Post-Proctolectomy - Seeking Advice on Recovery and Post-Op Care

Greetings all.

The answers I need are related to restrictions when you have your rectum removed and your butt sewn up. I am facing a proctolectomy very soon.

Some of you know my story.

I have had an ileostomy since 2016 and in the course of 6 years, I continue to bleed. My doctor was hoping for a reconnection, so he left the stump, and that stump over the years has Crohn's now.

The medications were in hopes to solve the mucus and bleeding problems, but after 6 years, you have to consider cancer of the rectum since the main issue is proctitis (and non-use of the rectal piece).

The surgery will be laparoscopic. I am not worried about the procedure; I'm more concerned post-op.

For example, movement?? Will you be able to get in and out of bed without tearing stitches?? What are the limitations you will have once your rectum is removed and your butt is sewed up?? I know there are some obvious answers, and everybody who goes through the surgery has different outcomes... everyone is different... everyone is completely different, so I'm just trying to get a few ideas of what it's going to be like. Whether I'd be laid up for a week?? Would I be able to move around successfully by myself?? What kind of post-op care might be needed to have an outside visiting nurse?? To come in??

I'll take whatever you give me as far as advice and comments, experience...

And the most important question... were you cured of IBD? Or no longer in need of meds to control it??

Thank you.

How are you doing, my brother? I have had that surgery! Three years later, I'm still waiting for the last little bit of it to heal! If you want to know more, get in touch with me.

Since you already have an ostomy, the Barbie butt surgery part isn't that bad. Your stomach will be very sore for a few days. You will not sit for a while and don't push that part. Mine took a long time to heal from a radiation wound so my time frame on healing isn't probably the most accurate for how long it takes to heal. Do not sit to empty your bag, figure out another way, I emptied into a container and then emptied that into the toilet for quite a while. Ask for dissolvable stitches, having regular ones removed looks very painful. Keep the area clean and dry from day one. Since you won't be sitting, you figure out how to roll out/in to bed. Otherwise, time to heal is your best friend. I was up and moving a few hours after surgery, and moving ok once I got home to get around and be self-sufficient for the most part. Your doctor should give you a cushion to sit on or you can order one online. You will learn to sit on one cheek or the other for a while, no direct sitting that puts direct pressure on your stitched-up part. Personally, I still can't sit on certain things or at certain angles cause it just ain't comfy. Any other questions, just ask. 

Hi Warrior, I had my rectum removed with my permanent ostomy surgery in 2015. Quite sore for four or five weeks, pain meds at first and then Tylenol, then nothing. I leaned to one side for a couple of months and sat down very carefully during that time - internal stitches that just absorbed. I did initially have a swollen abscess for maybe three days that hurt but, by the time I got to my surgeon, it had popped and drained (yuck, sorry!) and then took a course of antibiotics. Since the surgery, I've not been on any meds for anything related to this or UC and I'm not restricted at all. Wishing you a very uneventful recovery!

Do not use a doughnut cushion. It will spread the incision. Do not use too thick of a pad on your incision; this puts extra pressure on it. I had regular stitches. When the doctor pulled them out, he missed one. I had to go to my regular doctor, and she pulled the last one. I remember going on a road trip not long after surgery and survived.

My Ostomy Journey: Bruce | Hollister

Thanks, Alex. I had a feeling you'd be the first to reply.

I recall having a conversation with you about this a while ago, and I'm afraid my time is up. Yeah, it looks like soon I will have that surgery, so I appreciate your input. One quick question though, are you cured? I seem to recall your situation did not involve IBD?

I believe it was cancer if I'm not mistaken, correct?

Hi Gene. Thank you for your reply. I'm a little bit concerned as you said 3 years and you're still waiting to heal? That's got to suck...

I'm interested in knowing more as to why it's taking this long for you.

As for me, you can help by answering some of the questions I had in my thread as some of the people have already answered some of my questions. I'm really concerned about movement after surgery if you can be self-sufficient and of course the last question was if you're actually cured of IBD.

Thanks much.

Thank you. That info is very helpful.

Abscesses like that are yucky indeed. Been there, done that a few times.

It's interesting they did the complete proctectomy at that time.

Had my doctor checked the rectum for Crohn's, I think I would have been cured, like you.

But as you know, in emergency surgery, they remove just the part or organ affected.

Which I believe might seem okay at that time but can't help thinking he missed the root of the problem in just "emergency mode".

Perhaps a more experienced surgeon would have completed the job 100% instead of 50%.

Why did they elect complete procto for you?

Thanks.

Hi. Yes, I heard about not using the doughnut. Thank you.

I do have this special pad that is flat and rubber-like, not too hard, not too soft. I also have a raised table that you find in a hospital room for standing to eat and use a computer, instead of sitting.

Not sure anyone thinks about a table adjustable height with wheels so you can be comfortable standing instead of sitting.

Are you cured, Xine?

Hi warrior, I had a full colectomy many years ago when I was very sick with colitis/Crohn's. Both my front incision and where my butt was got infected, but after a couple rounds of antibiotics, they healed. The hard part was sitting upright and not lifting anything, not even a gallon of milk from the fridge, after 8 weeks. I had to go back to work that was shipping/receiving for a retail store, and the manager wasn't happy I was only able to work part-time, but it worked out and haven't had any problems with it.

Yep, as soon as they cut the parts out, I was cancer-free. Where they zapped me with radiation (basically right where my butthole was) wouldn't heal cause the radiation kills the good and bad cells. I had to go through a bunch of additional treatments to get that cured but I've been all good ever since.

As far as your movement concern… you will be able to move but you will be really sore. No lifting and obviously no sitting for quite a while (which is way harder than a person thinks, by the way).

This is the type of pillow they gave me to sit on…..
🔒 Login to see image

Looks like an egg carton..

Cool. Thanks Alex. Will find out more about cushions.

This non-lifting..even a gallon of milk could hurt - blows me away

I'm gonna do something stupid like that.

Hindsight is so frustrating, especially when we know we could've been saved a lot of grief... I had actually opted for a permanent ostomy since my J-pouch was mimicking UC for five years, lots of meds, pain, never knowing what kind of day it was going to be. My surgeon did amazing work for all four of my surgeries - total colectomy, J-pouch formation, reversal, and permanent ileo - and was just cocky enough to remind me that he was removing all of his good work🙄. I wanted to remind him that I wanted to stop after surgery #1 but that he had looked shocked and couldn't understand why I would opt to have a bag for the rest of my life. I thought better of sharing this with him since my organs were literally in his hands and I didn't want to piss him off!

Regarding the pillow, Xnine said no to the doughnut and I concur. I bought several small squishy microbead pillows that worked very well.

https://www.amazon.com/Microbead-Odorless-Sleeping-Spectral-Removable/dp/B08CVPNM27/ref=sr_1_29?keywords=Squishy%2BMicrobead%2BPillow&qid=1692795358&sr=8-29&th=1

~Lori

It was June 2014, colostomy and GI Joe butt were performed. Still today, it can get uncomfortable. The doc says that is just the way it is going to be.

Let someone else do the heavy lifting for you. My wife had to shovel snow for me after one surgery.

I had a 15lb lift limit. I followed it pretty closely except taking the 90lb snow leopard to the lake and having to support him jumping in/out of the truck. Of course, that wasn't for a while after surgery.

Thanks guys about the weight limits... yeah, I am convinced I will need my butt welded shut not stitched for peace of mind.

I had this surgery 10 years ago and all went well. I had family helping me for a couple of weeks with recovery and doing things for me. I remember being tired for the first few weeks and moving about slowly. They tried to do the surgery laparoscopically, but there was too much scar tissue so they had to cut me open using the previous scar. My Barbie butt wound took about 3 months to completely heal. No UC or Crohn's since, and I don't take any meds. It was a good decision for me to have it all removed.

Had the whole works removed when J-pouch was removed 2 years ago. I had pouch inflammation, so had it removed rather than use biologics or immunosuppressives. Was in hospital for two weeks because of ileus, which gave me some time to heal under direct care of nurses at hospital. After going home, it was another two weeks before the butt wound was entirely healed. Had dissolvable stitches. Hospital sent me home with a waffle cushion, but my butt wasn't really very sore. The operation was done laparoscopically, so no big abdominal wound to heal. Once home, was moving around under my own steam. Had no complications. Took it easy for a few months while regaining strength and stamina. No health issues and no meds other than loperamide as needed. It was a smooth journey for me, especially considering how big the operation was. One thing that I believe helped speed my recovery and made it easier: my vitamin D3 level was in the 40s. I really believe this vitamin supports the immune system and healing. You might want to get your D3 level checked before surgery. If it's on the low side, D3 capsules are easy to come by and very inexpensive. I take 4000 mg daily even now to keep my level boosted. This level isn't toxic. The amount in a multivitamin does nothing. It's way too low. You might have to have a home nurse visit to check on the progress of the butt wound.

Best wishes for your surgery. Please let us know how it goes for you. --Rose--

It is important to find and use professionals. For me, the most important person has been my WOC – wound care nurse. I thought taking care of the colostomy would be easier and more straightforward than it was and tried 3-4 WOCs until I found one that was terrific! Home care nurses came for the first several weeks, which was invaluable.

I did get advice from a WOC that I should limit the time I sat for the first 2 months – as in do-not-sit for at least two months! My surgeon did not suggest/follow this, but there is a very large percentage of patients' wounds that fall apart and end up doing wound care for months or more and have a bad end result. I decided to give it a try and I found a great blog post that got me through that, and I had PT come to my house to help me as well initially. It was a struggle – bed with rails on the main floor, 3 grabbers, female urinal, elastic shoestrings, a device to get socks on (needed another human for a while though), stand-up computer desk… My wound healed well. Here is good info:

No Sitting, Minimal Bending, Mostly Bed Rest: How I Coped posted in: Health, Whole Math Teacher Blog | 24

https://debraborkovitz.com/2012/06/no-sitting-minimal-bending-mostly-bed-rest-how-i-coped/

Also subscribed to Phoenix magazine. The best all-around website to answer my questions was https://www.veganostomy.ca

Sloan Kettering website had a lot of great information to access about what to expect the surgery and post-surgical care to be like. Their website helped me out in many ways, and I even joined in a patient group (virtual) after surgery.

I also had a consultation with a nutritionist to help me find a nutritious eating plan (whole food plant-based) that was low fiber for the first two months. Here are a couple articles.

https://www.medicalnewstoday.com/articles/colostomy-diet?utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=MNT%20Daily%20News&utm_content=2021-05-19&apid=32273362&rvid=1b3fac7d5ca36b08bf92cdd68fa448db6f62bd91bd5fa78aa6dd2606a40272b6

https://www.mskcc.org/cancer-care/patient-education/diet-guidelines-people-colostomy Diet Guidelines for People with a Colostomy

Now that I am sitting, I do use a RoHo cushion.

Do your homework around the web and you will find answers to your specific questions. I found more information when I looked up, “Barbie Butt” than I did with proctocolectomy. Good luck.

I had a colostomy & "barbir butt done at the same time. My initial problem was rectal cancer. I went through chemo & radiation first. Most of the tumor was gone, but still in the colon wall. The biggest impact was from the abdominal surgery. I never had a problem with healing or pain in the rectal area. Sore initially but never had any other issue. Wishing you a successful surgery & positive outcome!👍

I had my proctolectomy about 5 years ago.

I did nothing special to prep beyond what the surgeon asked.

I do recall the recovery being a pain in the butt—no pun intended. It was difficult to sit and took maybe 3 weeks to heal. Get a good pillow or donut to sit on. It's gonna be a rough ride, my friend.

Hello,

Interesting reading all your posts. Lots of excellent advice and resources.

I have a permanent colostomy due to a punctured colon, from migrating hernia repair mesh. I had no underlying disease. I'm now wondering. Since my rectum is permanently inactive... does it eventually need to be removed? I'm 65.

That's a good question which I'm sure can only be answered by your doctors. I know lots of people live with them still there.

This is for Beach Boy regarding an inactive rectum and questioned should it be removed.

My doctor told me after 6 years an inactive colon can become cancerous. My 6 years is up and I'm having it removed October 9th of this year, yea real soon.

I had the temporary ileostomy in 2016, in hopes of reconnecting.

However, after that surgery, I kept discharging bloody mucus.

After six years of trying to control the bleeding, it became apparent the "stump" had Crohn's.

So it's time.

Therefore, my answer to you would be yes, have it removed while you can.

Wow. I must say I'm rather fond of my rectum. I pass a little mucus occasionally, no blood. At 65 years old, I'm going to watch my little rectum pal carefully. Maybe give him a name. My stoma is Herb. Maybe call me rectum...Ken. Wait a minute... that's what removing the rectum is called... never mind.

A few months ago my surgeon gave my little "wrinkled one" a digital (gloved finger) check. This sorta freaked me out. I hoped his finger wasn't longer than my remaining rectum stump. I've had 11 surgeries over the years. Sure don't want another one. If my beloved rectum was removed... how could I remain an asshole??

They cannot call us that anymore.

The output...that little spit of mucus or bloody discharge...

It bothers me...annoys me... it smells worse than bag output.

That it would happen at the most ridiculous times such as getting in or out of the car...getting on and off the motorcycle, coughing, sneezing, peeing... I mean hey I get the idea that having the rectum can save the misery of erectile dysfunction because I was told that is a side effect but when you stop and consider the consequences...

I mean if you have a choice in the matter... you'd have to choose between a risk of cancer and a limp biscuit...

Call me limpy.