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Rectum stump removal and ED

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(@uctoostomy)
Joined: 6 years ago
Posts: 42
Topic starter  

Hey guys,

I am looking for honest information on how your rectum stump removal surgery went, and any affect on sexual function afterwards.   You can reply here or PM but I just want to know how others have faired with this.  My surgeon mentions that ED is a possible outcome, but I am young and enjoy the intimate time with my spouse.     Maybe even having another child in the future.   Looking forward to your 'no holds barred' replies.  


   
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(@peculiarveggie824)
Joined: 5 years ago
Posts: 9
 

Hi there!

I have a sigmoid colostomy and had my rectum removed 3 weeks ago. I resumed sexual activity a few days ago and all was good except for this VERY tense ache in my penis after orgasm and ejaculation which increases in intensity when I have an erection post-ejaculation only. It's still early so I am hoping this is temporary.


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4206
 

My surgeon was very good to ask me how things were in that department. Fortunately, there were no problems then or since. 

I did have pain when urinating for several weeks after the surgery, but then again, I was sore and a lot was hurting after that. Once the pains went away, things were back to normal. 

ED is a risk, and your surgeon would be able to tell you how risky your particular surgery will be (based on your overall health and complexity of your disease). 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Sasquatch
(@sasquatch)
Joined: 6 years ago
Posts: 112
 

I had my rectal stump removed at the end of November of last year.  It took a few weeks for complete function to return, but it eventually did.

As with Eric, urination caused me a little discomfort for a while, but that too normalized after some time.

I was told there is a chance of having nerves stretched, possibly broken, but it appears that mine have all healed properly.

UC since 2002, subtotal colectomy Dec. 2016, proctolectomy Nov. 2018.


   
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(@uctoostomy)
Joined: 6 years ago
Posts: 42
Topic starter  

Thanks for the replies guys.  I meet with my surgeon for a scope yearly, and will be discussing removal.  There is an option for j-pouch and reversal, but I don't think I want to go that route. I appreciate the honesty here.  My rectal stump is quite inflamed at times, and I still use Mesalamine suppositories to help calm the inflammation...  I was prescribed a 'short chain fatty acid' enema mixture,  but had issues retaining it.  Looking at all options, but hoping to keep the stump for a few more years.  Surgeon mentioned that the surgery can be done laparoscopic but the exit wound takes a while to heal.    


   
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Sasquatch
(@sasquatch)
Joined: 6 years ago
Posts: 112
 

I was released to return to work without restrictions roughly 5 weeks after surgery.  That exit wound does take a little time, but not as much as you'd think.  I had another couple of weeks I tried not to exert myself too much.  It's not bad getting through, just keep a positive outlook on it and you'll be fine.

UC since 2002, subtotal colectomy Dec. 2016, proctolectomy Nov. 2018.


   
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(@uctoostomy)
Joined: 6 years ago
Posts: 42
Topic starter  

Its come time for my annual scope of the stump, and besides Covid, I'm terrified.  My stump is a pain the butt, and needs to go.  I'll be talking about removal with surgeon tomorrow. Re-reading this thread was very useful. Hope everyone is doing well out there.


   
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(@squeakyandliza)
Joined: 5 years ago
Posts: 992
 

@uctoostomy

Best of luck at your appointment.  Stay safe. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1467
 

@uctoostomy...I hope things went well for you at your appt.  Honestly, I would have preferred to have mine removed, but was told they needed to leave it because I have Interstitial Cystitis of the Bladder.  One of the meds is a suppository. So I understood that.  Down the road 11 years, I admit I am glad I have it for that particular medication.  I recurring rectal spasms that are rather unpleasant and this is one reason I was preferring to have it removed.  I do not deal with inflammation there since my Ostomy, for that I am truly grateful!  You have a big decision to make I imagine.  Having read your reply, I tuned in to see if you had said how the appt. went for you.  If you would like to talk about it...we area all here for you and for any questions you may have. If not, that is fine too.   Don't mind me,  I just could not help but wondering how things went. 

Linda


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1467
 

@sasquatch...I haven't seen you here in a bit, & have been thinking of you as well as some others missing.  I imagine you lurk on the edges when you have time! lol!  Just want to let you know your appreciated here & were missed.  It is nice to hear you are doing well, do not be a stranger. 

Linda


   
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(@uctoostomy)
Joined: 6 years ago
Posts: 42
Topic starter  

@dlkfiretruck

Hey Linda, thanks for the kind words.  My appt went as well as can be expected. It was a quick scope of the stump and very uncomfortable and painful. I don't take any medication so that I don't burden anyone with having to drive me and pick me up.  

I did get a chance to ask alot of questions though.  My surgeons first response after asking about rectum removal was 'are you finished having children?'   He mentioned that removal can damage the nerves men need for sexual function, generally about 5% of patients experience this according to him.  So I asked how body type, shape and size affects outcome. He mentioned that patients who are smaller and healthier generally have better outcomes in that regard. Then he began the procedure. I told him to enjoy the trip and take lots of pictures. 

I left the hospital before I received the doctors report. I knew what it was going to say..'Inflammation due to diversion colitis' or something along those lines. Now I have tough decisions to make... Have more children?  Have surgery?  Get back on mesalamine supps? 

I also wonder how the body reacts after removal.  Will inflammation simply be redirected to other parts of my body?  Some UC patients and IBD patients experience inflammation of the joints, spine and skin.  I guess everyone's body is different.  I'll visit my surgeon in the new year for an in-office consult for further discussion.  He did mention a J-pouch reversal, but I am not pursuing that avenue. 

Wishing everyone a Merry Christmas, Happy Holidays and a Happy New Year!


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1467
 

@uctoostomy...Thank you for responding! I know any surgery is a big decission. You have to do what is best for you. With my J- Pouch, and down the road, I did not feel it was really worth the effort. Especially the last few years. I am so  in LOVE with my Ileostomy I am thinking of renaming her HONEY!!!! lol! 

It has been a bit of a rough year, but we all try to make the best of things right?!

Merry Christmas to you too! 

Linda


   
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 LK
(@dlkfiretruck)
Joined: 7 years ago
Posts: 1467
 

@sasquatch...hey...you have been another quiet one here.  Care to share how things are going for you?? 

Linda


   
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