That's what I'm here for.

Ok, here's one. Why is it so noisy when we go to the bathroom. I was squeezing a bottle of almost empty Hershey's chocolate syrup and it made the same sound as I do. Why is that? Is it the size, the shape or the fact that we don't have rectums anymore? Just curious about that and wondered if in the future they will find a way to make us less noisy (maybe not me but future j-pouchers).

I think the noise issue is probably something that is on a more personal basis and probably has something to do with the type of output a person has. My output is usually pretty solid and there's not a lot of excess liquid, if any. As such, I don't really sound too much different than I did when I had a functioning colon.

If the output is more liquid in nature, then it'll make more noise coming out. I'm not really up on physics, so I can't comment on exactly why that is, but that would be the cause I would pin any extra noise on. This would be especially true if there is gas involved (which there usually is when using the bathroom). I good example would be to take that syrup bottle you mentioned, clean it out, dry it out, and then squeeze the air out. With a viscous liquid in there, it'll make all sorts of crazy noises. Without the liquid, it'll just kinda go "whoosh" and be done with it.

So in the end (ha), it's probably just a question of output consistency. Dryer (not sure if that's the term I'm looking for) output should create less noise.

Thanks for the offer, ES. I don't know if this would be in your line, but ... any idea as to why "things" are SO inconsistent? Some days - fabulous, some days, not-so? I'm talking types of BMs: this will definitely be TMI, but some days the consistency is perfect, with a feeling of complete evacuation afterwards - ahhh; some definitely not.

I'd like to say I don't think it's food related, but am suspecting that's the answer I'll get? Thanks again!

It could certainly be food related. Keep in mind that even people with perfectly healthy colons can have some bad digestive reactions to certain foods. I have a friend of mine who's perfectly healthy, but if he eats shrimp he'll be miserable for at least a day.

The other reason probably has to do with the pouch itself and the tissue involved. The small intestine was never meant to take on the role of the colon, so even though the body has massive adaptive capabilities the remaining digestive tract probably wont achieve the same level of functionality when it comes to fluid uptake.

The small intestine is also used to just pushing everything through to the colon, with no real stops along the way. Since the pouch is now the new end of the line, the intestine has to learn to slow things down so things have time to firm up.

So it's basically a combination of different foods elicit different reactions from the digestive tract and the tissue of the pouch/small intestine is adapting to it's new role. Even if you've had your pouch for awhile, it's probably still undergoing some amount of change at the cellular level.

thanks for doing this, Epic!

i also think gas and consistency varies from person to person and depends a lot on diet/meds. some jpouchers pass a lot of gas (loud or quiet), and some pass hardly any gas!

ok, i have a few Questions as well.

1. what is your opinion on IBD vaccines? And ways to determine if someone will develop IBD in future (genetic testing)? Maybe even possible to determine disease likelihood in a fetus? it is possible?

2. do you think UC patients' immune systems are still wacked out, even after colectomy? is it possible for the immune system to be calmed down and even reversed back to a healthy immune system once the main offending organ (colon) is gone?

Btw, scientists are INCREDIBLY sexy. Just sayin'

thanks

Liking the conversaiton, but to add to the comment of inconsistancy, the sting factor can also change. Why is some movements stingier than others. I have had my pouch for 14 years and still learning new things. Some years are worse than others, and some I wouldn't even know I had a pouch. But the pouchitis reminds me about 4 times a year. Whats the best thing for stingy anus.

fq:

1. You can't vaccinate against an autoimmune condition. Vaccines work by introducing an antigen (usually in a deactivated form) to the immune system so that it can later recognize the live form of the same antigen. This approach can't possibly work for autoimmune conditions, because the antigen in this case is a patient's own tissue. As for genetic testing, I believe there are certain markers that are already used to determine if someone is at risk for Chrons (not sure about UC). If there is a genetic component (and there probably is) then genetic testing could be done (even in utero, in the case of developing fetuses).

2. It sort of depends on why the immune system went all bonkers in the first place. Since that questions is still somewhat up in the air, it's hard to say. Theoretically, if the colon is removed, you're no longer producing anti-colon antibodies and so the immune system goes back to normal in that regard. That doesn't mean it can't go haywire and attack something else. Without knowing the underlying causes with certainty, it's hard to say.

Garp:

It could be specific foods. I notice that when things sting a bit, there's also some extra bile involved. If there are foods that trigger increased bile production, then the intestines may not be able to reabsorb all of the bile and then things may sting on the way out.

Eric
Apparently you can vaccinate against AI conditions - some top docs (immunologists) have developed a vaccine for IBD and it is about to enter trials. You they have had a small number of people undergo trials and have so far had good results. Time will tell.

http://www.qubiologics.com/

A lot of what happens in the gut and how it interacts with the immune system is unknown and docs will tell you that themselves. There's a lot of real dispute as to whether this is an AI condition, an infection disease or a syndrome which manifests in similar symptoms but with multiple causes.

killcolitis:

That site seems to be all about drugs that are used to make a patient's immune system attack cancer cells, which is a great idea, but it has nothing to do with autoimmunity.

If you Google IBD vaccinations you will get some results, but those are vaccinations against Infectious Bursal Disease, not Inflammatory Bowel Disease. You can't vaccinate against an autoimmune response, it's just not how the immune system works.

That being said, if there is some underlying infection that first triggers the IBD, then you could vaccinate against that. The problem there is that first you'd have to know exactly what strain (or strains) of what pathogen cause the initial infection. If the trigger even can differ from person to person, then vaccinating against that initial infection would be all but impossible (unless you could narrow down of list of potential pathogens and vaccinate against all of them). If you can find a link to something that shows me a vaccination in the works to prevent Inflammatory Bowel Disease, I would love to read it.

That immunomodulator for cancer treatment is pretty cool though, I'll definitely read more about that.

fq:

Forgot to mention it in my earlier answer. Glad you think scientists are sexy

No actually if you read through the site you will see they've developed a vaccine they are using for Crohns and UC. It even says on the side that they are starting trials for moderate to severe crohn's. I've actually spoken to the CMO and he was one of the former chief immunologists for Health Canada. So, it is a vaccine for an autoimmune condition.
And, I was speaking to my daughter's GI about this yesterday and she says they have/are looking at using interleukin 10 as a carrier in a vaccine to treat IBD. It's in the development stages of course.

I'm still not convinced that Qu is making a vaccine, but it is a treatment for IBD and that's cool. I'll have to read more about the technology to see what's actually going on there.

I did some extra research as I probably should of in the first place and I did come across a study about vaccinating using attenuated T-cells from the gut to stimulate IL-10 producing T regulatory cells. I didn't even think of something like that as a possibility.

One of the key aspects of being a scientist is the ability to change your position in the presence of new evidence. You have provided me with the means to that evidence and my position has been changed.

Thanks for the knowledge

I think its confusion on what a vaccine actually is. A vaccine is a very particular kind of immunization that helps the immune system prepare for an infection in the way Epic describes. ( by introducing and antigen and allowing the body to build up antibodies to the antigen).

however, to the general public, a vaccine means an injection that cures something. So they see any injection that might cure something as a vaccine. It is not a vaccine in the strict medical definition.

http://www.qubiologics.com/archives/1233

The docs who developed this call it a vaccine, and as I mentioned one was one of the top immunologists in the country so I'll go with that. I'm not a biologist by any means but I do understand what a vaccine is in the general sense. Eric, if you are actually interested in this, you might want to email them. They are incredibly nice and generous with their time. They are seeing good results so far but are quite cautious. Who knows, if it works, maybe it will be used to treat pouchitis one day. It's nice to have something positive in the pipeline that is not an anti tnf.

thanks...interesting discussion!

Mr. Scotsman, you sexy scientist, I have another question that popped up in another thread (one random question is "are you single"). But actually my real question is:

Why does pooping insoluble fiber (nuts, seeds, etc) feel more painful with a j-pouch than with a colon.... even though the a-hole exit is the same? Is it because the stool is "thinner" with a j-pouch than with a colon, so it has less "cushioning" and stool to coat the seeds and nuts as they exit? That is my highly scientific hypothesis. It feels like they get stuck on their way out, which causes us to push/strain a little more to expel them, which then causes those darn nuts and seeds to scrape off a little microscopic bit of ass tissue on their way out. fun times.

~

Have you heard of the prometheus test? What are your thoughts on this test?
I have just had this done and it came back as Crohn's disease. I guess all the markers have pointed that way. When I was dx in 2007 all the biopsies that I have had done in the past have showed UC. I even had a full colonscopy with NO MEDS because they wanted to see what was going on. No family hx, just came on out of nowhere.
I am 5-1/2 months from takedown and now dx w/Crohn's. Not sure what to think or who to believe at this point.
Any thoughts or scientific info. is welcomed!
Confused -
Roberta

fq - I think you may have something there. There certainly isn't as much material being passed through and a sort of cushioning effect may have been provided by that with a normal colon. The longer transit time of the colon may also give certain foods more time to break down. Humans can't really break down insoluble fiber, but some gut microbia can to some degree. No colon, less microbes, less break down, less time for breakdown. Also, if the anus is already tender from butt burn or fissures, anything coming out will be more noticeable.

RLC - I don't really have any familiarity with the Prometheus test. I'll look into it and get back to you.

i don't know the science behind prometheus testing, but fwiw, my doc said he doesn't put any faith into prometheus test. he doesn't think the prometheus test can determine anything definitively and by itself. he thinks biopsy is more accurate. not sure if a positive test result may mean something though?

Thank you fq! My GI had said it wasn't as accurate but if that came back as Crohn's and biopsies came back as UC then maybe I have had both all the time. Not sure certainly confused! After my takedown I was going 20 to 30 times a day and have always felt like I have been diseased. Who knows what to think at this point!
Epic - anything you find I welcome the information!

Roberta

Hi Roberta, that doesn't make a lot of sense to me; I think you can only have crohn's or colitis, but not both. There is 'crohn's colitis' which is crohn's of the colon, but that is different from UC. I believe scientists are discovering other forms/types of IBD, and it is a complex area. Maybe our resident scientist Epic will have some more insights (and his intelligence of course will make him even more attractive!....*Sigh*). Ok I'm being semi-serious now. Oh! I think also the Cleveland clinic doesn't care for the Prometheus test at all. My old GI favored the test but he also said I would be incontinent with a j-pouch. I think a lot of GIs are a little 'behind the times'. No offense to GIs, I am sure there are a few good ones out there (like Dr. Shen, but I see him more like a j-pouch specialist), but my experience with them hasn't been great in terms of understanding the disease, especially surgery options and outcomes. If I were you, I wouldn't be too terrified yet based on the Prometheus test alone, and would wait for other test results and probably get a second opinion, even from a surgeon who is familiar with j-pouches. What does your surgeon say, btw?

I'm still not sure myself how the prometheus testing works, but I would be more apt to believe a direct biopsy than anything else. With a biopsy, you're looking at the tissue itself. With any sort of secondary testing (such as a blood test), you're looking at various markers and then trying to infer something from that. It's like seeing smoke and inferring that there's a fire somewhere. Well great, you know there's a fire. What you don't know is where it is or what is causing it. As for having Crohn's and UC concurrently, everything I've read says no to that. Whatever it is, I hope you find your answer soon so you can get to feeling better.

Here is a nice jargon free quote I found from the National Institute of Health (responsible for research dissemination)....

“All autoimmune diseases involve the interaction of multiple genes and environmental triggers,” . “You are born with your genes, but you are not born with these diseases. Something happens. We don’t know what the triggers are that start these diseases, but if we did, maybe we could avoid them or even block the process. In fact, it may even be possible to actually stop the autoimmune disease,”

There is no "cure" or vaccine that is available at the moment, but with the advent of new gene mapping techniques who knows what the future (next 20 years or so) will hold for auto immune diseases

Thanks you guys for trying! Still at a lost. I have to meet w/surgeon soon to go over all this new information from GI's office. I just haven't made the appt. yet. Tired of seeing doctors. I will make the appt. soon.

Roberta

little greeny -
That certainly makes a lot of sense. If we can just work on figuring out the genes and what the triggers are I think there would be more cures for all diseases including cancers.
Why do our bodies start to reject?

Roberta

RLC- Unfortunately it is still unknown why these "genes" get turned on (think of it as a light switch getting turned on). Some theories on autoimmune disease point at viruses as being the main trigger that starts our bodies attacking ourselves other theories look at environmental factors or even a combination of factors all working together. Human gene mapping has the potential to prevent all autoimmune disorders, cancers and many genetic diseases. All scientists need to do is find a way to stop that "lightswitch" from being turned on. Sounds simple but it will take a lot of hard work (decades of research and then being able to apply that research to real life situations). I have faith that one day UC and other related diseases will be a thing of the past. Hope I didn't make that more confusing.