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Rectal Stump Removal  

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Sasquatch
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July 25, 2018 10:15 am  

The time is getting near for me to have my rectal stump removed.  I have an appointment in early October with my colorectal surgeon, hopefully surgery can happen shortly thereafter. I just wanted to get a topic started before hand to try and prepare myself for what to expect. Any advice/tips/things to consider, from those of you who have had this done will be valuable to me.

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


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UCtoOstomy
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July 25, 2018 11:18 am  

Hey Sasq, I am sorry that I do not have any advice/tips.. but wanted to state that I will also require this procedure at some point in the future. My stump still gets inflamed and I use mesalamine supps to calm the inflammation hoping that I can keep it for longer. I try to use one every time that I make a 'movement'.  The mucus can sometimes look like stool.

My biggest fears of stump removal are damage to nerves, and future side effects to the nerves in this area.  I have read that the nerves in the area (over time) can become essentially useless resulting in issues with sexual function.   The longer I can keep my stump, the better. in my opinion. I have had a scope which indicated 'diversion colitis' and have another scheduled for November.   

 I wish you good luck and a safe recovery.  Keep us posted.


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Raine
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July 25, 2018 11:29 am  

Sorry you have to have additional surgery,  never fun.  I had everything after the transverse colon removed in April .  It's similar to what you will be having i guess .  My bottom was sore and achy for the first couple of weeks.  I only needed pain meds in hospital.  You might still have some minor drainage in the beginning.  I actually ended up with hemmies afterwards (leave it to me).  

Hope all goes well.

Raine


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dogtalkerer
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July 25, 2018 2:04 pm  

they took the last 10 inches of my plumbing.   if you think you might want kids someday,  better put some seed in the deep freeze.   no seamen on my ship anymore.   might be lucky and only loose some feeling, have a thorough talk with surgeon on this topic.    I had a drain tube for 6 weeks but I was opened up from both sides at the time.

took over a year before I could sit on a hard surface for long, even 10 yrs later my right leg gets pain in a kayak after 8-9 miles paddling. i can deal with it, not too bad.


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Sasquatch
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July 25, 2018 2:30 pm  
Posted by: dogtalkerer

they took the last 10 inches of my plumbing.   if you think you might want kids someday,  better put some seed in the deep freeze.   no seamen on my ship anymore.   might be lucky and only loose some feeling, have a thorough talk with surgeon on this topic.    I had a drain tube for 6 weeks but I was opened up from both sides at the time.

took over a year before I could sit on a hard surface for long, even 10 yrs later my right leg gets pain in a kayak after 8-9 miles paddling. i can deal with it, not too bad.

At nearly 40 years old, I don't think kids are on the horizon for me. I have read about the risks with losing sexual function, it'd be a shame for that to happen, but I really think it's best to have it removed. I don't have any trouble holding my mucus discharge, but I get some almost every time I empty my pouch, and there is a little bleeding once in a while.  There is a long history of cancer in my family also, and I don't to chance that either. 

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


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john68
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July 25, 2018 3:14 pm  

Hi Sasquatch, I can,t give any advice on the removal, but one thing I have learned over the years is you never know what is round the corner and how live can change. discuss all these issues with the doctor/surgeon.

ileostomy 31st August 1994 for Crohns


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sjlovestosing
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July 25, 2018 6:54 pm  

Hello Sasquatch,

Having had my entire rectum removed, I might be able to give you an idea of what to expect. I had a morphine spinal before my surgery, which did numb the area. As a matter of fact, there are portions of the posterior that are still a little numb to the touch. I was put face down for this part of my surgery. The rectum was removed and I was sewn up in that area. After about nine weeks, my wound is still healing and I still require a "waffle" to sit on on hard chairs. I also sit very gingerly, as it is still sore. Some nerves were damaged in the bladder area, so I am self-catheterizing. I am gradually getting some feeling back, but my urologist said it could take up to a year. I am ok with this, as the surgery removed my cancer (so far as I know). As John said, any fears or concerns you have should be discussed with your surgeon. God bless - I'll pray for you.

Stella

 


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LK
 LK
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July 26, 2018 2:07 am  

Sasquatch, I am not sure what symptoms require removal of the stump, I know that I deal with sudden urges to go from mine and then a lot of mucus and twisting type spasms. I had no idea this was an option until I started reading on this sight. Thank you all for the education! I always consider myself lucky to have made it to the bathroom. It frustrates the living daylights out of me and I always fear having an explosion in public. Being a widow, it has been ten years since I have had sex.  He was my one and only partner. Some people are appalled at that, but honestly, once I got used to the idea of no more sex, it was really okay. Without the encouragement to have sex, there is no sex. I have missed the intimacy, but not horribly. I miss more the companionship then anything.  What I am saying is...it is doable! Yes, you are relatively young, but sex is really not the important thing in a relationship, there is so much more involved.  You have a fair deal of time to think about these things and you will make the best decision for yourself and that is the important thing. With my bladder disease, Interstitial Cystitis, I face the huge possibility of joining the double bagger club, Sex has always caused great pain I have related it to having crushed glass in that part of my body. You just do what is right for you, I am sure you have done your reading.  The surgical tools they have access to now a days are years ahead of what may be used when the negative issues were discovered. It is my understanding that they  have to cover their stomas for insurance purposes. Good luck with your surgery, I am sure you will heal very well. Lets us know when your surgery is, so we can all encourage you though the tough times. Thanks for sharing!

Linda

Linda


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sjlovestosing
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July 26, 2018 7:59 am  

PS to my last post: I also had my anus removed as well, which accounts for the sewing up the posterior. So, I am not sure if that is what would happen in your case. My thoughts and prayers are with you.

Stella


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VeganOstomy
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July 26, 2018 10:24 am  

Hey Sasquatch,

I did keep a diary of sorts for my surgery, which you can start reading about it here:

https://www.veganostomy.ca/all-done-what-my-last-and-hopefully-final-hospital-stay-was-like/

Continued to here (WARNING: There is graphic content in this series):

https://www.veganostomy.ca/perianal-disease-a-timeline-part-1/

Do you know if you'll be sewn up or will you be put on a wound VAC? If I could go back, I'd likely want to be sewn up and the wound VAC (admittedly, one that was not working right) did not go as planned and resulted in a long recovery.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Sasquatch
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July 26, 2018 12:24 pm  

That's awesome, I will make sure and take a look at that article.  I'm not sure yet, whether I'll be sewn up or not.  I imagine that will be discussed at my appointment in October.

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


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jaymitch
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July 26, 2018 2:05 pm  

Hello Sasquatch!!

I had my surgery on May 15th of this year. They took out everything from the end of the colon South. I was initially "sewn up" but the home health nurse didn't like how it was looking a week after surgery so I had another visit with my surgeon and he opened it back up and said we'd have to "pack" the wound twice a day and let it heal in that manner. So he shot me a little demo video on my phone while he and his nurse packed it the first time. Came home shared that with my Gal and asked her if she was up to the task and God bless her she said "yeah, no problem!". At that time my Home Health nurse was coming twice a week and she kept an eye on it through out the process and it all went off without a hitch. Fast forward to today; the wound is still healing, we're still attending to it twice a day but it is down to the size of quarter as opposed to the apple we started with. (Eric's pics in his article looked pretty familiar!) As with most cases of rectal cancer getting "put back together" wasn't really an option so I never entertained it. I am returning to work as a commercial driver full time on Monday and have been playing golf since week 5 post surgery and we went on a 1200 mile road trip two weekends ago all while dealing with all this "new stuff". 

The surgery did mess with my bladder function for a couple weeks. I had to come home with a Foley catheter for a week but that's back to normal. I am experiencing some ED but at this point in my life that just isn't a priority.

Bottom line (no pun intended) it can be a little challenging but definitely manageable.

Hope it all goes well for you!!

 

 

Jeff - Sigmoid Colostomy May 2018


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dogtalkerer
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July 26, 2018 4:04 pm  

forgot to mention a couple things.  I pee oddly now days, started when I got home, 10yrs ago now..  first I could not tell I was done peeing, had to watch what was going on. still happens sometime but not that frequently.     then I have odd things like in the morning, I'll pee,  then 5-10 minutes later I have to pee again, sometime again,  but the rest of the day I'm fine as normal.  seems to have something to do with laying down.   but I see this stuff as minor.

I had a drain tube for 6 weeks,  it was small and I emptied once a day I think.

for a long time, now and then   I would get feelings like I needed to sit on toilet, that slowly went away. I do get pain from time to time that will last a minute or so, maybe once a month.


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madrikh52
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July 30, 2018 1:04 pm  

I will be following this thread. I was scheduled to have my rectal stump removed and be sutured closed on July 24th but cancelled my surgery. I have decided, with my doctors' approval, to work with a pelvic floor physical therapist for a few months to see if that brings some relief from my symptoms (spasms and discharge).
My situation is somewhat different in that I had a recurrence of colorectal cancer that presented in the form of a tumor sitting just to the right of my coccyx. Before surgery to remove the tumor, I had 6 weeks of pelvic radiation. As time passes and I develop more and more symptoms (that are a "mystery" to my oncologist), I'm feeling desperate for something to give.
When I told my surgeon I wanted to delay surgery and work with a PT, he told me that he would be happy if he never has to perform this surgery on me because he's concerned that, 1) it may not help and 2) it may increase my pain. My understanding is that radiated tissue doesn't heal well so that potentially causes all kinds of complications. I also have a lot of scar tissue in my perineal area.
Anyway, I'm glad for all of you who have not had pelvic radiation. My PT calls radiation "the gift that keep on giving"!
I hope your surgery goes well Sasquatch!


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Marcie
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July 30, 2018 2:58 pm  

MAd52-----------Your a strong person and I wish you the very best in this approach of yours.  You my  just have something here!!  Easy gong now-- Don't want a  herinia..   Good Luck!! 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Sasquatch
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July 30, 2018 4:29 pm  

madrikh52, I will most definitely keep updates coming on this thread. I guessing I will need some support as I go into this. I don't expect to have surgery for a while yet, I want to hold it off so that most of my outdoor work is wrapped up before I do. From what I've read I don't think I'll be able to do any mowing for a while after recovery, and I don't have anyone I can ask to help me with it. Late October/early November is my target, would be nice to be getting along with the recovery process before the holidays come.

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


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john68
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July 30, 2018 5:47 pm  

Hi Sasquatch, It sounds like you have a good plan sorted out their, One thing you have on yer side is youth which makes healing a lot quicker.

ileostomy 31st August 1994 for Crohns


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UCtoOstomy
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August 1, 2018 2:00 am  

Hey Sasq, i’ll be 2 years with my ileostomy in September with sub total colectomy.  (Still have over 20 cm of tubage) The bloody mucous and discharge started immediately, and i ‘self medicated’ with the mesalamine suppositories i had left.  When i saw my doctor, she said they were fine and I now use one after  very mucus passing.  It can be every couple days, sometimes more.  But if i forget to use one, then its like colitis all over again.  Bloody discharge several times a day.   I hope to keep using the supps until my annual scope convinces me that i need the stump removed.  I am scared to try a j pouch and scared of the what will happen if i keep this stump too long.  Happy to live my life to the fullest with my ostomy and do not miss the toilet at all!    I will follow this thread closely and wish you the best.  Blessings and thanks to everyone on this forum, and a shout out to Eric for this immensely valuable website and community.  Can’t thank you enough


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Valerie
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September 29, 2018 10:33 pm  

Dogtalkerer- I had my surgery 32 years ago, and still have the same pee thing like you in the morning- pee when I get up, and then have to go again in 10 min., blamed it on catheters during surgeries. I also still sometimes feel like I need to sit on the toilet, and occasionally get a sharp shooting pain that only resolves by sitting on the toilet with a little pushing pressure. That shooting pain was horrible in the early years until I learned how to stop it. I cannot ride a bike, sit on concrete, or on wood chairs very long. 

UC at age 18, 1981. Diagnosed at 20, proctocolectomy with permanent ileostomy at age 23, 1986.


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Sasquatch
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October 8, 2018 7:57 am  

Thursday is the appointment to schedule my proctolectomy, this is getting close now and I'm a little on the nervous side.  As soon as I know anything I will get details posted.  Thanks everyone for being here for me, I have no doubt that I'll need to lean on you guys through this.

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


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