Posted 7/29/2008 6:56 AM (GMT -6)
Rosemary - my gosh, you have really been through the wringer. This is why I say sometimes surgeons seem too cut happy. They are not good at post-op care, they just assume surgery will fix all our problems and improve the quality of our lives. Sadly, in your case I am sure you would like to turn back the clock. But you can't. You have to deal with the new you as best you can now.
I had a rectal tumor diagnosed April 1999. I wish now I had obtained a second opinion, on how to surgically remove it but I decided to have the surgeon who my Gastro doctor and Oncologist recommend perform my surgery (and also my colostomy takedown surgery, 8 weeks later). My surgeon eventually moved out of town so he hasn't seen me through these past 9 years, post-op wise. His partner took over my care but he eventually referred me to an excellent female colon specialist/surgeon in my area. I know if I ever need more colon surgery, she's my surgeon of choice. She's on the cutting edge of the latest technology and has won many awards and recognitions. But to get back to my original surgeon, all tell me he did an excellent job, he got clean margins, I didn't need treatment because my tumor was caught extremely early, it was an inch in size. But resting on the third layer of bowel wall tissue, initially thought to be penetrating it. That's why I had a major resection, as opposed to a similar dilation/scoop out surgical approach. He took out 90% of my sigmoid and 15 inches of my colon. Internally I have no where to store stool so as long as I eat, I have bm's all day long. 12, 15, on a good day, on a bad day 20 or more. Very small in amount each tme, but I need to relieve myself. Holding it longer than 30 min. has resulted in cramping, pain, accidents, etc. I can feel the section of my "new" sigmoid/colon bulging when it's not meant to bulge like a sigmoid was meant to do. Long story short, his partner has wondered out loud why he didn't give me a J-pouch. That's the approach he would have gone with. My new female colon doctor now says I'd be an excellent inverted colostomy candidate. But thankfully I found another medical site, with forums, for ostomates. They have an irrigation forum and most there say if you struggle with IBS woes, irrigating isn't a good option (my surgeon says I can still have my lower colon removed, the inverted colostomy created, etc. but we no longer have good medical insurance and I certainly do not want major surgery, not yet, maybe if I'm a lot older than I am now, I'm 53). So there you have it, 3 colon surgeons, all 3 with different approaches. I am told at each exam and colonoscopy, inside wise, everything looks so good - I never want to look! That my surgeon did such a good job with me. I still wish I could talk to him though. I wish he hadn't left his practice. There have been so many questions I've wanted to ask him - for starters, why not a J-pouch? I was always in the one poop a day camp, before surgery, the "good ole days" as you describe (but in your case IBS-C).
I never thought my life would revolve around needing bathrooms on a daily basis! Not to this extent. I have worn out so many toilets in this house, I think 2 out of 3 are on their second or third working parts. My husband has to replace the handles and guts of each toilet every 2 or 3 years, because I use them so much. Sigh.....but what can we do? I can't give up food! That is the only sure fire way I know of that reduces my bm count.
Thanks for sharing your story. It's not easy road any of us travel on. I always think - if not for the Internet, I'd feel so alone. I've only encountered one or two people, face to face, that are willing to admit they have IBS symptoms. Most look at me so odd, as I just contracted an intestinal viral bug - yeah, one for 9 years! LOL
Hang in there....