Hi Happy Cheeks
Love the name.
I have a permanent colostomy and have had a total proctocolectomy (sp??). That's everything out and my butt stitched up. It was the best thing that ever happened to me.
I had longstanding toxic megacolon and could only actually poop once every 40 days or so. However, I had the urge to poop almost constantly. I spent hours in the toilet straining and only succeeded in pooping blood and shooting haemorroids out of my butt. And the pain was indescribable! I've been doing this for 30 yrs thinking this was normal. OUCH.
Eventually I spent more time in the bathroom than anywhere else, I had anaemia and was bleeding at least 2 cups of blood every time I strained to go to the toilet and was fainting and throwing up in the bathroom. I got totally phobic about pooping, bathrooms and anything to do with down there
I finally went to my doctor who sent me to a colorectal surgeon - the amazing Carina Chow. We have shrine to her at my place! She took one look and had me in for surgery 4 days later. I got a temporary colostomy - Tomi.
However, because everything was still left inside me, I still had the urge to poop, and that meant I still had the same problems. The bowel produces mucus and it needs to be pooped out. So more blood, more shooting out the haemorroids. Increased phobia about pooping only now it's mucus we're phobic about.
I went back to my surgeon and told her I still had the pain - felt like a metal pole stuck up my butt - and I still had the same problems as before. She told me with the amount of fissures and haemorroids inside me it's a miracle I can poop at all. Well now, that explains it! No, the pain isn't classic haemorroid pain so let's have a feel around. OMG that was so painful and embarrassing. Turned out my coccyx was badly dislocated and she could actually move it in a figure of eight pattern just with the tip of her finger through my bottom. OUCH.
She decided to remove the coccyx, and everything from half of my descending colon down, all of my rectum and anus and stitch me up giving me a permanent colostomy
From the moment I got Tomi permanently my life and quality of life have improved dramatically. I am in heaven. I am no longer terrified of the bathroom, I have total control. I feel cleaner than ever before and I don't worry about pooping anymore. The bag takes care of it all.
I can strongly recommend a stoma for solving the kinds of issues you mention. A temporary illeo will rest your bowel and perhaps help the UC.
For a first step I would opt for a temporary illeostomy. See how you go and then if the mucus issue is still causing problems maybe opt for a permanent after you've done a while with the temporary. Yes, it means 2 surgeries, and the associated risks, but if you aren't bother by the mucus poops then you probably could get away with retaining the rectal stump. If however you find you are still having the bathroom issues then have the second surgery to remove everything.
I've got nothing but good things to say about having a stoma. But my circumstances are exactly that - mine. You are living a different life with different issues. Opting for a temporary gives you the chance to try it out, see how it works for you and if everything gets better opt for a reversal in a year or so, or choose to keep your stoma for life. Opting for temporary is the best of all worlds as it gives you options down the track. My option within 6 weeks of getting Tomi was to keep him forever, your option may be different.
Living with the bag is just marvellous. Obviously there are major differences between the illeostomy and a colostomy - most importantly with a illeostomy the output is more fluid than with a colostomy and so you use drainable bags and drain it away, whereas I use closed bags and just chuck them out when full - or full enough to annoy me anyway. And there are diet implications for illeostomates that there aren't for colostomates. But a chat with a stoma nurse can help with those.
I wouldn't go back to my pre-colostomy days even if you paid me a small fortune. I love my stoma, he's my life partner and he's a wonderful addition to my life - gurgles, farts and noises at inopportune moments aside - Tomi is fantastic. I can highly recommend life with a stoma. You can do anything. In fact, I can do more with the stoma than I ever could without it. I'm not tied to a toilet and I can actually go out and enjoy myself. It's so much better than before.
Give one a go and see how it fits for you.