Decision Made

Good luck blksteeda! I am 8 days post-op now for step 1. I also had UC for 15 terrible years and can honestly say 8 days out from surgery #1 that the prospect of living with a bag forever is better than living with this horrible disease. Fingers crossed that this won't happen to either of us.

I had stents put in my urethra as well in order to get them out of the way of the surgeon and make them more visible. It wasn't a big deal except that for the first 24 hours or so thereafter my urine was bloody as heck. Completely normal though, apparently.

I still have my full box of ostomy supplies from my first experience. I have the Hollister two piece bags which were a breeze for me. I was changing my bag and wafer like a nascar pit crew. Every bathroom accident I have reassures me that I'm making the right choice. I was in panic mode that I was going to need the bathroom while at my appt. I didn't but on the way home, stuck in traffic, I had another bathroom accident and it took me well over half an hour to get home. Just the thought and the smell trying to get home just reinforces that this is the right thing for me to do.

notsosicklygirl said...
aww, you poor thing. That is the worst. I agree, if you're having accidents, and you have no medical options or you don't respond to the medications, it's definitely time. There is life after all this nonsense. I had to run out today unexpectedly and I was away from a toilet and I didn't even have a second thought. I just ran out the door and I was fine. It's a great feeling :) I can change everything quickly too - I don't change the wafer that often. My insurance has been covering supplies at 100% too - happy about that.

I changed my wafer usually about every 4-6 days depending on how well it was adhering. I had so many bags I changed them more often. I loved the two piece, I was able to remove the bag and leave the wafer on and jump in the shower and put the bag back on when done. :)

it's dependent on you. Some people empty a lot and others empty as least often as possible. I will empty before I go out usually. I usually empty when I wake up, sometimes I also empty if I get up in the middle of the night, not usually because I have to but because I am up. If I touch the pouch and it feels bloated, I empty. Gas plays a big role. When I first had surgery, I ALWAYS had gas so I would have to empty a lot. Today I put on a mini pouch in the am so I didn't technically empty, I swapped the bag. then I emptied a few hours later, then I went a few more hours and emptied again. I went out this evening and I put on a regular pouch before. I emptied when I got home but there was barely anything in there. I empty WAY TOO often. I don't know why but I do... I emptied probably 6 times today but I could have emptied 3x. 2 of the times where full pouch switches, but as I said, I have a 2 piece appliance and changing the bag is as simple as removing the top of a tupperware container and putting on another. I gave a wipe between with some toilet paper. It's hard to understand when you've never done it and nothing is like a working colon but this is better than having your life be ruled by locating toilets. You can get rid oft he gas other ways and that can make you empty a lot less often but there are risks involved. I do it a lot anyway. Actually, my gas has been less of a problem lately. I don't want to paint this perfect picture, obviously, perfect is the colon you had that worked, but mine was worse than what I've got going on now. I was never going 6x and I had awful cramping and blood, plus i was on so much medication. Now i am on nothing,.

Larasmom is right. It's pretty much when I pee too. I don't usually go to the bathroom just to empty but if I am in there I will even if there isn't much to empty.

Just a quickie, I had uc for 11 yrs at age 19 then ileostomy @ age 32, am now 69 and never looked back. However I came across Russell Maranini and he was in the same situation as me @ 19 and took a different route. Worth a look. I would give almost anything to have had a normal colon but surgery has worked well for me. I have a pouch (bag).

(Link removed. Sorry, you cannot advertise or promote services on healing well)

Post Edited By Moderator (iPoop) : 9/25/2015 8:40:41 AM (GMT-6)

Did you get a surgery date? If so when? That sounds horrible with the frequent accidents and gas pains...

A few more weeks then, hang in there! Keep us posted.

had my first set of tests today, just a simple EKG with my primary and listened to the heart and lungs. I go for blood tomorrow and to meet with the Pre Op nurse. Days are flying by

Jpouch is the initial plan but could change once he's in there. The decision will be up to him depending on the condition of my abdomen. I'll cross my fingers for the pouch :)

Good job! now you're at the point where you just want to be done with it. You already know how to manage the ostomy which is great.

blksteeda said...
lol is it odd I'm excited for major surgery? I know I'm going to be going through a lot of pain but I'm sure it can't be much worse than my first surgery where I had the bowel leak / infection. That was brutal!

I was excited (and scared!) too by that time. I just wanted to get on with my life which is exactly what happened. Good luck!

ByeByeUC said...

blksteeda said...
lol is it odd I'm excited for major surgery? I know I'm going to be going through a lot of pain but I'm sure it can't be much worse than my first surgery where I had the bowel leak / infection. That was brutal!

I was excited (and scared!) too by that time. I just wanted to get on with my life which is exactly what happened. Good luck!

I don't seem to have any fear, maybe it's because of what I went through with my first surgery. I know I was nervous bad with that one, then with the infection and emergency surgery, I think that toughened me up mentally for this next bout. I'm taking it easy the next couple days, I'm pigging out on all sorts of foods lol. I probably won't eat much at all on Tuesday. All they said was nothing after midnight. I'm just glad I'm first, no waiting for a previous surgery to be finished.