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Crohn's Disease Forum » Surgery » My emergency surgery


08-10-2013, 04:38 AM   #1
Stardust
 
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Join Date: Jan 2012
Location: The Hague, Netherlands
My emergency surgery

Hey guys,

I just want to share my experience from two months ago. Note: English is not my first language.

Once again i had a terrible flare-up from my Ulcerative Colitis, but this was the worst one so far, it lasted almost a month and got worse and worse. My weight started to drop heavily and I was tired and in pain one day. I still had to keep on working, but it was almost impossible, so on the evening of the 24th I went to the emergency. My doctor initially told me to wait for my appointment with the gastro doctor, but that would have been another month, and I felt that if I would wait that long, I would be dead. Going to the hospital felt like the best thing I could do. Upon my arrival they took some blood tests and told me I had to stay. I didn't prepare for such a stay but knew it was serious. The next day I had to drink 'cleanprep', three liters of it. I had to prepare for the colonoscopy. I puked out the drink all the time and for a moment I felt like I was going to die. I couldn't drink it, and tubes didn't fit trough my nose. I decided to go to sleep, and the next morning, I drank all of it, so my colonoscopy could go on. It felt like a victory. It was clear I had pancolitis, I could see everything on the screen and the doctors gave me prednisone. The prednisone made me feel good and gave me a rush. I thought it would be my rescue but the next morning I felt like crap again. The doctors started giving me morphine for the pain. After a few days there was no result from the prednisone and another doctor decided to do a endoscopy. They were only able to go in 15 cm and already saw holes appearing. They wanted to do surgery on me, and it scared me. The surgery seemed terrible to me and there was no way to prepare for my worst nightmare, a stoma. I decided not to take the surgery yet and asked if they could put me on remicade. By this time I was on remicade and prednisone both at the same time but it still didn't work. I talked to surgeons and nurses a lot and had some bad experiences with some of the surgeons who didn't seem to have understanding. Finally I decided on my own to have the surgery. I even had to fight to have it done laparoscopically. They wanted to give me an old fashioned scar, because the surgeon was old, and didn't know the newer techniques. I had to get angry, and finally it could be done laparoscopically by another surgeon. It was a relief even though they took my entire colon out. The surgery caused a lot of pain, and I got very sick afterwards. I puked all my food out, and had hallucinations because of the pump attached to my arm that contained both morphine and droperidol. The droperidol can cause hallucinations that left me with my eyes wide open for three days. They finally decided to de-attach the pump from my IV and I could close my eyes again without seeing horrific 'things'.

The days afterwards I had a lot of troubles, I looked like a skeleton and I wasn't able to eat. I had a lot of troubles with some nurses and they didn't give me pain medication at the right times (luckily there was my partner who one day decided to get me outside in a wheelchair and give me marihuana on a nearby bench. It released the pain for a few hours.

As the days went by I got used to the stoma. I couldn't look at it in the beginning I went home, and have been home now for two months. It's the first time in my life I could gain weight again. Right now I take care of my stoma myself. In a few months, when I feel completely healthy again I will get a J-pouch surgery. A nice thing to look forward too, and I hope it will give me my life back. Even though I now accepted the ileostomy, a stoma is not for me.

This is the first time I share a more detailed version of my story, but it feels good to share. Hope I don't sound too narcissistic, just felt like getting it out.
08-11-2013, 01:00 PM   #2
jimcon24
 
Join Date: Jun 2013
Location: Inverness, United Kingdom
Glad to hear you are feeling better! What an ordeal you have been through. It does feel good to get it out. Its good to be sharing these things here because in real-life people don't understand or recoil when you mention the word, "bowel". I hope you can continue to live pain free.
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April 2010 Diagnosed with Crohn's Disease
June 2013 Right Hemicolectomy
June 2013 Sigmoid Colectomy

Meds: Azathioprine 150mg, (September 2013 -)
08-11-2013, 02:01 PM   #3
valleysangel92
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Join Date: Dec 2012
Location: United Kingdom

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So glad to hear you're feeling better and have been able to come to terms with your ileostomy, its amazing how much difference they can make to someones life, there are a lot of people here who have found that having the surgery gave them their lives back.

I hope this is the start of a long, steady remission which is pain and symptom free and full of happy, full lived years.

Always feel free to just let things out, thats what this place is for, we will always be here to support and guide you and we all understand what these conditions are like to live with. We will never judge you for sharing your concerns with us or just having a good old rant.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
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