Rectum Removal Surgery - Hospital Stay & Recovery Experiences?

I had the surgery almost a year ago to the day. I had rectal cancer, so I had to have it removed along with a third of my colon. I was in the hospital for two weeks, but only because I developed an infection. I had actually gone home for a day after a week-long stay but noticed drainage that shouldn't have been there and ended up back in the hospital for another week. I had radiation treatments prior to surgery and apparently there is about a 50-50 chance for radiation patients to develop infections. Obviously, the odds for me were higher than most, and I don't mean to scare you, but unfortunately, infections are a risk even with minor surgery. If the infection had not happened, I probably would have been okay and back to a "normal" life in a couple of months. I can't speak to what life is like with an ostomy and still having a rectum, but I can say that once I recovered, it has had no negative influences on my life. It still hurts a little when I sit for long periods, but that has also improved with time. Getting used to having a stoma and its care has been the hardest thing for me to get used to. But not having an anus sounds weirder than it actually is. God bless!

Hi, I had colon rectal cancer removed 5 years ago. Not sure if you have an ostomy bag for the rest of your life, but I do. My stay in the hospital was 6 days. The week after that, I was back working out with weights. I am still cancer-free, and I wish you all the luck in the world. If you have more questions, I would be glad to answer them... Dennis

Had everything removed from the small intestine down 5 years ago. It took a good year for the rectum to heal - was forewarned of this by my surgeon - but (no pun intended) still have some problems with pain to this day. Took a pad to sit on wherever I went and still need to use it on longer car rides. I still can't sit on harder chairs for more than a few minutes.

PaulaAZ's tips are spot on.

Salut comme-ci comme ça. Tu es francophone? Je suis prof de français et j'ai vécu longtemps en France. I wish you the very best on this ostomy adventure. It's great to have support from those who understand the ups and downs of bag life. I've had mine for almost nine years and am thankful every day to still be alive!

Hi there.

I had my rectum removed in January 2018. I had low rectal cancer, so I had to have an AP resection. I was in the hospital for 6 days and off work for 5 weeks. I got a support belt for work and doing things around the house and yard. I think the worst part of it all is the sitting. It was very painful for a few months. Even sitting on the edge of the bed for a short time hurt when I rose. It still feels uncomfortable, hurts a bit if I am at the computer for too long, but at this stage, I am cancer-free, which is the main thing.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Hi Martin, I think you mean irrigation, yes?

Hi Dr. Fields. You'll probably need more prayers if you don't have your rectum removed. At least, according to my surgeon. I had my colostomy in November of 2016 and my rectum and anus removed in November of 2017. The primary reason was to eliminate any chance of cancer due to the severity of my ulcerative colitis. My hospital stay was 9 days. Recovery took longer because the stitches performed by the plastic surgeon team failed to disintegrate and were causing irritations all along the incision. So I ended up with an additional surgery in late January to redo the stitching. Recovery has been relatively swift. It feels strange to not have an anus, but at least no one can, accurately, call me an asshole. It's not a bad "club" to join. You'll be fine which is, of course, our goal!...

Yes, I had it done in September 2017!

Rectum j-pouch removed and permanent ileostomy. The surgery probably saved my life! I was almost living on the toilet, my anal area raw from the non-stop watery bowel movements. I never slept for more than an hour at a time. I was exhausted and miserable. My quality of life was, well, non-existent.

The surgery involved 6 hours of reconstruction then 2 more hours of plastic surgery.

The most difficult part of the recovery was that I had to stay off of my bottom for weeks. I couldn't lie flat on my back and I couldn't lie on my stomach. One side or the other. No sitting period. No bedpan because urine would contaminate the incision. I had to squat over the toilet.

Recovery was difficult but God brought me through and looking back I'm so happy I had it done. I have my life back! Literally!

I don't know anything about you or your current challenges but if your life is anything like mine was, do it. After recovery, you will be so glad you did.

I had mine done at U of M in Ann Arbor, Michigan. Dr. Samantha Hendrin. Excellent surgeon! I received excellent care. No regrets!

Hope I didn't scare you!

Good luck!

I had my colon and rectum removed 9 years ago due to colon cancer, and I have no complaints. You should expect to have no limitations on your life unless there are other things going on. I came home from the hospital after 4 days and did some work from home the following week. For me, the rectal wound took a long time to heal. It was mostly healed pretty quickly, but the new skin needs to fill in (it's called granulating), and in that area, it tends to get pulled as your cheeks move and moist from sweat, not ideal for healing. The thing that really worked was to keep it very tightly packed with gauze, changing it daily (or possibly less often if changing it disturbs it too much). Roll some gauze up to about the size of a pencil and poke it in to keep the area dry and undisturbed. Let the ends stick out to make it easy to remove. In the beginning, if you are actually bleeding, you might need to change it more often.

Hi, I ended up having mine removed due to an abscess. When I had my temp colostomy they left it and I hated it because there was mucus that drained and to me it smelled, so when I got colostomy made permanent they removed it. The only issue I have about 5-6 times a year is phantom pain there. I still feel like I have to go to the bathroom and it is the most sickening feeling, but no other problems in the last 29 years.

Since I was only 21, I was in the hospital for 10 days and off work a total of a month.

Good luck - Lisa

Hi Dr. Fields..... Best of luck to you. Recovery with the rectal scar varies. Some people take a very long time to heal...others not so much. I have had my ileostomy for more than 50 years....since I was 15.... But the doctors had me wait another 4 years before removing the diseased rectum (Ulcerative colitis). They had hoped it would heal, but it never did. I fought for the surgery despite the doctors and my parents, and I've never regretted it. I don't remember exactly how long it took to heal....as I had other complications that kept me in the hospital for 10 weeks. But remember that was in the "dark ages".... I do remember that it took me awhile to sit comfortably, and riding a bike or going horseback riding took more than a year. But I was lucky in that the incision closed without infection.. No "wound care" back in the day...

Hello.

I have a couple more questions if it may ask... So, are you all saying that after I come home from the hospital, I will only be lying on my side all day and night? Does a pillow underneath not help? Also, because of the gauze, will I still be able to shower every day? Will I need to wear diapers at first to help with the drainage? Sorry for asking so many questions.

Is removing rectum a big deal? I have my colosomy almost 2 years, kind of dreading reconnect at 63. Anus mucus ;is manageable. I had dverticulitis and then burst. So can I eat popcorn now since they rearranged everything? Just asked gastroent if i could eat nuts and he said yes.

Hi Dr. Fields, ask all you want - that's why this forum is here :-)

I can only speak for myself. I had everything (ileostomy + rectum) removed at the same time so my issues weren't only rectum related.

* The rectum removal itself caused me no problems as far as sleep position (positioning was problematic due to the abdominal surgery and the resulting fluid build-up).
* I could sit relatively comfortably on a cushioned couch.
* I could not sit on a "hard" chair for quite a while (still limited after 5 years).
* Always took a cushion with me in a car (still use it for long travel).
* I replaced gauze daily.
* Very important to keep the area dry during healing. I could shower but thoroughly dried the area (hairdryer - not too hot).
* I had no need for diapers. Any bleeding/drainage absorbed by gauze.
* I do still get the "phantom pain/urge to go" as has been mentioned.

One further note: My surgeon told me I had hemorrhoids the size of lemons and a lot of tissue had to be removed. This may be why my recovery was on the hard side.

Hi Dr. Fields, as I have posted before, my colostomy and rectal closure were all done at the same time 4 years ago. My surgery was done laparoscopically and robotically, so recovery was quite quick. I only had minimal abdominal discomfort. The rectal stitches were actually more uncomfortable but tolerable. I was allowed to shower after I was released after 6 days. I found that if I faced the shower head, I got less water running over my bottom, so it stayed drier. I never had gauze packing. I was also able to sleep on either side or back, not tummy, for obvious reasons. Yes, I still occasionally get the feeling that there is something stuck in my butt, but that is small potatoes and not a big deal. I am still walking around. Yeah. I hope all our answers have helped. Take care and good luck. God bless.

Hi, I have not had mine removed yet, but they are planning on doing that sometime next year. My prayers are with you. Can you let me know how it all went and how you feel...take care, thinking of you xx

Hi friends,

I had my rectum removed January 18, 2018 due to rectal cancer. I had radiation and chemo before my surgery. I got 100% removal and clean margins, 3 positive lymph nodes out of 13. I opted for no post-op chemo as I wanted to get back to work as soon as possible. I was in the hospital for 2.5 days - I came in on a Thursday and left Saturday morning. I'm a nurse and I knew the discharge criteria, plus I was absolutely insistent on getting out. I was a bit of a pain in the ass, but hospitals are no place for sick people. Eventually, if you're in the hospital long enough, you'll get an infection.

I've had lots of pain from prolonged sitting - my job requires prolonged sitting, and hard chairs are difficult for me. I have a sacral cushion but I think I will get a waffle or Roho cushion. I had the most pain directly post-op in my abdomen, and with sitting, pretty intense at times, and then learning how to deal with the stoma, colostomy, bags, and eating differently has been a process. Right after surgery, I had a drain in the anal area that was quite uncomfortable. I'm a heavier woman, so I get a lot of back pain since my abdominal muscles were cut extensively and building my core, and walking, are what I am focusing on now. I was out of commission for a good 8 weeks, but I feel much better now. I'm very self-conscious of the colostomy and I think I will start to irrigate in the next few weeks.

Lastly, I could not have gone through this if not for my husband and my healthcare provider. They are my main support and my husband has been a star in caring for me. It's so important for your emotional recovery, too.

Please feel free to reach out by PM if I can help - I'm always happy to support someone else.

I had my rectum removed 2 years ago due to rectal cancer. I was in the hospital for 20 days and recovered at home for about 4 months.

Hello.

As I said before, I had a total hysterectomy in 2015 which damaged the nerves to my rectum. It doesn't work, so I have a colostomy bag. As a result, the mucus is excessive and I have no control, so it comes down all the time and makes a mess. The wonderful thing is that I have three surgeons staying on top of things and they have attempted a lot of things before this. I'm okay with it because it totally limits leaving the house. So it's not a rush, but a must.

Hi Sasquatch,

Think I had seen one of your previous posts about this and

Remembered why I joined this site, because I was afraid of reversal surgery. I had read so many horror stories online about bad results and decided to stay with the colostomy for the rest of my life. Then I developed a HUGE hernia on the opposite side of my abdomen that was only going to get bigger and bigger. There was no way to have the hernia repair without having the stoma takedown also, so I bit the bullet and had the surgery along with another procedure to repair and re-route the duodenum. Talk about scared??? Luckily it all went very well and I am so thankful for all of it. I know everyone's situation is different and only the person having surgery can decide for themselves what they want to do. Just saying successful reversals are more likely than unsuccessful ones.

Well, I went in for a colonoscopy. I was told a small cancerous polyp had been removed and I'd be fine. To my surprise, the cancer had spread from the rectum to the vaginal area. I will have to undergo major surgery, including vaginal plastic surgery, and use a colostomy bag for the rest of my life. All of this happened in a matter of 15 minutes. I'm 61 years old and this was done in '16. I went through chemo, radiation, surgery, and more chemo. I recovered pretty quickly, but then the depression hit. I'm on medication now, but I think the depression is here to stay. Word of advice: while recovering from surgery, don't overdo it. Otherwise, you'll end up with a hernia that the doctors won't touch. Good luck to you and God bless!

I have the same problem though in reverse with an operation first, then some chemo and radiation about 18 months later. It has been nearly four years now and, well, I manage but it's still hard. I have done quite a bit of travel overseas (US, Europe, and Japan) and am off to Samoa in about four weeks, but travel is not so straightforward. Depression, yes, definitely, but isolation is the biggest thing for me. It's so easy to make excuses when you know that bag will fill or make those little sounds at inappropriate moments. Good luck on we go.

Hi, I don't know if I can be very encouraging, but this is what is happening to me at the moment! I am 7 weeks post-surgery to convert ileostomy to colostomy, repair hernia and prolapse at the old ileostomy site, and remove my rectum (some colon) and anal canal, and basically make the colostomy the end of the line on the inside! I was warned the surgery would be major and painful with a long recovery. They were not wrong. It was 8 hours of surgery and the most painful I have experienced, and I have had some pretty radical spinal surgery in the past, but what I woke up with this time takes the prize! They had me on Fentanyl pump plus ketamine, and then Oxynorm top-up after they had used Pain Buster nerve blocks for my abdomen, and they tried to give me an epidural as well with the anesthetic, but I have too much metalwork in my spine and it couldn't be done.

I spent 2 days on HDU unit, then 2 weeks on the ward, and was desperate to get home, so I left before I needed to, but that was a good decision as I hated the hospital and they weren't really doing anything for me at that point, which the district nurse couldn't deal with. However, I have had a huge amount of pain and discomfort, plus I had a setback with a wound infection and am still feeling as if I have been run over by a train.

I am hoping I achieve a better quality of life when I am recovered from all of this, but it seems like it is going to be a long uphill process, so I wish you luck. I had my ileostomy in January and have had nothing but problems since, including horrible extreme mucus issues, which at least I won't have to deal with now. Also, I am glad that my risk of cancer isn't still lurking in the redundant colon as it was after the ileostomy.

I'm on very strong painkillers but struggling to be mobile. Sitting is still difficult, but I can manage now with sufficient padding. I can't imagine when I will be able to sit properly upright though or drive, etc. I am starting to walk a little, but can't go far without pain and am permanently exhausted.

Hi, I see you had your rectum removed two years ago. I've not had the chance to find anyone to talk to about their longer-term recovery, and the medical people just keep saying, "Oh, it's early days. It all takes time. It's a long recovery!" I'd like to know how you are now, as I've just had the operation 7 weeks ago and I am feeling dreadful, exhausted, and in pain. I am very sore and getting depressed. I am not impressed with my new colostomy, which is blocking and pancaking and in a very uncomfortable and protruding position right on my waistline. My stomach is still distended, and I can't imagine getting my shape back.

I had an ileostomy in January, which was a disaster. The skin never healed. I had high output problems and leaks and a huge hernia and prolapse, and then dreadful mucous problems. I've now had that converted to the colostomy, and the rectum and anus removed so that the colostomy is the end of the line and no redundant colon is left inside. Hopefully, there is nowhere for cancer to go again now.

Colostomy is the end of the line, and no redundant colon is left inside. Thank God, so hopefully nowhere for cancer to go again.

Hi Mada... I am Chirag from India, having a permanent ileostomy. Please share your Facebook account name so that I can send you a friend request. I am also searching for a soulmate.

Hi.

I'm going to have my robotic surgery to remove the tumor from my rectum (low and close to the sphincter). It's scheduled in 2 weeks. I had 27 days of chemo and radiation. The radiation experience was extremely painful. I had radiation burns on my rear end and genitals.

Is there any advice on how to prepare for this surgery? Your post said that you had a problem with the healing of the perineal wound. I was wondering if it was painful all the time or if it was tolerable.

Thanks for your reply.

Hi

I'm going to have my robotic abdominal perineal surgery in 2 weeks to remove a tumor on my rectum. I also had 27 days of chemo and radiation. The tumor shrunk but the colorectal surgeon said I need a "barbie butt" surgery. They are going to remove my anus, rectum, sphincter, etc. Install a permanent stoma for the bag. Hopefully, they can take it all out and have a clean surgical margin. I hope and pray that everything will go smoothly. Hopefully, I won't stay in the hospital for more than 3 days, otherwise, I might get a nosocomial infection from the hospital.

I'm just concerned about how you cope with the pain of the rear end. How soon were you able to drive, even at a short distance.

Thanks for the reply.

I was wondering how your surgery turned out. I'm going to have mine in 2 weeks, to remove the rectum, anus, etc. They are going to do a robotic abdominal perineal surgery. I was wondering if I could get some advice on what to expect based on what you experienced.

Thanks and God bless.

Surgery was done on 11/26/18. As of last Wednesday 1/2/2019, I was back to work.

Jabra0419, I had mine done robotically as well. The first few days are a little painful, but it wasn't horrible. Four weeks from surgery and I was able to start getting back to doing normal everyday activities without restriction. Just follow your surgeon's instructions, everything will be fine. Your bladder may have trouble emptying completely for a little while, I spent an extra couple of days in the hospital because of that. You most likely will have a lifting restriction for four weeks or so.

Thanks Sasquatch for your comforting reply.