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My battle with crohns since age 6

Hi, I am new to this forum and wish I would have started it earlier. My name is David and I'm now 24 yo. I was diagnosed with crohns at age 6 and have been battling it ever since. I think I have been on every medication out the it feels like from heavy doses of prednisone to tons and tons sulphasalzine. Unfortunatley these only ever really masked the symptoms. I grew up with very little energy and no desire to chill with friends or do sports. My appetite was very poor and I just kept losing weight. I don't remember too much of the symptoms when I was in elementary but in junior high I struggled but kind of just kept going. I started tube feeding at home with nutren 1.5 at age 12. This helped quite a bit with the nutrients part but never really did too much else. I managed to eat little bits here and there but was never a heavy eater. I always had diarrhea and was literally in the bathroom up to 20 times a day! In grade 11 I had a really bad flare up and the doctor told me to tube feed for 6 wks with no food at all in order to give my bowels a rest. I was on heavy medication at the time as well. After about three wks of new food I could literally smell bread from anywhere in the house lol and somehow was fascinated with the food network such as Jamie Oliver lol. My crohns was ok through grade 12 but I had a lot of anemia and really low hemoglobin levels. For the next couple years I just dragged on and had good days but def a lot of bad days :S then in April 2011 I was working at the hospital as a lab tech and my supervisor advised me to go and see my doctor who also worked there as I was looking very pale. I did and they hooked my up to blood transfusion and scheduled a colonoscopy the same day. Unfortunately I was not very cleared out so they did another one the next day which set off everything to come. After my second colonoscopy, around midnight I noticed my testicles were very swollen and the my chest had a rice krispie feel to eat. I called the nurse who got a surgeon and they did a stat CT scan and noticed there was a puncture in my colon and air was releasing all through my body cavity. They performed a stat surgery that night and I woke with an ileostomy. I felt a million times better after the surgery and wasn't depressed at all about the ileostomy. I knew it was necessary. They took out my entire colon and left my rectum. After 5 days of recovery I was sent home and enjoyed a symptom free life with my girlfriend and got married nov 10, 2012. Everything seemed wonderful until the night of Jan 6, 2013. I woke up in the middle of the night and felt something drop into my pelvis. My wife and I drove to emergency that night and they opened me up again and noticed a perforation. This caused massive infection and they currently have me on some heavy antibiotics. I was rushed down to ICU on the sunday as my lungs collapsed and pleural fluid leaked into my cavity. I was on 200% oxygen as I could hardly breath and they placed a chest tube on each side of my body. This helped get rid of the fluid. I was in ICU for 5 days and I'm now in recovery hoping to leave Jan 28 as this is they day there stopping my antibiotics. I have had many people praying for me and I have def broken down a few times here. My wife has been my inspiration and she has never left my side. She's my guardian angel and I love her so much. If anyone would like to chat please do because it's nice to have support and to talk about things. Thank you for reading my story. Could luck with your battle :)
 
Wow what a story. I'm so sorry to hear all that you've gone through. I'm glad you were blessed with a good wife. I pray you'll be able to leave when you want to and this disease stays at bay for the foreseeable future.

We'll be praying for you too,
Farmwife and Farm Girl:rosette2:
 
Congratulations on the recent wedding! I'm so sorry to hear about all of your problems you've had. It is so nice to have someone that will stick with you through anything. You have found a great place to come for support!

I hope you keep getting better every day and have a speedy recovery.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum.

I am sorry to hear that you have had such a tough time of things, I will definetly be hoping you can be getting home soon and on the road to getting better. How has this op affected things with your ileostomy? Had you been on any meds for hour crohn's before this happened?

Sending lots of hugs and best wishes your way.

AB
xx
 
My son has Crohn's. He's 9 and was also diagnosed at 6.

You're definitely a fighter. This disease is horrible and as a "healthy" person I doubt I have half the courage you and my boy have.

Keep fight'in man--we'll be praying for you to get better!!

God Bless you and your family!
 
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