Two years and what now seems like 200 support group meetings later, I think it can now be concluded that surgical momentum has unequivocally shifted and although an ileostomy is still considered by many as the procedural "Gold Standard" for curing ulcerative colitis or familial polyposis, the ileoanal pouch is rapidly-becoming the operation of choice. For those who qualify, it's now only a matter of time before it takes over.
Right now, if you live in or near Boston like I do, the odds are much higher that you will have a J-pouch rather than an ileostomy, assuming you qualify. Almost every major medical center in Boston with a colorectal surgery department is now doing the procedure in large numbers. If you live in Los Angeles it's close to the same situation. However, according to an ET friend, if you live in the Dallas - Ft. Worth area, the odds are you'll still get a recommendation for an ileostomy. If you live well outside an urban center the preference is typically still for an ileostomy. Wherever there exists adequate knowledge and experience, the ileoanal pouch is now starting to win the battle of numbers.
Unfortunately, nobody is keeping statistics but this expert reckons that we have easily now passed the 10,000 operation level for the ileoanal pouch in the US alone. Both the Mayo and the Cleveland Clinics passed the 1000 procedure levels a while ago. A significant number, probably over 30, have done between 100 and 500 and perhaps close to 10 have done between 500 and 1000. This compares to probably over 150,000 ileostomies, maybe closer to 200,000 now in existence in the US. But as I've said the momentum is shifting.
For those not familiar with the procedure, with an ileoanal pouch, the colon is removed, the mucosal lining of the rectum down to the anus is stripped and an internal reservoir or pouch is made from the last 8 inches or so of the small intestine (the ileum). This is then pulled down and attached (an "anastomosis") to the inside of the anus. The pouch functions like a new rectum and minicolon, both storing stool and absorbing some of the water. Since the anus and sphincter muscles are in place and functioning well (they have to be for you to qualify for the procedure), you go to the bathroom in the normal way - but more times.
The procedure has many names and nicknames. How's this? The ileoanal reservoir, ileoanal anastomosis, pullthrough, endorectal pullthrough, or the J, S, W, H or other letter pouch. The letter typically stands for the shape of the pouch. The J-pouch is the most common. For my first procedure, I had an X pouch where they attached one end of the pouch to my optic nerve so I could see where I was going (just kidding).
The statistical results of the J-pouch (I'll call it that for the rest of the article) are now very well established. By the way, if anybody wants to do their own research on the Internet, go to the National Library of Medicine site, (www.nih.nlm.gov) and click on Medline, then Pubmed and then enter ileoanal reservoir as the search word. Then click on Related Articles after any or all of the listed articles. Doing this, you'll find over 300 articles on this subject.
Theres no databank yet connecting all the studies and publications, but its now pretty clear the results are essentially as follows:
Patient Satisfaction: Over 90% in every study done.
Bowel Movement Frequency (the J-pouchers obsession): 5 - 6 times during the day and 1 - 2 during the night. The best results are 2 - 3 times a day and 0.5 times a night. Will somebody please explain to me how you go a half a time. Some people, like me, go 8 - 12 times a day. I know I could do better, but this is the price I pay for my dietary debauchery.
Ability to wait an hour for a BM: Over 90% after a year and typically over 75% in just a few weeks after the procedure. Since the stools are looser, the longer one waits, the more it starts to feel like diarrhea. By the way, after about a year, the typical J-pouch holds about 1/2 the capacity of the typical rectum.
Leakage and Pad Usage: About 15 - 20% of people have some form of leakage through the anus. It's usually very mild and more common at night during sleep or during vigorous exercising. When it occurs it can often be minimized by sphincter muscle exercises (kegals) and with some diet management. But because it does happen with some people, these folks often use pads for external absorbency, most typically panty liners.
Leakage and Perianal Itching or Burning: When leakage occurs or if you don't clean yourself well after a BM, the highly alkaline stools can burn or itch the area immediately around the anus. This grown up version of diaper rash is usually readily resolved with applications of the same ointments; like Desitin, A R D and Eucerin. (Around the gym, I'm told jocks call this same phenomenon "ring-sting!") Ability to discriminate between gas and stools: Over 80% of people after a year seem to have little trouble with this. In my case, passing gas is simply too risky.
Use motility control medications and/or stool conditioners: Somewhere between 20 - 30% of J-pouchers use motility inhibitors, most commonly generic Lomotil or Imodium. People tend to use less as time goes on. A comparable number use psyllium type stool conditioners like Metamucil, Fibercon or Citrocel. Some people use both. Some people swear by them and some say the benefits are marginal.
Dietary Limitations: The procedure per se introduces essentially no dietary limitations. On the other hand without a rectum and colon, people need to learn which, if any foods, can cause problems. Every individual seems to react differently. But, if something used to cause you gas or loose stools before, in all likelihood they'll be more problematic after this surgery. Mild lactose intolerance may seem more severe. If hot peppers burnt on the way out before, you'll need a fire extinguisher now. Beer should be avoided at least until they take you off IV feed. Be reminded that abdominal surgery itself causes internal adhesions to form, and this in turn increases the potential for small bowel obstructions. Until you have some dietary experience, it's best to start with a low residue diet and build up your repertoire.
Small Bowel Obstruction (blockage or partial blockage): Some people are prone towards the formation of adhesions which can cause a loop of bowel to be narrowed. Should one of these coincide with some undigested solid food or waste product, the results can be a blockage of the bowel passage. In most cases, but not always, these resolve without hospitalization. About 20% of people with a J - pouch have one or more obstructions.
Other Complications: In under 5% of the cases other complications occur, such as internal pouch leakage, fistulas, abdominal hernias, pelvic infections or separations of the anastomosis. In as many as 10% of cases, anastomotic stricturing (narrowing of the anal outlet) can occur. Fortunately (or unfortunately, depending on your viewpoint) this is usually resolved quickly by dilatation via the infamous "digital exam!" This is one of the primary reasons, your colorectal surgeon will want to do a follow-up examination annually, at least in the beginning. For men, temporary or permanent sexual dysfunction is possible, but this now occurs less than 1% of the times. I myself had temporary retrograde ejaculation - the unusual sexual phenomenon of going instead of coming. Death, the ultimate complication, is very rare but can and has occurred - as it can and has with any major surgical procedure.
Pouch Failure: It happened to me so I know it can happen. Most pouches, if need be, can be reconstructed. But in about 3% of cases, the pouch must be removed and the patient left with a permanent ileostomy. Results are improving quickly but it's not foolproof.
If you suffer from colitis or familial polyposis, and if you have your anus, if your anal sphincter muscles are strong and healthy and you are under 65 years old, you may qualify for the ileoanal pouch procedure. Wherever you live, try to explore this alternative. But please find somebody who specializes in it. It's a long, difficult procedure, much more so than a conventional ileostomy.
