So ..... about the procto part of surgery....

So already having a loop and resection I feel very comfortable with everything that is happening with the colon part of surgery, however I am very nervous about the removal of my rectum.

How do they close you up? Will I be able to sit? Did it take a long time to heal because that area has such poor circulation? For women did sex change for you after?

I know my surgeon will go over more when he calls me with my test results and our game plan but its on my mind and the only part of surgery kind of freaking me out.

hi there! I can answer your questions- yup, rectum removal was the toughest part of my entire surgery. I was in the hospital 5 days, & by the time I left, the ileo & colon removal wounds were healing very nicely. The butt, not so much- which is normal! There isn't much blood flow to that area, so wounds are slow to heal. I was closed with staples, about 15-17 total, pretty grotesque. But I preferred that over being sent home with an open wound, packing it, etc. I think it's your surgeons preference. At my 1 week follow-up, I was feeling pretty good, but very sore in the rectum area. I couldn't sit on my butt for any amount of time until a good 3 weeks out. And even then, I had to shift position frequently. I had to use my painkillers for the rectum wound for a good solid 2 weeks, mainly to help me sleep. I took epsom salt sitz baths a couple times a day, after the first week- the doc said it wasn't necessary but I enjoyed them, so... Around week 2-3, I noticed terrible drainage from the wound- I called my surgeon in a panic, & again- normal! It wasn't pus, just lots of fluids. They finally removed all the staples by around week 3- surgeon left them in an extra week. I did go see my WOCN at the wound center 2x, because it just took so long to fully close. Around week 6, I used this packing stuff that looked like cotton candy, tiny pieces to shove in the wound- which by this time was only 2-3 cm's deep. Keeping the edges apart apparently stimulates the bodies healing mechanism. I used that for about 10 days, then it was done. Still tender, still sore, but nothing awful- I took my first bike ride around week 8, which was short & not so comfy, but still! Sex has changed- the angle of my vagina is off, at my first gyn yearly appt, the doctor couldn't even find my cervix! It's like, when I stand up it's ok, but it tilts back when I lay down. Sex isn't painful, but it's different- although now, close to 2 years out, it's pretty close to the way it used to feel. I suggest using lots of lube & trying different positions, going slow. My WOCN actually gave me sex as "homework", to make sure things were ok! It wasn't until like month 3 or so that we even attempted it. I have to put tampons in a little differently too, have to angle them a different way. While it's sort of a hassle, it's absolutely nothing compared to living with UC for years. The rectum wound has healed really well- any doc who's seen it thinks the surgeon did a great job. I know lots of ppl. have awful times with that wound, & am not sure if I did anything to prevent that, or if it's chance. I swear those epsom salt baths helped! Sorry this is so long-winded, but... if I've forgotten anything, ask away! I'm glad I did it all at once, the ileo made, colon out, rectum out... it was a lot for my poor body, but it was over & done. It hurt, no doubt, & seemed to take forever to heal. I'd say total healing time was about 4 months??? Now, I could sit on my butt all day & it doesn't bother it!

I know, staples are kind of freaky! It looked like something out of a horror movie, this line of shiny metal staples... because I would look at it in a mirror 50x a day! I never heard of anyone else having them either, but.. it worked. I met w/3 surgeons prior to actually having surgery, & they all advocated closing the wound, whether stitches or staples. My rectum was always pretty bad too, & I also had a recto-vaginal fistula that needed to be repaired... lots of surgery, it was around 7 1/2 hours total. It wasn't awful, the whole ordeal, but it just took a loooong time to fully heal. Which I expected, but still- you have to go into it knowing that. And just hope for no complications! I'm glad it's done, now. As you experienced yourself, I basically had zero quality of life pre-op, now I not only have a life again, but a decent one!

Eva Lou- Did you do all in one step? Wow, your are a strong woman. Were you on pred? flare? and how was your weight when you did the surgery?

cupcakespinkgal- I had few surgeries for my hemorrhoids in the past. Sitz bath helped a lot and I also filed bath tub with warm water and epsom salt and lie down for 45 min. Whole body and mind felt good. I know it's different surgery but I am sure it will help.

If I ever end up doing surgery it will be permanent ileo. Becausae hemorrhoids gave me enough trouble for the last 20 years and I don't want to do any business with my butt again.

Blueglass were you on any medication when you had your surgery? Were you underweight?

My Surgeon is worried about my nutritional status for healing, as i am very small right now and he thinks my albumin may be really low again. Still waiting to hear from him on that part to see if my bloodwork was close enough to normal or if they want me on TPN for a month prior to surgery. As much as I hate TPN and just want surgery scheduled, if it prevents healing complications it would be worth it.

From my research and a recent thread on the Crohns board a lot of people do not have surgery for a RV fistula and just manage it. I think it depends on the location, size, and what is coming out for them to take action. If stool isn't coming out just gas and mucus it is less likely to operate. In your case you would never have that issue so maybe that is why they aren't recommending surgery?

In my case I don't know how we would proceed if I was not having the colectomy he made it seem like since I'm already being operated on to remove my rectum there is no reason not to repair the vagina.

I was on prednisone. I had to have a set of iron infusions to get ready for surgery and do a fast taper on the pred from 40 to 20 in two weeks. I had been on cimzia but I spiked a really high fever and was in the hospital for ten days. This prompted the decision to get surgery. Had an abscess a few days after I got home which my surgeon said might have been an outpatient thing but because of the pred she came in at night to drain it. That might have been related to the butt wound not healing as a fluid pocket was blocking it.

I was a little underweight for me but I'm tall and no one ever talked about tpn. It's always a tough call I think. If you weren't sick you wouldn't need surgery so you're not going to go into it perfectly healthy. But it does take a lot to recover. I hope you have doctors you can trust to help you make the decision. Just hard to have enough experience yourself to know.

I don't blame my surgeon for the trouble I had with the wound healing. I guess I really don't know for sure but it's a hard surgery, a hard place for a wound to heal, and I was very sick. I always felt she was on my side and knew what she was doing and that she was helping me with a complicated situation. I don't think any surgeon has a no complication record -- there is risk and I was lucky in some ways, unlucky in others.

Of course some surgeons are incompetent and make terrible errors. I don't think that was the case in my situation.