New ostomy, upcoming APR surgery (Aka: Barbie butt) advise please

I have never heard of an APR surgery so I don't really have any advice for the actual surgery. Just try to strengthen your core and back as much as possible between now and then, eat healthy so you will be in the best shape possible. You already had the ileo surgery, so you know all the basic tips, walk, take it easy, etc...
good luck!

     By Barbie butt I take it they sew the anus closed?  I had a total colectomy with end ileostomy but my surgeon left the anus open.  In his opinion, there are less complications when this is done.  My rectum was the culprit.  I suffered with UP for twelve LONG years before surgery.  He may have a point because about a month post op, I developed a hematoma inside the anus, probably right outside the rectum area, or what was once the rectum.  He went in and suctioned it out, right in the office , man, that baby hurt!!!  I was then placed on antibiotics for a few weeks and returned to have it checked.  Everything was ok.  He would rather leave the opening for drainage.  Better it come out than build up inside and he would have to put a wound vac in there...ugh.

Oh! I had that done, I just didn't know that was its real name,lol. I didn't have any problems, I just had, and still have, a hard time with how they take a hole out,lol. And its kind of weird not having it, but I wasn't going to use it for anything.

I had a second surgery because my butt wound didn't heal from the first. This one was very strict on the recovery (much more than with the first surgery). I wrote a detailed blog post about it here: http://tinyurl.com/c4no2pk

You probably won't be as restricted as I was, so don't get scared, but some of the information in there should be helpful.

One thing that helped a lot was getting a device to help me pee standing up, as sitting on the toilet is the worst for the wound (spreads the butt cheeks). More info in my post....

The hospital should give you an inflatable pillow for when you get better, but if they don't, get one yourself (the kind that are seat cushions for wheel chairs are fine). Don't get a donut cushion (opposite of what you want).

If you can, meet with a physical therapist and/or an occupational therapist before your surgery (and after). They can help you learn the best ways to move without tearing your stitches and also give you tools to make life easier.

Feel free to ask more questions.

Thanks for the advice! I'm trying to get things ready ahead of time. A padded cushion, one piece ostomy bags because I use the 2 piece Convatec and I have to push kind of hard to get the bag to lock on and I don't think that's going to be a good thing to do after surgery, lol! I ordered one of those P-style devices so women don't have to sit on the toilet so I'll let you know how that works😜. My husband is very supportive and a great care giver when I need it so my only concern is the healing of the butt wound. I'll be happy to get this over so I can stop worrying about it!

Sword, there's a guy in my support group who had the same surgery as you, and it is a different surgery. For those of us with Crohn's or UC, the surgery really is just removing the anus and sewing it shut. With cancer, often more tissue has to be removed, and hence the need for skin flaps.

I had to have a second surgery because my wound didn't close, and for that one they said they might need to use skin flaps, but it was a small enough wound that they didn't need to (also, I had put on some weight since my first surgery, and so they had more tissue to work with).

I hope you find someone to talk to about your surgery, but also please be aware that those who don't have cancer usually don't need such an extensive surgery (so please don't tell them they are wrong).

I wish you well in your healing. It's not easy. I had to have 3 months of no sitting or bending after my second surgery, as I healed so slowly from my years of drugs and disease..... not the same thing, but I'm doing great now, the wound is closed, my plastic surgeon said I "graduated."

I, too, wish you well and am very sorry for all that you have had to go through in your healing process...God Bless!

Hi bluegrass, I was apparently already reading your blog as you were responding to me! You are so right! I went from being very healthy to this in the blink of an eye. It was such a shock and emotionally hard to deal with. I live on a ranch in the desert and the medical facility where I underwent chemo and radiation is 200 miles from home so had to actually leave home for that seven week period. There was not a surgeon there with the skills to do the APR so my surgery was at the university 400 miles from home. The surgeon just told me this was what had to be done but did not explain it in depth or that it was not, as I said, the norm. It was not, even though explained to me, what I expected. During the 8 hour surgery a disc was blown in my lower back (positioning) and the pain from that during the first week was way worse than the pain from the abdominal incision or the flap. The attempts to get me up and walking during this time tore out all of the stitches around the stoma, which no one realized until after I was back home 400 miles away from that hospital and 50 miles from my local FNP. No one looked at it in the hospital after the surgery except one ostomy nurse, she told me I would have a difficult stoma to live with but did not go into details other than to tell me it was sunken, misshapen and in very poorly placed. My local FNP (a 50 mile trip from home) has been a life saver in my healing process. She learned a lot...fast! She is the one that told me the stitches were all torn. So here I am out here in the boonies trying to figure it all out. Initially I had to be in a reclined position because of my back but then they realized that my flap was not healing that way because of the pressure put on it and was told to stay flat on my back. All this and then I got a very, very (like 0% chance) prognosis after the pathology report came back. Three months out I have a flap that is not healed, a stoma that I cannot find workable products for, a blown disc, and metastatic cancer. I am now back traveling the 2oo (one way) miles every two weeks for 6 months of chemo infusions. I have made one trip back to see the surgeons, they just shrugged their shoulders, said they did the best they could and put me on a 10 lb weight limit for a year. Sorry to unload on you...

I am so sorry to hear your story Sword. I am the original poster of this subject. I had my surgery Sept 14 and am doing well I think. It was called an APR. I was opened in my belly to remove the top part of the collin and also cut on my bottom to remove the anus and stitch it shut. My ileostomy surgery was January 19 of this year and at that time I was hospitalized for 10 days because I was so sick from the UC. The ileostomy surgery took me about 7 weeks to recover from. This time I was only in the hospital for 3 days after the surgery! The dr said I was doing great and the foley and JP drain were removed on the morning that I was discharged. I have a great GI surgeon and was operated on at the huge University Hospital. I am recovering well at home, I came up with a way to pee so that I don't have to sit on the toilet and that has been a good thing, lol! I can now sit forward on a chair without to much pain but leaning back in a chair or recliner pulls on my bottom too much yet. I have the most discomfort in my belly where that incision is probably because it's right next to where they opened me up for the ileostomy and also because the dr said I had a lot of adhesions she had to cut through. I have no cancer thankfully, and wish Sword the best of luck healing. I am appreciating my time off from work and will continue to walk and follow my drs instruction, lol! thanks for listening and if I can help answer anyones questions I will be happy to!

I have two daughters within 10 miles, they are here almost daily, son and daughter-in-law on our other ranch 50 miles away. We work together so see each other several times a week. Lots and lots of friends, lots of prayers. I have reiki or massage as often as I can get to where I can get it. And I go to a hypnotherapist every two weeks. Even though we are very isolated here in this county (the largest in the states), there are 6000 other people that are isolated with us and the are all our neighbors even if they are 130 miles away. I would say that I have lots of support, but no one knows exactly what I am dealing with. No one in the medical field has dealt with it even in the bigger community that is 200 miles away. Everyone, including me, is kind of at a loss. My husband has stage 4 ductile carcinoma of the prostate (extremely rare variant) and we are dealing with that, as well. Although his is under control for the time being. We were both diagnosed with our cancers at age 55.
How did you get the description at the bottom of your posts?

Shem, so very happy to hear that you are doing so well. Bless you!
My APR entailed taking about a fist size hole out of my bottom, from my front parts to almost my tailbone, eliminating it, the rectum and sigmoid colon. Then opening the middle of my abdomen up all the way from the pubic bone up to my solar plex, moving over two inches to the right and making that same incision again, leaving the right "six pack" muscle attached to that strip of abdomen, they then cut across the top off the strip leaving it attached at the bottom to the artery that comes up out of your leg and feeds that muscle. They then took that muscle, artery, skin and all turned it down towards my backbone and pulled it out the hole that they had cut in my bottom and sewed it up to fill the gap in my crotch. Then they finished with an permanent ostomy on my left side, right at the belt line. It took 8 hours and a gastro surgeon as well as a plastic surgeon. I woke up with grapefruit sized bubble where my butt had been. I feel like a gutted animal. Is this the same procedure that you had? It is amazing that you are up and going so fast!
The area where they grafted the flap or skin diaper whatever you would like to call it had been radiated in the Spring so the tissue is not prime to heal well. This on top of the blown disc and stitches being ripped out around the stoma, as well as the poor placement etc. have been a lot to deal with. To top it all off I am allergic to all pain meds, muscle relaxants, and also reacted to all of the anti-depressants that they gave me after the surgery. So took nothing more than advil and tylenol through it all. I am also allergic to general anesthesia so they tried to do the 8 hour with a spinal, it did not work so they wound up putting me under. Fortunately they were able to handle that without too many anesthesia related problems. The petscan that I had two days prior to the surgery showed the lymph nodes involved prior to the chemo/radiation that I had in the Spring were clear, so they only took out part of them and the pathology after surgery showed 100% involvement still. So they are telling me now that they inadvertently left lymph nodes in that were probably still cancerous. It has all been like a comedy of terrible errors. I feel like such a whiney butt (no pun intended) but it has all been just so much... Thanks for listening...

Sword, you're welcome. I just sent an "introductory" email to you both.

You know, what I'd say to almost anyone in your situation is that you need a second opinion..... I know that's logistically very complicated, but it sounds potentially life or death .... what does "inadvertently left lymph nodes in" mean? Shouldn't that be something they go back in to fix?