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Crohn's Disease & Complications

Mar 08, 2015 2:07 PM

Anyone suffering from Crohn's Disease and/or is Complications

Mar 08, 2015 2:08 PM

I was diagnosed in 2012 after 14 years of symptoms and misdiagnosis. Anyone else have a similar tale?

Apr 02, 2015 11:36 PM

Dr stuffed up to the point of me ending up with necrotising Fasciitis (don't google it if you've just eaten) and i lost a butt cheek. 5 emergency surgeries later, 2 weeks down the track... I wake up in hospital with an Ileostomy. 1 week after that nurses are trying to get me to walk unaided (I still am missing a butt cheek and associated muscles at this point)... Idiots. After ending un unconscious on the floor next to the hospital bed (proved I couldn't walk thou) they decied to consult the lead Surgeon. He is astonished they even tried and told them there was a Huge chance i would never walk again.
3.5 weeks later i had regrown most of the butt cheek (thanks to a series of negative pressure dressings, ow, ow, ow, ow) AND I was walking with the aid of a frame. I was 28yrs old.

I am now 30yrs old, can walk without aid (balance sucks though), have a permanent Ileostomy named Paul, Chronic pain from Adhesions that play up, no Colon (there went most of my food allergies too), a neurological triggered atopic dermatitis that feels like ants under the skin and a pain threshold that terrifies Emergency Room people. Most pain scales are 1-10, i dont feel it until about 4 or 5 and am still 'functioning' at 10. After that I can't remember a darn thing but ER staff have told me that I am still lucid, answering questions and moving independently. The haven't found the point i lose consciousness yet. HOWEVER, they have found the point I go code blue and they have to fight to keep me alive O.o

Apr 02, 2015 11:38 PM

Whats the saying? "This is not the life I signd up for"...

Apr 03, 2015 3:24 PM

Ravynn, I don't think any of us signed up for this kind of life. But you definitely have more than the average. I have a friend with Crohn's and she's had several bad episodes requiring hospitalization. Her ileostomy was temporary, about 8 months. She had a brain aneurysm that almost killed her. But she had to go to a hospital and doctor in another state. Is there not a way to see another doctor out of your area? I'll be praying for you. 🙏🌼

Apr 07, 2015 8:25 AM

Actually i was lucky (very lucky) because chances of surviving necrotising Fasciitis is about 10% in healthy people, my parents were told my survival chance was 3% because of the Crohn's.
I currently have the best Gastroenterologist in Australia and I had one of the top 3 Emergency Surgeons operating on me. And they are both less than 2 hours from home. ☺
I am averaging a hospitalisation every 2 months currently, as i discover what will work, won't work and deal with having adrenal crisis' on a semi regular basis. That gives symptoms like fibro fog and i suddenly forget to drink enough (resulting in screaming - literally - abdominal pain) or even better, forget to increase my Hydrocortisone tablets to counteract the Adrenal Crisis and end up with an I.V. and being pumped full of liquid Hydrocortisone and tied to a darn hospital bed! 😕

Fingers crossed as i am coming up to the 2 month mark this week.

Apr 07, 2015 8:32 AM

Oh, I swapped from the Dr that i had being seeing as soon as all this happened in 2012. After giving all my specialists his contact details, so they could tell him he is an incredible twit.
Then nitwit that misdiagnosed me and cost me the butt cheek, lost his practice licence. That was the doing of the Anaesthesia specialist that spent the first surgery trying to keep me alive. I found that out nearly 6 months down the track.

Apr 07, 2015 9:21 AM

Ravynn84 I don't have Crohn's, nor do I know anyone that does. You have lived thru some very horrific things, for someone your age. You are a very strong person who God has a plan for you to be able to help others going thu things like you have. It makes me ashamed about how I whine about my problems, you are a inspiration to others. God Bless you and I will be praying for you.

Apr 07, 2015 3:21 PM

Ravynn, my heart aches for all you've had to go through. We'll all pray that you will not have to go back in the hospital at the 2 mo mark this time. I hope and pray you'll find a way to function without all the hospital trips. You are an inspiration as Weezie said! 🙏🌼

Jul 28, 2015 1:28 PM

FINALLY... Got past the 2 month mark without ending back up in hospital... 👍😃

Jul 28, 2015 1:49 PM

Woohoo!! That's great Ravynn84! I'm praying you have please hospital visits. I'm glad that doc lost his license. You should sue for compensation of all your past, present & future medical needs.

I had a made removed in 2010 that included 5 in 1 surgeries. He wanted to put mesh and some urethral gadget in me but I said no. He's now lost his license and has many lawsuits against him. I went on to develop other pelvic floor & organ problems that require treatment on & of. But it can't be pointed directly at him or if be suing for the same reasons. Mine are due to the sender size of the mass and endometreosis and scar tissue.

I hope & pray you'll have even longer between your problems. 🙏🌼

Jun 04, 2016 5:31 AM

Great news. I have avoided an emergency hospital trip for... Drumroll please..... 4 months.
Sure i am still having the same problems but now i have medications that work as long as i take them early enough.

Jun 04, 2016 8:52 AM

Ravynn84, that's awesome news!! I'm so happy for you and I pray that it continues for a long time to come!! {{{Hugs}}}💕🙏🏻🌻😊

Jun 06, 2016 2:08 PM

Yay!!! That is really good news! Hugs & prayers you continue this route!! 🙂💕🙏🌼

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