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How long can a stoma last without follow-up surgery?
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TheDuque
Regular Member
Joined : Jul 2013
Posts : 50
Posted 7/15/2013 10:03 PM (GMT 0)
Hi,
I underwent a total collectomy in mid-April for a sudden and intense episode of Crohn's Disease (apparently). I now have an end ileostomy, and have a follow-up appointment scheduled with the surgeon in September to discuss "options". The only part of my large intestine they kept was my rectum in case I wanted takedown surgery later.
At this time, I am seriously leaning towards keeping the stoma as opposed to trying to bother with a take-down. My question is this....do stomas have a "shelf-life"? In other words, as long as my disease stays in remission, will I ever need another surgery? In 50 years, will my current stoma still be chugging along?
Any advice or wisdom is certainly appreciated.
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 7/15/2013 10:49 PM (GMT 0)
Nope, no shelf life, you can keep your ileostomy for the rest of your life, especially as it's an end one, which tend to be permanent anyway (loop ileostomies are the temporary ones).
I presume your rectum is disease-free? Surgeon probably won't do a reversal if it isn't, at least my one won't.
Probiotic
Veteran Member
Joined : Mar 2007
Posts : 2832
Posted 7/15/2013 11:11 PM (GMT 0)
@TheDuque- no shelf life- living human organ should last as long as you do. I am in the same boat- was officially doing three step but have decided indefinitely to "stop while I am ahead", because I find this suits my lifestyle much better. I too still have a rectum but it gives me no issues- outouts a tiny bit of mucus about
ince a month and that is it.
@NCoT- true, but in 3 step jpouch end is after step 1, then loop after step 2.
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 7/15/2013 11:26 PM (GMT 0)
Pro - yeah, but this end ileostomy is not going to be turned into a loop one. The guy was diagnosed with Crohn's out of the blue; he's not getting a j-pouch.
Probiotic
Veteran Member
Joined : Mar 2007
Posts : 2832
Posted 7/15/2013 11:38 PM (GMT 0)
Ah that explains it- thx- you crohnies do an IRA if you reverse it, not a pouch. Cheers
Post Edited (Probiotic) : 7/15/2013 5:41:46 PM (GMT-6)
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 7/15/2013 11:50 PM (GMT 0)
Exactly :p
That's why mine and Duque's rectums' were kept. Not just for the sheer fun of having 'phantom rectum' (nothing brings on those old Crohn's feelings like a sense of urgency and pressure), but for the future possibility of reconnection. Obviously, UC folks can't have an IRA 'cos their disease is always in the rectum, whereas Crohn's often isn't.
Probiotic
Veteran Member
Joined : Mar 2007
Posts : 2832
Posted 7/16/2013 12:36 AM (GMT 0)
Hey, psst, the wonder cure is right around the corner ;) according to some on the UC forum, so I guess I can connect mine too nextyear lol. Interestingly, rectum was aways never an issue for my UC- quincy's "have you tried rectal meds?" Posts irritated me to no end, lol.
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 7/16/2013 12:47 AM (GMT 0)
Just my luck to have surgery right before a cure is found... >_>
My rectum caused some problems near the end, but it wasn't the major source of trouble. My biggest fear about
a reconnection would be the return of anal fissures; they made having a bowel movement, no matter how small or liquid, literally agonising. I could put up with going 6-8x a day, easily, as long as it was painless!
Alive and Well
Regular Member
Joined : Jan 2013
Posts : 78
Posted 7/16/2013 1:15 AM (GMT 0)
Pro...don't completely discard the idea of a pouch...I though the bag was da bomb but da pouch is even better and I had plenty of issues with the stump before resection....
Pluot
Veteran Member
Joined : May 2012
Posts : 2500
Posted 7/16/2013 1:18 AM (GMT 0)
Urgh, not to go too far afield here but IRAs have notoriously poor outcomes in adults. Even if it meant the risk of a stoma revision or two down the road, I would not spring for the IRA.
There *can* be issues aside from active disease that might require follow up surgery. Stoma revisions are not all that uncommon. Scar tissue or kinks in the bowel can cause issues that require surgical correction, or even something as simple as a change in body shape affecting the day to day function of a stoma (e.g. weight gain causing a decent stoma to become too flush to pouch well). There are no guarantees in life and you might someday need a revision, but I think if your objective is to stay out of the OR, you should stick with the ileo.
TheDuque
Regular Member
Joined : Jul 2013
Posts : 50
Posted 7/16/2013 3:19 AM (GMT 0)
Please, veer down that road as much as you want - the more info on IRA vs. ileo the better....
My rectum was a little inflamed, but apparently they weren't too concerned about
it. I have what I call a "phantom poop" at least once a week. They started bloody and mucusy, but it seems like the blood part of it is starting to ebb somewhat. I guess that's a good sign? At any rate, the IRA was an option, apparently, but the surgeon didn't seem too enthused about
it.
By the way, is there an advantage to getting an IRA over a J-Pouch? I noticed you mentioned IRA's are usually not an option for a UC patient, implying there are some benefits....
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 7/16/2013 10:23 AM (GMT 0)
Actually this group of patients had significantly better functional outcomes with an IRA than an j-pouch.
www.ncbi.nlm.nih.gov/pmc/articles/PMC1420918/
I'd love to see more proof of IRA surgery vs. j-pouch surgery but there's surprisingly little out there.
NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 7/16/2013 10:30 AM (GMT 0)
I'm in a massive rush, otherwise I'd spend a couple more hours looking for links, but here's another article on IRAs and Crohn's. There is a high occurrence rate (exactly what you'd expect with Crohn's), but the satisfaction with the IRA was good: patients had an 'unrestricted social life' and nobody wanted an ileostomy as the alternative.
www.ncbi.nlm.nih.gov/pmc/articles/PMC2498320/
Probiotic
Veteran Member
Joined : Mar 2007
Posts : 2832
Posted 7/16/2013 1:40 PM (GMT 0)
yeAh IRA sounds good for crohnies.., my surgeon was even planning one if my removed colon showed confirmed crohns (which seemed odd since I always showed pancolitis incl in rectum). I notice that patient datisfaction / function for IRA's is superior to IAA's/jpouch. if for any reason one day I have to a abandon the Ileostomy I am inclined to do BCIR.., but knock on wood my stoma setup works like a champ- I'd describe it as "excellent" not just satisfactory; zero effect on social life , sports, athletics etc.
Shaz032
Veteran Member
Joined : Feb 2003
Posts : 1251
Posted 7/17/2013 11:05 AM (GMT 0)
My ileostomy stoma, with no revisions, is still going strong after 36 years :)
UCwhat?
Veteran Member
Joined : Dec 2012
Posts : 1042
Posted 7/17/2013 7:47 PM (GMT 0)
That's awesome Shaz!!! Your stoma is my stoma's hero!! I can only pray that I am as lucky and blessed as you have been.
Probiotic
Veteran Member
Joined : Mar 2007
Posts : 2832
Posted 7/17/2013 9:13 PM (GMT 0)
Thanks alive and well- great news that the pouch is working well for you. I just dont want to take the risk, now that the bag is da bomb for me. If I had issues it woukd be one thing, but I dont. I never wanted surgery in the first place (who really does, lol) so I have zero interest in two more surgeries. If for some reason I have to have the stump out in the next few years, kr ever have to have revision surgery, I will consider it, though I'd also consider a BCIR if I ever have to go back to the OR. Hopefully this end ileo will behave for life. (i second making shaz my hero lol- well, and also blueheron who also rocks).
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