How did you decide about surgery?

The surgeon's experience is SO IMPORTANT. I've had the majority of my surgeries at a teaching hospital and while I didn't go without complications (they go with our diseases) I was very comfortable with both surgeons that I worked with.

I had my proctocolectomy for my 40th birthday:) and TODAY is my 3rd anniversary...wow I almost forgot! I had planned a trip out west for my family and we had a blast. I wouldn't have been able to have had as good a time before the major surgery. I had had an ileo for about 8 years before the proctocolectomy but I still dealt with Crohn's complications, pain and tons of meds during those 8 years.

I still remember the day I woke up and KNEW my disease with in the background(I don't want to jinx myself and say 'gone')...what a wonderful feeling.

Good luck in your search for a great doc...take it day by day...it will all work out. You've made the hard decision and even though it is a tough surgery, the rewards are many.

I'm going to see a surgeon this morning, recommended by my gi doctor (who is awesome). I go to Mass General Hospital in Boston, so they do a lot of these; hopefully it will be a good match. I am relieved she could fit me in today; I thought I might have to wait weeks.

It really is so encouraging that so many people felt so much better after the surgery. I keep thinking about how many times people have surgery and they are just trying to buy time, etc, not to have a real shot at getting better....

Just met with the surgeon, and she was great. Tentatively scheduled for Feb 24, just have to work things out w/my job etc. Too tired to post details at the moment, but this thread has been so helpful....

I feel actually joyous this morning -- probably won't last, but it's nice now. This decision feels easy at this point -- continue being sick all the time or have surgery and have a good shot at a much better life. So, I am moving forward, trying to square things away with my job, etc. I need some iron infusions before the surgery. The surgeon says I'm an ideal candidate, since I'm thin, not in an emergency situation, don't have cancer, haven't had previous surgeries, am healthy besides the IBD etc.... made it almost sound like a little break for her from all the really complicated cases they get from all over the world (not that she trivialized in any way).

What I've been thinking this morning is that at most points in history and in many places in the world now, I would have died already from one or another of my symptoms. So, of course I wish that we were further along in curing and/or preventing this disease, but I am so grateful to have the surgery available to give me life. It is a bit scary to run my hand over my "beautiful belly" (surgeon's words) and wonder what it'll be like in a few weeks, but I'm hoping that I can just see it as life. That I'm choosing life. Just that.

She said I can't have my actual colon, but she does take pictures, and I can have a picture of it as long as I don't post it on youtube....

With the exception of his back being weak and tender he will reach the 7 week mark tomorrow and it is amazing how far he has progressed.  I think he is trying too hard and I am literally yelling at him don't lift this or don't do that.  Something falls on the floor leave it, I'll get it later if I'm not around.

It is true that right after surgery there is a noticeable difference even with the pain and discomfort from the surgery.  It is a different kind of pain that gets better daily and you notice each and every day the strides you make towards your recovery.  Getting up and walking with the assistance of a podium walker the day after surgery was amazing actually.

Once the various tubes and drains are taken out a day or two or three after you feel so amazing. 

Hubby opted for the epidural with additional pain medication that he could press the pump every so many minutes to stay comfortable which I definitely recommend.  There is another anesthesia pain process offered instead of the epidural but he/we found that the epidural really kept him more aware and cognizant of everything that was going on as it delivers the pain medication to that area instead of your entire body and dull the senses.  Of course discuss all that and decide what is best for you personally.

We have taken some really enjoyable long walks on some very nice mild afternoons.  He walks and gets the mail just about every day.  Something he could NEVER ever do for fear of an accident.  We have gone out to friend's houses to play cards, visit my sister.  He will empty the pouch beforehand and is basically fine for the 3-4 hours and take care of it when he gets home.

We have gone out to eat breakfast and lunch several times and do some shopping afterwards.  He has had on occasion had to empty at an outside rest room with no difficulty. 

To not be in constant angst "where is the men's room" every time we go somewhere is such a relief.  To be out of the pain and discomfort he had constantly is also such a relief.  Now when his back gets back to normal he will be just fine.

Keep us up to date.

The surgeon definitely recommended an epidural. She also seemed to take great pride and care in creating the stoma....she said anyone can take out a colon (um, well, I can't....) but that she wants to create the best stoma she can for me.

Thanks for the warnings and tips, I hadn't heard about hair falling out, that could be scary. And of course for the success stories too.

The one thing I am not so clear about is taking out the anus. I asked about possibly leaving it in, and she thought it could just cause problems with inflammation, potential cancer etc. Just wondering what it feels like not to have one.... I mean, that's the part that would be going that I'm the most physically familiar with on a day to day basis .... she said the butt pain and healing of that part of the wound is often the worst for people.

it doesnt physically feel any different to not have one, it's just kind of odd in my mind if i think about it.  That was the hardest part for me, i mean how do you take out a hole?

There will be some tough days afterwards, the first day i saw myself naked getting out of the shower i busted into tears and cried for like 2 hours, i looked so horrible, i was all gaunt and had that bag hanging there (still the clear ones from the hosptial) and had track marks all over from the ivs and stuff, i looked like a heroine addict or something.  It was horrible.

But that passed, i got the bags you can't see through, which helped a lot, figured out, and realized that even though i had a scar and a bag, i was much better off than before, i put some weight back on, well lots at first, but have it abotu right now, and of course the marks faded.

There are still occasional times when i'm like OMG this sucks, but i just look at the crayon on the shower walls that my son colored why he waited in the bathroom for hours while i was sick, and i'm like, no you know what this doesn't suck, this is awesome!!!

Dan - get a copy of the Operative Note(s) of your surgery which should have an in-depth accounting of what was done during surgery. The surgeon's office mailed it to our home a few weeks after surgery (5 pages long) along with the full detailed pathology reports. When I read the operative report I did have to google some of the words/terminology as I didn't understand it all. It was also good to have as we made notes and had other questions we asked the surgeon at the post surgery appt 5 weeks after the surgery.

OMG Dan.  Scary stuff.

I meant to ask the surgeon at the post op appt.....

the report was extremely detailed and was wondering if during the 7 1/2 hours if he periodically dictated during the surgery all these details which are somehow recorded and then transcribed

I can't imagine him dictating all that after the surgery.  He was definitely  wiped out after the surgery when he met with me in a separate room to explain to me what transpired and drew illustrations on a board to help make it make sense to me....he never complained of course but I could tell he really earned his paycheck that day!  I really liked the fact that he didn't come out to me in the waiting area to meet with me and called me into this room as I was a wreck by then.  Even though I got updates every 2 hrs it was still nervewracking.

We also received a separate informational-type letter TO WHOM IT MAY CONCERN type thing detailing what type of surgery was performed with an overview for us to share with whomever whenever.

Definitely get copies - you should have them for your personal records.

Hubby's "room with a view" at Mayo Clinic's hospital had the heli pad directly below his 5th floor window. We could hear the helicopter as it approached and got some amazing photos of the helicopters. There were at least 5 of them during the time I was there visiting and there were a few others when I was not in the room. (We would say a prayer each time for the person being brought in.)

Just thought I'd check in again. I am hanging in.... things are moving along. There was a bit of a mix up between the surgeon and my gi doc about the pred taper (surgeon saw me so fast, she hadn't read all the notes, and didn't realize I'd been on prednisone for 8 months; she originally said it didn't matter how much pred I was on). I have to go down 10 mg every 6 days to get to 20mg, but it's going fine so far, and it doesn't look like we'll have to postpone the surgery.

Actually my gi symptoms are better than they've been in a year or two, which I think someone else mentioned. I have so little stress in some ways, no work, people cooking for me, cleaning up after me, driving me places, etc. But I know that it's the pred that's holding me, and I'm still clear about wanting the surgery.

I met with someone yesterday who had the surgery ... she was so generous, answered a lot of questions, and gave me an empty bag to walk around with for a while etc. Demystified a lot of things. When I was in the bathroom for a half hour at 2 am this morning, trying to get stuff out, it was really feeling like emptying the bag is not going to be a big deal.

I did get really scared for a while .... mostly I'm scared of the pain, because I just got out of the hospital where there was a lot of pain, and I'm feeling so much better now. Hard to check myself in for more.

Someone told me that it hurt a lot to go to the bathroom to pee, because it was so hard to sit, so I got the idea of looking up devices that make it easy for women to pee standing up. It's kind of funny cause they are marketed to really outdoorsy people, and so I was reading this article about someone who had trouble finding a bush big enough to squat under while bicycling in Laos..... and I thought, "wow, how similar to my current situation!" Not..... but I ordered one, and maybe it'll help....

Really appreciate the conversation....

I am glad things are going along smoothly for you. I was in the same boat where I was trying to taper of of Prednisone before surgery while not wanting to slip back into a flare. Every time I had a BM I crossed my fingers and hoped there would be no blood or mucous. I didn't want anything to get in the way of my surgery! Fortunately I never flared again, though I did go into surgery on 30 mg of Prednisone. My surgeon said the same thing-- he would rather do surgery with me in on Pred. than in a flare. Actually, when the pathology report came back after removal, it said my colon was in pretty good shape. Of course, for a second my mind jumped to the "maybe I would have been fine without the surgery" thought. However, I know my colon was only in good shape because I took a Remicade infusion, which healed me up and helped me get out of the hospital. However, that single infusion gave me the most excruciating joint pain, and I could never take it again. Nothing I experienced from surgery came even close to the pain of that drug. So I was still glad I had the surgery. It would only have been a matter of time until I had another serious flare, and with huge doses of Prednisone no longer working and Remicade off the table, I am sure it would have gotten very ugly.

My main complication involved my abdominal incision healing. Three months later, my incision is still not fully healed (fortunately the wound vac I am using is doing wonders). Originally, my surgeon thought this was from the Prednisone, though he always thought it was strange that my butt incision healed perfectly while my abdominal incision gave me such difficulty. It was later discovered that this was actually caused by a rare reaction to the suture material used in my abs... a different material was used in my butt incision. So Prednisone actually had no ill effects on my healing after all.

It does help immensely to meet someone who has had the surgery. I have a friend who had a permanent ileostomy, and she visited me and showed me her ostomy and supplies and laid many of my fears to rest. Everything she described has turned out to be perfectly accurate for me so far.

I am one of those outdoorsy folk you mentioned:) Though I have never used that device you purchased, I know several people who have (for winter mountaineering when they didn't want to have to drop their drawers) and they liked it a lot.

I taped an appliance to myself before surgery too. Even filled it up with some applesauce to get the real effect:)

Though the surgery really hurts, pain meds definitely make it tolerable. Though I have also had some pain with my incision issues, the main post-surgical pain from my ileostomy only lasted only a couple of weeks. And the pain is different than what you experience with UC because you know it will be temporary and go away as you heal. I remember one of the things I noticed most in the week following surgery was that I no longer had that achy UC colon pain that I had been living with for years.

I didn't have any ritual for my colon. I just remember after I did the bowel prep prior to surgery thinking, "I just had my last BM!" That was a weird feeling.

Good luck! You seem to have a great attitude and I am sure you are going to feel so much better after surgery.

it might hurt to pee for the first month or so, but it wont be too bad after that.
coughing and sneezing are far worse, lol.
and yeah there is a lot of pain, but its worth it. I don't know if you have kids, but you have to think of it as the fact that it will be paifnful, but like having a kid, its worth it you get something great out of the pain!