Recovery Tips After Proctectomy and Ileostomy Concerns

Hello Everyone, I’m back after my proctectomy/end ileostomy. The procedure was 11/18, so I’m still very sore and tired. 
My surgeon removed my rectum and anus, and fully stitched the wound closed. 
I’ve had a heck of a week. Day 4 at the hospital, the stoma nurse noted an infection at my stoma, but the doctor didn’t believe it. No antibiotics for me!

The day I was discharged, I ended up at Beth Israel in Boston, for the infection. They’ve since given me antibiotics and I assume I’m on the mend.

I wonder, how long before I don’t need to worry about tearing the stitches? My stoma nurse says another 4 weeks, but other sites are saying upwards of 6 months for that to not be a concern. I am terrified of them ripping and having to have another surgery on my bum. Idk if my body can handle it right now.

Also, my stoma is barely above the skin surface, and some stitches have loosened. Which also makes me quite nervous. Right now, I have a deep convex appliance on, where they’re trying to draw the stoma out more before it heals. The belt sucks, and I worry that as I’m sleeping, the belt is pulling the bag places it shouldn’t.

Does anyone also have tips for sleeping? They’re telling me not to sleep on my back due to pressure but I feel less pressure laying on my back.

I wish I felt good, but I know it will be a while for that.

Thanks in advance. I’m still in pain medicine so if I need to clarify, please let me know.

I'm sorry you are going through this. The surgery is hard enough without complications.

I wish I had some advice for you, but my surgery was different. I'm more concerned about how bad you are feeling. Do you have a home health nurse or anyone checking on you at home?

I became quite sick after getting home from the hospital and ended up being readmitted. You should be getting a little better every day. If you are declining or getting worse, you need to be seen by your doctor or in an emergency room.

I slept on my back while healing and still do. The thing you don’t wanna do is sit putting direct pressure on your stitched area. Hopefully you got dissolvable stitches and not ones that have to be removed. Otherwise, healing fully takes time. You’ll start moving more and more, the soreness will go away, and you’ll eventually be back to your new normal. There’s no exact amount of time as each individual heals at their own pace. Getting up and walking is about the best thing for you. Lots of protein to help the wounds heal. 

Please be very very careful. I lost the rectum/anus and half the colon due to cancer. Chemo / Rad slowed healing for me but it was several months until the wound care nurses said I was good to go. The stoma became the new normal pretty quickly but those ass stitches were a pain.

I sleep in a recliner these days. Try to get onto one hip while seated if possible, but do not under any circumstances do anything to pull those cheeks apart. I relied, and still do, on a sitz bath that sits in/on a toilet seat extension so it was not necessary to bend down so far. Also, I recommend getting a lightweight shower chair, without arms. Pull it up in front of the toilet so the bag hangs over the water when seated and take care of business. You may want to consider using a disposable urinal thingy for a while. That throne seat pulls things apart in a very unpleasant way.

Best wishes from the PNW and hang in there. Write anytime!

Hi,

Everybody heals differently because of the nature of where the wound is; it can take time. Mine took 6 months. I sat lopsided to release the pressure and slept on my back. I had a table chair next to the bed with a high back against the bed to help with getting up, avoiding sliding off the bum when getting up. I also dried the wound properly and carefully with a hair dryer after washing to avoid creating a breeding ground for bacteria. Have a good diet and keep moving too. Easier said than done, I know, but you need to keep the circulation going. I am now probably the fittest I've ever been, back to running and gym/carefully riding dirt bikes. You will get there. 😀

My Ostomy Journey: Bruce | Hollister

G-Day Anne, I have stopped wearing a belt with my Hollister two-piece because it pulled the flange out of shape and it leaked. But sleeping on your back is not a great idea as it makes the output pool around the stoma and can give you problems. I hope you have a good stoma nurse. Regards, IGGIE

I feel like all I want to do is sleep. I get up and take a lap or two around the house, and of course bathroom and whatnot, but I've basically been in bed. I want to get up more but I don't have the energy.

I'm just so paranoid!

Your body went through a lot; it takes time to get back to whatever your normal is. Take a lap one day, two the next, and build your body back up. You're not just going to wake up one day and go for 14 hours straight, baby steps.