Stump removal advice please help

Hello all,
I am in desperate need of advise. I had my colon removed and now I'm living with an ileostomy. I opted to leave my rectum in hopes their will be ome miracle where I can get reattached. For the past year I have had arthritis pain thought my body and some days are worse than others. After a series of testing they came up with the conclusion that my arthritis is from a flare up from UC in my rectal stump. My gastro, RA, and surgeon all discussed my case and agreed it would be best to remove my stump in hopes the pains will o away. Im very scared because I hear a lot of problems occur with removal of the stump. Also the thought of closing me up in the back is unsettling. If anyone has had this surgery whether good or bad experience please advise. I have an appointment tomorrow with the surgeon. What questions should I ask. Any feedback is greatly appreciated...

VERY WORRIED AND SCARED PLEASE HELP
Thank you,

Hi Rita,

I'm sorry your going through this. I don't have UC and I assumed that because of the disease and meds, they always remove the stump and if your a candidate get a Jpouch. Leaving the rectal stump might cause complications. I hope your RA is correct in saying that the rectum is causing this pain and with removal, will dissipate.

For over a year I've had my rectal stump, coming to some determination if I should get reattached or removed. I, personally, don't want to wait much longer, just for the thought of rectal malignancy.

Blueglass' questions are a great start. Don't worry, many here don't have a rectum, and I'm sure they will chime in and provide comfort!

I had my rectum removed and was sewn up down there during my original ileostomy operation. I am one who had no complications. I had my staples removed 10 days after the surgery and everything healed smoothly. It hurt a bit for a while, but the pain was nothing compared to my abdominal area. I could even sit on the staples without much pain surprisingly. It is strange to think of your anus being removed, but once everything heals, it pretty much feels and looks the same in the butt crack minus a hole... with the addition of a little scar tissue where things joined together.

Best wishes.

I have an ileostomy/rectum and I am awaiting step two to create the pouch. My GI said that after they take the rectum out, my aches should go away. Just visited an RA and he said the same, except that if I had arthritis in the back it could stay.  I am going forward with the jpouch. 

Great that your surgeon thinks it will be simple.

See if someone at the hospital can give you a waffle pillow - this is a low, inflatable pillow. You don't want one of those donut pillows, they are the opposite of what you need.

Sitting on the toilet is also really bad for the wound. I got something called a pstyle -- it's an inexpensive plastic thing that allows women to pee standing up. There are a variety of makes and styles, but this one has worked well for me. It's good to practice once or twice before surgery, but it's not hard to use. Oh, I guess I mentioned that already -- but it was really helpful for me.

It will be hard to sit for a while..... if you have a recliner, you might be able to sit on it, but regular chairs are hard at first, even w/the pillow. Do you have a long drive home from the hospital? Can someone else drive you? Can you recline the seat? It might also be good to be on your side a bit, w/a pillow between you and the door.

Are you going to have a visiting nurse come to check the wound, and possibly dress it (or pack it if it's open)? You can't really do that yourself, so it's good to inquire.

Right after the surgery, it looks awful w/the stitches and the way they bunch the skin together. I haven't been looking at my wound much, but it's almost healed, and today I tried to look in the mirror -- I was surprised at how much it looked like it used to look, even after all I've been through.

Not sure you'll need this, but after my second surgery, I got a hip kit, with a grabber, and things to help me bathe and put on shoes and socks w/out bending. Helped me keep pressure off the wound. But I didn't have that after the original surgery, so that might be overkill for you.

That's what I can think of for now. Have you scheduled the surgery?

Rita,

Here's the site for the pstyle http://www.thepstyle.com/ I recommend getting the case too. Then you can soap and shake it off, and just put it back in, no need to dry.

I got the hip kit from the occupational therapist at the hospital.

I had my colon and rectum out at the same time, and my surgery then was really long -- but that was due to the colon and to it being lapro. The second surgery was fixing the wound and having a plastic surgeon sew it up -- for that one I was just in overnight, and the surgery took about an hour and a half -- not sure how that will compare to yours, as it's a different thing.

I had stitches in layers, and after the second surgery, my surgeon said it was highly likely that I would open the outer layer up, which I did about a week afterward, getting off the couch. The PT and OT people in the hospital taught me to lie down and get up w/out bending, and mostly it worked pretty well, but that time I just turned wrong.

The first surgery I had an abscess a week after surgery, and the surgeon had to cut open some of the stitches to drain it.

So I've spent most of my time w/the wound open and draining.

After the first surgery they weren't nearly as restrictive on motion. Then I spent most of my time in a recliner.

Sleeping, I found the side most comfortable, w/a pillow between my legs, but that's how I sleep all the time anyways. The stomach is an option, but I never sleep that way. On your back might be uncomfortable at first.

The pain after the second surgery wasn't that bad at all. I took narcotics for maybe two or three days after the hospital, and then tylenol for another week or two. There was some pain, mostly when I rolled over, but after I got repositioned it didn't hurt. It was a little tricky to roll over, but after a bit I figured out the way that hurt the least.

One thing I found was that for the second surgery, neither of my surgeons had a clue about what recovery was like (quotes, "You're smart, you;ll figure it out," and "It's tough."). The nurses were much more helpful, and it was great bringing in the PT and OT people.

After the second surgery, I had to empty my pouch into a jug (male urinal from the hospital). It wasn't awful. After the first I mostly kneeled (couldn't do that at first). One nurse recommended wiping after urinating w/wet wipes, and that was a good idea -- just to prevent infection (and much cleaner during my period, which was not easy to manage always standing up).

Feel free to ask questions -- nice to have all this info I gained be useful to someone else.... but keep in mind that yours might not be as big a deal as mine has been (let's hope).

I don't think you need to get a recliner just for this. A lot of people heal just fine from this surgery -- mine was extreme. If all goes well, you'll probably have to stay off of the wound for two weeks or so and that's all.

I don't know about the body garment, interesting idea...... I'd ask the surgeon about that. I don't know if it would be good for the healing or not to have that sort of thing there.

It's not necessarily awful if the stitches come apart -- some surgeons even leave things open to heal that way. My slow wound healing was due to Crohn's and heavy prednisone use, not to the fact that I tore the stitches.