Hey everyone my name is Jesse I am 22 and live in Austalia, I just recently got diagnosed with Crohn's disease October - November this year 2012.
I just wanted to introduce myself to you all since I have read posts about all your storys and get the sense of friendlyness and understanding from all the people in the same boat as us and wanted to join the ranks in this helpful community.
My Crohn's story basically started early 2012 when i felt constantly weak stomached and barely had an appetite, I would put off going out with friends and when ever I was around them they would always tell me too man up and come party or stop acting like your sick with a little stomache ache.
On the family side of this, they just thought I was depressed and kept telling me to get councelling.
By the time July came I was getting the most chronic abdominal pain which turns out was my ileum, I couldn't eat at all around this time, constantly tried to sleep but failed through pain and had a huge lack of energy and motivation. I lived like this until late October.
Late October came and i had lost just over 12 kg since July (26 pounds I believe) my face was as white as a ghost and extremely gaunt, my ribcage poked out and i basically looked anorexic at a weight of 48 kg (105 pounds). I started feeling dizzy all the time and started throwing up, i had constant diarhoea which had blood in it.
At the time of all this my girlfriend of 2 years who I lived with also dumped me because I became too dull for her which just made me feel the loneliest I had ever been. Finally I decided to go to the emergency at the local public hospital after spewing up and passing out on the ground of my apartment.
I was in hospital for 2 weeks, turns out my ileum had severe ulcerations, scar tissue and severe flaring. I had 3 teams of doctors coming and seeing me within my hospital stay which included the medical team, gastrologists and the surgeons started seeing me after my ileum was taken out via keyhole surgery.
Also whilst in hospital for the 2 weeks I had an emergency CT scan done at night after I had a huge spasm breakout where i started sweated prefusely and shaking nonstop with a heart rate of 170bpm. The CT scan showed a small infection in my ileum called bacilli I believe. I was started on a drug called Piptaz to get rid of this.
I then had a Endoscopy and Colonoscopy which finally made the diagnosis of Crohn's Disease a few days later I had surgery to remove my ileum via keyhole surgery. After the surgery was done there was a lot of intense pain though i had a button to push for morfein which was great! though a blood vessel had broken and i had chronic blood diarhoea (sorry if this is graphic) and had 6 blood transfusions in two days to get my hemoglobin levels stable (I can barely remember these two days since I was under borderline rating in HB level - hemoglobin).
I got released out of hospital a month ago today with the drug Mercaptopurine which breaks down in the body and creates 6mp i believe, the hospital pharamacist also gave me vitamin D supplements called Cholecalciferol and Iron supplements called Ferrous Sulfate.
I am so happy to be in remission at the moment and to feel normal after this torturous year of pain, though i feel so stupid for not going and seeing the hospital earlier.
At the moment I am on a high protein/high energy diet to recover some of the weight I had lost and I have put 6 kgs back on (13 pounds). If i get a flare up i am to go on a low fibre diet.
Anyway I have gotten way too carried away with this behemoth story when really I just wanted to say hello to all of you who read this and who understand Crohn's or any other Inflamatory Bowel Disease IBD.
I feel your pain and am here to talk with if you would like because i know how isolated and alone you can feel.
Welcome! Read your posting with great interest. This is a a great site and you are correct...you will make new friends and get everyone's point of view and opinions. It's very interesting here and very helpful at the same time.
I myself have ulcerative colitis, for a little over four years, and right now I'm in remission, but there are spring and fall flares that can cause havoc in anyone's life. It controls our lives, when we go out, if at all, and for how long. we just do a day by day thing. All part of the IBD diseases. I know a few with Crohns and you have described it graphically, but very honestly. I like the honest part...don't pull any punches...honest is the best, and we all learn from it as well.
We all certainly welcome you here, and look forward to any future posts you might have. So happy you're "on the road" to a better day to day experience. That's what we all hope for with any IBD. Bottom line is, we deal with the cards we're dealt, some good hands and some not so good, but again, we learn to deal with it, not only from our medical authorities, but our friends here. So helpful.
Look forward to hearing from you again, and hopefully it will be all positives. If there are other "bumps", we all have to learn to deal with them and move ahead.
I understand the hell you went through Jesse and what a bitch it is. My life with Colitis for 28 years now has been a roller coaster ride. Albeit my colon is removed now and I'm living with a J Pouch. But that too is a compromise that I'm unhappy with. I had Ulcerative Colitis though, so they could pull that maneuver in my case since UC only attacks one part of your body unlike Crohns which attacks in a checkered pattern. Doctors forever misdiagnose these 2 diseases and keep mistaking one for the other. In my case though I'm sure they got it right. I don't know what to tell you man. It's a rough ride. If I still had my colon attached to me, I'd be happy to try all the alternatives I've seen on the internet. Believe it or not the internet wasn't even around when UC hit me. I don't know if it would work for Crohns, but one thing I would have definitely tried for UC is a fecal transplant. It might sound nasty but so is colitis, so it's an even trade off and worth rolling the dice with. At least you can find lots of alternatives now by just searching on the internet. I'd go that route if I was you since medical science doesn't seem to have all the answers to fight colitis with now.
I guess we just never know what is going to happen on our journey in life, but what you do realise is (when ill health presents itself,) just how wonderful and blessed it is just to be able to get on with life.
Thanks. Remember we're all here to support each other on our good and/or bad days. There is nothing like friends who wish for your good health and happiness. We are always here for each other and that goes such a long way.
Merry Christmas, Happy Holidays, Happy Hannakuh(sp) etc. etc. Whichever gives you the most comfort is your path to follow.
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