Pelvic Floor Therapy for constipation caused by tight pelvic floor and dyssynergic defecation - yes? No? Better ideas?

If you are feeling faint due to dehydration then it’s *critical* that you get properly hydrated. Are you peeing light-colored urine at least a few times per day? You may also be purging electrolytes, so a rehydration solution would likely be much more helpful than plain water.

I’d be more comfortable with a modest dose of MiraLax if I needed a regular source of stool flow encouragement.

Some folks here have reported good results from pelvic floor therapy, but it is indeed slow and uncertain. I hope things get better for you soonest!

Hi Scott,

Thank you for responding so quickly and wisely, your advice is always spot on. After I read your message and before I responded here, I drank 16 ounces of water with a Nuun tablet (electrolytes), so thank you for that reminder. And yes, good question, my pee is clear, probably due to drinking a lot of herbal tea, broth and eating some jello and one popsicle each day for the past 3 days, but the diarrhea has been unrelenting and I have felt so woozy it must be the electrolytes that are off kilter.

Good call on the Miralax. It is much, much gentler. It was great while it lasted, but it quit working for me. At first I was drinking a cap full daily, then increased it to a cap and a half, then up to two caps morning and afternoon, but by last week, nothing was being produced. Thus, the doc's recommendation to go for the firehose diarrhea stimulant of them all - magnesium citrate. Gahhh. At least it works! ;-)

My woozy brain is telling me to not drink the magnesium citrate tomorrow, my body needs to rest. While I am on a clear liquid and eventually a full liquid diet, every other day should be sufficient to prevent a bowel obstruction. When I eventually advance to eating food again, I will again drink it every daily to be sure I don't clog up. I see my G/I doc March 5, but I am on the waiting list, so fingers crossed.

Thanks again, Scott. You are a gem.

Jane

I too suffered unbearably due to a colon that simply would not function and rectal muscles that did not recognize being stretched.  I would use enemas every 3 days with manual disimpaction and would drink a minimum of 8 ounces of GoLytely every day.  The MagCitrate has a lot of magnesium and the GoLytely is more electrolyte friendly.  I had tried PEG (Restoralax) and that didn't work.  

I did go see a pelvic floor specialist and she worked with me for months and achieved small goals however with such a slow moving colon I did not gain much ground.  Finally I resorted to a cecostomy tube (basically a small tube from the outside to the cecum where you would give yourself an enema from the top down to flush out stool).  This ended up getting infected, my colon quit working all together and I ended up with an emergency colectomy and ileostomy.  That actually turned out to be the best thing in my life as now I have a J-pouch and life is grand.

May I suggest not taking any more MagCitrate.  Drink tons of electrolyte balanced solutions (sugar free Gatorade or pedialyte).  Salty broth etc.  Good luck with your search for an answer.  I hope you find one and fast.  Good pelvic floor physios are a God send and the one I had was fabulous.  Too bad she couldn't fix my lazy colon!

@Jaypea if I could leap through the internet to thank you, I would. Thank you. You have clearly been there and done that PLUS. I had not heard of a c-tube before. After looking it up, it appears as though it could help, but no picnic, and what led up to needing one also not a breezy day on the beach. Gahh.

I am grateful for the education of why mag citrate is not always the Draino of choice, especially long term. I now understand why it is better to opt for GoLitely or maybe PEG (I can ask my regular doc when I see her). My body did not react well to the idea of daily mag citrate so I was a bit ahead of your good advice. I was so dizzy I did not drink the mag citrate yesterday or today.  The dizzies became enough worse today for me to hear to the urgent care waiting room. I prob simply need a bag of fluids and I will feel a lot better.

I’m relieved and glad to learn you are experiencing better living here in J-Pouch Land. One follow up question - have you experienced constipation since having a j-pouch and if so, what do you do? That asked, I sincerely hope you have put all of that in the past!

Best to you, thank you!

@SeattleJane   I keep thinking about how to make sense of this. If this were all pelvic floor/difficulty emptying then the enemas should have worked, at least if the Magnesium Citrate is working  - if your pouch can push out watery stuff it should not matter how it got there. The nausea also doesn’t fit with a pouch emptying problem. Are you having abdominal pain with this? I’m wondering if something like a partial obstruction is part of this story. 7 months would be unusually long for adhesions to be responsible, but something like a stricture could behave this way - but I’d be surprised if it were painless.

@Scott F

I really appreciate your continuing to think about this and ponder why, that's generous of you and also speaks to your curiosity and thoughtfulness about all things j-pouch. Personally, I am stumped. I mentioned in my post that my G/I doc did a scope in October and saw zero sign of strictures and nothing awry with the jpouch. But, one of the results of the MRI defecography test in November, a test I had prepared for by being on clear liquids the day before, NPO the day of, and doing two saline Fleet enemas an hour apart before the exam, was evidence of 7cm mass of stool in the sigmoid colon. How is it possible to have such very large mass of stool in my colon if I used two full bottles of saline enemas before the test? Why didn't the enema flush it all out? You may wonder why I have a sigmoid section of colon. The colo-rectal surgeon who did my jpouch did it as part of an exploratory surgery. Turns out he needed to cut out a "big mess" caused by partial colectomy he did 6 weeks earlier. He apparently decided to leave approx 8 inches of large colon and the rectum. All of this was unbeknownst to me. I had no idea going into that surgery that I would wake up with something called a j-pouch, or that most j-pouchers don't have rectums, etc. Big learning curve.

Back to the last few days. The stool that the two days of mag citrate flushed out was about 95% your typical mustard yellow diarrhea, but on day 3 of clear liquids and mag citrate? Voila. A smile pile of dark brown pellets. What the heck? Was it stuck way up yonder and just now found its way out?

I am wondering if there is possibly a stricture at the juncture of the sigmoid colon and the rectum that is keeping the stool in the sigmoid colon and not letting it travel down the rectum and out.

I have not had a CT scan but that would likely show adhesions, right?

Having a length of residual recto-sigmoid colon changes the possibilities a lot, especially with the report of residual stool in that sigmoid colon. I don’t think you need a stricture or even adhesions to explain the problem, just (perhaps) an overly mobile length of colon that can shift into problematic positions. Do you know if your J-pouch is constructed from colon instead of the usual ileum? A colonic J-pouch is the only way I’m picturing the anatomy you’ve described.

@Scott F

Hi Scott,

Thank you once again for your thoughtful reply. Unfortunately I don't know the answer to your question. The surgeon has retired. I will ask medical records at the hospital where the surgery was performed and let you know what I learn, but that will likely take a while.

Am I understanding correctly that it is possible for the recto-sigmoid colon section to move, kink or twist around, something akin to a bowel twist tie, and stool would therefore get stuck in there and cause symptoms of constipation (and the 7cm mass of stool left behind after 2 enemas and visible on the MRI)? If so, do you think it might make sense to talk with a colo-rectal surgeon about it, maybe the pro/con of surgically removing the sigmoid colon and the rectum? Or is that even possible with the jpouch attached to the sigmoid colon at the top and the rectum at the bottom (I think I have that right but not positive).

Surgery might seem drastic but the constipation is worsening, thus the doc's advice to "just drink mag citrate daily". Nope. Not possible. After I posted yesterday I took an Uber to Urgent Care because I was too dizzy, clammy, confused and my heart was beating too fast to drive there on my own. The Urgent Care doc listened to what I had to say about drinking mag citrate and clear liquids for a couple days and feeling really weird and dizzy. She diagnosed me with vertigo and told me to go home and watch a You Tube video on how to perform an Epley maneuver and pick up a script for meclizine. Hunh? Since my blood pressure reading came in sky high and it is always normal or low, I asked her very nicely if they could possibly draw blood for a chem panel since I was there? Sure. And they did. This morning I received a chart message that my glucose levels were in the tank low (first time ever for me) and that I should  "follow up with primary care". Sheesh. Thank goodness for internet info on how to treat hypoglycemia. If I ever have low glucose levels again, I will know how they feel - I will be dizzy, clammy, confused and my heart will race and I will know what to do about it. Now that I am eating very small, easy to digest meals again, I am okay. Not dizzy.  I don't know yet what I will do about the stool that resuming eating will produce, but...I had to eat.

I have a second appt for pelvic floor PT this week, but I'm told it will take a few months before I will know if it will be of help. I don't think I have a few months to figure this out.  I will see my primary care doc Tuesday to ask for her help with what to do next. She will refer me to anyone I want to see - but who? Maybe a colo-rectal surgeon?

You had pretty unusual surgery, so guesses about it are kind of shots in the dark. The poor folks trying to interpret your imaging have no idea what your surgically altered internal anatomy is supposed to look like. The rectocele/cystocele observation, even though discredited, suggests to me some sort of outpouching or otherwise distorted anatomy of the sigmoid, rectum, or colonic J-pouch. I’m not sure that this would be obvious on pouchoscopy/colonoscopy, and after 17 years something has gone badly wrong. I think if I were in your situation I’d consult with a pouch-knowledgeable colo-rectal surgeon to help figure this out, best if you can obtain the old operative report(s). Goodness knows urgent care won’t figure it out. Perhaps your GI can suggest a good surgeon?

I am with Scott on this, as an understanding of your unique anatomy is essential before you can really get a real diagnosis of what is going on. Typically, radiologists are given a brief synopsis of your symptoms and history. Without a full understanding, they often make erroneous observations based on what they expect to see as landmarks.

Now that it is known that you have retained a significant portion of colon other scenarios are possible. They can occur with small intestine, but are more likely with the colon. For example: megacolon (more likely), volvulus (rare), intussusception (rare) . Look them up and see if any make sense in your situation. All can cause constipation and diarrhea and can be intermittent. And yes, you can still have adhesions that may be the root of it all. An abdomino-pelvic CT scan could help sort this out.

Yes, it is quite possible to have impacted stool that is retained even with bowel purging. The liquid stool just goes around it. Especially true is you have megacolon and a segment with dismotility.

Good luck getting this sorted.

Jan

@Scott F @Jan Dollar

First, thank you, both of you.  Your guidance is invaluable. Only because the two of you cared enough to take the time and effort to help me learn about the oddity of my j-pouch in terms I could (mostly) understand, I was able to have a productive conversation yesterday with my trusted primary care physician's assistant. (I turned to primary care because there is zero chance of talking to my GI doc until March. Trust me, I've been trying since last November).

As the P.A. and puzzled through anatomical charts of how a j-pouch is typically constructed, neither of us could figure out how a length of sigmoid colon would be potentially helpful or functional or how the jpouch would fit into it. Why did the surgeon leave it? No way to know, he just had one thing to say after my surgery "Succcess! You will be eating steak on Friday." Even at the time I knew that wasn't true.

The P.A. made a referral to the colo-rectal surgeon she most highly trusts and also made suggestions for dietary changes to insure I am hydrated and adequately fed. As a result of both the referral and nutritional advice, I am feeling much better.

None of this have happened without your kindness, wisdom and willingness to step in and help. I wish I could send flowers, fuzzy slippers, tickets to your favorite event or destination - but - tis the internet...

So I simply type out

T H A N K  Y O U,

Jane

I’m very glad you’re finding a more constructive path! Can you tell us what led to the initial partial colectomy, and then the subsequent “exploratory” surgery? That might help make more sense out of this, as will the operative report(s).

Jane, another thing has me completely puzzled. If it is true that you have a retained rectum and sigmoid colon, there should be no reason for a j-pouch, AT ALL! The j-pouch replaces the rectum. There is no use for one if you have a rectum. So, generally, when the rectum and sigmoid is intact, the procedure is a ileocolonic anastomosis. If the sigmoid is gone, it is an ileorectal anastomosis.

The original operative report will tell all.

Jan

@Scott F

Oh geez, no good deed goes unpunished, Scott. I wish I knew how to Cliff Notes what led up to the original sub-total colectomy and the subsequent surgery, but once again, your questions proved really useful for my health. It took quite a while for me to piece this timeline together from my 2007 medical file folder, but I bet it may be helpful for the colo-rectal surgeon I see on Tuesday.

Here's the history:

Feb 2007: What led up to the first colectomy?  I was diagnosed with polyposis at my first colonoscopy. No personal or family history of GI issues. No genetic markers for FAP or other anomaly. Between colonoscopy and subsequent surgery, approximately 40 polyps collected.

Colonoscopy findings:

1) Multiple right colon polyps removed with electrocautery

2) Multiple transverse colon polyps: Proximal polyps removed, distal sessile lesion biopsied and tattooed.

3) Multiple large left colon and proximal sigmoid polyps (2-4 cm): All left in place down to 30 cm where most distal polyp was tattooed.

4) Normal rectum and sigmoid colon to 30 cm. (Maybe this is why surgeon left the sigmoid colon and rectum intact? Who knows.)

5) Sigmoid diverticulitis

Colonoscopy prompted GI doc to recommend a sub-total colectomy. Note: were I diagnosed today, I’d be a strong candidate for watchful waiting with 90 day repeat colonoscopies. No indication of cancer in colonoscopy specimens, nor in subsequent surgical reports.

March 5 - 16 2007: Hospitalized for sub-total colectomy surgery performed on March 5 by colo-rectal surgeon and GYN surgery to remove uterus and ovaries. Originally told it would be a simple surgery, expect return home in a couple days. Bowel function did not return. Remained on IV and limited clear liquids for 7 days, then PICC line started for TPN.

March 16, 2007: Discharged home with PICC line and TPN. No improvement to bowel function.

March 23, 2007: Returned to hospital, continued TPN via PICC line.

April 3, 2007: Second surgery to address minimal bowel function and apparent likelihood of small bowel obstruction. After surgery, informed by surgeon he fixed the problem with a “j-pouch”. Problem described as “tangled mess of adhesions”.

April 15, 2007: Discharged home with PICC line and TPN. Remained on TPN for approximately 3 more weeks.

June 2014: Small bowel obstruction. In hospital for 8 days prior to surgery for “lysis of adhesions”. On call general surgeon described it as a rat’s nest.

@Jan Dollar The j-pouch was created in the second operation - again - I don't know why. The surgeon was not at all communicative and I don't have the operation report for the April 3 operation. I will ask the hospital for it tomorrow and hope they can pull it out of medical records.

Again, I can't thank you enough for enlightening me to the fact that my G/I system is not a typical j-pouch arrangement and may be at least part - if not all - of the cause of the past 7 months of pretty stubborn constipation.

All my best to you,

Jane

A “colonic J-pouch” is sometimes constructed, fashioning the pouch out of colonic tissue instead of ileum. This is generally done after most or all of the rectum has been removed for rectal cancer, as an alternative to a straight colo-rectal or colo-anal anastomosis without a pouch. But you’ve described the opposite situation, where the sigmoid and rectum were fine. A J-pouch of any sort is designed to go at the end of the line, at or near the anus. I honestly can’t figure out what sort of J-pouch was created in this case. It’s possible your gastroenterologist may have figured out the anatomy through the scope, in which case it’s worth asking what the heck he thinks the surgeon did. Do you have your pouchoscopy/sigmoidoscopy reports?

@Scott F  @Jan Dollar Scott! Jan! You did it! Scotland Yard may be calling, they need you. You both sleuthed, thought, pondered and asked enough of the right questions to find the answer and it's a double triple quadruple doozy for me - but exactly what Jan suspected.

The last piece of the puzzle fell into place when Scott asked if I have my scope reports.  I do have my "pouchoscopy" reports and now I know why my G/I docs never called them pouchoscopies. One G/I called them colonoscopies and my new G/I calls them Flex Sigs. I always wondered why everyone on this board had pouchoscopies and my docs didn't call them that And why not? Because my scope report states this:

• Impressions:
• 1) The examined portion of the ileum was normal.
• 2) Patent end-to-side ileo-colonic anastomosis, characterized by healthy appearing mucosa.

Okay, WHAT?  "Patent end-to-side ileo-colonic anastomosis"?!?!  What on earth is that?? I never had a clue what the foreign sounding medical language meant on my reports - I thought that was a way to describe something about the J-pouch, but both of you know what it means.My former G/I doc even has a diagram on the scope report showing the curve of the small bowel leading to the site of the short length of sigmoid colon ileo-sigmoid anastomosis and then on to the rectum and anus. I always wondered why there was never anything that looked like a j-pouch on those reports, but I thought maybe it wasn't important. (Slapping forehead here). I rarely saw my GI doc unless briefly before a procedure. I DID ask my current GI doc why the MRI defecography report had comments about the large amount of stool in the sigmoid colon and not one word describing or mentioning my jPouch. She shrugged and didn't answer the question. I figured she didn't think it was important.

Oh, geez.

Now, thanks to you (and Chat GPT for quickly listing every difference between a J-pouch and an end-to-side ileo-colonic anastomosis) I am really slapping my forehead. DOY.  No wonder you asked your question, Jan.

Sheesh.

Wait. What? I don't have a J-pouch?

For Pete's sake.

Why on earth did my surgeon (and everyone else) tell me I have a J-pouch and no G/I doc ever correct me when I talked about it or problems with it? Every time I go into the ER with a small bowel obstruction (about 9 times over the past 18 years), I tell them I have a J-pouch. Is it because "Patent end-to-side ileo-colonic anastomosis" is not easy to say and there is no short cut and they figured J-pouch is close enough? Why would my surgeon, after the second surgery, tell me he built a thing called a J-pouch that would "act as a holding tank"? Having lived in rural areas during some of my college years, I distinctly remember his talking about the Jpouch and in my mind,  imagining a holding tank for a septic system. It made sense. 

Of course, now I have more questions, but I will save them for the colorectal surgeon on Tuesday. You have both been amazing in clearing up almost 18 years of total misconception.

I will admit I have kind of a sickening feeling.  I don't want to no longer be a member of this forum. Is having an ICA (if that's the right acronym) close enough to J-pouch issues that you won't kick me out? Whatever you decide, I promise to be gracious. I am stunned at how two perfect (in every way) strangers would be willing to help me so much. And I wouldn't blame you one bit. If my G/I's scope report is to be believed over the surgeon's pronouncement of his successful J-pouch surgery, I don't have a J-pouch. I don't have a J-pouch? What?

I can't begin to describe how disorienting that feels.

Jane, don’t worry about whether you belong here. You are not a poser. You’ve had a life changing bowel resection. If you have found support you can use, then you have a place. Hopefully you can help others with odd anatomies find their way. You may also find other support groups focused on FAP and related diseases out on the web. Obviously, IBD and FAP have both overlapping and completely different challenges.

I am so sorry that you have gone nearly two decades without knowing what is going on inside you. For the life of me, I cannot imagine why you were told you have a j-pouch. In the future, tell your docs you had a right and transverse colectomy with ileo-colonic anastomosis. I would not be a bit surprised if your issues wind up being adhesion related. The saying goes, “once an adhesion former, always an adhesion former.” They can be quiet for years and years, then BOOM, havoc ensues.

Good luck with your follow up.

Jan

I’m relieved on your behalf, @SeattleJane. You had a perfectly ordinary surgery for a partial colectomy - it was just communicated improperly to you. If there had actually been a J-pouch floating around in there then *that* would have been a problem. This even may help explain why the enemas stopped working for you: a little Fleet enema can completely rinse out a little J-pouch, but it’s much smaller than a sigmoid colon. I’m guessing that (perhaps) a somewhat higher volume colonic irrigation would have worked, and certainly been less debilitating than daily Mg Citrate. You still have to figure out what’s going on with the constipation, and how to manage it going forward, but at least it’s probably “ordinary” constipation (if it isn’t adhesion-related, as Jan mentioned). Pelvic floor therapy might help, and psyllium might help, and there are plenty of resources for constipation management.

BTW, “patent” just means “open” - it’s not part of the procedure name, but it tells you that the anastomosis isn’t where things got backed up.

@Jan Dollar @Scott F

Jan and Scott,

I appreciate your replies, you provide grounding and reassurance at a time I am still trying to wrap my head around what's what. This morning, in an attempt to fathom how my medical providers could have referenced "J-pouch" to me for the past 18 years, I looked at my most recent scope report done last October 1, 2024, just 5 months ago.

There it is. J-pouch.

The language is:

"Procedure indication: new onset constipation, history of total colectomy for polyps with J pouch, mild anal stricture noted on last sigmoidoscopy."

The report was written by my current GI. She has done 3 scopes to date, so one would think she'd indicate if I had an ileo-colonic anastomosis instead of referencing a J-pouch - but maybe not? No way to know for a while yet - not until my appointment March 5. By the way, the scope she did on October 1 showed no strictures or adhesions. All clear. That's why she ordered the MRI defecography and the anal-rectal manometry tests to help diagnosis the cause of prolonged constipation.

My earlier reference (up thread) to finding a scope report with the language "end-to-side ileo-colonic anastomosis" was written by a former GI. Because all providers to date have said I have a J-pouch,  a rectum and a small portion of large colon, my bet is his language referencing an ICA will be the correct description of my anatomy, but...not sure yet. I have a request in to the hospital for Medical Records.

One question you might know the answer to: Is it truly impossible to have a rectum and a sigmoid colon AND a J-pouch? How could that even hook together?  Since my physician's assistant and I could not fathom how that Rube Goldberg-ish contraption could possibly all connect, she referred me to the colorectal surgeon - so he could explain it.

Or not.

Big inhale, long exhale.

Thank you again for your wisdom, guidance and reassurance on this adventure.

Jane

Part of the confusion stems from the fact that you have (quite reasonably) reported to every provider that you have a J-pouch, so the “history” naturally includes a (probably fictional) J-pouch, followed by some (perhaps) sloppy reporting (and maybe careless scoping) on their part. Surgeons occasionally do bizarre procedures, especially when they are faced with “a mess,” as your surgeon described it, but I don’t think you have a J-pouch.

Adhesions can’t generally be detected by scoping, since they are outside the bowel, but strictures can. Most of us have adhesions after bowel surgery, but only some of us have adhesions that are located in particularly troublesome locations.

Yep, like Scott said. Docs don’t have time to actually read all their patients’ past medical records. Mine would fill a room! So, they hope their patients are good historians and the brief background sent by a referring doctor is good enough. If you have records spread all over with unaffiliated providers it is even more difficult. Sometimes after providers retire the records go into storage and who knows what happens to them? Digital records are fairly new. Beyond that, they hope to see the typical landmarks when they scope or do imaging.

As to what they call the scope procedure, that varies. For me, it is scheduled as a flexible sigmoidoscopy (for scheduling purposes for the OR for time and equipment). The staff usually just order the standard prep and I have to tell them I have no colon or rectum. But, my GI calls it a pouchoscopy once I am in the procedure room. Presumably, it is because he knows what he is looking at. Since I have Kaiser, all my records are accessible by all my providers and they were one of the first to digitize. Still, I have a mountain of records dating back to the 1970s.

Jan

@Jan Dollar @Scott F

You are both aces at s'plaining! And spot on in your comments that the medical field would by necessity and respect trust a patient to know their own history. Since the colorectal surgeries in 2007, I've said I have a J-pouch - and they believe me. Makes perfect sense. Thank you.

As mentione, I thought I had J-pouch surgery in 2007. Tomorrow morning I will drive a fair distance to retrieve a copy of 2013 surgery records from the office of a general surgeon who was on call when I entered an ER with a small bowel obstruction. 8 days after entering the ER, the obstruction did not resolve and I had surgery. Could the general surgeon have cut out the Jpouch and connected the remaining "parts" in a way that matches the ileo-colonic anastomosis surgery?

Wait. Reading that back, I realize it can't be right. The general surgeon could not possibly have put my rectum and sigmoid colon back in place in 2007 if they were removed for a J-Pouch surgery in 2013. It has to be that I never had a J-Pouch...no matter what they told me in 2007. This is so confusing.

Whatever the general surgeon's records say (if I can understand them) I am hoping for the clarity I need to know what anatomy I do have, and the confidence to correct my medical history status with current medical providers.

I still plan to see the colo-rectal surgeon on Tuesday and will bring the general surgeon's 2013 surgical report with me.

Best to you, I hope all is well with you and yours.

Perhaps the old records can be FAXed to save you the trip? Even if you don't have a FAX machine there are services that can send and receive a FAX for you for a fee.

The hardest part of the upcoming visit with the colorectal surgeon would be (for me) to distill the story into a size that a surgeon's patience is likely to tolerate, and remain focused on the current problem you're trying to solve. Getting the story right is nice, but getting the problem solved is priceless.

Good luck!

@scott F

You gift me again with another good point on keeping it simple and to the point during the visit to the colorectal surgeon. I don't see there being much if any back story.  Just - polyposis diagnosis led to 2 colectomy surgeries in 2007, an SBO led to another surgery in 2013, and several other SBO hospital stays resolved without surgery (the dates of those SBOs will be on the intake form).

My physician's assistant would like the surgeon's perspective on the MRI defecography showing 7cm of stool in the sigmoid colon after a prep of 2 enemas and clear liquids. She wonders if the sigmoid colon may have become enlarged over the years and be a contributing factor in the constipation and/or be retaining stool to the point it is impacted. She'd also like to know if he thinks there could be other causes for the worsening constipation, as well as his thoughts on possible remedies not yet tried.

Frankly, if I see him next Tuesday knowing without a shadow of a doubt I don't have a J-pouch, everything seems much simpler.

FWIW, 2 (small?) enemas and clear liquids is usually enough prep for a J-pouch. It will tend to be less adequate for a full sigmoid colon and rectum.

You may indeed have some enlarged colon. The defecography should definitely be reexamined, and I’m glad you’re seeing the surgeon. But it’s also possible that things are more mundane than that, and some constipation got out of control, partly by being managed with J-pouch-sized treatments.

Thanks again, again, Scott! I am moving ever onward with a smile here.

My pouch does not empty properly although the reasons may be different than yours.  I was also told I had pelvic floor dysfunction by multiple docs including Dr. Shen and did extensive pelvic floor PT.  Eventually I returned to the Cleveland Clinic and saw Dr. Tracy Hull (now retired).  She discovered and extra chamber in my pouch where the poop gets stuck.  She even had trouble flushing it out when I was under anesthesia.  My current regimen (per her instructions) involves catheterizing and irrigating the pouch 4x/day.  This has helped enormously but is very inconvenient. While enemas also work for me, Dr. Hull told me that is unusual and that most people with problems like mine do not get relief from enemas.)  So - I think you need to see someone who really really understands j-pouches and has the patience to extremely carefully evaluate your situation.  Unfortunately, Dr. Hull has retired.  I am headed to NYU to see Dr. David Dietz in 2 weeks to discuss options including ileostomy and k-pouch not because my current situation isn't working but because it is limiting my ability to live "normally".  Feel free to PM me if you want more details.

I have a couple side thoughts - I'm not sure if you've had a DNA test for a recessive APC mutation, this mutation can result in someone having random, usually <50 polyps in their GI. They don't typically turn into cancer. My genetic counselor is a bit of an APC geek and loves to discuss it's mutations and mosaics -  mutations that are not in all cells.

As for Mayo Clinic approval - Mayo really likes complicated health issues that haven't been solved by other doctors. From what I've read, your medical issues fit that criteria.

I'm from MN, had my IPAA surgery at Mayo and way too many people I know have had surgeries and treatments there. I hope you're able to get in and get help with your pouch issues!

I hope your appointment with your doctor went well and you get some help.

@SeattleJane posted:

Thanks again, again, Scott! I am moving ever onward with a smile here.

Hi, Jane. Did you get any improved clarity from your consultation?