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Rick
 Rick
(@rick)
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June 26, 2020 7:29 pm  

Hi,

I had ileostomy done Doc said he didn’t want to remove rectum because of how weak I was. Now I have to have rectum removed and I’ve looked and see there can be urinary problems with this surgery anybody have rectum removed and experience problems?

anybody have a second follow up surgery?

I still occasionally experience A need to go to the bathroom normally, and read that cells in the rectum and mucus can cause you to eliminate  a little bit...anybody else experienced this?

thanks


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Gurwinder Singh
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June 26, 2020 11:27 pm  

Hey Rick, I had the same procedure last year in december. I guess it depends on how your doctor will do the procedure. For me they took out my rectum and anus and sewed me up. My dad had a friend who also had the procedure, but he went home with a wound vacuum. My recovery time was only about 4 weeks to completely heal, but I was up and about 2 weeks after the surgery. I also did not experience any urinary problems. After my surgery I was in the hospital for about 5 days and they had a catheter to collect urine up until the day I was discharged. I did feel the need to go to the bathroom even after the surgery to remove my rectum, but that feeling is completely gone now. It is also normal for you to go to the bathroom even with your colon removed because the rectum makes mucus that needs to be expelled. 


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VeganOstomy
(@veganostomy)
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June 29, 2020 10:25 am  
Posted by: @rick

Now I have to have rectum removed and I’ve looked and see there can be urinary problems with this surgery anybody have rectum removed and experience problems?

Hi Rick, welcome to the forum.

Urinary issues can be common as your body heals after surgery, but there is a risk of longer-term problems with urinating, and sexual function so this should be discussed with your surgeon.

I do recall temporary issues urinating (slow to urinate, not feeling as if I had finished, some pressure, etc.) for at least a few weeks after my rectum was removed, but I also did follow up with my surgeon to make sure that my progress was normal and expected. No issues after the recovery phase was over.

Posted by: @rick

I still occasionally experience A need to go to the bathroom normally, and read that cells in the rectum and mucus can cause you to eliminate  a little bit...anybody else experienced this?

This very normal. Even after your rectum is removed, you may still feel the need to poop! It's pretty wild, but also normal. 


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LK
 LK
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June 30, 2020 6:02 am  

Rick...welcome to VO! You will find a lot of answers to issues that may arise here and even encouragement when needed! I'm sorry to hear you need a second surgery. Several have had this issue and will check in here eventually, so you will hear more helpful thoughts yet. 

I have an ileostomy, and short  gut syndrome & I still have my rectum, 11 years now. I still feel the urge to poop or push  sometimes, but it's not too bad & mucus always comes out and  sometimes  a bit of air. I have Interstitial Cystitis, a bladder  disease that requires a medication  in suppository form so they left me with my rectum. 

Ask any question you may have, no question is a stupid question! Don't be a stranger here and let us know  how you are doing from your surgery when you have it. All the best! 


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Rick
 Rick
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June 30, 2020 2:11 pm  

@veganostomy

thanks for reply!  I am at a crossroads of what to do.  I initially had real bad uc and was bleeding terribly, lost 25 lbs, tried IV steroids, humira, and various enemas [by the way over the years corticoid hydrocortisone enemas were effective for a while)  I was approached with surgery being my only option, however due to my weakness, surgeon said rectum removal was too dangerous due to my weak condition, and would do second surgery within a year to remove rectum because it showed possible pre-cancerous cells.  My Gastroenterologist (who did colonoscopy 2 weeks before hospital stay) said it looked “like a war zone” in last section of colon. Don’t know if I should go thru another major surgery and possible lifelong urinary issues, or leave rectum in place and take-a chance-that “maybe” something serious will happen in future.  **sorry so long**

 


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john68
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June 30, 2020 2:32 pm  

Hi Rick, I was in the same position when I had my surgery, too weak to remove the rectum. I was going to have it 12 months after! But I was like an excited dog they couldn’t get me back. It’s been 25 years since my stoma and still have my rectum. It’s never given me any trouble. I have to point out the risks!!!! Please don’t think I am saying don’t do it!! But maybe don’t rush until you feel ready and well . I do have a scope to keep an eye out. 


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VeganOstomy
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June 30, 2020 3:04 pm  
Posted by: @rick

Don’t know if I should go thru another major surgery and possible lifelong urinary issues, or leave rectum in place and take-a chance-that “maybe” something serious will happen in future.  

It's not an easy decision, for sure. I would speak to your surgeon about the potential risks of keeping it vs removing it. As John explained, you may very well be able to keep it "forever" without issue, but if the plan was to remove it, then there may be a good reason for that and your surgeon may be able to better explain it. 

Unless there's an emergency, don't feel like you need to rush the decision. 


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SqueakyandLiza
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June 30, 2020 4:10 pm  

@rick

Welcome Rick,

I am sort of in the same situation. My original surgery was emergency surgery to save my life, so they just took out my colon. Last September the surgeon said he wanted to remove my rectal stump because they feel that is why my original wound is not healing. There is a fistula from the stump to my wound and there was still Crohn’s showing in the rectal stump. 

I felt like it was an extreme measure and wanted to get a second opinion before agreeing to that. It took me a long time to get the appointment set up. Then in April, they changed it to a phone appt. In talking to the doctors, they said they need to see me in person before they could give an opinion. So now I go in 2 weeks to finally see the doctors for the second opinion. In talking to them I felt like they would be leaning toward the removal, but I plan to question them on all possibilities. 

I too am nervous about the surgery and possible side effects. I also have a huge hernia they would probably be repairing at the same time. And they may also be doing a hysterectomy at the same time too. It is all very overwhelming!!

So definitely get all the information you can!!  I can definitely see your wanting to avoid another surgery, but also, you don’t want to mess around with possible cancer.  If you don’t have the surgery, make sure you get the necessary checkups to keep an eye on things. 

Good Luck Rick. 


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