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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
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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. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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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! 

Linda


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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. 

ileostomy 31st August 1994 for Crohns


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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. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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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. 

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


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danagirll1313
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August 10, 2020 9:00 am  

Hi Rick! I hope you are doing well! I was so sorry to read your post. I recently went through a second surgery, but they decided to close the colostomy, do a total colectomy,( with the exception of enough to reconnect at some point, or so I'm told.) As well as add an iliostomy. I have had a lot of trouble, some of it, my own fault... I drank two beers this weekend and cannot tell you how many times I had to run to evacuate my bowels, or so I thought..it was like you said, a lot of mucus, but a very weird sensation and not normal looking by any means. It's finally better today, but I think it is common to rid your body of unwanted bacteria or mucus, when necessary. I am definitely still trying to sort through this plethora of info. My surgeon was no help at all. Take care and stay safe!


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Rick
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August 10, 2020 9:55 am  

@danagirll1313

Hi,

I have been eating lots of calories to gain back the weight I lost, working out with a bike and hand weights at home.  Just about got back to 25 pounds that I lost, only problem is I’m having with the rectal stump Is more frequent mucus urges sometimes mixed with light blood.  My surgeon said to have the surgery within 12 months,  going on 4 months since the surgery.  Still trying to make a decision on whether or not to get a J pouch surgery or just stick with what I got decisions decisions all the time.


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glenn.giroir
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August 12, 2020 3:46 am  

I've had no issues with my urinary tract after surgery.  If anything, things have been better because my rectum was almost always inflamed before my surgery, which made everything down there a bit angry.    

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)

Doing what it takes to enjoy life to its fullest.


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Rick
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August 12, 2020 1:13 pm  

Anyone have issues with anus sew up?  I have seen issues with healing for months and other issues associated with closure.  Maybe I should stop watching so many you tube videos on this subject..


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SqueakyandLiza
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August 12, 2020 5:11 pm  

@rick

There is a fine line, for me at least, between well-informed and over-informed of the worst case scenario. I want to know what to expect, but at a certain point it just starts to scare me. 😂

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


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LK
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August 13, 2020 5:23 am  

I'm not sure I have a right right to say much here...but I will...Try & remember that everyone heals at a different pace & differently.  Mucous with blood in it... make sure you are checked for Anemia. This has its own list of complications. You tube can be overwhelming with information but I think the best info is right here provided from Eric and those willing to share their personal experiences.  Choose the information that best suits you & your situation. 

No one can tell you what to do, but if my disease was active & surgery was recommended  after a reasonable time different meds. & of not healing... I would want to live my life as problem free & health safe as possible. Consider how your issues are affecting life, plans, desires, goals & your family, your personal life with a spouse & anyone else involved in your life. I am a believer in the Pros & Cons list & have many times found it to be the answer to my decisions, trusting to let it help decide choices I did not want to make, simply because it made better sense then my fears and doubts.  I would also rather make my own decision then be in such a state it had to be made for me again.  

Health issues are like a STORM.  We have all gone thru our own storms & so have those who love us that are watching & supporting & even caring for us going thru them. Knowledge is turned into power & you can control that power by being clear on your decision even if it seems like a bizarre thing you have to decide on.  You are safe here to talk about your issues & try & figure things out,  but when it comes down to it, we all have to decide on how much we can take of what our storm passes us thru. 

When I first joined here, I was surprised to learn about issues that were discussed here and some of it blew me out of my socks, lol, but the relief & answers to questions I had not voiced out loud was muchly appreciated.  I think the best advice I had gained was to ask those questions, get the answers, make notes & keep a journal on anything you are going thru & even eat. Keep it while in Hospital to help you remember when your brain is fuzzy & it will likely get fuzzy, lol.  Later you can go back & read it & see your strength in a whole other way. 

Be as well as you can possibly be. 

Linda


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glenn.giroir
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August 14, 2020 1:35 am  

@rick

My anal incision was healed within 6 weeks.  I had a slight drainage until then, but I just put a liner in my underwear and went about my business.   I have no pain or problems there at all.  I don't even think about it.  I was worried about that also because I read so many bad stories about it.  Fortunately, my experience was good.    

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)

Doing what it takes to enjoy life to its fullest.


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SqueakyandLiza
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August 14, 2020 1:51 am  

@glenn-giroir

Thanks for the feedback. Did it hurt very badly during the 6 weeks it was healing? Other people have said sitting was difficult after surgery.  Was there anything else you had trouble doing while recovering?  Was sleeping difficult?  Any advice to prepare for this surgery?  Thanks!!

 

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


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glenn.giroir
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August 14, 2020 2:55 am  

@squeakyandliza

I don't know if my experience was typical, but I never really had pain down there.  I tried not to sit directly on my bottom just so that I wouldn't hurt anything, but pain was not a real issue.  What did hurt was things like riding in a car and hitting a bump.  It was a deep pain on the inside, but it never really hurt on the outside.  That inside pain completely went away after about 6 months.  It did weep quite a bit at first (for about 3 weeks) and it could be smelly.  I was afraid that I had an infection because of the smell, but my surgeon assured me that the weeping could smell quite bad.  After a few weeks, I got the okay to wash down there gently with wipes or a washcloth.  That really helped, and I think the healing sped up after that.  I had dissolvable stitches down there, and they were a bit annoying until they fell out.  I had no problems sleeping.  I sleep on my right side or my back, and neither position hurt.  I was back at work after 6 weeks, and sitting in a chair for long periods of time was a bit of a challenge, but I just learned to shift my positions often.  I healed up very well, and I have no issues back there.  It is very weird to feel when in the shower and realize that there is nothing there anymore.  And, sometimes I feel like I itch in the inside, which can be very annoying, but rubbing the area seems to make it go away.  There are phantom urges to go do #2.  It is so weird, but they pass very quickly for me.  If I eat a large meal, I feel like I have to go, but of course, I can't.  Not a big deal, though.  I have no problems with my bladder or any other parts down there.  All returned to normal very quickly.  I was very concerned about that part of the surgery, but it was actually very easy for me.  Again, I don't know if this is typical.  I hope this helps.      

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)

Doing what it takes to enjoy life to its fullest.


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sjlovestosing
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August 14, 2020 8:27 am  

@dlkfiretruck

Well said, Linda! I couldn't have written any better advice. 

In addition to doing my homework and weighing the pros and cons, I prayed a great deal for  the insight I needed to do what needed to be done.

I am sure you will make the right decision, Rick. For me there was no choice, I had to have the whole enchilada so to speak,  but I got through it and am here to help if you need any advice. 

God bless,

Stella


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LK
 LK
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August 14, 2020 9:38 am  

@sjlovestosing
Thank you Stella. Personally I am grateful I have not had to make that decision at all & I know my prayers before surgery are always...Dear God help me to cope, recover & heal well!
Glen...on the deep itchy feeling you had or may still get, there are many deep tissues that are healing inside. I believe the "itchy" is regained circulation and healing taking place. I have experienced the itch with many surgeries and know when the healing is complete, then the itch slips away too. Thank you Glen & to everyone who openly sharess their personal experiences & questions here. The importance of it is very great!

Linda


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SqueakyandLiza
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August 14, 2020 2:04 pm  

@glenn-giroir

Thanks Glenn!!

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


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