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The last year and a half...

Hi everyone! So happy I found you.
This is my story.. Last April (2011) I was on a cruise and had cankers in my mouth. Annoying but not unusual. A few days after returning, I got hemroids. Also not unusual as I've had them removed before. Days went by and I started getting cramps across my lower stomach. Went to the Dr. who said looks like thrush and hemmroids and gave me meds..Few days later things got worse and I went to the ER and they did x-rays and ultra sounds but nothing. Also was waiting for appointment with a surgeon. When I saw him he said he didnt understand why the hemmroids were causing me soo much pain and set up a colonoscopy for the following week. By this point i was really sick, not eating, throwing up, and in extreme pain. At this point i'd been lying on the couch for three weeks. It came to a head the day before my colonoscopy I was so sick we called an ambulance as I could no longer handle the pain. I was admitted and heavily medicated. Had the colonoscopy the next day and was told i had Crohns. It started in my mouth and ended in my anus which he said where just withering in ulcers. He was keeping me in the hospital and going to tackle it with antibiotics and pred, IV fluids, no food.

A week went by and I didn't improve and then at midnight a nurse saw me and said somethings not right, called the surgeon and i was rushed into emergency surgery. Everything inside me crashed. I thought I was going to die. I had gone septic. Three holes in my bowel.
I woke up in the CCU with an ostomy and 21 inches of my large bowel removed. The surgeon said it was the worst case of crohns he had ever seen. (he also has crohns) Another hour and i wouldn't have survived he said. That nurse had saved my life.

I was in the hospital from May 24th until Dec 23rd with 10 blood transfusions, developed a fistual beside my ostomy (which he reversed after only two months when he took out my gallbladder), multy infections from the fistula, blood clots, a stent put in my bile duct, TPN most of that time. Also lost 50 pounds and all my muscle mass. Literally had to learn to walk again.

Jan-Apr 2012 in and out with flare ups and a fistula that just wouldn't quit!
In May as a last resort he said we are going to have to do surgery again and take out the fistula and put in another iliostomy. Two days later he had to go back in again and removed 6 more inches of my bowel. I was in the hospital till the end of June.

Been home and hospital free 3 months now! With the iliostomy. I'm on too many drugs. 30 pred, 25 fentenyl patch, dilaudid, (probably addicted), and tramadol. Plus various anxiety pills and sleeping aids... Going to have my iliostomy reversed in November (6 months)
Phew!! thanks for letting me get that out! Even if it was shortened immensely its still a long story.!!
Reading all your posts really helps because I know I'm not alone in this horrible desease. I still shake my head at times and say "what the heck just happend!!??"

I'm 48 and mom to 2 handsome men and Joe my partner.
Having the iliostomy doesn't bother me.. if I didn't have it, I wouldn't be here.. :)
 
Thanks AB for the welcome :)
I've realized after reading many posts that I need to get more specific info from my surgeon as I don't know proper names of what has been removed!
I'm doing okay other than too many drugs! My biggest complaint is I'm always shaking. But the Dr. said when your body has had so much trauma its normal. I'm also being investigated for MS :(
I also have alot of pain and itchy on my stoma, so I will post that in the stoma forum.
Thanks again for the welcome. It means alot
 

David

Co-Founder
Location
Naples, Florida
Hi Susan and welcome to the forum!

Wow, what a story! You've been through so much, you poor thing :(

*hugs*

When you say you're always shaking, is it just your hands or your whole body?

Have you by chance had your vitamin B12 level tested? People with Crohn's are commonly deficient.

All my best to you.
 
Hi David! Thanks for the welcome!

Yes, I've been B12 deficient for, oh gosh, 15 years or so, and get shots monthly. When looking back I guess I had flare ups but didnt think about this desease. Bouts of diahrea.

When I was in the hospital this year I felt weak and shaky. the surgeon had a physiothrapist come in and evaluate me. I had definate weakness all down my left side and still now my left leg shakes. I have shaking in my left hand and weakness not so much on the right.

I have spent the good part of the last 17 months in the hospital and I'm extremely nervous about going back for my reversal...but thats another thread!!

Thanks again David :)
 
Hi David
I have no idea about numbers! I go back to my Dr in a month. I will be sure to ask her as I just had blood work done. Vitamin wise I take a multi and omega 3-6-9, also vit D. Anything I'm missing?
 

David

Co-Founder
Location
Naples, Florida
If you're deficient in any vitamins or minerals due to Crohn's disease, chances are you will not get what you need from a multi. Thus the importance of getting your various levels tested. :) That way you can also adjust dose and sometimes delivery mechanism to make sure you're getting within optimal ranges.
 
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