That seems too frequent to me to call it "normal." Does your doc have experience with other possible things like C. Dificil, small intestinal bacterial overgrowth, and cuffitis?

Also, have you made any adjustments in your diet? What meds are you taking to control stool thickness or frequency?

Did your frequency and urgency decrease while you were on antibiotics?

If the BMs are mostly coming in bunches right after you eat it is a spasmodic bowel and the problem is resolved through anti-spasmodics.

If they come and go at irregular intervals throughout the day regardless of eating then you have some other issue.

Scott, I am taking 6 immodium and metamucil 4 times a day.I take vsl probiotics ,opium when I can`t bear it any more, it usually takes a couple of doses to slow my bowel down. My Dr. will start the stool testing tomorrow. I pretty much go all day long. It really does not matter what I eat. Sugar is not a good thing I have noticed, so I stay away from that. I seem to go more in the morning...then slow down mid day and then 3 or 4 in the afternoon it starts again. Night time I go 4-5 times. Ct, I will ask about the spasmodic bowel. I feel like I am having a real bad flare of UC. Thanks to you both for responding, It is so nice to be able to talk to someone who has been thru this...

Oh...My urgency did not decrease while on antibiotics

Jojoe - I'm so sorry you're having such a rough time. I don't have any suggestions since it seems like you're doing it all. I hope you find the answer.

kathy

I like CT's spasmodic bowel explanation as something to carefully assess.

Thank you Kathy! And Scott I agree 100%.Right now nothing but water the next three days, while they do this testing. UGH! I have been up since 4 am and its noon now and I have eaten nothing, I have made 9 trips to the bathroom SO far. I really again appreciate you all...Jo

is that safe for us? nothing but water for three days?

It must be or my doctor wouldn`t be having me do it!

You'll lose weight, but you should be OK. But are you sure it is water only? I've never heard of that for more than 12-24 hours. Beyond that, it is usually clear liquids, which can include electrolytes and calories.

Jan

Yes, For these stool samples 3 days , just water. I am 1/2 way done! Thank Goodness! So far this am only 4 trips to the bathroom. This is a first. Too bad I have to starve to get this result! I can eat tomorrow night! Then I bet I go to the bathroom a lot more times than 4. Thank you for responding, You know so much and are so helpful, Jan!

My average is about 25 BM's per day.

On good days, it is about a dozen (rarely).

On bad days - which are frequent, I have to go 40 to 50 times.

And this is with huge doses of lomotil, opium, hyoscamine, etc. etc. etc.....

The instant the smallest amount of stool enters the pouch, I am stricken with level 10 pain, cramps, and rectal spasms. Yet, scopes show no pouchitis or cuffitis.

I believe my heavy use of hydrocortisone cream when I had UC left my rectum severely damaged and the nerves exposed.

As time passes, I am becoming less able to ignore the pain. I refuse to return to an ostomy bag. Not an option. I'll check out before I do that.

Oh David, I am so sorry, as I can relate to some degree. The most times I have gone in a 24 hr. period is 36. Most days I am in pain, like you, I am getting used to it. I feel blessed when I read your story, that I only go 18-25 times daily. Thank you for taking the time to write to me. Please lets keep in touch, we are in the same boat or at least boats the are a bit alike. Jo

David,

Have you been referred to pain management? I wonder if a sensory nerve block would be helpful for you? Sometimes you have to attack it from a different perspective. Slowing the gut does not affect the sensitized nerves. This could be a complication of the surgery.

http://emedicine.medscape.com/...cle/1143675-overview

Jan

My Dr. put me on amitriptyline, but it gave me severe restless legs and insomnia, so he stopped it.

He said he was going to refer me to a pain specialist, but hasn't yet. My take on pain specialists is that their goal is to make you suffer as much as humanly possible while telling you that it's all in your imagination.

There is no level of pain that justifies taking a tylenol in their book, let alone an opiate pain killer. In my opinion, pain specialists are lower in professional standards than used car salesmen.

Sorry, but burning incense, acupuncture, remembering a "nice" thing or humming some lame Buddhist chant is not gonna decrease my pain.

Pain specialist = "live with it. We don't give a rat's ass about your quality of life."

I blame the government. They interfere with doctors so much that they are terrified of prescribing pain killers, even if their patients are obviously in great pain, so these "pain specialists" have cropped up with their snake oils and worthless hippy remedies.

David,

Since you haven't been to pain management, not sure how you can have it all summed up like that. But, they do manage opiate treatment, spinal blocks, nerve blocks, intrathecal pain medicine delivery, trigger point injections, Botox injections, etc.; definitely more than Tylenol and Hippy New Age stuff. I did try accupuncture myself, with high hopes, but didn't work for my neck symptoms. Disappointed, for sure.

Sure, you have to sign a contract, agreeing to strict rules of using only them for your narcotic prescriptions. But, their goal is to treat/manage the pain, not the cause. That is why it is appropriate when treatable causes have been ruled out. And yeah, just like any other provider, some pain management clinics are better than others. Hopefully your referral comes through.

http://www.guideline.gov/content.aspx?id=23845

Jan

Please go to pain management. I get celiac plex nerve blocks and it made a WORLD of difference for me. Seek out help. It also made my bowel and pouch better since the nerves are slowly being killed off in the abdomen. I go to the top guy in the world for it at Cleveland Clinic. Takes 15 minutes to do, I am awake for it, and doesn't hurt.

Pain management is not hippie new age crap. They are highly trained anesthesiologists that deal with blocks. There are over 20+ types to have and so many options.

Haven't been here in awhile and seems like not much has changed....hope this might help...
1. I tried everything to slow it down - all kinds of meds for the first few years. Nothing seemed to help so I stopped taking it all and things improved believe it or not. I also switched the backside lotion to just plain A n D ointment and that works way better than the other ones.
2. Diet helps or hurts everytime...everybody is different but I avoid...
fried foods with any grease involved(even fried eggs with butter.
spices like allspice, nutmeg ect...cinnamon is by far the worst - kills me.
sugar seems to irritate my backside so I avoid as much as possible.
MSG kills me!!! I can tell when it is in something...
all these things cause watery burning poops which irritate my backside and I go way more often. I also try not to eat before bed (like dessert or cereal)it seems to just cause more am poops. I also can't eat mushrooms, fresh veggies with any skin or nuts - they all stop me up and cause cramping...
I still go about 10 - 15 times a day but I quit counting. It just causes STRESS which seems to make me go more. I also change my underwear a lot - keeping dry seems to cut down the burn and number of poops...Been 6 years and things got better after year 3 for me and making these adjustments...
hope this helps any...
good luck

Thank you! I think your right about quitting the counting! It just makes things worse. I will take your advice and pray things will slow down someday to 10,12 or 15 times a day! A&D, I will give it a try..Thanks for your help!..Jo

A&D was always my favorite cream to use.

When I started having other types of problems, people asked me how many times a day I go, and honestly, at first I was like, "Well... maybe 4-10? Depends on the food?" I agree with quitting the counting. For me, it's not about the times I go, it's about how I feel *between* the times I go, which is pretty alright.

I agree, be savvy with your diet, and keep a log of what you eat to see what affects YOU, vs. anyone else (we're all so different). I used to be able to eat everything, and I mean EVERYTHING, but I've slowly had to sort of avoid mushrooms, corn, nuts, seeds, some of the tough raw veggies (cabbage, kale), and the like. I *did* eat some corn last night, but a young, on the ear corn (which I always find more tender, and more able to chew up to a pulp, vs. the frozen or canned kind that just stays in rubbery kernels). So far so good. My issues were more about outlet narrowing, though, than anything else, and those foods just are harder to pass. Surgeon saw me Monday, though and things are open, so I chanced it, and so far, doesn't seem to be any problems.

What kills me about frequency is that the bowels are naturally more active at night. I haven't had more than a couple of hours uninterrupted sleep since 2009.

If I only get up 3 times during the night, I consider that a rare blessing. Normally, I am up at least once an hour, and many nights multiple times an hour, until it starts to slow down around 4 or 5 a.m.

I've tried to find a source for heavy anesthetics (like propofol for surgeries) to put me under for a few hours at night, but no luck.

Opiate pain killers help a bit, but it is a balancing act, as too few don't work and too many produce insomnia. So far though, they are the only thing that has a real predictable impact.

If I am desperate and need sleep, I will combine hyoscamine, opium, lomotil, oxycodone, benedryl, and anti-nausia pills (forget name). Sometimes it works, sometimes not.

The best thing is for me to eat one meal a day - just after noon, and eat nothing else all day. That's tough because it's hard to resist hunger pains. If I eat one bland meal at about 1pm and don't have other issues, I usually have to get up only 3 to 5 times during the night - which is a good night.

I wish I could find a reliable hunger reducer that didn't have caffeine.

Thank you. I will begin a log. I did this earlier in my recovery. I really was not eating too much and quit. I still have not had a salad. I have been in no hurry. I juice everyday all veggies, no fruit, but banana and blueberry(pureed in protein shakes)I can manage well cooked carrots, squash, green beans, nothing raw. Too many carbs and sugar seem to be hard on my pouch...Even if I don`t eat, I have frequency tho..Maybe I am just a late bloomer!I am trying to be patient but sometimes I do get a bit depressed. Thanks for your advice...
I really appreciate it!

Geez, David. I don't think I'd still have my J pouch if I had all of your issues!

I do remember it continuing to get better over the first year I had my pouch, though I didn't have the issues you're going through. I stared full time nursing school 3-4 months after takedown, turned 21 a year after takedown, and had a normal college experience. I didn't care how many times I went, as long as I maintained continence. I don't normally get up through the night, either... Though in the earliest days, I did, and it tapered off over the first year or two. So hard to remember that long ago! I did start dating my now husband back then, and it never interfered with that, but he knew me from UC onward, so he knew all about things, and has always been loving and supportive of it all. Hang in there!

Agree to try pain management. Hubby's issues are with arthritis, but before he had correct treatment, our non-surgical pain clinic used injections on his back (and rhizotomies), and he did get some much needed relief. Not the same as a pouch, I know, but shows the power of what they could do.

Haven't got the referral yet. Maybe I will call the Dr. and remind him he was going to give me a referral.

Except for what you've told me though, everything I've heard about pain management specialists is that their job is to get you to accept living in pain without any medication.

David-
That's honestly not how pain management works in my universe. There are some lousy pain management folks - some of them act like it's all in your head, and others have no time for anything but profitable injections. But the good ones use a combination of approaches appropriate to you and your circumstances. The good ones also won't simply function as a narcotics dispensary, since most people get abysmal results over time with sloppy use of opiates.

Pain is profoundly subjective. No matter how physical the origin, the actual impact of pain on your life has a lot to do with how you process it. I suggest you keep an open mind, and treat this as something that's difficult in ways that are hard to understand in advance. Good luck!

I am going to one today...I will tell you first hand when I get back

Pain management can (and should) be more than handing you a script for an opioid. There are many adjunctive therapies that work or help chronic pain. Hubby truly had psoriatic arthritis, managed poorly because of *course* he couldn't have pain, as he was "too young, too healthy, didn't have all the markers," etc., so the nonsurgical pain clinic treated him with lumbar injections when the medical world was failing him... So they at least helped him until he found an autoimmune specialist who delved deeper into his history. I could seriously kiss the two anesthesiologists for helping him when no one else would, even if the help was just Bandaids vs. long term treatment and proper medication. It got us through some tough years.

I will try pain management. Realistically, it seems the last effort before euthanasia becomes the only remaining option.

Hopefully it works as well as some of you say it does. Crossing my fingers.