Welcome~! I'm fairly new here, too, but I've been SOOOO glad to find the kind, caring, experienced people here. There's lots of info, lots of support, and lots of 'real life' experience. Thank you ALL for making this such a great source of healing.
Your story is almost exactly like mine. Years (decades?) of being told that I 'just' have IBS-C, living on fiber and Miralax. Got to the point I could not go out socially, because I could not predict when I would be curled up in pain, chills, etc. Last summer I found a new GI, who was much better to work with, and prescribed Amitiza. It worked for about
4 months, then stopped working. My entire winter was spent going through all the hoops----I mean TESTS--- to see what the problem was. Not only did I feel like crap (
) because of the chronic constipation, but the testing regimens were no fun on top of that.
Like you, I finally got the correct diagnosis of CI. My SitzMarker tests (yes, more than one) showed the rings stayed in the ascending and transverse colon, very few in the descending, and none in the sigmoid. No pelvic floor dysfunction, or outlet dysfunction, so finally, in April, I had a colectomy with ileorectal anastamosis, what you are scheduled for (yay!).
First surgeon (general surgeon) I consulted wanted to do it as an
open surgery, but I was not comfortable with that. So I found a colorectal surgeon specialist who had done hundreds of these surgeries. I have had previous abdominal surgeries, but even so, he was very comforting in telling me he would plan a laparascopic procedure (there was always a chance he might have to convert to an
open surgery). My surgery date was April 16 of this year.
I did not have any trouble with the surgery itself. Pain management was very good. I had a couple of other things taken out 'while they were in there' (they normally remove the appendix at the same time), so my surgery was about
5-6 hours in total. Amazingly, by the next morning, I already had gut sounds!! All my doctors (4 of them) were happy about
I stayed on PCA (Patient Controlled Analgesia, or pain pump) for a couple of days. I was sore, but never any pain, which amazed me! I felt weak, but was up and walking the day after surgery. I did have frequent bowel movements, in fact I think I started late in the afternoon of the day after surgery. I could 'tell' when I needed to go, and while the IV pole/pump was a hassle, I was able to get up to the toilet on my own.
Word of warning: Nurse wanted to try to transition me from IV pain meds to oral on day 2. I think she gave me 2 Percocets, and man, was I OUT! for hours! I'm sure they could hear me snoring at the nursing station! Unfortunately, I also got very dehydrated, and I had a very difficult evening/overnight. (I had been thinking, 'Wow, this hasn't been too bad, I was expecting much worse!' HAH---I cursed myself.)
I had hours of fever, vomiting, bowel movements which I had NO control over. My poor nurses that night! At one point I had both ends going, and I felt like a 5 year old---WAAAAAHHH! My (angel) nurses put me in the shower on a bench, with warm water washing everything off as it came. Finally they plugged me in to IV again to rehydrate and get meds on board, and I could sleep a bit. And my nurses could get a break! That set me back a couple of days, but I was out of the hospital on day 5.
I began eating soft foods the day after surgery. Didn't have much appetite, and was getting to know my new 'plumbing'. Had instructions for each of my doctors as far as diet, activity and hydration.
At home I was sore, tired, slept most of the time, and had dilute Gatorade or G2 on hand to stay hydrated. I only needed ONE dose of my pain meds once I got home. Things are so much more comfy in your own bed! But really, I continued to be amazed that there was virtually no pain! Just soreness.
Scrambled eggs were very easy to manage, and I think I ate them for about
two weeks straight! I could try anything I wanted as long as it wasn't on my 'forbidden' list. You'll get the same list.
Each day, I walked. First a very little bit, to the kitchen. Eventually outside, and eventually down the block. Be prepared to be exhausted. Somewhere around 2 weeks I finally felt noticeably better, as far as not sleeping constantly.
Couple of tips that I learned, and probably from people here: When you move in bed or try to get up, use your arms to push yourself up, not your belly. Hold a pillow across your tummy, to support it a bit for a while, if you are up, or going to the bathroom. You will come to realize how much you tend to use your belly! Of course, I was afraid of having accidents, so I got some bed-liners that were helpful. I didn't have much trouble when I was awake, I could get to the bathroom OK. But when I was sleeping, I didn't want to have to worry about
it, so used adult diapers for a couple of weeks. Didn't really need it, but it helped with the 'fear' of having an accident.
You will be able to eat normally again, once you are through the healing process. I am still (after 4 months post-op) finding out what I can tolerate, or what causes unexpected results. Everyone is different, which is why it is so great that lots of people here have really good suggestions about
foods and what to beware of, or what you can usually count on as 'OK'. As far as lactose intolerance, yes, you'll probably still be lactose intolerant. I am. But for me, Ice Cream is one of the major food groups, so I take Lactaid tablets. Probiotics may be helpful, too.
I can tell you that I am SOOOO HAPPY I had this surgery. If I'd even known about
it sooner, I would have pursued it, but no one ever asked the right questions until I found my 'new' GI. Thanks DOG!! I am not 100% yet, as far as fatigue. (That is taking a LOT longer than I expected, but my doctors remind me that I had MAJOR surgery.) BUT: I am able to go out to eat and be comfortable---I usually have to use the bathroom within an hour after eating; you'll get to know your 'schedule'. Just NOT having the pain, inflammation, discomfort, fear of a flare up----all of that is GONE. Oh, and as far as scars, I had one large-ish one at my bellybutton, four smaller ones as access points, and one very low on my belly for my hysterectomy (done at the same time). All have healed cleanly, and are fading. At first, you might want to avoid wearing pants or jeans that might rub on your incisions. I was reallllly fascinated by how they all healed: the surgeons used glue, not sutures, on the skin level. Inside was a different story!
Feel free to ask questions, especially as you absorb more info on what to expect. I remember reading this board and thinking, geeezzzz! with all these complications or post-op problems, maybe I DON'T want to have this surgery! But as someone pointed out, many people HAVE had the surgery, and have had very positive outcomes, they just no longer post here. So don't be scared about
the 'possibles', just be informed.