Tina Marie.
Is the tailbone pain from the large pouch? Does the pouchitis have anything to do w the large pouch. I have chronic tailbine pain and chronic pouchitis too. My doc says he thinks the tailbone pain is from the pouch distention due to my stricture. Not sure if this is the sane as an enlarged pouch.

Pouches can get overstretched from a stricture or problems like pelvic floor dysfunction (where your muscles do not work in tandem to empty).

I am sort of glad that I basically ignored any suggestions to try to "hold it" and delay bowel movements in order to help promote pouch stretching. A little is good, but how much is too much?

Jan

Jan, my surgeon never told me to hold it to stretch it so I didn't. I haven't had pelvic floor dysfunction and was even tested for it. I wonder if it has anything to do with being big boned and missing my uterus. Did it stretch to fill in the available real estate? I can hold it a long time if I have to, guess I know why. But I can go 15 times a day when having a bad case of whatever - pochitis/c-diff/cuffitis or combination of 2 or 3 of them.

jeane your tailbone pain is probably a combination of your flaring j-pouch and also if you have any arthritis in your lower back, as I do. I knew it, but it the x-ray verified it. People do not normally have their colons under their tailbones! Lots of nerves around the spine.

My GI and I didn't discuss the big pouch issue, just the treatment of my problems. This is a question I have after the appointment and wondered if any one here knew the significance of having a BIG pouch?

Missing your uterus can give more room to stretch, but it cannot cause it, at least not directly. Stretching occurs from internal pressure (like straining). A loss of suppoting organs can mean the pouch is more likely to sag or twist, and that might cause obstruction leading to retention and straining.

Jan

I've tried not to strain but have caught myself doing so. I guess time will tell if it causes major problems. I assume they can reduce the size or tack it up as support if it prolapses. I think I've read about this before. I'm not having those problems now and may never.

Good attitude to have.

Just because there might be abnormal findings, it does not mean there is something pathological going on. Could be an incidental finding, or something to keep on your list of things reassess if you later develop symptoms.

Bottom line, no point in borrowing trouble. It will find you when the time is right. You have enough stuff going on that the last thing you need to worry about is a problem you don't (yet).

Jan

That is a good question. Can an over stretched pouch ever return to normal size on its own? I strained often while dealing with my stricture for some time. I really no longer have this issue and have not for awhile, but even with straining my doctor never indicated the pouch was enlarged.

I am going to follow your lead Te Marie and get the lower xray. The pain is worse while lying down and sleeping and gets better when I am up and mobile. Could be pouch related but who knows?

I do notice though since getting the pouch, I always feel bloated snd have a distended lower abdomen and have lost my thin waistline. Some of this may unfortunately be due to menopause also.

I hope your recent finding does not alarm you. If it helps, my doc did not seem concerned when he indicated my tailbone pain could be from the pouch being distended from possible straining from the stricture or just due to the anatomy of the stricture at my connection.

My understanding is that an oversized pouch can often explain incomplete emptying symptoms. Whether the large pouch was caused by stricture, poor surgical technique or other reasons, the large pouch can definitely cause problems.

When the pouch is too large, it can not properly contract to empty. Your body relies on pressure and a synchronized effort to empty the pouch. The contractions just are not effective when the pouch is too large.

I believe that while incomplete emptying is often caused by a large pouch, it can also be the cause of the large pouch to begin with.... Sorry if confusing, and this is of course only my opinion/basic understanding.

Hope this helps,

Dan

Jeanne, My GI wrote to my doctors: "A water-soluble contrast retrograde examination revealed a large J-pouch with a mildly dilated pre-pouch ileum, but no evidence of obstruction. There was mild diffuse irregularity of the mucosal margins of the pouch suggesting chronic inflammation." It was a messy test as they didn't want me to have an empty pouch and they added contrast to fill up the rest of my pouch. I told the techs they should have told me to wait to bathe until after the procedure! This is where I asked to see a couple of the contrast X-Ray's and I saw my pouch in tandem with my tail bone. If I were you I'd pass on the test unless you wanted it to test for other reasons too. I wasn't getting it to test for the tail bone reason. I already knew this and admit it was nice seeing it for sure on the x-ray. The test was messy and I'll avoid it in the future if I can!

So that's all he said about it in the letter to them. I'll ask if she knows anything when I see her. She has a lot of IBD patients and the letter went to her as well. I agree about the distension/bloating. It's not fun. My waist line hasn't been thin for a while and I have lost a lot of weight since the surgeries. I just can't seem to get anything off around my mid section. You could be onto something, especially after a day when I have 15 BM's or so, the next day I'm sore and bloated inside.

Thanks Dan,
Thanks for your post. It makes sense ==============================================================================

Hi TE,
So good to hear that there are no strictures etc and that you a "diagnosis" of sorts or at least a "snapshot" of what is going on in there.
For the question of stretched/shrunk pouches...yes, they can shrink back to a certain degree.
My pouch is 35yrs old...started out at around 1 litre but depending on how good or bad the year has been (eating normally or on a fluid diet due to pouch problems or on strain drain for a k pouch) it can shrink.
When I was very ill a few years back and draining permanently for months it did shrink significantly to the point that my surgeon was concerned...but then again it was permanently empty and never solicited...I did regain capacity but only after months of working on it.
Not something a j poucher would like to do.
The "lots of very small meals" rule might work but I do not know why you would need to shrink it if it isn't causing problems (yet) as Jan says...it is more the general inflamation that worries me. The what and the why and the how to get a handle on it.
And of course the darn back pain....
Did they suggest anything or was it just the diagnostic and not treatment suggestions that they were after?
What is the next step?
Loads of luck on finding an appropriate treatment and getting rid of all the inflamation...if nothing else, if you can get rid of that you should feel loads better.
Sharon

Such great information. I love this forum and the people who take the time to contribute. I hope you feel better Te Marie. I will post here after my back X-ray when I return from vacation.

Have a nice vacation jeanne!!!

It doesn't show up in a normal X-ray unless there is contrast jeanne. It shouldn't take a big j-pouch or any pouch to make it to the tailbone if you think about it. Pouches sit in the pelvic bone, right in the middle. So not too far.

If you have tailbone pain and didn't before, it's your j-pouch in conjunction with your tailbone - I bet you!...not funny I know.

As for our waists jeanne, you are still in shape. It is hopeless for this grandma! I see my small intestines free floating without my large intestines or abdominal muscles holding them in during tests. After 3 midline surgeries and my vertical hysterectomy surgery -- my abdominal muscles have been so sliced and diced so much they are on permanent strike! Seriously they no longer get along, have separate customs and belief systems in place and will no longer be in the same union.

I'm alive so I'm just going to keep buying clothing to fit, as long as they make it. I've gained so much weight with this damn disease, UC, and it's devil medications (prednisone and the 'o'nes) and isolations that my yo yoing over 18 years have not left me an anywhere near a runway model or magazine model quality body. I couldn't even make it in AARP!

I'm not far away from my goal weight so I can't get as sick as I was. I don't have another 65 lbs to lose! I now have to accept elastic here and there in my (grand)mom pants.

I have to laugh ladies or gentlemen or I wouldn't have made it through all of this.

In February 2009 I ended up in emergency with severe abdominal pain, cramping, and continual nausea. An emergency surgery -- where they thought they'd find excessive scar tissue, a blockage, and/or a twist in the small bowel -- showed a very large pouch which had folded over on itself causing major problems. They re-sized the pouch on the spot (thank God the team on call had extensive J-pouch experience!) and I haven't had problems with that since.

What no one can tell me is how it happened. I'd had a similar experience in Sept. of 2008 and it turned out to be a lot of scar tissue forming external torsions and blockages -- but the pouch looked fine. So how the heck did it grow that large in just a couple of months? Or did they miss it in that earlier surgery?

Who knows?

Gin

The small intestine can dilate within hours or days in the presence of obstruction. If this is short term, over just a few days, then the intestine can resume normal size once the obstruction is gone. But, if this is chronic over many weeks or months, the intestine loses its elasticity and remains stretched. The rectum is very distendable, but the small intestine is not.

Jan

well I am an ex-jpoucher and perm. ileo person now thanks to my BIG j-pouch.

Concensus pretty much is that my jpouch was built too big for my petite frame and short waistedness. I had problems after step 2 and before step 3 takedown.. as the yucky discharge wouldn't and couldn't get out. So I had bad diversion pouchitis and had to get dilations.

I was an even greater mess right after takedown. Was diagnosed with pouchitis and cuffitis 3 weeks after my surgery. Though I am sure I had it day one after my surgery. After several months and my local GI doing every scope and test he could think of and throwing every drug at me..I kept getting sicker and sicker and losing more weight. When he said biologics and methotrexate I got my sick arse to see Dr. Shen at Cleveland

Well after a 20min appt he guessed my pouch had "mechanical problems" either ischemia or something. He scoped me the next day and in the middle of the scope in my versed haze I heard him say.."this not right, this no good, pouch not right here, can't get in, how can get out." He made me stay and did more tests, meet with surgeon, Dr. Remzi, another scope under full anesthesia, manometry tests. And then they did a defecography.. which showed clearly that the pouch was too big at the exit limb do it couldn't ever straighten to empty... even in all the contorted positions I had been trying.. and it was overall too big and collapsed on itself when trying to empty.

So both of those things prevented the pouch from ever being able to empty. Causing permanant antibiotic resistant pouchitis and cuffitis.

They agreed that an immediate disconnect was necessary as I was so sick. And 18months later I opted for a perm. ileo.

Sad thing is.. the surgeon who did my takedown saw on the pouchogram test prior to takedown that my pouch was very large and he told me it was a good thing. Well... how wrong he was.

I have met many many other people who have had similar issues. Many of them are petite women.
This is one of the reasons why Dr. R at CC is trying to get jpouch to be a certified surgery.. as he sees way too many "built wrong" jpouches.

Also most doctors have no clue how to figure that out these kind of problems once they happen. My local gi did everything he knew to figure out what was going on. Even starting with a scope. But he never saw that. Whereas Shen saw it within the first 10 seconds of a scope.

te have you ever had a defecogram. That was the icing on the cake test for determining how messed up my jpouch was.

liz11,
You have been through a nightmare!! I never have been petite and after shrinking am 5'8" at 58, I've shrunk almost an inch....I didn't have to do the dreaded defecation test - yet as the x-ray with contrast was bad enough and it was the one that told the big pouch story. They don't have you clean out your pouch first and it feels like they stick a garden hose up your butt. They first slather you with a quart of lube and all of this goo is disgusting. Then you are up on an X-ray table doing aerobics contorting to the positions they want you in as they take X-rays with the garden hose still sticking out your butt while you are clinching to hold it in case you explode and let the contents of your fully inflated j-pouch fly in the faces of the doctor and his doctor in training at the Mayo Clinic! The Techs are smart as they were on the other side of the table at this point.

It probably took 5 minutes but seemed like longer. Maybe it was 3 minutes, I didn't have on a watch, just 2 hospital gowns. Now I knew why I had to take off my bra. They had the X-ray table covered with chucks taped to it with industrial strength duct tape and now I knew why. WE had to get this s$$t out of me. I don't know exactly how WE accomplished me but not too much released on to the table. I think it was my remarkable control. I got off the table and said "you should have told me to take my shower AFTER the procedure". To which they said we have a clean up area for you right through here. I imagined a human car wash to hose off the industrial waste. Instead there it was again chucks duct taped to the floor for me to place my hospital gowns on. No container for me to put them in but a big area for me to drop them onto. I also had a sink with just 2 wash cloths to wash up with and hospital pump soap and paper towels. It was a nice clean up area and I am glad there were no guys with huge hoses to spray me off.

I did make them show me 2 X-rays before I "released" the j-pouch contents. I didn't make but I saw the last picture taken and I pointed to the first one taken and said I want to see that one. They looked at each other, like they didn't know if they could or not, and then showed me. Who cares? That was the pouch under the tailbone shot. I'd like a 8 by 10 glossy to take home with me please......

I've had the manometry test, piece of cake. That one sounded scary and was nothing. No hospital gowns or anything. You just never know what is waiting behind a procedure door.

This was a much more difficult procedure than the one before my j-pouch was hooked up.

Long story to end up saying I think my j-pouch has stretched. My surgeon trained at the Cleveland Clinic and I was asked by the GI that did my first pouch-o-scope if it was created at Mayo. He said it was the best looking pouch he'd seen in 5 years. This was during the pouchoscope and I didn't have medication so was awake. He was keeping my mind off of the pain as I had cuffitis. In any event it appears as even my cuff is larger.

It seems as I need to pay too much attention to what I eat and the whole digestion process of my body. I'm taking antibiotics now, as my 3 invasive tests in 3 days at Mayo made my pouchitis/cuffitis whatever worse. I want a vacation from this and the fibromyalgia making my body hurt all over too. I don't get enough sleep!

I'm sorry your surgeon made your initial pouch too big and also sorry they didn't want to try to make a new one. Maybe you didn't want to even try. I don't think I would now.

Having a big pouch doesn't necessarily mean anything bad. I too have a big pouch. Mine has been caused by two twists and prolapses due to NO scar tissue to hold it in place! I had emergency surgery in Jan due to twisting and my pouch was "the size of a football"! I can't even imagine. Then in March I had another surgery to tack down my pouch permanently. While my pouch did shrink after my surgery in Jan. it is still large and was even before that because of the previous twisting. Although my pouch is large, it doesn't cause any emptying problems or any problems at all as a matter of fact. In your case, I'm not sure what the cause of your large pouch is but I hope they figure out what's going on soon!

Te Marie, so sorry to read all you are going through. Hugs and prayers

Thanks ladies

Daisy18, Thanks for telling me about the size of your big pouch as I've been wondering about that very thing! I am going to email my GI and ask. I want to know how far it expands into my abdomen. I am sorry you've had to undergo 2 surgeries recently and hope they are your last.