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Rectum removal surgery

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Sun Apr 29, 2018 5:09 pm

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 abother week.  I had raditon treatments prior to surgery and apperantly there  is about a 50-50 chance for radiation patients to devlepe infectons. 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 have happened I probaly would have been ok 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 rectom, 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 periouds but that has also improved with time. Getting used to having a stoma and it's 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!

Sun Apr 29, 2018 5:22 pm

 Hi , I had colon rectal cancer removered  5 years ago, not sure if you have a ostomy bag rest of your life but I do, stay in the Hospital was 6 days,  week after that I was back working out with weights.  Still cancer free and I wish you all the luck in the world, if you have more questions be glad to answer them... Dennis

Sun Apr 29, 2018 6:18 pm

Had everything removed from the small intestine down 5 years ago. It took a good year for rectum to heal - was forewarned 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 more than a few minutes.

paulaAZ's tips are spot on.

Sun Apr 29, 2018 8:23 pm
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!
Sun Apr 29, 2018 8:58 pm

Hi there

I had my rectum removed in January 2018. I had low rectal cancer so had to have an AP resection. I was in 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.

 

Sun Apr 29, 2018 9:39 pm

Hi Martin, I think you mean irrigation, yes?

Sun Apr 29, 2018 11:05 pm

Hi drfields. 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!...

Mon Apr 30, 2018 12:28 am

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-existant.

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!

Mon Apr 30, 2018 12:44 am
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 cam 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.
Mon Apr 30, 2018 12:09 pm

Hi, I ended up having mine removed due to an abcess.  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 the 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 yrs.

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

good luck-Lisa

Mon Apr 30, 2018 12:26 pm

Hi DrFields.....  Best of luck to you.  Recovery with the rectal scar varies.  Some people take a very long time to heal...other's not so much.  Ihave 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 remeember that was in the " dark ages"....   I do remember that it took me awhile to sit comfortably,  and riding a bike, or going horse back riding, took more than a year. But I was lucky in that the incision closed, without infection..   No " wound care" back in the day...    

Mon Apr 30, 2018 7:44 pm

Hello 👋 

i have a couple more questions if it may ask....so are you all saying after I come home from hospital I will only be laying on my side all during day and night? A pillow underneath doesn’t help? Also because of the guaze will I still be able to shower everyday? Will I need to wear diapers at first to help with the drainage? Sorry asking so many questions.

Mon Apr 30, 2018 7:53 pm

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. 

 

Mon Apr 30, 2018 11:54 pm
drfields24 wrote:

Hello 👋 

i have a couple more questions if it may ask....so are you all saying after I come home from hospital I will only be laying on my side all during day and night? A pillow underneath doesn’t help? Also because of the guaze will I still be able to shower everyday? Will I need to wear diapers at first to help with the drainage? Sorry asking so many questions.

Hi drfields, 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 comfortable 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 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.

 

 

Tue May 01, 2018 6:57 am

Hi drfields, As I have posted before my colostomy and rectal closure was all done at the same time 4 yrs. ago. My surgery was done laproscopacly,robotacly so recovery was quite quick. I only had min abdominal discomfort the rectal stitches were actually more uncomfortable but tolerable. I was allowed to showe after I was released after 6 days. I found if I faced the shower head I got less water running over my bottom so it stayed dryer. 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 ther is somethin stuck in my butt. But that is small potatoes and not a big deal. I am still walking around. Yeh.i hope all our answers have helped. Take care and good luck.God Bless.

Tue May 01, 2018 8:50 am

Hi I have not had mine removerd yet but they planing on doing that sometime next year, my preys are with you can you let me know how it all went and how you feel...take care thinking of you xx

Wed May 02, 2018 2:51 am

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 st 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.

Wed May 02, 2018 10:37 pm

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

Wed May 09, 2018 12:39 am

Hello 

as I said before had total hysterectomy in 2015 /damage nerves to rectum / it doesn’t work / I have a colostomy bag and so the mucus is excessive and I have no control so comes down all the time and make a mess. The wonderful thing is I have  3 surgeons staying on top of things and attempted a lot of things before this and I’m ok with it cause it TOTALLY limits leaving the house. So it’s not a rush but a must.

Wed Jun 20, 2018 12:04 pm

Hi Sasquash,

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

Remembered why I joined this site, bc I was afraid of reversal surgery.  I had read so many horror stories in line 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 abdomin that was only going to get bigger and bigger.  There was no way to have the hernia repair without having the stoma take down also, so I bit the bullet and had the surgery along with   Another procedure to repair  and re-route the duedeum.  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 them self what they want to do.  Just saying successful reversals are more likely than unsuccessful ones.  

Tue Aug 14, 2018 1:01 pm

well i went in for a colonoscopy, was told a small cancerous polyp had been removed, and id be fine, to no, cancer had gone from rectum to vaginal area, will have to have major surgery, vaginal plastic surgery, and a colostomy bag the rest of my life in a matter of 15 min.., im 61, this was done in '16...went thru chemo, radiation, surgery, more chemo, recovered pretty quickly...and then the depression hit. im on meds now, but i think the depression is here to stay. word of advice, while recovering from surgery, dont overdo it...youll end up with a hernia that the drs wont touch. good luck to you and God bless!

Thu Sep 06, 2018 7:31 pm
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 its 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 straight forward. Depression yes definitely but isolation is the biggest thing for me its 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.
Tue Sep 25, 2018 7:48 pm

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 painfull with a long recovery.  They were not wrong.  It was 8 hours of surgery and the most painfull 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 Fentynal pump plus ketamine and then oxynorm top up after they had used pain buster nerve blocks for my abdomen and they tried to give my epidural as well with the anaesthetic but I have too much metal work 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 left before I needed to but that was a good decision as I hated hospital and they weren’t really doing anything for me a 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 set back 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 mucous issues which at least I wont 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 pain killers but struggling to be mobile.  Sitting is still difficult but I can manage now with sufficient padding.  I cant imagine when I will be ale to sit properly upright though or drive etc.  I am starting. To walk a little but cant go far without pain and am permanently exhausted.

Tue Sep 25, 2018 8:07 pm

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 its early days it all takes time, its 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 and very sore and getting depressed and not impressed with my new colostomy which is blocking and pancaking and in a very uncomfortable and protruding position right on my waist line.  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 so hopefully there is no where for cancer to go again now.  

 

colostomy is the end of the line and no redundant colon left inside that god so hopefully nowhere w=for cancer to go again.

Tue Oct 16, 2018 2:34 am
Hi mada...I am chirag from india having permanent ilestomy...pl share ur fb account name...so that i can sent u a friend requet...i am also searching a soulmate...also
Mon Jan 07, 2019 11:47 pm

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. Radiation experience was extremely painful. I had radiation burns on my rear end and genital.

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 it was tolerable.

Thanks for your reply. 

Tue Jan 08, 2019 12:05 am

Hi

I'm going to have my robotic abdominal perineal surgery in 2 weeks to remove 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, sphincteretc. Install a permanent stoma for the bag. Hopefully they can take it all out and have a clean surgical margin. I'm hope and pray that everything will go smoothly. Hopefully I wont stay in the hospital for more than 3 days, otherwise I might get a nosocomial infection from the hospital.

I'm just concerned 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.

Tue Jan 08, 2019 12:31 am

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.

Tue Jan 08, 2019 12:51 pm

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

 

Jabra0419, I had mine done roboticaly 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 with out restriction.  Just follow your surgeons insturctions, everything will be fine.  Your bladder may have trouble empting 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.

Tue Jan 08, 2019 1:11 pm

Thanks Sasquatch for your comforting reply.

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