Marsky said...
I am so sorry to read this topic. I feel blessed to have a supportive husband. To an extent. A few years ago he asked me to give him explicit but simple details why I spend so much time in the bathroom. He said - talk me thru it, tell me why your health is this way (due to a good chunk of my lower colon/sigmoid being removed because I had rectal cancer). I am more or less a straight shot on one side of my colon, there isn't anywhere for my stool to collect inside and it comes out, 20 times a day if I eat solids. That's my life, has been for 13 years now. I could get into a real depression if I think about it and really ponder how my life changed April 29, 1999 but most of the time, I just buck up and make the best of it.
Anyway, that day I sat on the couch and tried explaining my situation to my husband, he did have a deeper understanding of why I feel this way now but he did make one comment that has never really left - "why can't you just stay in the bathroom and finish?" As in, going back to my old one bm per day (24 hour time period). I sat there stunned and cried. I said - did you not pick up on the fact that I am surgically altered now? He said - well yeah I get that, you'll go more now, not less but instead of wiping and wiping, just sit there and finish. I said - it's not that easy, my stool isn't like your stool - my output isn't normal. I said if I had to sit there and "finish", I'd be in the bathroom 8 hours a day, not a total of oh 3 or 4 hours as it is now.
So what I'm trying to say is this - even though I have a great husband and my rock in all of this, even he doesn't quite understand that one detail.
I have learned along the way that when I try to explain this situation to anyone, especially immediate family members - succinct, simple explanations and then pausing for them to grasp what I am actually saying - is a far better approach than going into depth, explanation wise. I simply lose people if I give them more than 3 or more sentences now. I simply say - I had a colon resection, I now experience multiple bm's per day, if I eat. If I skip solids, I can reduce my trips to the bathroom. (this is great if we're dining out somewhere and I skip food or having miniscule amounts, compared to their full meals).
I wish you well with all of this OP. It's not easy trying to explain any sort of bowel disorder, whether it's Colitis, Chron's, IBS, if the person who you're talking with has normal bowel habits (regular diet, one bm per day). They simply have no idea what it's like to have to live your life attached to a toilet.
Shoot for simple discussions and see if that helps. Have a book with illustrations of what a colon looks like when it's irritated (a recent book I bought on amazon is great, it's called Gut Solutions, by Brenda Watson and Leonard Smith).
I stumbled upon this, but listen. Go see a surgeon and ask him about
J Pouch surgery. Most people after surgery go between 4-8 times...and it goes down as the years passes. If you actually go 20 times a day right now that is ridiculous. You shouldn't live like this.