Emergency Ostomies - Lack of Support and Lessons Learned

I was tooling around this website and noticed more than a few notes about emergency ostomies and the lack of support afterwards. Wow, I'm not alone. 2006, fourth colonoscopy in two years because my UC was just not responding to any treatment. I went in on Friday the 13th and woke up with an ileostomy. Well, actually I was on so much morphine, I didn't know I had it for the first 48 hours.

I received 30 minutes of change instruction before I left the hospital after a five-day stay. Most of my knowledge was obtained via the web or the vendor support over the phone. I finally saw my first WOC nurse five months later thanks to the local UOAA group in my area.

Story moral - no procedures on Friday the 13th. Awesome.

It's so sad that they send us home with little to no support. I wish somebody would have told my family, ".... here is a list of telephone numbers Melissa will need in order to cope....".

I guess that hospital staff isn't touched by the weight of such a paradoxical shift in the life of another because, a) most have NEVER had a bag or a family member with one..... or b) they see so much stuff in a hospital they are benign to it.

I am glad you were able to make a little chuckle of it though!!! I think that is the only way I survived!

Although there is some misinformation on the web, I found the humor the most comforting and accurate. My favorite story was from a woman who had ostomy surgery. As she was getting up and around, she grabbed her IV pole and proceeded out of the room with a nurse and her husband in tow. As she crossed the threshold of the door, her pouch came off and landed on the ground at her feet. Her husband turned in shock to the nurse and asked "Does this happen often?". Evidently, the nurse did not fasten the pouch correctly to the flange, but I still laugh every time.

The perforation was extensive and I have compared my first scar and recovery to that of a lobster belly on the plate. Take care, it only gets better from here.

For what it's worth. I also fought UC for about 6 months and ended up with an emergency ileostomy. That was 8 years ago. Best thing that ever happened to me that improved my quality of life. I had a great ostomy nurse at the hospital that really put me on a path that worked. I, like you, have learned a great deal from the ostomy sites. After going through one of these things, it sure makes you appreciate the little things in life. Bob

I did the perforation/colostomy/reversal and agree. They must think we come out of the womb knowing what to do in these circumstances. I would be more than willing to volunteer at a hospital to help people understand what they will be doing... I wonder if you need a medical degree to do that?

Words of Encouragement from Ostomy Advocates I Hollister

I was very lucky here in the UK, my stoma was an emergency so I had no idea what to expect. I never knew anyone who had had one, and had no idea really what a colostomy was. My stoma nurses at the hospital were great, they explained everything I needed to know, gave me loads of booklets to read, and came to visit me every week for a few months when I came home. Even now, 4 years later, they are a phone call away and I can see them with any problems I have. They were a great help to me and my sister, who looked after me when I came home from 3 weeks in the hospital. I have also found some useful advice on the web, but nothing beats chatting to people who have been through the same things as you have.

Oh my yes. Right after my surgery while still in the hospital, day two I think, my pouch fell off as I attempted to negotiate to the bathroom. I was so embarrassed. The sweet male nurse said, "Oh, no need to worry. It happens often and we'll have it cleaned up in no time." All I could think was, "Good grief! No wonder everyone gets sick while in the hospital!" I did have a nurse visit 3 times at home. She was a big help to me and to my 3 daughters who had to help me for the first 2-3 weeks until I became proficient with my application. I'm now a volunteer to new ostomates through my local Ostomy Club. I visit at the hospital, talk on the phone, visit at home, and whatever else I can help with.

After 10 years of UC with Crohn's, I blew out my descending colon and went into emergency surgery on 12/16/11 at 2:00 AM. I woke up on a respirator in the ICU. I was not aware of the ostomy for the first 48 hours. I had ostomy nurse visits daily after that, with appliance application teaching until discharge. Unfortunately, two weeks after the initial surgery, the ostomy failed and I had to go back in for emergency surgery due to severe peritonitis. The initial ostomy was closed and a new one was formed on the right side. I woke up once again on a respirator in the ICU. I spent two weeks in the hospital and then went home on a woundvac for 10 weeks. 11 months later, the surgical wound still had not completely healed, so I am heading back for outpatient surgery on 11/30. The surgeon wonders why I am not keen on reversal!

Sorry, I hit the wrong button the other day. I was working on a laptop keyboard and I'm not used to it. In reply to the above, I had wonderful support for my ostomy and still do. The nurse gave me her cell phone number and she is available to help. I work on the periphery of the medical field, so I was aware of what an ostomy is, but had no idea how to work with an appliance or the variety of appliances available. The ostomy nurse worked with me diligently until I found one I am comfortable with. Because both surgeries were emergencies, the ostomy is right in my waistline so I need a very flexible system. Thank you, Barbara, for all of your time!!!

The first time I got out of bed, after my surgery, the entire contents emptied out of my bag. The nurse did not properly fasten the bottom. Such a mess - all over the floor, the walls, me, everywhere. I was horrified! The kindly nurse took me into the bathroom, helped me shower, and when I came out, everything was all cleaned up. Not at all my fault but I felt terrible. I think some nurse got into a bit of trouble for not fastening the bag properly.

Those of us who have had reversals also know the value of adult diapers for the first few days to avoid making further messes.

Good luck - it does get easier!