Finally Had Surgery

Hi All,

My second surgery was originally scheduled for May 13th but was moved up to May 1st. I met with my surgeon the day before and went over things. It was clear that the intention was to construct the j pouch however, if he felt that it wasn't a good idea based on the conditions once he opened me up, he would make the ileo permanent and remove the rest of my "bits".

The surgery was 9 hrs which included 4 hrs of cleaning up scar tissue from the original surgery. He felt that he could make a good connection but he also felt that he didn't want to risk a further surgery so he did the construction and resection all at once. You can imagine my surprise when I woke up with no bag. This scared the heck out of me because I think deep inside, I expected a permanent ileo and had prepared myself for that. I should also mention that life was great with the ileo. The previous surgery came with a bad infection and open wound and lots of care for a couple of months post surgery. This time, the main incision closed right up with no issues and the old ileo wound continues to heal well and has a drainage tube inside. No infection there yet either. The only complications were a very sleepy colon and two weeks on the NG tube. When things finally woke up and began to function, I was missing my bag and second guessing everything because I had little control and lots of bed accidents guessing on gas or not. I'm sure that's all pretty common.

So I'm home (5th day) and things have been progressing fairly well albeit, I am in the bathroom about 12 times per day and always feel that need to evacuate. This has caused me some further anxiety and second guessing about will that feeling ever subside or will I always need to be close to a washroom every time I eat. I have been taking Metamucil regularly which seems to keep my bm's rather consistent. Yesterday however, I suddenly had diarrhea a few times in the afternoon so I took two immodium. Though I've had no cramping, things seem to have stopped moving and I'm now terrified to put anything in my mouth fearing there may be a blockage.

I would appreciate hearing from those with j pouches regarding their first month or two and the ups and downs and of course be reassured that things will smooth out and I will not ultimately wish I had simply opted for the permanent ileo.

Thanks to all. This board is wonderful.

Bruce 

Bruce,
you are doing fine. My first few weeks and months were very chaotic. I started off with 20 bm's per day, probably because I had so little control and would just go to the toilet at the slightest pressure feeling. This feeling of never being sure what's what, if you need to, if you don't, if it's gas or not, will pass and the feelings will become differentiated. I am still avoiding all foods that cause gas and so have very little problem with that.
For me, the first 2 months were the worst chaos, by month 4 I started to notice some difference, things were getting more reliable and predictable, and controllable. Month 5 was eve bettern and than with month 6 I had a really clear sense that my jpouch was functioning for me very well and had become trustworthy. 14 months since take-down and I'm very positive and happy I went through the three surgeries. It was worth it.

But back to the first weeks. 2 immodiums will not block you. I took 4 in the morning when I first went back to work, because there was an 80 minute train ride. Incidentally, I now only take one immodium at a time, and it has the same effect as taking two.
Getting diarhea may have meant that the last immodium you took wore off. It's good average 4 hours, and the best is to take it 30-40 minutes before eating.
I take psyllium after every meal, then avoide liquids for an hour - that helps reduce the number of bm's.
So from my memeory of the first few weeks at home, yes, I let myself get stressed about the chaos and fear of accidents, but looking back the annxiety wasn't necessary. That's just how things are at first. Take it easy, don't expect perfect performance yet, eat easy foods (nothing hot and spicy) and try to gauge how long you can walk outside before you need a toilet. Wear pads if you need to, poor little jpouch is still a baby, and the sphincter muscle was inactive for a while and needs more exercise to be totally reliable again.

Bruce first of all congratulations on your unexpected surprise. I have no words of wisdom for you as hubby had hoped to be able to try a jpouch but it was not meant to be for a lot of very good reasons. Honestly for him, his age, our status in life it is ok and has so far turned out to be fine. He was lucky in that he healed well and fast and so far has had no complications and of course we hope it stays that way...lol.

In addition to the support and advice you can get here, remember there is a jpouch org also on the net that I am sure can give you some info too.

My husband was mentored by a great guy before surgery who had his jpouch for over 25 years who also told us about that site.

Best of luck to you and hopefully like others in time things will slow down and be a lot more predictable for you.