Hi Rachel,

Really sorry to hear about the continuing frustrations.

Your description reminded me of this past thread about anismus and "paradoxical" sphincter contractions: http://j-pouch.org/eve/forums/...1071921/m/8897015036

Maybe this will spark some new ideas for you/your docs.

Sorry to hear you're not feeling well Rachel.

Will keep good thoughts for you, and hopes that you'll be feeling more 'normal' soon !

Hang in there,

Mark

Got my scopes moved up to next Wednesday. I pray we figure something out. I'm so tired of this bipolar ride these days. Ugh.

I could pass everything and anything when I had the GI bug two weeks ago... just came flying out. But now I'm back to struggling. It's just bizarre.

I do not have a fistula, but when I am experiencing these type of issues I often have inflammation at the anastomosis and within the anal canal, but with that is also more discomfort than simply not being able to empty my pouch easily. After your scope they should be able to tell you what's going on hopefully and if your canal has narrowed they will also dilate you when under anesthesia. Possibly it could also be scar tissue?

It's not as bad as when I was majorly strictured, but I'm thinking there's definitely inflammation. The CRS said it felt open, but perhaps the inflammation has it swollen enough that things are just hard to pass?

What do you use for inflammation, jeane?

I don't think it's scar tissue... The CRS would have had more trouble with the rectal, I think.

I think the fistula is the main issue here. I hate that damn thing so much. It's totally screwed my life over, then some.

I think some of this stuff is more of a "time marches on" sort of thing. Perhaps because of your fistula and seton, your mind tends to want to blame it on that. I say this because I have similar things going on, but do not have any fistulas or even any history of anal stricture.

What I do have in common with you is that I am coming up to close to two decades with my pouch. I used to have very predictable gas at the end of every movement that signaled an empty pouch. Now it is more hit or miss. I don't miss the churning gut thing with the gas, but miss the secondary function it would provide. About half the time my stool seems too thick to evacuate, like there is a kink in the works near the end of the line.

So, I just wonder if, just like those with a colon, things just slow down with time and age. Maybe we need more fiber and bulk as our pouch ages. It does not offer much in the way of solutions, though. Sorry about that.

Jan

Yes, I'm beginning to wonder, too... when I did say how my pouch is almost "too efficient" at absorption, both my surgeon and GI guy nodded about it.

Wondering if a regimen of, say, Miralax, could help? Guess I'll try to wait and see what all the scopes show first, before I make any changes. I have good days and bad.

The fullness and heartburn/upper bloat is back, and bad, right now, too. I know we will be ruling out Celiac, too, and some adults have more of the heartburn/fullness/constipation than kids do, as a presentation, so I'm very curious about that, too. Regardless, after these scopes, I'm making dietary changes. I'm afraid of fiber, because in the past, it made me thicker. I'm already having issue with that. Again, probably best to wait.

Finding it a little easier to go if I put my feet on a stool.

Good call, I think.

Find out what it isn't at least, before making changes. I wasn't talking so much about soluble fiber, but insoluble fiber, for more bulk and to scoot things along. I am finding that my tolerance (and need) for fruits and vegetables has increased, and I do better with less soluble fiber (rice, breads, etc.).

I had assumed that no colon meant I would be spared the problems of a slowing gut that others have as they get older. Wrong assumption I guess...

Jan

Hey,
My almost perfect pouch is about to turn 18 years old next month. In the past 9 months or so it has completely changed personalities. I've had a RV fistula for the past 8 years (but it's smallish, and I have no seton). I have new symptoms that I never had before and had some scopes but everything always "looks" great. But it just doesn't feel or function the way it used to. I wonder if age has anything to do with it. Not necessarily age of the pouch, but age of my body. Also, I am 49 and have had pre-menopause misery for almost a year now. I think Rachel, you are still too young for that, but I know women who don't have a pouch, or any type of intestinal disease who suddenly have bloating, and gas, and heartburn when pre-menopause starts.
I hear you Rachel, I feel for you, and are often scared myself of what is happening, why is my pouch changing/mis-behaving after all this time. You're not the only one (if that helps). And of course we know it's not easy to not really know what's going on inside.
Just wanted to let you know we're all in this together!
C-jay

Yeah, a "colon" friend who is turning 44 and I (soon to be 43) are both experiencing some new and similar GI issues, and we have wondered about a hormone link. Her issues seem to be cyclical to her monthly cycle; mine, a little less so, but sometimes seems to link up. It IS a thought.

My pouch turned 23 this past January. The changes for me coincided around the time I developed the abscess then fistula, and have become more pronounced over the past year.

I for one am beginning to see a real link with the hormones. At first it really wasn't obvious, but now it seems incredibly probable. I spoke to my surgeon and my gynecologist because if my pouch is inflamed or if I am ovulating it is the same sensation. My pouch and vagina have become one organ and I can rarely tell where the pain is (when I'm having pain). I'd like to hope it is that and not the beginning of pouch failure. I, like Jan, had a one-step surgery so never had a bag. But I would take one gladly if/when the miserable days become too much. I hope things settle down soon for me and for you too!
My whole flora seems so off and I cannot figure out why? Can this new heartburn ( which I never had for a single day before in my life) be causing it?
Everyday a new question to be answered.
C-jay

I just hope this new GI guy figures out something.

We are ruling out pouchitis vs. Crohn's vs. SIBO vs. Celiac, or any combo of any of them, plus double checking that I'm not having any inflammation due to the fistula, or stricture, because of it. Also, looking at the upper, checking maybe why I have fullness and bloat (a few close family members have hiatal hernias), when we go in for the duodal biopsies to rule in or out Celiac.

I did FODMAP before, and felt better on it (figured out some triggers; high gluten foods were a trigger), and I felt better being more strict with my diet, also, so I think I'll return to it after these scopes. I feel better on a more Paleo type diet, with lower gluten, but I can't edit that til the biopsies. At least I don't have to wait until June now!

Had a two step, and while life without an ostomy has been good, I could return to one, if necessary. And an end ileo is easier than the loop one I dealt with at 19. I feel like me, too. If things progress to awful, just give me back the ostomy.

Took MOM last night, and was able to go normally.

I don't think it's anismus. Pretty sure things just get slow and too thick. When loose, and gassy, all works right.

*sigh*

Jan, what are you doing besides diet changes to aid with evacuation?

I'm going to join the crowd, my pouch is 21 years old and I too have mostly lost that great gas blast at the end of my BMs and things seem thick quite often (or OTOH, too watery), not easy to move through, and "swollen", or "stuck". Every once in a great while, though, I go through a short period (week, maybe) where the gas returns and everything moves as it should. Very curious, in my mind.

The bidet has been helpful. It can act as somewhat of an enema and helps clear things out at the end. Then again, sometimes it's as though the water can't "get through" - things are too tight (let the jokes begin) and it does nothing. As an alternative, have you tried tap-water enemas from time to time?

I don't know if my PV fistula is part of the problem or not. Couple years ago, Shen told me the area directly around the interior fistula hole was "clear". I don't bleed - ever - but the ATZ does show "Chronic active enteritis with ulceration and granulation tissue. Fragments of squamous mucosa with acute inflammation and reactive changes." I currently take either canasa or anucort; they help. I will add, when scopes are done, I'm usually told things look fairly calm; biopsies ALWAYS say otherwise. Shen nor my surgeon have ever seen evidence of Crohn's in the pouch.

And the hormones - I've been going through perimenopause/postmenopause since '08, and have absolutely felt the connection to the way my bowels behave.

I'm also considering removal of the pouch and have talked to my CC surgeon about it. After recently expressing concern with going through such a major, major surgery, she threw out the idea of going to a temp ostomy as a first step, but I personally can't help feeling that's the worst of both worlds - will still have my pouch, my fistula/seton AND loop ostomy to care for/deal with.

Rachel - I'm looking forward to hearing what your scope reveals. Hope you get some good insight and find a way to help move things along, one way or another.

I'm glad I'm not alone in this. I *do* feel a bit relieved that it's just not "me," though I feel bad others are having issues, too.

Me too! I can't wait for Wednesday! lol. Who would have thunk it, that it'd be excited to be scoped?!

What do I do? Mostly just shrug my shoulders and muddle through, glad that I can pretty much manage a typical life.

But seriously, I've gradually reduced my loperamide to once a day, from the 8 a day I used to take. If I take none, my stool becomes too loose and watery in a couple of days. I also take small doses of Norco for my arthritis, so I have to balance the pain vs bowel slowing side effects..
(It's always something, isn't it?)

Besides that, I make sure to eat a lot of fresh fruit and vegetables, and I take Align daily to help keep my gut flora in balance. Plus, lots of fluids. I have soup and salad as my dinner most nights, keeping my freezer stocked with home made soup. I seldom have rice, potatoes, that sort of thing. But I have not broken my bread and cereal habit yet.

Jan

I've never ever needed Imodium or bowel slowers or thickeners. And I pretty much take nothing at the moment to slow me down. This is just me right now.

I feel alright today, but probably still the effects of the MOM from last night. I still have to eat gluten til I find out what is up, so I had toast today, and one of my 1-2 Big Macs a year (lol... yeah. THAT'S not normal for me, but what the heck... figured the grease might help me out!)

I've always been able to tolerate veggies and fruit, but lately, the fact that they're not breaking down well, sort of "clogs" up in there, at the exit. I AM sort of wondering if I'm not a little narrower than normal, honestly. I'm going to ask him to dilate during the scope, "just in case."

Yeah, muddling along. That's me, too.

Just wanted to chime in about hormones. I didn't have my j-pouch surgeries until after I'd gone through menopause and I don't take any replacement hormones. Hormones could be affecting them but I'm guessing it's more about the age of the j-pouch than hormones. Does this make any sense Jan?

I hope you get some answers Rachelraven

This morning? Normal! But! I took a mag sulfate tab, and it might've helped. Don't know. Ah, the complexities of my body these days!

Rachel,

I'm so sorry to hear about all your frustration! I am going through the same symptoms as well. The scope and CT scan showed nothing, so I just saw my surgeon the other day. He referred me to a radiologist at Jefferson in Philly to have a defogram (I go May 9th) He also started me on Levbid, while my PCP started me on Klonopin in the hopes that relaxing the muscles might help. I hope this gets figured out soon for you, I can truly empathize with your frustrations.

Still all normal today. Right amount of gas and consistency. Maybe I have IPS?

Or maybe we made you feel better because we let you know that you are definitely not alone.

Hope you continue to feel good....

C-jay

You all do definitely make me feel better!

Scopes tomorrow. Excited and nervous. I don't think I can shove much more gluten laden foods into my pie hole, ugh. I'm a much "lighter" eater by design, anyway, and this is just too much... But I had to do this for the test.

Surprisingly, bowels have been normal (for me). I vacillate so much! I swear, I do blame hormones a bit with all of this... but I cannot put my finger on what triggers the thickening and slacking off of gas. I did buy a really great water bottle, and have increased my water intake ten-fold since Saturday (I *do* drink water, but maybe not enough consistently).

I've never, ever, ever needed Imodium, psyllium or other bulk fibers. Anything that makes you slower or thicker, ugh. Just need to always avoid. I always wonder if the length of someone's small bowel plays a factor in things. Like, if you have a longer small bowel than normal, would you absorb better, vs someone with a shorter one? Even with my loop ileostomy, I never had the problems some have with them. I don't know.

Will update when I know more!

Good luck! Good or bad, I hope you get some answers that help you manage your life.

Jan

I'll be interested in hearing the outcome of all of your tests Rachael.

I went back and read some of my IPS research. In a paper written by Dr. Shen et al about research into IPS it said "Occasionally patients with celiac disease or proximal small bowel bacterial overgrowth may have similar presentations.....(to IPS)". Pretty much what we have been discussing.

Upper scope and pouchoscopy completed.

My esophagus, stomach, and even duodenum look really good... he suspects that I do *not* have Celiac, but biopsies are pending.

He said my pouch looked great, and he wished everyone's J pouch looked as good. That's good news, really. Only a few aphthous ulcers, nothing bad.

I do have some minor inflammation around the lower anastamosis site, not really "cuffitis," but he suspects the fistula may really be the culprit for this "swollen" feeling I am having at the anal canal, and why at times it gets tight, and I have some difficulty passing stool. He's starting me on Canasa, to see if it helps. He said to take it for 1-2 weeks, and see how I feel... if it helps that swollen feeling. I was a little narrow, so he did a gentle dilation as well.

If the Celiac rules out, he said we are likely looking at SIBO as a cause for my bloating and discomfort, etc. I'm already committed to going back to FODMAP/SCD type dietary changes, though, so I'm going to start there. Hubby is also on board, to make some changes, because he has arthritis and could stand to lose some weight/eat healthier, and it will likely be better for my kiddo too (with her Crohn's type colitis).

So. I'm glad my pouch looks so great... I've never in all the years had a "bad" report (worst was in early 2013, had aphthous ulcers through and above the pouch, and was dx with pouchitis). I'm hopeful the Canasa takes down the swelling/inflammation issues I seem to keep having there "down low."

He said I should have pathology reports by next Monday. So now, we clean up the pantry and get started on getting healthier.

He's still not ruled out ALL ideas of using Humira, someday, because of the fistula, but feels it likely isn't where we'll go at this time. He said in about a year, he might recommend we try pulling the seton drain, and seeing what happens... I'm not sure how I feel about that, and also asked about "plugs" (which I know have a high fail rate), and he agreed it might be something to try... but we still have no real "direction" when it comes to the fistula and seton, except leave well enough alone, and try the Canasa. My surgeon has always thought my abscess then fistula was just "bad luck," and he thought my narrowing was due to "inflammation" there from the fistula, so maybe he's been right all along.

Not sure about the "thicker" stool, etc. from his side, but might be that I'm just tighter there, and the fiber, etc. isn't passing well... which is why I need a thinner stool. I still do think that there's something about the hormone link, based on what others have also said. Plus, no men have chimed in on this issue, only the ladies. Maybe that is part of this journey with this pouch?


Thanks, all.

Maybe the dilation will help with the stool consistency. I guess you will find out... Hopefully the Canasa will help you, it works well on the inflammation that goes along with my cuffitis.

I think when we started talking about hormones the guys all went running!

Read the note better... he did mention the word "cuffitis" but said it was likely mild, if I had it, and that "maybe she would benefit from some Canasa..." which he did order. Never had that problem dx before, but perhaps he's right?

I really like this guy. I feel fortunate to have found him.

I'd give the Canasa a minimum of 3 weeks to work, although you will no doubt feel the difference much earlier. Another benefit of using them is their size - yeah, they're big, but they kind of help keep things a little more open down there. My CC surgeon gave me that insight. I go down to 3/week after things settle.

I'm glad you found your doc, too - sounds like he's got you on the right track.

Here's a male chiming in, and hoping the Canasa does the trick for you, Rachel.

I am sixty-eight years old. I have had the problem of a slow transit problem. I have had to take dark chocolate and other food to speed up my GI tract. I am going to take more insoluble fiber to seeif that will help. I find it hard to deficate if my stool is getting thicker.

n/a, that's how he ordered the suppositories, so I'll definitely give it a whirl.

Thanks, Scott!

My stool and issues vacillate, but the dilation helped a bunch. Things were pretty easy today.

Onward and upward! Regardless of the Celiac, even if negative, I'm going very low to gluten-free, because when I did FODMAP, it did seem to be a trigger. I won't be so worried that "cross-contamination" or whatever would be a problem, like in a restaurant, but I always feel better on lower gluten ways of eating, regardless.

Started yesterday, cleaned out all my cupboards, and am starting a sort of FODMAP/SCD/low inflammatory mix of things, with a focus on whole foods and fish and low to no gluten. And small meals; I do find I do better with smaller meals.

Will start Canasa tonight.

Sounds great Rachel! Hopefully, it is just an accumulation of subtle changes over time.

Good luck with the Canasa.

Jan

My GI is OOT, but the nurse gave me the results of the biopsies.

No Celiac! But likely a gluten sensitivity/intolerance like my lactose intolerance, I guess, based on the lab. But no duodenal changes, so that's great. Been gluten free since last Thursday, and feel way better. I think I might have sensitivities to wheat, etc. like one has according to the FODMAP way of eating. Previously when I did the elimination trial on FODMAP, I'd felt a lot better without it. So I'm keeping it zero to minimal... With some good results.

Pouch shows mild iliitis in the neo-ileum and mild pouchitis in the pouch itself. The nurse wouldn't choose a treatment, preferring to wait until the GI reviews it. I suppose he might make recommendations for abx, but I feel pretty alright right now, so will wait and see. He said if things were mild, we may just sit in our heels and wait and try the diet and see how it goes. I can't take Flagyl, and his other choices were Cipro and Vanc. Guess I'll wait to talk to him.

So. For how crappy I've been feeling, it's way less terrible than I thought it'd be. The Canasa may be working because I'm not having that "swollen," unable to go issue, but he also dilated a small structure, so... I don't know. Guess it'll just be a time issue, and wait and see what his thoughts are.

I'm glad things are better and you have your test results! Congratulations on figuring a diet that has improved your condition

Not sure if this applies to you, Rachel, but my understanding is that there is always some inflammation seen on biopsy in a j-pouch, no matter how healthy the pouch is. So, treatment is based on the visual assessment during the scope, your symptoms, and whether biopsies show unusual findings.

I would not be surprised if the slightly narrowing outlet caused more cuff inflammation, and combining food intolerances just fanned the flames, so to speak. I like the conservative approach too.

They say that as we age, we often develop sensitivities. It is a real gyp too!

Jan

ARGH.

Pouch is at it again. I had a dilation with my CRS on Monday the 15th, and ever since, it's been WORK to go to the bathroom. HE said he dilated things, and that I'd let things go "too far" and I was very narrow, but honestly, prior to the dilation, I was going to the bathroom FINE.

Now it's difficult, can't get the blasty thing going... relying on magnesium again...

Wondering if, because of the underlying inflammation that is likely there at the cuff, when he dilates it sort of "stirs things up?" I can pass the dilator just fine, so it doesn't seem to be an issue of narrowing, but if things are SWOLLEN, it could be acting sort of like a bathroom stopper, and closing up when I'm trying to evacuate the pouch.

Still waiting to hear about the Humira...

My body is a jerk anymore. grr