I have done a lot of research on getting a bowel resection and have compiled this list of opinions and experiences to help people in a similar situation.
To answer the question "should I get a resection?" you first need to know the answer to some other questions:
Are my current symptoms due to inflammation (active disease) or scar tissue caused by previously active disease?
--If your situation is dire enough that surgery is under consideration you should be under the strongest drugs necessary to eliminate active disease. Yes, they have side-effects, but so does having a hole in your intestine.
How long is the stricture?
--Short sections (less than a foot) are more amenable to surgery than are longer sections. That said, if you have 2 feet that are really scarred down, you may not have a choice.
Have you tried balloon dilation?
--According to this study, "the response of Crohn’s strictures to endoscopic balloon dilation" balloon enteroscopy can eliminate strictures for most patients. It is less successful for de novo strictures in the terminal ileum.
What are you at risk for, and can that be avoided by other means?
--If you're likely to perforate your bowel under a controlled diet and you've tried the balloon, you really don't have a choice. If you're symptoms are milder, you may want to put it off. Get as much mileage out of this bowel as you can: reduce your lifetime surgeries and hope for better solutions with the advent of new technologies.
Here is a list of surgery pros and cons I assembled from various threads:
CONS
-surgery should only be used as a last resort
-pressure your doctor to find a suppressant that works for you before doing surgery
-surgeries can be botched
-wolfem did not go into remission after her surgery. (last resort)
-scifimom regrets surgery. symptoms back 1 yr later with D
-nicoleks good after surgery, but a complication from the surgery
-biguglycat. lots of relief after 1st surgery. 2nd- no. 3rd-yes
-scifienthusiast " if you're symptom free some months and only in pain every once in awhile I wouldn't recommend it." adhesions cause him pain 24/7.but adhesions can also happen w/o the surgery
-Cally said she went up to 3 bm a day from 1 after removing the ileocecal valve
PROS
-if your doc says you should get it, surgery will improve your life
-research your doctor/surgeon. get it done on your terms as opposed to having an emergency situation
-surgery is a treatment option--not a last resort (Amy)
-CD Dad says most ppl go back to normal even after losing their ileocecal valve
-Kenny is back to normal after '09 resection
-Alice had a foot removed and a bit of small bowel--best thing she ever did
-fatefulone has no D post resection
-Bkbigfish--billy--had 5 inches removed (1 inch colon)--best thing he ever did.
-Crabbyrelish says resection can improve your life 10 fold
-ekay good for at least 10 years after
-biguglycat said doc would not suggest it if perforation/obstruction were not likely
-crabby relish eats whatever she wants
-jboi was resected in 2001 and has had no problems afterwards
-zegerman feeling good after his dec 2010 resection
-zalanicht feeling normal after his resection
-tpd has normal bm after the resection
-chronsmom's son is great 2 yrs later
-pennwestern thought it was a good deal
I hope this helps. I am going to schedule my surgery for my two de novo terminal ileum strictures tomorrow.
To answer the question "should I get a resection?" you first need to know the answer to some other questions:
Are my current symptoms due to inflammation (active disease) or scar tissue caused by previously active disease?
--If your situation is dire enough that surgery is under consideration you should be under the strongest drugs necessary to eliminate active disease. Yes, they have side-effects, but so does having a hole in your intestine.
How long is the stricture?
--Short sections (less than a foot) are more amenable to surgery than are longer sections. That said, if you have 2 feet that are really scarred down, you may not have a choice.
Have you tried balloon dilation?
--According to this study, "the response of Crohn’s strictures to endoscopic balloon dilation" balloon enteroscopy can eliminate strictures for most patients. It is less successful for de novo strictures in the terminal ileum.
What are you at risk for, and can that be avoided by other means?
--If you're likely to perforate your bowel under a controlled diet and you've tried the balloon, you really don't have a choice. If you're symptoms are milder, you may want to put it off. Get as much mileage out of this bowel as you can: reduce your lifetime surgeries and hope for better solutions with the advent of new technologies.
Here is a list of surgery pros and cons I assembled from various threads:
CONS
-surgery should only be used as a last resort
-pressure your doctor to find a suppressant that works for you before doing surgery
-surgeries can be botched
-wolfem did not go into remission after her surgery. (last resort)
-scifimom regrets surgery. symptoms back 1 yr later with D
-nicoleks good after surgery, but a complication from the surgery
-biguglycat. lots of relief after 1st surgery. 2nd- no. 3rd-yes
-scifienthusiast " if you're symptom free some months and only in pain every once in awhile I wouldn't recommend it." adhesions cause him pain 24/7.but adhesions can also happen w/o the surgery
-Cally said she went up to 3 bm a day from 1 after removing the ileocecal valve
PROS
-if your doc says you should get it, surgery will improve your life
-research your doctor/surgeon. get it done on your terms as opposed to having an emergency situation
-surgery is a treatment option--not a last resort (Amy)
-CD Dad says most ppl go back to normal even after losing their ileocecal valve
-Kenny is back to normal after '09 resection
-Alice had a foot removed and a bit of small bowel--best thing she ever did
-fatefulone has no D post resection
-Bkbigfish--billy--had 5 inches removed (1 inch colon)--best thing he ever did.
-Crabbyrelish says resection can improve your life 10 fold
-ekay good for at least 10 years after
-biguglycat said doc would not suggest it if perforation/obstruction were not likely
-crabby relish eats whatever she wants
-jboi was resected in 2001 and has had no problems afterwards
-zegerman feeling good after his dec 2010 resection
-zalanicht feeling normal after his resection
-tpd has normal bm after the resection
-chronsmom's son is great 2 yrs later
-pennwestern thought it was a good deal
I hope this helps. I am going to schedule my surgery for my two de novo terminal ileum strictures tomorrow.
