Thanks so much for sharing your experiences. I've been reading the "Total Colectomy" thread, and will spend some more time to gather information. I do still have questions!
I think I'm a good candidate for the surgery, since we've pretty much exhausted every medical option. I'm very grateful that I was referred to this particular GI last summer. He initially thought my constipation was due to some of the meds I have to take. I've had 'IBS-C' for about
10 years now, and it was only THIS GI who ordered the CT that got the diagnosis rolling So for that, I am grateful.
In addition to the CI, I also have a (genetic) immune deficiency, and I rely on weekly infusions of immunoglobulins (antibodies) to stay healthy. I know I am double-lucky, because it was my ENT (who was treating me for chronic sinus infections, and performed surgery) who ordered the tests to evaluate my immune system. 20 years of illness, with doctors just wanting to throw antibiotics at my recurrent sinus infections, and then I found THIS one who was looking for the root cause. And found it. In both situations, getting a diagnosis has been a relief, to know there IS a reason that I've had these problems.
More questions, which I suppose are in the FAQ category:
Is there anything you found helpful to prepare yourself, and your body, for surgery? Things to do, things to avoid?
Is the prep for surgery like the prep for a colonoscopy?
Did your tummy feel SORE, like being punched, or was it PAIN? I've had two other surgeries via lap, and had soreness along with some pain after them. I'm a fan of controlling pain, not trying to tough things out. I have a much better appreciation for my body and what it has to go through in the last few years.
Pain meds: they are notorious for causing constipation. But if (most of) the colon is gone, is this a problem?
Other meds and vitamins: I think I read on here that some meds are absorbed in the colon. I have a pretty long list of meds, so how do I know which ones I might need to take in a different form?
Post-surgery: How soon do you get to ingest anything, including fluids? And how do you know when your GI system has resumed working after surgery? Did you have any sort of TPN or other assisted feeding? Did you lose weight?
Women only: is it feasible to have a partial hysterectomy at the same time (leaving ovaries)? Or is it just too much to do at once?
What should I do to prepare my husband for the short- to mid-term recovery? What supplies might I need once I get home? Any websites or organizations that I can read about
Thanks so much for your input. I'm on a couple of other forums/discussions for my other health issues, and I know how supportive and calming it feels to have someone fill in all these blanks, with their own experiences. The 'not knowing' is hard for me, since I tend to do a lot of research to learn about