I've got a date!

SO- I met with my surgeon yesterday, & schedulted the procedure for 4/14/14. It went well- long appt, almost an hour. I am having the surgery 4/14/14, will be in the hospital about a week, & out of work for anywhere from 4-8 weeks, barring complications. Gulp... he is going to remove my large intestine, my rectum, my anus (it's got to come out because the fistula is so low), create the ileo, & repair the fistula. He hopes to do the upper part lapro, but the lower half will most likely be open, he likes to be able to "feel" what's good & what's not. It's going to be a very major, very complicated surgery. I came home & pounded a giant glass of wine. Than another! I'm not really nervous, I know it's going to absolutely suck, but it's been hanging over my head for so long, & it'll be nice to have it done with. I really like the surgeon too. He said I'll feel ok in about 3 weeks, with the ileo & all, but my butt is going to be REALLY sore for a LONG time. Funny enough, I used to freak out about the ileo thing- now I could really care less about that, it's more the butt issue that scares me! Is there a forum for *** wounds??? haha.....

Congratulations! It's very difficult to do the pelvic dissection laparoscopically, I had a low incision as well for the rectum removal.

Just wondering, did the surgeon describe how he's going to repair the fistula?

Looking back on it all now, surgery was hard but living with UC all the years I did was MUCH harder. You will be amazed how much better you will feel right away. April 14th will come fast.....good luck!

The butt thing freaked me out most too! I just couldn't wrap my head around the idea of taking out a hole, Lol. Anyway, it will hurt for a while but more than that it itched. That was the worst part.
Good luck!

Congratulations! That is indeed alot to take in

     Congrats Eva.  I wish you all the best!  Yes, it will be a long recovery, but, OH so worth it!

     I still have my anus.  So far, so good.  No rectum or colon though.  I didn't have any fistulas and I suppose the anus looked ok.  The only problem I had was a hematoma developed inside the anus post op.  My surgeon suctioned it out, gave me a script for antibiodics and two weeks later it was healed.  I did have quite a bit of mucus for some time after my operation and vaginal bleeding.  I was checked out thoroughly by my gyn doctor and all is well.  June will be 4 yrs for me and I don't miss my UP days AT ALL!!!

     I will keep you in my prayers.  God bless!!!

thanks everyone! I am in a good frame of mind to just get this over with- but honestly, Daveybobaby's post freaked me out! I'm with NCOT- I just want to slap on a wafer & bag & go about my business. Even the term "turtle-necking" makes me cringe... I thought less is more with an ileo??? But seemingly everyone uses rings, barriers, moldable thingies, cut-to-fit thingies, sprays, etc. Do you really NEED to use these products? I tend to get frustrated really fast & really easy.... I can foresee a huge meltdown post-surgery, struggling with supplies while my stoma pumps stuff everywhere. It's a lot to take is... And you know what, pro? I already look at the UC forum with wonder- I feel like UC is so far behind me already. Despite certain posters (NCOT ) reservations, I'm looking forward to getting it over with. I hope I'm not pinning too much on this though- I told myself today that I'll still be the same person with an ileo- it's not going to make me "happy" necessarily. Not that I'm unhappy now, really, but you get the drift!

pluot says it well, and everyone settles on their own little system after learning the ropes, but just to put your mind at ease, here is what I do every five days or so: get up, grab a precut wafer, a barrier ring, and a pouch, place the barrier ring (shaped like a big washer) roughly centered over the wafer hole, insert my finger and spend about 5 seconds spreading the hole f the barrier ring so that it's almost as big as the wafer hole, and fold up the end of my pouch onto the velcro so it is locked closed (they come shipped with the velcro undone i e opening spout still open), which takes about 2-3 seconds. i lay that in the bathroom on the windowsill and step in the shower, remove my old wafer and bag in about 2 seconds, and take a nice long shower, gently removing any big bits of barrier ring (a few seconds) left on the skin but otherwise having a normal shower. After the shower, I wipe the skin with a towel as I towel myself dry, then spend about 5-10 s dabbing the skin around my stoma to dry it fully, and grab the wafer and plop it onto my stoma, push on the flange area to get it to stick nicely, and attach the new pouch. Apart from showering, this once every 5 day production costs me about 1-2 minutes including gathering the supplies. I use no poders, lotions, do no measuring, cutting or anything (although that is necessary early on because right after surgery your stoma is swollen and shrinks rapidly over a month or so).

Congratulations on having a date set! I remember it seemed strange to me to be so excited to have surgery, but the date couldn't come soon enough! My biggest fear at that time was that I might slip back into a severe flare and have the operation postponed. I was so sick of having UC.

My surgery was 3.5 years ago. I didn't want a j-pouch so I chose to have my colon, rectum and anus removed all at once and the backside sewn shut. My butt wound healed wonderfully and I was surprised that it didn't hurt all that much. It itched because my surgeon had used staples on the outer layer of skin (sutures deep inside though). I was able to sit fine if I sort of rested on one cheek m more. There was deep mild pain in that area that lingered for many months but it did not compare to the initial pain from the rest of the surgery which was much more intense (but also controllable with pain meds).

My surgeon did not do any of my surgery laparoscopically. He did not think it was suitable in my situation. I don't remember why, but I didn't really care whether my surgery was done laparoscopically or open so I didn't ask many questions about that. I do know that he used a product called Seprafilm to reduce the possibility of adhesions. I have not had any adhesion issues crop up yet.

I think the most important things to consider with permanent ileo is to get a good stoma placement and a spout that sticks out from your belly at least an inch (mine sticks out about 1.5 inches). This will aim the stool into the bag. Flush or retracted stomas can be hard to manage as they pump stool under the wafer which can cause skin irritation. Once skin is irritated it gets weepy and then it is hard to get a pouch to stick. I actually brought this up with my surgeon in pre-op and he said he would make one of a good length. Of course, even with a surgeon's best intentions I am sure occasionally stomas retract or end up flush. There are products to manage this.

Regarding stoma placement-- wear your favorite pants to the meeting and any other relevant items. For instance, I like to climb and backpack so I brought my harness and backpack to the meeting so that the waist belts of those pieces of equipment would work well with my location and not rub on my stoma.

As far as products... try not to get too overwhelmed with all that yet. I remember stressing myself out so much trying to figure out what I might need beforehand which was a waste of time. There was no way before surgery (or even right after) that I could have ever predicted what system I would eventually like most or what products I would use. It is all trial and error based on your actual stoma and how your skin reacts to different things.

What you can do if you want to get a feel for wearing the pouch is to fill a sample bag with applesauce (about 1/3 full) and tape it too your belly once you get the dot marked for your stoma location. I did that and went to work with it... tried on different clothes... went to the climbing gym and wore a harness with it. I was surprised that I couldn't see the pouch under my clothes much which was very reassuring.

I tend to have a really busy schedule so I hoped to just be able to slap on a wafer and go too. As it turns out, my skin does need a bit more pampering and my wafer changing routine takes around 30 minutes twice a week (more when I consider the time it takes to also shower without my appliance on... but I would shower anyway so I don't include that in the final tally). I have found that I am used to it now and I really don't mind. I use it as a bit of quiet time and just turn on some music or the TV while I set up my supplies, cut everything out and layer the various things around my stoma. That extra time is so worth it because it keeps my parastomal skin in really good shape.

Best wishes with your surgery!

I preferred the two piece system. I was bit fanatical about changing the bag so it just made things easier for me. A good stoma will make all the difference in the world about how you feel about your ostomy. Since my ileo was temporary between my surgeries, I had a loop ileo and stomas with loop ileostomies are notoriously a pain in the butt. Mine was flush to my skin which was a nightmare. I always say my surgeon made me a fabulous j pouch but he made me a horrible stoma. Yours is going to be great....sounds like your surgeon is totally on top of things.

The Hollister two piece has a "floating flange" (hard to explain but you'll understand when you see it) so that you can fasten the bag to the wafer without pushing on the abdomen. That's my favorite and also what my hospital used.

Thanks! I've been a little downt he past few days- spent all of Sunday hiding in bed, in my pajamas! I didn't want to see anyone, talk to anyone, etc. We had dinner plans, nope! I stayed in bed. It just all sort of hit me at once, plus my car broke down on Friday- the last straw! I just want to get it over & done with- one major clue that this time will finally be the real deal, is that I'm envious of all the people who've already done it, who are that much further ahead in healing & learning then I am. It's hard to describe- I'm not nervous, not scared, but... I'm unnerved, I guess. And yes- this forum is immensely helpful & reassuring!