I should add that another symptom has been incessant itching on the skin around my anus (about 1-2 inches out), but not directly ON the anus, more like my tailbone area. (It's not butt burn.) It was so bad that I could have sworn it was some sort of infection... wanted to walk around all day with a fork down my pants. Tried making sure I'm thoroughly clean after each go, washing with antibacterial soap, using ointments and powders, taking anti-virals, anti-fungals, anti-biotics... The antibiotics oh-so-slowly brought it down almost to a halt, but it never went away completely. Finished antibiotics a few days ago and am worried it will come back.

The only suggestion I have is to try Super Digestive Enzymes by LifeExtensions or Solray. You can buy them at Health Food stores or on line at Amazon.com etc. When I was at your stage of the j-pouch life I took them with the last meal of the day as I usually ate very little during the day like yogurt and protein smoothies. I found no difference in the brands so either one is fine.

I first tried Beano but it didn't work as well and was more expensive.

I didn't have as bad of a problem as you are describing but started taking them sooner than 10 months out.

The food thing is very frustrating. One day a food will be terrific and the next time it's not.

Thank you, Marie. I will look into that. :-)

Just a thought: perhaps a sensitivity to something, like dairy/lactose? Another long shot: consider eating more slowly, to swallow less air.

This sounds like small intestine bacterial overgrowth (SIBO) to me. The antibiotic of choice for treatment is Xifaxan, but with stubborn cases you usually do need to do the close to zero carb diet for a while I've read about some success with treating SIBO using the FODMAP diet lately as well.

There's a breath test for SIBO -- it seems a lot of GIs don't want to bother doing it, and would rather just have you take Xifaxan and if that helps they'll call it SIBO. I don't know, if I were potentially embarking on another course of antibiotics and possibly a really strict diet, I would probably want the test first. I've done the test myself in the past and it was pretty painless and it did confirm SIBO. I would ask your GI about it.

Hui,
nearly 5 years since my takedown,as for the wind problem,it is annoying at times. I have tried everything to see if it can be controlled. Best control with me, is to eat less fibre. that seems to work. Anything green tends to produce wind
Suppose it is trial and error. My specialist, told me that what might upset my system today, will probably not in a couple of weeks
Best of luck
Bob

When I have gas it's generally due to lactose, garlic or beans. I take Lactaid chewables for the first and Beano for the other two. Good luck!

Gas comes with the territory now with the new plumbing. First, I would try eliminating certain foods in your diet to see if something you are eating is causing it.

I second trying the digestive enzymes as TE Marie said. It's likely not something medical but if it's casing you too much grief then you should see your doctor.

When I mentioned the itching to my surgeon he said it is usually caused by "leaking" or "seeping".....sometimes we can't feel it happening and sometimes it is clear so no tell tale signs! His suggestion was to do what you are doing.....keep the area clean.....and to use a barrier cream so the seepage doesn't touch the skin. Fortunately, for me, I don't experience this often but when I do the above mentioned technique works. Good luck on finding something that works for the gas. No fun!

I have yet to figure out the mega-gas and bloat events that have plagued my GI tract for years now. Makes sense in my mind that there is some pathogen doing battle in my GI tract and gas is the by product. Xifaxan never did much for me, same for Cipro but occasionally Flagyl helped in the past.

Alka Seltzer is a YES. Baking Soda (Sodium BiCarbonate) is a good thing in my case, and seems to interrupt the gas producers at least temporarily.

MY GI docs have no answers, some allude to Short Bowel Syndrome or Bacterial overgrowth etc...

MK

Scott - I eat very slowly already and chew thoroughly. Slow eater by nature.

Pluot - That's what I'd figured to begin with (SIBO). My insurance wouldn't cover Xifixan, which is why I ended up on the Cipro/Flagyl combo. Am trying to do the low/no carb thing, but it is quite difficult at times. Maybe I will look into the breath test... would be easier to treat if I had a better idea of the cause.

guzzunder - I have tried cutting out all fiber for days on end. Doesn't seem to have much of an effect at all on the air problem. What I'm experiencing is way more severe than the typical farts you get with certain foods like beans.

ISeeUC - The only real dairy I eat is in cheese and yogurt, which I've never had a problem with before, but I suppose I could try cutting them out for a few days and see what happens. I do try Beano occasionally and haven't noticed much of a difference but just switched to a different brand that is double strength, so we'll see how that goes.

Marianne - I knew that some increased gas in the intestines is to be expected with a j-pouch, but I think the extreme degree/severity and the widespread nature (gas in my actual stomach that causes nausea and huge amounts of belching) is a little more than what is normal j-pouch behavior. I have seen my doctor, and after trying antibiotics, now she's of the "wait and see if it resolves itself" mentality, even though it's been going on for about six months now.

CeeeeCeeee - That was my first suspicion, which is why I tried those strategies. However, the severity of the itching was way more than the typical itchy j-pouch bum-hole. More like a bad rash, infection, or bite of some sort. (Felt like I had a bad case poison oak.) I never experienced it until about 8 months out from takedown. And it's weird that this particular symptom doesn't itch actually on or right around my anus but further out, up by my tailbone area. I figured the SIBO that Pluot mentioned had gotten so out of control that somehow the bacteria was creeping out the backdoor a bit and causing infection/irritation on my skin. The antibiotics slowed it way down, which makes me think even more that it is not just a cleanliness issue.

Mental Kase - I will try alka seltzer to see if it helps; thanks for the tip.

Thank you for all of your responses, everyone; I appreciate the help. I have a couple things to try now.

If anyone else reads this thread and has any further suggestions or advice or has dealt with the same issue (successfully or not), please don't hesitate to jump in and let me know... Would still appreciate any further help or relate-able stories anyone can provide.

Thanks again. Much love and take care.

Boot, your symptoms scream sibo. You dont need breathe test to diagnose. Get short course of xifaxaxan, maybe your doc can give you samples or maybe the xifaxan pharm company has patient assist program.

Also try fodmap diet..be strict with it. I have posted previously on this so do a search on
fodmap and sibo. You probably need fodmap and xifaxan together if you have sibo so bad with symptoms you describe and also weight loss.
Also fodmap isnot totally carbless by any means. So that will be a plus to you.
Unfortunately i am very sibo knowledgeable because i suffer from "one of worst cases" my docshave ever seen

Oh and when it is at its worse..go on liquid diet for 3-7 days, but the trick is the liquids have to be fodmap friendly. One i use which my Cc dieticien found for me is boost kids essentials. I can only get it online.

I agree; this sounds like SIBO to me too. But, have you been tested for Celiac? It would be worth ruling that out as well.

quote:

Posts: 178 | Location: Bay Area | Registered: August 14, 2012
liz11

posted October 01, 2013 07:16 AM Hide Post
Boot, your symptoms scream sibo. You dont need breathe test to diagnose. Get short course of xifaxaxan, maybe your doc can give you samples or maybe the xifaxan pharm company has patient assist program.

Also try fodmap diet..be strict with it. I have posted previously on this so do a search on
fodmap and sibo. You probably need fodmap and xifaxan together if you have sibo so bad with symptoms you describe and also weight loss.
Also fodmap isnot totally carbless by any means. So that will be a plus to you.
Unfortunately i am very sibo knowledgeable because i suffer from "one of worst cases" my docshave ever seen

Oh and when it is at its worse..go on liquid diet for 3-7 days, but the trick is the liquids have to be fodmap friendly. One i use which my Cc dieticien found for me is boost kids essentials. I can only get it online.

Posts: 960 | Location: Pittsburgh, PA | Registered: December 17, 2008
Spooky
Picture of Spooky

posted October 01, 2013 09:29 AM Hide Post
I agree; this sounds like SIBO to me too. But, have you been tested for Celiac? It would be worth ruling that out as well.


Dx'd Pancolitis June 14, 2005
Step 1 - Emergency subtotal colectomy/end ileo, July 6, 2005
Step 2 - loop ileo September 26, 2007
Step 3 - Takedown! March 28, 2008

*Very happy poucher!

Posts: 1660 | Location: Toronto, Canada | Registered: March 18, 2009
Powered by Social Strata


Reply



The J-Pouch Group J-Pouch Community Forums Hop To Forum Categories J-Pouch Forums Hop To Forums General Discussion Too much gas/air in stomach & intestine...

Bootstrap
You described my symptoms perfectly. I had surgery years ago. I had some narrowing in my intestines so I don't know if that is also causing problems for me. I am not sure if digestive enzymes will help but i will give it a try.

quote:

washing with antibacterial soap

I made that mistake after take-down, and had a very sore butt. My doctor told me to wash only with straight water, never soap. Soap is very irritating, and anything other than a daily wash when you bathe is too much. After stopping the soap, the irritation disappeared. (I still get butt burn, but that's different than what we're talking about).

I had a bad fungal infection around my stoma before take-down, so I was paranoid about fungal infections. I used an antibacterial/antifungal soap in my bidet sprayer, and the result was an extremely sore backside.

That having been said, I do still get some itchiness in the area around the anus and especially in the hollow below the tail bone. I've stopped worrying about it, as the dozens of times a doctor has looked at it, there has been no sign of dermal infection, fungal or otherwise. I did get fistulas, but that isn't related to superficial skin issues - the abscesses always started deep in tissue, not on the surface.

So what I do now is look at it as an opportunity to enjoy a good scratch. In my case, the itching is not real bad. Obviously if it is distracting to you, you won't be looking at it in the same way.



.

Bootstrap,

Gosh, your symptoms are so very similar to mind its scary, especially in describing it the way you did in your initial post. I trully understand what you are feeling.

I take Activted Charcoal when I really have a hard time in trying to pass the Gas. My GI also prescibed Dicyclomine. They help some, but not to where I would say, I am satisfied.

For me, I have to stay away from all Milk Products. Soy Milk gave me Kidney Stones. I was using Rice Milk for many years but as of Oct 11th, I stopped drinking the stuff. I was going through so much cramps and gas, I was afraid to eat. So I did a lot of trial and error (I know, that sucks but what other choice do you have) and I was having these pains every day it seemed.

So one day, I decided not to drink Rice Milk and that also met I could not take my VSL # 3 DP. That day, my problems decreased.

The following day, I had Rice Milk with VSL # 3 DP and I had pain. Now I know the VSL can give you gas. So then I had to adjust what I ate for lunch. So I did not eat a tomato like I do.

What really got me wise was on the weekend, I eat two poached eggs at a diner with hash browns, bacon and toast and I felt much better. This went off an on for about a month and I have had pain like this since early May. SO then I stopped eating Rice Chex with my Rice Milk.

I would eat a bowl for Cream of Rice, then a hard boiled egg with 2 pieces of bacon, my pain was reduced. So since the 11th, I cut out Rice Milk and drink Almond Milk with my VSL # 3 DP. A small dose and I have been feeling better since I cut out the Rice Milk.

By the way, in one of my other posts, if one has Crohn's Disease. If you scroll down, Almond Milk is the first thing mentioned. Good Luck.

http://www.health.com/health/g.../0,,20559874,00.html

Rocket

Sounds like SIBO if diet has helped. Do a low FODMAP or Paleo diet. Avoid trigger foods and keep a diary of what bothers you.

It has been a year and a half since takedown for me. I thought the gas and gas pains would never go away. But they have decreased with time and made j-pouch life more tolerable. I hope it gets better with time for you also. I know being a teacher it is prob. hard to take a break every time you feel gas approaching. I know with me if I don't get a chance to release it I get horrible gas pains so with my new job I take frequent bathroom breaks. Keeping my fingers crossed things will improve every day for you.

I discovered that my symptoms scream not only SIBO but also candida overgrowth in my GI tract... so not sure which one it is at this point. Both are treated with a no-carb diet, probiotics, and either antibiotics or antifungals.

So I went paleo+ (very strict no carb, no sugar, no dairy - even fruit) for about two weeks and upped my probiotics but saw no change in symptoms this time, which is confusing. I cannot keep up the paleo diet long-term with a j-pouch, so I am just sticking to a low-carb diet for now.

Looking into Xifaxan.... insurance won't cover it, and the prescription is $1,040. I found a 75% off coupon, but that still puts my cost at $260, which is pretty steep, and I don't even know if it will work since I already tried two other antibiotics that didn't do much of anything.

At this point I'm not sure if there's anything else I can try.... Just continue low-carb and hope things improve I suppose.

David - I didn't mean washing with antibacterial soap after every go... I just meant I switched my regular shower gel to and antibacterial version to get a nice thorough wash in with my regular shower. Potty time is just water or baby wipes and ointment.

Have you tried low FODMAP diet? There are some FODMAP heavy foods which are probably included in your paleo+ diet, particularly onions and garlic. I would also recommend ditching the probiotics until you give the diet time to work, they're actually counterproductive if your SIBO is bad. I wouldn't rule out the diet until you've done it strictly minus the probiotics. On a low FODMAP diet you can still have white rice and potatoes so I haven't had an issue with lack of thickening foods.

Anyway, sorry to hear you are struggling with this. I have it probably 5% as bad (I burp a lot and have a lot of gas with my bowel movements) and it's not pleasant, I'm sure it's really frustrating. Hope you get some relief soon.

I recently started Xifaxan and had an insurance experience that may be helpful to others. Because it's so expensive, the insurance companies try to limit prescriptions to FDA-approved amounts. Xifaxan is FDA-approved for two conditions. My doc wrote an Rx for the 200 mg size, and insurance would only dispense a three-day supply. That's the FDA-approved dosing for traveler's diarrhea. When my doc rewrote the Rx for the 550 mg tablets, insurance paid for 60 tablets - a full month's supply at twice daily dosing. That's the FDA-approved dosing for hepatic encephalopathy. Thank goodness I don't actually have hepatic encephalopathy, but I now have the medicine on hand!

P.S. As some others have reported, it doesn't seem to be working very well for me.

Ditch the probiotics immediately. For many of us siboers probiotics add fuel to the fire. Also do fodmap. There are many many things ok on paleo but not allowed on fodmap. As pluot said onions garlic inulin that stuff needs ditching in every single thing you eat on the fodmap elimination phase. Get patsy catsos book. Follow it.

Bennie with fodmap is that you can eat certain carbs
However you may want to go liquid only for several days to help clear things out. Key is liquids gotta be fodmap friendly. What antibiotics did you try? Cipro
Can u get your doc to get xifaxan exception with your insurance.

If you do strict fodmap and antibiotics for 2-4 week you should see improvement. Pm me for more fodmap details

And you need to get this tackled sooner than later because bad bad sibocan can cause malabsorption problems and affect lots of things. Unfortunately i have encountered this.

Bootstrap: is it possible you have a sinus tract in your pouch?

I need a coupon for Xifacin. Where did you find it> I would fill my script tomorrow if I could. It would cost me 1500 to get mine out of CVS, my insurance also stopped covering it.

I agree to stop the probiotics and take the antibiotic. My probiotics, VSL#3DS cost that for 40 packets. I have to go back to paying for them again after the first of the year until we reach our deductible, ugg.

The thinking is that probiotics are counter productive. The antibiotic with be killing the good bugs you are adding along with the bad bugs and may miss some of the bad bugs... My Internist has me double up on probiotics for a while after taking antibiotics and not take them while on antibiotics.

I want to emphasize something about beano vs digestive enzymes. They cover more types of foods than beano does. I started out taking beano and thought it was great until someone on here recommended digestive enzymes.

I wish everyone relief!