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SqueakyandLiza
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August 23, 2019 7:55 pm  

I have a question for you guys.  As I think I told you, I had a scope recently to determine if I could be rehooked. While I haven't received official results, the nurse told me the dr saw more Crohn's than he expected. He ordered blood work to see if meds should be adjusted. But in anticipation of the worst, I started reading the topic Sasquatch started about rectal stump removal. Well this scared the bejeezus out of me. 

But it did lead me to this question. I get the impression that not everyone with a permanent ileostomy has had their rectal stump removed. When I talked with the surgeon, he seemed pretty decided that it would be one or the other--reversal or removal. He never mentioned the option of not removing the rectal stump.  Is that normal to automatically remove the rectal stump if reversal isn't an option??

Thanks in advance!!


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Tony
 Tony
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August 23, 2019 8:22 pm  

Hi Liza,

 

I still have my rectum, but reversal is not an option for me. Technically, it could be done, but it would leave me with chronic incontinence and possibly make my Crohn's spread to have the reversal. So, that's my experience. Often the rectum is removed with a permanent ostomy but not always.


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madrikh52
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August 23, 2019 9:16 pm  

My experience is a bit different. I have a permanent colostomy as a result of colorectal cancer. My rectum was not removed because of having radiation, which evidently makes the healing even harder if not impossible. I was scheduled to have a proctolectomy in July of 2018 but decided to head back to pelvic floor physical therapy instead. PT wasn't that helpful with my rectal symptoms of leakage and spasms, so this past April I had a rectal ablation. It was pretty awful but mostly due to a mess up by the anesthesiologist and an infection. I now no longer have leakage but still have the spasms. Unfortunately I have recently been having anorectal pain. Who knows why!! So maybe an ablation is another option for you?

Best, Marci


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SqueakyandLiza
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August 23, 2019 9:26 pm  

Thanks Tony and Marci!!

It is nice to hear that this isn't a given, as my surgeon made it sound. I'm not really having problems. Just occasional bleeding, but not much and very little discomfort. 


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john68
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August 24, 2019 4:19 am  

Hi Liza, I too still have my rectum, it thankfully does not give any trouble. I do have to point out left in for a long period it can cause problems and should be checked. So why do I still have mine, when I had my stoma I was too ill to have it removed the plan was to do at a later time. The years have passed by and at some point it will go.


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LK
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August 24, 2019 7:31 am  

Never in my life would I have imagined I would take part in a discussion of a topic on something like this. I am however, humbly proud to do so. I still have my rectum too.  I had pretty severe rectal spasms for several years after the J- pouch and colectomy, it was incontinence  that was the deciding factor in the ileostomy. After a change in GP and Urologist back then for Interstitial Cystitis, it was decided I would need my rectum for the application of the bladder disease treatment. A lovely little suppository that helps the spasms of the rectum and the bladder. Gives a whole new meaning to relief. Good question Liza! Another one down.


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VeganOstomy
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August 24, 2019 2:37 pm  
Posted by: @squeakyandliza

Is that normal to automatically remove the rectal stump if reversal isn't an option??

Crohn's is a tricky disease because it can show up anywhere between your mouth and anus. 

If someone has had Crohn's in their rectum/anus, then it's more than likely that they will have it removed. If Crohn's has never touched that area, the surgeon and/or patient may opt not to have it done, because it is another surgery and it still does come with risks. 

My Crohn's had heavy perianal involvement, so it would have been a mistake to keep the rectum and anus intact as it would constantly be a source of flares. 

But if it's not an issue, it may be fine to just leave it - whether a reversal is possible or not. Personally, I would just get it done if Crohn's was the diagnosis because even if the rectum/anus were never a problem, it may become a problem later on. 


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Dona
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August 24, 2019 7:50 pm  

Hi Liza,

I too still have my rectum ( or stump thereof). They just left it there ( a sub total colectomy) as it appeared I  had UC and not Crohn's. Sometimes the determination is difficult.   The severe ulcers were in my colin I had no ulcers in my rectum, but I don't think there is enough of it left  of my rectal stump left to reattach to my ileum and not be incontinent. 

Also, at my age I didn't want another surgery. SO its permanent for me by.  The  likely outcome  of incontinence and my general happiness with the outcome I have now.

Of course, everyone is different, and maybe they can get the problems in your colin under control with immune suppressants. 

Hard choices.

P.S... If they could ACTUALLY scare the bejeezus out of us we wouldn't need surgeons!


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VeganLady
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August 25, 2019 4:16 am  

I had my ileostomy operation, and a year later the stump removal. The best decision I ever had...


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john68
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August 25, 2019 5:21 am  

Hi VeganLady, Welcome to the forum, brilliant to hear you are getting on well 


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Dona
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August 25, 2019 11:42 am  

Thanks for joining the conversation, VeganLady.

Welcome!


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sjlovestosing
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August 26, 2019 7:13 am  

Welcome VeganLady,

We hope to hear more from you!

Stella


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Tony
 Tony
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August 26, 2019 7:18 am  

Hi @VeganLady, and welcome. Thank you for sharing your experience with us to help out Liza.  If you're comfortable doing so, please share your story with us on the introduction forum. A double ostomate must surely have an interesting tale to tell but again only if you feel comfortable.


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LK
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September 1, 2019 10:05 am  

Welcome VeganLAdy...as Tony said, share your story when your up to it. I certainly would be interested to hear it and how you cope because of the extent of damage to my bladder from the interstitial Cystitis. I was told years ago, it would likely need it removed and I would be a double bagger. Get to know this site and tho there is not much on Urology and stomas, there is some. I am sure you could be of encouragement not just to me, but, to others dealing with this issue so try not to be a stranger. It is all about tips, tricks, encouragement, and moving forward with healing the best we can here and helping others without diagnosing...we leave that to the docs!

Liza, don't you have your apt. this week? I truly hope and pray that all goes well for you with as good an outcome as one can get.  Sometimes it does take surgery to completely heal an issue as best as can be. You and your wound caring hubby,  have proven you are brave and not afraid to ask questions, so carry on lady, and all the best to you and your hubby in this matter. 


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LK
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January 19, 2020 9:30 pm  

@madrikh52

Hello...LLNorth...is this what you are talking about?  Read madrikh52's entry especially.  


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SqueakyandLiza
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January 19, 2020 10:08 pm  

As long as Linda has brought back this thread, I thought I would post an update. Since I was reluctant to do the rectal stump removal, I contacted Oregon Health Sciences University (very reputable teaching hospital in Portland) for a second opinion. It has taken forever, but I finally got an appointment set up in early April.  I’m hoping they have a different alternative for me. We scheduled so we could meet with both a GI and colorectal surgeon from their Digestive Health Center on the same day in back-to-back appts.  Fingers crossed!!

 


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LLNorth
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January 19, 2020 10:52 pm  

@dlkfiretruck

Thanks, Linda. Well, that was interesting to read. I had the Levator diagnosis last May, did some pt that included a yoga exercise. Then I had some lower back pain that was getting bad, then a scan revealed a fractured sacrum. Was this caused by the earlier radiation? Stressed by the yoga position to the point of a fracture? Whatever .... now I have symptoms that are mostly “inside” feeling. I am going to follow directions but will not do that “child sit” yoga position again.  I am functioning; this is just a nuisance, really. I am working, sewing, doing stuff.


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LLNorth
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January 19, 2020 11:07 pm  

@madrikh52

Thank you, Marci, for this information. I had my colostomy because of colorectal cancer, also, and am dealing with Levator syndrome- your post is helpful. I am doing well and hope you are, also. LL


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madrikh52
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January 20, 2020 11:37 am  

@llholiday

You’re very welcome.

I’m curious, did you have pelvic radiation?

Marci


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LLNorth
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January 20, 2020 11:42 am  

Hi Marci,

Yes, I had pelvic radiation every day for 28 days - and you?


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