Severe Pouchitis -Mexico connection

Did you have a culture to see if it’s c diff or cmv? That would be my first question

All tests were negative

Then if there is nothing bacterial or viral like cmv growing in there being in another country shouldn’t matter, it could be a coincidence

Its possible the travel itself ; the stress on the body change of habits, routine  or diet that affected your overall system making it easier flit a flare up to take hold.. Ulcerations and inflammation in the pouch are not always cause and effect in my experience

Thank you! I’m curious if anyone has experienced severe flare up & then gone into full remission

@Adam21 posted:

Thank you! I’m curious if anyone has experienced severe flare up & then gone into full remission

When you say remission do you mean on symptoms or on inflammation? Because I have achieved remission on symptoms many times but have always had inflammation in the pouch, either low grade which has been called "simmering", or something more than simmering.  One can live with simmering inflammation in the pouch if the symptoms are controlled, and I have done so for almost 30 years.  That's not ideal obviously, but my quality of life is quite good.

As for Mexico, I was there in 2000, 8 years after getting my pouch.  At the time, I took some chances that were not advisable as far as eating local restaurant food at various destinations on the way to Chichen Itza in the Yucatan Peninsula, and had zero issues during and after the trip, despite some arguably unsafe eating behaviors.  There is a tendency on this board to look for cause and effect in health issues, and sometimes they just are not knowable.  My father recently had a serious flare of his IBS, and he blamed it on my dry rub chicken, although he had eaten that same dry rub chicken half a dozen times previously with no IBS flare.  I would suggest to you it's better to focus on treating the issue you have properly -  something may or may not have triggered the issue while you were in Mexico (could have even been the air travel), but the task now is to get better.

BTW I took rotating antibiotics continuously (not on and off) for 25 years plus, and am now on Remicade for 5.5 years and doing well, but I do not have an inflammation free pouch.  Just a few scattered ulcers and most of the inflammation is at the J Pouch inlet.  Because of the lack of backsplash valve I think many J Pouchers eventually get some level of inflammation in that area, due to basic physics and the mechanics of the Pouch, and there is nothing that can be done to change physics or the mechanics of the pouch, as far as backsplash stool goes. 

Thank you!

@Adam21 Most cases of pouchitis, even severe ones, clear up completely after treatment. Some cases turn out to be chronic, and those folks need to stay on treatment to keep the symptoms and inflammation at bay. Those folks are also much more likely to be active on this forum.

I do not think there is a connection but then again who knows? I would probably stay out of Mexico at this point lol. Or maybe, its highly likely that traveling stresses you out and maybe that stress gives you gastro problems? Another theory?

If your pouchitits still comes back, Biologics are excellent in treating pouchitis-Remicade

The reason I opted for surgery back in 2009 was to avoid biologics but I guess I may not have choice anymore

@CTBarrister posted:

When you say remission do you mean on symptoms or on inflammation? Because I have achieved remission on symptoms many times but have always had inflammation in the pouch, either low grade which has been called "simmering", or something more than simmering.  One can live with simmering inflammation in the pouch if the symptoms are controlled, and I have done so for almost 30 years.  That's not ideal obviously, but my quality of life is quite good.

As for Mexico, I was there in 2000, 8 years after getting my pouch.  At the time, I took some chances that were not advisable as far as eating local restaurant food at various destinations on the way to Chichen Itza in the Yucatan Peninsula, and had zero issues during and after the trip, despite some arguably unsafe eating behaviors.  There is a tendency on this board to look for cause and effect in health issues, and sometimes they just are not knowable.  My father recently had a serious flare of his IBS, and he blamed it on my dry rub chicken, although he had eaten that same dry rub chicken half a dozen times previously with no IBS flare.  I would suggest to you it's better to focus on treating the issue you have properly -  something may or may not have triggered the issue while you were in Mexico (could have even been the air travel), but the task now is to get better.

BTW I took rotating antibiotics continuously (not on and off) for 25 years plus, and am now on Remicade for 5.5 years and doing well, but I do not have an inflammation free pouch.  Just a few scattered ulcers and most of the inflammation is at the J Pouch inlet.  Because of the lack of backsplash valve I think many J Pouchers eventually get some level of inflammation in that area, due to basic physics and the mechanics of the Pouch, and there is nothing that can be done to change physics or the mechanics of the pouch, as far as backsplash stool goes.

I may not necessarily agree that you never get into remission with no Inflamation. I have been pretty religious about getting my pouchoscopy done every year & never was diagnosed with inflammation. It could differ from person to person. I have had a great quality life for last ten years and yes too much partying - alcohol & smoking

Well if you were never diagnosed with inflammation then by definition there can be no remission, because you never had it in the first place.  However, my point was that many times treatments will improve symptoms and not the inflammation, and then the J Pouch patient goes for a scope and is horrified to learn that there is inflammation in the pouch which has not been getting treated or is not responding to the treatment.  If I had a dollar for every such post I have read on this board, I would have won more money by now than what was in our winning Kentucky Derby pool for the guy who bet on Medina Spirit.

In my case, there has been some level of inflammation in my pouch for almost 30 years.  I would like to think that the treatment kept it from being worse, while not entirely clearing it up, and my history of scopes tend to show that to be the case.

@Adam21 posted:

The reason I opted for surgery back in 2009 was to avoid biologics but I guess I may not have choice anymore

LOL! SAME HERE!

I have personally refused to travel to Mexico. I have never met anyone in my family who did not get sick in or on return after traveling to Mexico. I got food poisoning locally once and that caused pouchitis that lasted weeks, when my husband was sick for a few days. So, I do not mess around with it. Plus, whenever I travel outside the country I bring antibiotics for the “just in case” scenario. But, that is my preference. Plus, now I am on biologics for pouchitis, so I try to be careful.

If you are lucky enough for those ulcers to heal up, I would be vigilant about it. As time goes on your risk for pouchitis goes up no matter what you do.

Jan

And am I being stupid- I’m not drinking, I’m DRINKING  with bottle of wine to start my evening & a pack of smokes —LOL

@Former Member posted:

LOL! SAME HERE!

@Adam21 posted:

And am I being stupid- I’m not drinking, I’m DRINKING  with bottle of wine to start my evening & a pack of smokes —LOL

Your not being stupid but that is definitely not a good idea honey. I would not recommend anyone to drink/smoke with a J-pouch/ostomy, or anyone for that matter.

@Former Member posted:

Your not being stupid but that is definitely not a good idea honey. I would not recommend anyone to drink/smoke with a J-pouch/ostomy, or anyone for that matter.

Agree 200% I’m trying

@Adam21 posted:

Agree 200% I’m trying

Please try as much as you can, we have suffered enough! Lol.

@Former Member posted:

Please try as much as you can, we have suffered enough! Lol.

Smoking or both? Both will be hard.

Adam, yes people have had remissions. I know I had, but never spontaneous. Always with antibiotics, and now with biologics. Pouchitis is not an infection, but an inflammatory response to bacteria, often normal flora, but also to pathogens. For many of us, a severe bout of pouchitis becomes chronic and it becomes a challenge.

I presume you are being facetious about the bottle of wine and pack of smokes. Either way, won’t help or hurt your pouchitis, just cause other problems!

Jan

@Jan Dollar posted:

Adam, yes people have had remissions. I know I had, but never spontaneous. Always with antibiotics, and now with biologics. Pouchitis is not an infection, but an inflammatory response to bacteria, often normal flora, but also to pathogens. For many of us, a severe bout of pouchitis becomes chronic and it becomes a challenge.

I presume you are being facetious about the bottle of wine and pack of smokes. Either way, won’t help or hurt your pouchitis, just cause other problems!

Jan

Yes, I think I’m the fortunate one to get chronic pouchitis after a severe bout. Oh well, it’s what it is. I had good 10 years of life. I’m now 47, no complaints.

No, I’m not being facetious but I’m changing my life style - might be too late

@Adam21 posted:

Smoking or both? Both will be hard.

Both!!!!! There is evidence that both of those factors are not good for people, especially us IBD folks.

Since you overcame IBD and made it through both surgeries, you are strong enough to quit those two bad things. I have faith in you

What’s the longest one can have working pouch? Like how many years before u might lose it

@Adam21 posted:

What’s the longest one can have working pouch? Like how many years before u might lose it

It varies from person to person. Some pouches fail within a few months and some fail after 25 years. No one knows when its time, I just say stay in the moment and enjoy the present which is the now

@Former Member posted:

It varies from person to person. Some pouches fail within a few months and some fail after 25 years. No one knows when its time, I just say stay in the moment and enjoy the present which is the now

But do all pouches fail at some time? Anyone with pouch that never failed?

@Adam21 posted:

But do all pouches fail at some time? Anyone with pouch that never failed?

Of course! There are some people on here that have had it for over 40 years. The J-pouch failure rate is 15%

Adam, oh no, never too late to to change your habits for the better! As a former smoker, I know the vice well. I was fortunate to be able to just decide to quit without much fuss. The wine is another story. Wean off gradually if you have been at it for a while,  unless you get professional assistance. Your body may be too acclimated to it. I have never been a heavy drinker, but I have had many patients who were. I used to work in a VA Hospital. For whatever reason, there seemed to be a high incidence of alcohol abuse among the ranks. Anyway, time did not make things easier for them. No judging, just understanding. I wish the best for you in your journey to better health.

Jan

@Jan Dollar posted:

Adam, oh no, never too late to to change your habits for the better! As a former smoker, I know the vice well. I was fortunate to be able to just decide to quit without much fuss. The wine is another story. Wean off gradually if you have been at it for a while,  unless you get professional assistance. Your body may be too acclimated to it. I have never been a heavy drinker, but I have had many patients who were. I used to work in a VA Hospital. For whatever reason, there seemed to be a high incidence of alcohol abuse among the ranks. Anyway, time did not make things easier for them. No judging, just understanding. I wish the best for you in your journey to better health.

Jan

This is good into. So your experience shows higher pouchitis rates among people who DRINK vs people who don’t? I would love to know if their is a correlation between the two. I personally believe the two are connected to some extent. Or it could be just me.

No, no. I have no info indicating more pouchitis in drinkers. Gastritis, yes. Liver inflammation, yes. Alcohol can trigger an IBD flare in some people, as it is an individual thing. It does irritate the gut. Same with smoking. But some people actually had a protective effect from smoking in regard to UC. There are recorded cases of onset of UC and UC flares when a patient quit smoking. But, smoking does not appear to be protective for pouchitis or a cause of it. https://pubmed.ncbi.nlm.nih.gov/29788269/

But I don’t need to outline the litany of health risks of smoking or drinking too much. I am sure you have seen all the warnings. We all get to decide what risks we find acceptable. If you feel that alcohol and smoking are affecting your pouch health, you are probably right. It could be “dose” related too.

Jan

@Adam21 posted:

This is good into. So your experience shows higher pouchitis rates among people who DRINK vs people who don’t? I would love to know if their is a correlation between the two. I personally believe the two are connected to some extent. Or it could be just me.

I did research this topic and  I have found that they are related.

Adam, a lot of people have different opinions on this topic, I would just recommend to do some research on it and make your own opinion on what you find.