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.View Thread
Sorry to hear about your 2 year flare up skee, i know what it feels like and its the worst, it would especially be hard on you with a son too care for whilst going through this struggle.
The only time I have heard doctors say "suspicious crohns" was before i got a colonoscopy when they weren't 100% sure that it was crohns but most related to crohns - since there is other Inflamatory Bowel Diseases (IBD's).
I think this has to do with doctor jargon with the word suspicious, its just not 100% until you have had the test that can diagnose the problem.
But then again im not really an expert just putting my 2 cents in and don't understand why the doctor said 2% of crohn's patients have suspicious crohns.
Stay strong skee and don't give up!
Dietician has told me for flare ups (which are usually in my intestines) to follow a low fibre diet.
* Chew all food well. If a food cannot be thoroughly chewed, it should be avoided. Cooking your food well can sometimes make it easier to chew.
* Avoid any food that is tough and/or stringy eg. tough gristly meat
* Some people find that in order to avoid symptoms they need to have soft/puree foods and/or nutricious fluids only.
Why reduce fibre intake? For a healthy person a high fibre intake is good for keeping bowels healthy. However in people at risks of blockages it is necessary to limit the amount of food residue passing through the bowels.
Some foods that contain fibre: fruits, vegetables, wholegrain/wholemeal breads and cereals, nuts and seeds, legumes - lentils, beans etc
Sorry this reply got long and out of hand =/ I guess go really plain with foods - change wholemeal bread to white bread. Hard vegetables to really steamed soft vegetables. Brown rice to white rice. Crunchy peanut butter.
Also don't smoke you have 65% more chance to get flare up from remission and smoking in flare ups just make it a whole lot worse, trust me.
I really do wish you luck Sorry if this advice has nothing to do with your type of crohns
I'm sure other members can add to this discussion alot more helpful stuff then myself.View Thread
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.