Proctocolectomy in 12 days

Hello, Desertsun.

I can't really comment on the anal closure since I elected for the J-pouch construction. But I can say that you're doing great with all the research you've done. That's the best thing you can do to prepare yourself. It sounds like you're ready.

I know what you're going through with just the suffering and waiting. I had gone off almost all my meds and was on nothing but Asacol for the couple of months before my surgery, and my symptoms just spiraled out of control. Even though I was taking tons of supplements, probiotics, and was on a highly restricted diet, I still lost a ton of weight and was in a lot of pain and suffering right up until surgery. Waiting was the hardest part - I was so excited once my surgery finally came, even though I couldn't really show it very well. In fact, between my UC symptoms and the bowel prep - I was dealing with very severe dehydration, malnutrition, blood loss, cramping, etc. - I was in pretty terrible shape. Make sure you have someone to drive you to the hospital and help you get checked in because you will be very weak and dehydrated.

However, the flip side of this is that the minute I woke up from surgery, I felt the absence of the disease - no more uncomfortable, painful, sick feeling in my belly that I'd been living with every minute of every day. Of course then you will be dealing with the pain from surgery, but it is completely different from UC pain. The fact that you're getting it done laproscopically will tremendously decrease the amount of pain and the length of healing/recovery time. Mine was mostly done laproscopically, and when I first woke up, I couldn't even sit up in bed, but by the next morning I was up and walking to the door and back, and by that evening I was walking to the end of the hallway and back.

Just make sure to keep up on your pain meds. Don't by shy about pushing that pain pump button, and once you're switched to oral meds, don't be shy about telling the nurses if and when you need to increase them. They can always make the meds stronger if they need to, and keeping you comfortable is the best thing you can do for recovery because it will allow you to move around more, which encourages healing.

If you want to read a very detailed account of what surgery was like for me, check out my blog. Here is a link the post about the day of surgery, but I also have plenty of posts all about leading up to the surgery and how I've been recovering since.

Day of Surgery: ronnielee-fightingforit.blogspot.com/2012/10/surgery.html

Please continue posting to let us know how you do after surgery and to come back with any questions or concerns you have that may come up. Good luck!

That part was the hardest for me to understand. How do you take out a hole? Anyway, it wasn't the most painful part, but it was the most annoying, cause it itched like crazy! I found that putting a pad on and changing it like every two hours or so helped that a lot. It was kind of hard to sit flat for a while, i ended up kind of sitting on my tail bone, and staying off hard chairs. Don't sit on a doughnut pillow, Im not sure why but it's bad for the wound. It doesn't really hurt that badly even when you sit it just feels really weird.

I had a lot of trouble with my butt wound -- the worst part. I had an abscess a week after I got home, and had to go back in the hospital for a few days. Then it just didn't heal, and I had to have another surgery to fix it, plus a few months of bed rest afterward.

Mine is kind of the extreme end, most people heal just fine. I'm doing great now, although I need a pillow if I'm going to sit on a hard flat chair for a long time. It's still getting better though, as a few months ago I needed a pillow almost everywhere.

They'll probably give you an inflatable pillow at the hospital, if not, you can get a wheelchair cushion (looks like inflatable swiss cheese). Don't get a donut cushion, as it's the opposite of what you need.

I found sitting on the toilet to be the worst for the wound. If you're female, I recommend the pstyle -- it's a simple device (there are others too) that lets you pee standing up. They're sold for camping, but work great for surgery too.

If you have a reclining chair, that's more comfortable at first than a regular chair.

I had to have all kinds of creams and wound packings and such, but not everyone does.

Even thought I had a lot of trouble, I'm glad I had things closed up and don't have to deal with any discharge or bleeding there and there's no cancer risk there either.

Summerstorm.....I've ordered one of those fleece covered, gel filled chair pads. We used one of these when my mom was in a wheel chair after her stroke. She passed away 6 years ago and we got rid of the wheelchair and now I wish I would have kept the cushion. Speaking of my mom, I had not ONE symptom of UC until 10 months after my mom died. I was 54 yrs old which from what I've read, is a late onset of the disease. Miss her dearly but glad she hasn't been around to see me suffer.....it would break her heart.

My ostomy nurse suggested a waffle pillow. I don't know exactly what that is, but she said she would give me plenty when I get to the hospital to take home with me. Also, Desertsun, I think my surgery is a day before yours, not on the same day. I'm a little crazy these days and counting days is obviously a bit difficult for me at the moment.

Dietcoke, waffle is actually a brand that makes a few different cushions. The ones I got from my nurse were light blue in color and came already inflated (and when they pop, they're gone ... I went through about five of them in a year plus). The texture is a bit bumpy like a waffle. They are not inflated that much, but they're good when you sit on them.

They also make the inflatable "Swiss cheese" wheelchair cushions, which are nice in that you can blow them up yourself and also deflate them for easier carrying.

The gel wheelchair cushions are nice, but heavy. I take public transportation so needed something I could easily carry. I was out and about a lot, putting a pillow down before I sat on the subway etc (amazing how everyone looked and no one ever said anything ... one day a store clerk thought it was a pool toy and wondered why I was carrying it around in the winter, that was it).

Thank You Nathan !  This advice will be most helpful.  Also hearing you say "your new life" I hear something wonderfully postive in that.  Someone else mentioned that as soon as they woke up after surgery, they could actually feel the absence of UC in their body.  I am so looking forward to that.

Best of luck to you on your further recovery.  I have a feeling you are going to do just great.

     I had a total colectomy with end ileostomy on June 28.2010.  My surgeon left the anus open.  My problem was always proctitis and he said my rectum was badly diseased.  For some reason or other, in the twelve years I suffered my UC (I should refer it as UP) never traveled further into my colon.  When I asked my surgeon why he left the anus intact, he told me there are more complications when sewn closed.  I did develop an abscess inside the anus post op and the surgeon was able to get in there and suction it out without problems .  Hurt like the dickens when he did it though..lol.  I know there are different thoughts on this matter, one being the fear of developing cancer inside the anus.  Well, so far so good for me.  I do have an annoying skin tag hanging out the anus from my UP days and had the surgeon take a peak at that.  He said "Other than being a bit annoying from time to time, to remove it would be quite painful."    I want to make clear that my rectum is removed.

     Best of luck to you!!!!