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The gift that keeps on giving—rectal stumps  

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JTVT
 JTVT
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March 2, 2020 9:41 pm  

Hi All,

Wondering if anyone has experienced an uptick in rectal stump symptoms after months/years. I’m >4 months post-subtotal colectomy and have recently experienced a return of the urgency and tenesmus I experienced during UC flares. I’ve had a small amount of bloody mucus every 3-4 days all along after surgery—no big deal—but now I’m experiencing those familiar sxs. Nothing even remotely close to prior flares but still reminiscent and unsettling. I stopped using ASA suppositories a month or so ago. Maybe I need to restart. And here I thought surgery would be curative. Did this resolve over time for those with rectal stumps? Have any of you required immunosuppressive meds for rectal bleeding/symptoms? That would be a bummer after all this.  


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UCtoOstomy
(@uctoostomy)
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March 3, 2020 1:22 am  

I am 3.5 years post op with rectal stump.  My body still hates this part of me and I suffer sometimes. I use ASA suppositories regularly, almost daily.  ‘Stump movements’ can be daily, multiple times. Or every couple days.  And in my case becomes more inflamed when my diet isn’t great.  Meat and spicy food are some triggers.   Sometimes feels like UC all over when I’m trying to keep/retain a supportory long enough to calm the area.

I feel your pain.  I am afraid of surgery and am currently choosing no reversal or j-pouch. 


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SqueakyandLiza
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March 3, 2020 3:03 am  

I have a fair amount of mucus daily, with a bloody tinge to it. And also that need to sometimes hightail it to the toilet. The constant draining is probably a combo of my rectal stump and the fistula being kept open by a seton ring from an abscess I had 13 years ago. 

I am on Humira, but it hasn’t helped with any of this. 😕


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JTVT
 JTVT
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March 3, 2020 8:15 am  

@uctoostomy

Damn, that sucks. No better way to say it. I didn’t have much of a choice when it came to surgery but I found comfort in thinking colectomy would at least solve the UC issue. Your story and the last few days would suggest otherwise. I, too, will be considering reversal in the next 2 years. These symptoms would definitely tip the scales toward surgery for me. I know the high incidence of pouchitis, frequency and other such issues but at least they would be confined to one hole.  Ongoing rectal inflammation on top of the ostomy just sucks. 

@Liza

I’m sorry to hear of the ongoing leakage and symptoms. As above, it is so burdensome and I wish you resolution to at least some of these issues. These things should be equally distributed throughout the population, not heaped in one individual ;-) 

 


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VeganOstomy
(@veganostomy)
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March 3, 2020 10:03 am  
Posted by: @jtvt

I stopped using ASA suppositories a month or so ago. Maybe I need to restart. And here I thought surgery would be curative.

Did you stop under your doctor's direction? I'm assuming you had no symptoms before this, correct?

The rectal stump tends to be at high risk for being attacked by IBD and unless reconnection is expected, removing it is often the best way to go (although, it does require another surgery). 

Discharge is normal, but I would let your doctor know about the blood. It could be related to the active symptoms you've been experiencing. 

 


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JTVT
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March 3, 2020 10:18 am  

@veganostomy

Hey Eric,

Honestly, the suppositories have never worked very well for me and I tend to titrate them on my own which my GI doctor is fine with (he doesn’t think they work very well for me either). He knows about the blood as it’s likely caused my persistent anemia, but the urgency and tenesmus are new and unfortunate. If they continue/worsen I’ll need to come up with a new plan. 

 


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UCtoOstomy
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March 3, 2020 10:19 am  

 

Good luck with the reversal.  The idea of training my muscles again to hold liquid stool, urgency to find a bathroom and all the other goodies don’t interest me with a j-pouch. I’ve worn diapers and their no fun either.  

I’d like the stump removed but am apprehensive due to possible sexual and urinary function damage.

I really don’t mind my ostomy too much.  It gave me a new lease on life thats relatively pain free.  This stump is still a pain in the rear but for now its a part of life.  I knew I couldn’t get an easy ride

 


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glenn.giroir
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March 7, 2020 11:49 pm  

I was given a choice between j-pouch and permanent ileostomy when my colon was removed due to long-standing UC and the development of dysplasia.  At that point, I had had enough of the colon and decided to have everything removed and just move on.  While I cannot say how things would have gone if I had decided to keep my rectal cuff and have reconnection, I can say that I have no regrets with the outcome of permanent ileostomy.  I did not know how sick I was until the colon and the UC symptoms were removed.  I pray that things remain this way and that I do not return to the extraintestinal symptoms that I had been dealing with for so long - night fevers and chills, debilitating joint pains, and loss of appetite.  I hope you have a good outcome soon.  Stay strong! 


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JTVT
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March 8, 2020 6:21 pm  

@glenn-giroir

I knew how sick I was leading up to surgery, though it was a rather abrupt decline in my case, and I’m doing vastly better than I was preop. There is no comparison between my current symptoms and the pain, bleeding, and malnourishment I experienced before. I’m just a bit bummed by the return of any UC symptoms but I understand there is likely some disease remaining in the rectum. Reversal will hopefully provide some relief but it can’t happen in the near future so will need to deal. Not that reversal is a panacea. Another major surgery certainly won’t reduce the risk of a bowel obstruction, which i recently discovered is hell on earth. I’m happy to hear and follow your success story and wish you all good things moving forward. 

 


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