What are the reasons not to have surgery?

It's preferable to be in a long remission on immunomodulators and biologics if it's possible for you (not everyone can achieve remission).

Side effects of post-surgery (some are normal, some are rare):

• (Common) More frequent dehydration (a large intestine reclaims water, without one you need to drink more). Not a biggie, be more cautious especially while exercising and outdoors a lot.
  
• (Common) 4-6 quick bms a day that you can hold for 30 minutes or more. Generally, you bm while you pee. Some have nocturnal, wake to go bms ( more common during the adaptation period but in less than ideal outcomes can happen ongoing). It's different than uc, they're bms not all in quick succession in the early am, rather they're spread out more equally throughout the day. It's often said, "how many times in a typical day do you pee?, and it just about equals out, not a huge inconvenience.
  
• (Common) Having surgery doesn't necessarily mean eating whatever you want. Some foods cause more issues than others. Certain foods create more output than others. Sometimes Imodium is used to slow things down on an ongoing basis.
  
• (Not common) Having surgery doesn't necessarily mean being medication free as Pouchitis can require antibiotics, probiotics and even anti-inflammatory, immunomodulators, and even biologics in some cases. Some have random episodes that are quickly cleared up with medications. For the minority, Pouchitis is an ongoing episode that require a maintenance medication, much like UC did. Pouchitis is inflammation of the small intestine, so it likely means you had Crohn's not UC. Some cases are mild, others not. It's one of those reasons you want to be close to 100 percent certain it's UC.
  
• (Not Common) Surgery can impact fertility of men and women, and cause impotence in men. I think around 20 percent odds. If you're around child-bearing age and want to have children in the future then this is a conversation to have before undergoing surgery.
  
• (Not Common) Some have nocturnal seepage with their pouch or ostomy (a type of incontinence). It's more common during the adaptation period, but can happen afterwards in less than ideal outcomes. You can wear a pad, put extra protection down in the bed, or wear a diaper if needed when sleeping.

Lets look at some odds and functional outcomes:

• Functional Outcomes After Ileal Pouch-Anal Anastomosis for Chronic Ulcerative Colitis
  www.ncbi.nlm.nih.gov/pmc/articles/PMC1421082/
  Table1: Functional outcomes based on patient age
  www.ncbi.nlm.nih.gov/pmc/articles/PMC1421082/table/t1-17/
  Table 2: Functional outcomes based on patient sex
  www.ncbi.nlm.nih.gov/pmc/articles/PMC1421082/table/t2-17/
  
• Identification of predictors of complications following ileal pouch-anal anastomosis.
  /www.bumc.bu.edu/busm/files/2016/01/enrichment-poster-kim-francis.pdf

Here's some text from the CCFA:

CCFA said...


Life after surgery

Most people do very well post-surgery, and after recovery are able to return to work and normal activity. An adjustment period of up to one year should be expected after surgery. Initially, there may be up to 12 bowel movements a day. Stool may be soft or liquid, and there may be urgency and leakage of stool. As the pouch gradually increases in size and anal sphincter muscles strengthen, stools will become thicker and less frequent. After several months, most people are down to six to eight bowel movements per day. The consistency of the stool varies but is mostly soft, almost putty-like.

While there are no specific dietary restrictions, it’s advisable to chew food thoroughly and avoid foods that may cause gas, diarrhea, or anal irritation. It’s also important to drink plenty of fluids—six to eight glasses a day, preferably between meals.

After the surgery, normal sexual activity can be resumed. In fact, some people find their sex life improves because the pain, inflammation, and other symptoms of ulcerative colitis are gone. Prior to surgery, patients should speak with their health care provider about any concerns, such as erectile dysfunction, retrograde ejaculation, or decreased fertility.

Potential long-term complications

The most common complication of IPAA surgery is pouchitis. Inflammation of the pouch occurs in up to 50 percent of patients, usually within the first two years after surgery. Symptoms are diarrhea, crampy abdominal pain, increased frequency of stool, fever, dehydration, and joint pain. The condition is treated with an antibiotic prescribed by a physician.

Small bowel obstruction is another potential, but less common, complication of IPAA surgery. It may develop due to adhesions from the surgery. Bowel obstruction causes crampy abdominal pain with nausea and vomiting. In about two-thirds of people who have this complication, it can be managed with bowel rest (not eating for a few days) and intravenous fluids during a short stay in the hospital. The other one-third of people will require surgery to remove the blockage.

Other possible complications include pelvic abscess and pouch fistulas, which may require additional treatment. Pouch failure, which requires removal of the pouch and conversion to a permanent ileostomy, occurs in a small percentage of patients.

Source: www.ccfa.org/resources/surgery-for-crohns-uc.html

NiceCupOfTea said...
I dunno why people act like having their colon taken out is no big deal, but being on the drugs is the worst thing ever. You're talking about irrevocably removing a part of your GI tract: to me, I'd rather be on meds and still have my colon.

Surely to compare, say, being on Remicade for a long time vs having no colon, the possibility of bad systemic side effects would be much higher with the Remicade?

EDIT: OK, nevermind, just saw the posts that came after yours with the specific information. Thanks iPoop and others :)

Man, it really sucks that there's no perfect "way-out" of UC, right? But I guess that's obvious and part of the rules of the horrible game ... still, it's a shame surgery has all these caveats, mind you to me they do not sound as bad as dealing with a UC flare, in that they seem much more manageable, low-maintenance problems without much long term health risks like UC, and they seem predictable. I really don't know where I am headed atm, deep in a flare and not sure what treatment can work, plus there's no treatment that I don't have some kind of anxiety around, but I guess that's just hugely common and part of having this condition, I'm sure we can all relate to that.

Post Edited (~ chicken wings ~) : 9/26/2016 12:43:17 PM (GMT-6)

"Man, it really sucks that there's no perfect "way-out" of UC, right? " Unfortunately, you got it. We've got a lifelong autoimmune disease (or at least an immune deficiency), so there's no easy button. Without surgery, uc carries risks and so do it's treatments. With surgery there is more stability and a lot less uncertainty but it isn't completely free of the risk of all future complications.

Once the Pandora's box of uc is opened we'll never be 100 percent pre-uc.

Whether surgery or biologics are safer over the many decades we'll have uc is a big unknown. No studies that I know of directly compare them. There's small statistical risks in each, although really small for a year are unknowable over 30 years, etc. Danged if you do danged if you don't. I try not to worry about small risks.

I'll stay on biologics as long as they work for me. Should they stop working then I won't hesitate on surgery. Whatever gives me the best quality of life is my goal.

This is a very interesting discussion and I have enjoyed reading the different perspectives. I think one thing that has been missed in this conversation is not accurately comparing what surgeries, Jpouch vs Ostomy.

The outcomes and risks vary with the two. I am somewhat like Keith in that my body is now suffering the consequences of fighting the disease too long. I am only 6 months out from permanent ostomy for Crohns but my overall health has greatly improved and hopefully will be able to reverse some damage done or keep it from progressing. My doctor was quite surprised how great my blood work has been since surgery.

While life without a colon isn't perfect each individual has to weigh the options for their lifestyle and health. For me taking away my colon gave me my health back!

soynomore said...
take out my colon and the ability to fart ? ya, not in my lifetime !

I can fart just fine thank you!
That's another untruth.

Oh please, i can fart louder than ever. They seem to never have any odor - but sound I've got! I actually couldn't fart when I had UC because it usually led to a shart. When I was in remission, it was fine, but anytime things were unstable, pray you can hold that fart back...

Hot wings still set my butt on fire. With UC, the consequences were equally bad or worse. I wouldn't even eat hot wings with UC - now I will suffer a bit afterwards, depends though, i've had them a few times where it wasn't bad.

I don't think we need a world championship of farting contest here, although I do believe us IBDers would win it no-holds-barred compared to any normie anyday, any time, any place. I also believe that in IBD the sexes are truly on an equal footing we're both stinkers not to be reckoned with.

Just a couple nights back, my DW was mad at me, cuz I woke her from a sound sleep with one of my farts. Gold right there haha

Post Edited (iPoop) : 9/26/2016 6:22:57 PM (GMT-6)

chicken wings said...
Is there a minimum age for the surgery? Do they do this stuff for children?

I've had my ileostomy due to UC since I was 10 years old (I'll be 50 in just under a week). I was diagnosed at age 5 but my parents think I'd had it since birth. My ileo gave me my life back.

I do know people who have had an ostomy since birth. Some people are greedy and even have two ostomies (ie a urostomy for the urine side of things plus colostomy or ileostomy) - one on either side of their abdomen.

Wow. A surgery thread that made me laugh! What is the world coming to?

Yes, the mental hurdle is the big one.

I think gastroenterologists tend to scare folks as well, saying stuff like "unless X medication works then you must have surgery", and making surgery equate with failure. Specialist doctors are often gruff, blunt, and don't mince words as their own personal shortcoming. I wish they'd all explained things well and explain surgery as just another step in the uc treatment ladder that gives folks hope, quality of life, and gives back control of their life. Surgery has it's place, and it should be described as hard yet rewarding, all while adequately describing the risks associated with it (including the very small risk of a bad/less than ideal outcome). Medications and other treatments can manage uc for 75 percent of uc patients, but there's a 25-ish percent group that are just non-responders to simply everything and, as such, they often require surgery to manage their symptoms.

TAA, No they do not.