no avail and there comes my first pic line and waiting another 2 days for it.

So I have this surgery all is well, pic line taken out and sent to stay with my mom for 2 weeks to recover. I still don't feel good though, I'm still throwing up, and my stomach muscles are not fixing themselves. So back to the ER we go. Come to find out I had a hernia in my belly button and my intestines were already trying to make an escape. So not even a week later back to surgery to fix it. So 2 surgeries in a months time. I was overwhelmed, sick, sleeping days away and still throwing up. It wasn't till 50lbs lost did my GI send me to a blood doctor, which came back that something was wrong. My markers all indicated some kind of inflammation in the body.

This being said they decided to do an MRI being as I couldn't hold down a camera pill or anything at that moment. This is when they found all the scarring and inflammation starting in my Jejunum (which causes me to throw up a lot) and in my ileum. It is minor right now, I'd hate to know what worse is, but this is when I went on the epic road of medications and my diagnoses. Along with a blood transfusion, two iron infusions, and banana bags...countless banana bags....

It was sad at first telling my friends and family. I had a few family members tell me that I needed a second opinion because I am fat (over 300) that it was impossible, that the reason I was always sick was my weight. I took their advice and asked another GI, as well as, my regular doctor who'd been helping me the whole way and they came to the same conclusion. The GI put me on Humira injections which I started right away and got better. I was so happy to finally get normal or well a new normal. I had to change my eating dramatically and got tested and found out I was allergic to Gluten so I cut that completely from my diet.

This being said the medication has it's ups and down. Right now I'm in the middle ground where I am not having flares (as often) and not near as bad. I don't have a regular medication currently and have been living on the (just in case) medication and an antispaum medication for my stomach because eating upsets the jejunum every time. I also just move from Texas to Pennsylvania to be closer to my friends and experience a different part of life so I have no doctor as of yet.

Support is hard, I was given this site through a support site that I have on Facebook from my local town I used to live in Texas. I know even my friends who I live with don't really understand although for the first time these last few weeks have gotten to see the harder side of Crohn's which for me is throwing up and having to sit on the floor of the bathroom risk fainting. I know I still have friends who believe that if I just eat a certain way I will be cured or if I lose all my weight I will get better. I just smile and pat them. It can drive me crazy sometimes.

But that is me... I'm sorry if I rambled. I will never forget though walking into an ER or doctors office in a large amount of pain, or even just feeling crappy. I always smile and countless times they always ask, "how can you smile if you are hurting so bad?" (sometimes nicer than that) and I just say "If I wasn't smiling I would be crying and who benefits from that." I would rather be happy than to mope (granted we all have our days) I'm here though and I know that my life is not going to be all sunshine and rainbows, that I am sick that I will never not be sick, that my condition can get worse or better at a drop of a hat, but I do cherish life more. I enjoy the time that I have and managing stress for me is a huge thing that keeps my flares down. So although I have my days, I take it one at a time.
07-20-2017, 03:12 PM   #2
ronroush7
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Welcome. You have found a good place to come. I like your attitude about always smiling and also taking one day at a time.
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