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My husband has been looking into short-term retreat facilities to get his pouchitis under control. One place made a comment about him bringing his own enema kit, he explained that it's a different size for the j-pouch, it makes sense I suppose. 

Does anyone have one of these? Any recommendations of one to buy and where to get it?

Thanks, Julie

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Julie, I've never used an enema since having my jpouch, but people on here have written about doing enemas and I don't think they are any different from the ones used for anyone else. You could do a search on this site to find references to them. I hope your husband gets his pouchitis under control soon.

Aimee

If this is about some sort of “cleanse” then I’m very skeptical that this is a good idea, and it’s likely worthless (or worse) for pouchitis. Nevertheless, I f you’re just trying to flush out the pouch then tap water is less irritating than the stuff that comes in a Fleet enema, and the Fleet bottle can be emptied and reused. It’s about the right size for a J-pouch. Some folks routinely flush their pouches as a way of dealing with incomplete emptying, and they have various ways of making this easy to accomplish.

If it is a cleanse, it is useless to treat pouchitis.  The only valid reason to do an enema, other than taking therapeutic enemas such as Cortenemas or Sulfasalazine enemas, is to flush the pouch in anticipation of a pouchoscopy or other exam. Cleanses are not valid treatment of IBD.

For flushing purposes Fleet enemas, although they can mildly irritate the pouch, contain a saline solution that draws water into the Pouch.  As such the flushing mechanism may be better using the Fleet saline solution than tap water, although tap water will give you a flush out.  The Fleet enema is intended to be held for 5 minutes (and I can usually do that easily), and during that time water is drawn into the bowels which provide additional flushing action.

Last edited by CTBarrister

I had to give myself enemas for at least a year before I was diverted from using my j-pouch.  I ordered a regular enema kit from amazon.  I had no problems with over filling it.  You can tell/feel how much you need.  He could also get fleet enemas and use them several times.  It doesn't take too much water.  It was just cheaper for me to use a regular enema kit.  I used my bidet when at home and the kit when we were away from home over night.  

I hope all works out well for your husband.

Thank you for all of your replies!!

It appears, after reading all your thoughts, that the “tools” for the enemas are the same as a regular enema kit. The different enemas referenced are probably for a small volume of solution since the pouch is smaller than the original colon. 

I will be looking for a regular enema kit that is reuseable. 

My husband’s Ulcerative Colitis began when he was in the basic training for the army and contracted an pneumonia. They prescribed him antibiotics for 3 months and effectively killed all his gut bacteria and an overgrowth of bad bacteria occurred. 

Our hope is to restore the immune system and part of the process will be enemas to help with the detox that has to happen first. 

JulieBaker posted:
 
 The different enemas referenced are probably for a small volume of solution since the pouch is smaller than the original colon. 

I took the same volume for the J Pouch as I did for the Colon.  Keep in mind that when you are scoped with a J Pouch they push up into the ileum to peek around in there.  Therefore it is not just the J Pouch that needs to be cleansed out.  Volume is a non factor in all of this and when prepping for scopes I use the same Fleet enema bottle.

Therapeutic enemas and cleanses are a different story perhaps.  For scope prep enemas, there should be no difference.  You are not just cleaning out the J Pouch, you are also cleansing the ileum and if it isn't clear the exam will be incomplete as to the neoterminal ileum.

Last edited by CTBarrister

Julie,

There are a few things I am unclear about in regard to your husband’s proposed treatment. First, the notion of “detox” in reference to gut cleansing is generally thought of as pseudoscience at best, and this is when you have a colon. Without a colon, what would you be “detoxing” anyway? And, bring your own enema kit? What sort of treatment center is this? My primary concern is that your husband might be getting involved in treatment that is without evidence based data and/or ineffective. There are many of us who have struggled with chronic pouchitis, and we have tried many non-medical options. Usually, they waste our time and money. But, if your husband has success with  this, please come back and let us know.

I have heard of tap water enema rinses (typically before bed), but not for detox. This is just to facilitate complete pouch emptying. Some people find that it helps prevent bacterial overgrowth inthe pouch. As stated before, just use an empty Fleet enema container.

Most people hope to restore normal gut flora using oral probiotics. Failing that, fecal transplant has been used with varying success. But that is so far only approved to treat persistent C. difficile infection. 

Jan

Jan,

I figured I would elaborate. And I will make sure to post as we work to figure this all out. 

My husband never had any GI issues until he went to Basic Training with the Army and came down with pneumonia. He was given antibiotics for 3 months straight through the Army. Shortly after this (just a few months) he started to have the symptoms of UC. It got miserable enough that he eventually opted for the surgery to remove his entire large intestine. 

My husband had his 3-part surgery in 2008-09 and everything was good until about 2 years ago when he got sick was given antibiotics again. It wiped out everything he had going that was working. 

His doctors are through the VA and they really just believe that he will need to be on some sort of immune suppressant for the rest of his life, but I can't buy that because if that were the case then he wouldn't have been able to survive the first 7 years without any issues. 

I've studied canine GI tracts since 2015, it's part of my profession. In my work I've learned that when the GI is balanced then nearly all the problems go away. We know that 70-80% of the immune system is in the GI tract, so it makes sense that autoimmune issues will arise from a GI that is out of balance. 

I've also found in my work with canines that when they are given a blanket antibiotic to solve a GI issue, it works, but the system usually comes down with more issues 14 days post treatment because the balance was disrupted. I've moved to treating dogs naturally for these GI issues and I've had a lot of success. Basically the dogs are treated with herbs and oils that are known to fight bacteria, fungi, and viruses. In treatment it does take longer for a dog who has a bad gut to turn around as opposed to using antibiotics, such as metronidazole, however, when they make the turn for the better it has much more lasting effects. We've been able to fully reverse severe infections by using the combination of the herbs, oils, and then taking the dogs off of kibble (processed dog food) and putting them on a raw diet, effectively resetting their GI. 

The difficulty with my husband is that he's considerably older than the dogs and he has been on lots of medications before I met him, and his system is very much out of whack. We've been trying the herbs and oils, and they are helping, however, it isn't enough, we need to reset his GI and the immune system it brings. 

Through my research, the Gerson Therapy rapidly detoxifies the body through heavy nutrition, the problem is that releasing that many toxins into the body that rapidly (they are normally protected from the body by the body storing them in fat cells and surrounding them with mucus) places a heavy burden on the liver. The coffee enemas stimulate the liver to essentially spasm, allowing it to release many of the toxins it had filtered for disposal out of the body. This balance of detoxification and enemas to help the liver keep up is a key in that therapy. 

We are not sure if it will work because we aren't sure how the small intestine that the J-Pouch is made from will work in the same manner as the colon for these enemas. The Gerson Therapy does not accept patients with less than 30" of colon, they consider success for people in this category as "contraindicated." My belief is that the concept of the therapy will work, however the coffee enemas may not be as effective as they would be if he had a colon. So this means we may need to detoxify as a slower rate. 

I'm not sure how this will exactly be achieved, I think meat will actually be a key factor, my husband gets pretty sluggish if he doesn't eat red meat, it seems to be very important for his diet, and red meat is not on the therapy, so I believe the long digestion time associated with meat will be helpful in allowing his body to absorb more of the nutrition he takes in. 

It is a unique situation. Of course I wish I had met him before the surgery, but maybe I was supposed to meet him so I could help him now. 

I am not the best designer of nutritional recipes for humans, dogs maybe, but this facility is supposed to assist in the detoxification process, help him figure out how prepare meals and get a routine that will get him the nutrition he needs and help me understand how I can best help to keep his food organized at home. They have worked with people with J-Pouches and are comfortable adapting therapy to work with it. 

He could also stand to take a few weeks to just focus on himself. I also believe part of the problem is the "non medical" adrenal fatigue, which affects his cortisol levels, testosterone, and a few other things. We have a construction business and he's gone at 6 and home around 6 or 7 each night, I don't know how he does it on so little sleep, as his pouchitis has him up after about only 4 hours of sleep.

He has a self-less soul and a heart of gold, we just gotta figure this out for him. I know we will get there. 

Thanks for the detailed explanation. One more question. Are you saying that you have used coffee enemas successfully in dogs? 

Hopefully, you have done research on IBD to get a better understanding on the complexity of it all. Actually, it is not uncommon for broad spectrum antibiotics to be a trigger for UC, including antibiotic related C. difficile infections. For most of us, we were not sick until we were. Like being struck by lightening.  I do hope this treatment is successful for your husband. He is lucky to have such a devoted wife who works so hard to help him.

If not, don’t be too afraid of other treatments. I have been dealing with UC since I was 15, with decades of spontaneous remission, but eventual colectomy, j-pouch, and later chronic pouchitis. Currently, I am onRemicade infusions and in remission from the pouchitis for several years. Many of us have tried non medical treatments to get back on track. Some with better success than others. 

Jan

Have you tried any probiotics? One that many j-pouchers use or have used is VSL#3DS and there are studies including the following:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773918/

This study uses a smaller dose of VSL #3 where many of us have used the prescription strength VSL#3DS  where DS means double strength. 900 billion probiotics.  

There are other studies on it this was just the first I found when I searched for them on-line.

I was rotating 2 different antibiotics for a long time including about a year before my j-pouch failed. I am not a success story but there are many on here that it has helped. (My j-pouch failed, has been removed and I now have an ileostomy.)

The VSL #3DS is the only one that many insurances cover at this prescription strength. You need to take it hours away from the time the antibiotic is taken.  This is because it is good bacteria and antibiotics kill all bacteria. Therefore you need to take them apart from each other. The theory is to add back in good bacteria after antibiotics have killed both the bad and good gut bacteria.

Just thought I'd tell you about this for your consideration. If you do a search on here you will find threads of us discussing it and other probiotics. It would be wonderful if your husband could be seen at a Mayo Clinic or Cleveland Clinic.  There are wonderful j-pouch specialists there.  There's 3 Mayo Clinics and at least 2 Cleveland Clinics in the USA. I thought the VA referred patients to other specialists when they didn't have them working for the VA.  I don't know if this was just proposed or if the VA adopted the ability to refer.

Last edited by TE Marie

Jan, thanks, to clarify, no, we have not used coffee enemas on dogs. Because dogs don’t live as long, they rarely have the build up of toxins that humans seems to, so they detox merely through a raw food diet combined with the herbs and oils. 

If the coffee enemas won’t work for my husband, because they end up requiring a colon, then we will look to detox at a slower pace. 

I appreciate the support, he was on Remixade for a dose and had an allergic reaction. They moved to putting him on humira and after 3 doses it seemed to work, but he became a zombie for a day, then 2 days, then 6 days, and then the aggression started and so did the flares. My husband’s metabolism is extremely high, when he’s working full time he needs around 6000 calories a day. I believe he processes all these drugs entirely too quickly, which is probably why he’s been able to stay so healthy despite everything, but also why a natural treatment will probably work best. 

TE Marie,

Yes, we are familiar with VSL#3 it was prescribed through the VA. It was mixed results for him. It seemed to digest a lot of his food for him, but created quite a bit of gas, he was quite uncomfortable. It didn’t seem to help with pouchitis though.

The biggest difficulty I’ve found with probiotics, which just is what it is, is that probiotics are not designed to colonize the gut, they live as long as they are passing through your system and then they are gone. 

In order for bacteria to colonize it needs to be fed the right diet to keep it alive. Most manufactured probiotics are not reproducing, on purpose, so you have to keep buying them, if the drug company solves your problem, they stop making money off of you. 

The best way to colonize a gut is through feeding fermented foods and other food that has natural bacteria cultures, like yogurt, kefir, and sauerkraut (but not the sauerkraut at the store since it’s pasteurized). These food carry the cultures that are needed in the gut. 

The problem is that the gut—even in a bad, infected situation—is still in a sort of balance, just not a good one, so this balance has to be interrupted in order to create a “vacancy” for new, ideally good, bacteria to make a home there. 

One good example of this working is when someone is one a very sugary diet, there are many bad bacteria’s that survive and thrive on sugars. By cutting out the sugars these bacteria starve and create vacancy for new bacteria to move in. Another way is through herbs and oils, such as oregano, these harm the bad bacteria. And of course antibiotics. The problem with the antibiotics, as you mentioned, is that they kill it all and without a diet to support recolonizing with good bacteria, one is often susceptible to the bad bacteria taking root again, although after antibiotics there are many more vacancies. 

Again, my failure in understanding the more complex nutritional needs of humans is why we are trying to get into this facility, it’s 2-3 weeks, but should be the kick start we need for detox and nutrition.

@CTBarrister posted:

I have not heard of such a thing as a J Pouch enema kit.  I take a whole Fleet enema and have used that as my pouchoscopy prep every year for 26 years.  Nobody has ever said to me that something different should be used.

I have never heard of a pouchoscopy until a week ago. I’ve had my Jpouch 18 years. I’ve been constipated for a week. My family Dr told me to use a fleet or a drinkable fleet! He doesn’t know too much about Jpouch’s. So I was hesitant to do it. But the more I read I guess it’s ok? 26 years, I have hope! ☀️ Not sure how I got myself in this position, I’ve been doing pretty well all these years!

Hi Kathy,

You have waded into an old thread and an old post I made in 2018. It's now 2022 and my J pouch has turned 30 years old while the rest of me is now 59. So it's now over half of my life with a J Pouch.

The Fleet enemas tend to be something of an irritant to the pouch and in the last few years I emptied the saline solution and used warm water enemas instead. You are constipated so we have to distinguish between laxative effect and just cleansing the pouch. You may want to use the Fleet saline solution, which is a laxative, as a treatment of the constipation. The caveat is it may cause some mild irritation of the pouch. I am not familiar with "drinkable fleet" but there are myriad drinkable laxatives and I usually am told to drink Mag Citrate, 1 10 ounce bottle. This will result in about 2 hours of explosive watery bowel movements and totally cure your constipation and clean you out. It's got a horrible taste and needs to be chilled and chugged, the "C and C method." Just make sure you get the clear liquid and no dyes.

What concerns me is why you are getting constipated. Are you taking pain meds, Imodium or other bowel slowers? You should eliminate anything that's slowing down the bowels and hydrate, which you should be doing copiously if you take any laxative anyway.

Good luck with your scope.

Last edited by CTBarrister

One thing to pay attention to is whether this is actually constipation (i.e. hard stool) vs.some sort of a mechanical blockage, like a stricture vs. a partial bowel obstruction, such as from adhesions. I’d suggest paying attention to what the enema frees up to help figure this out. It might also be worth connecting with a knowledgeable gastroenterologist. Good luck!

@CTBarrister posted:

Hi Kathy,

You have waded into an old thread and an old post I made in 2018. It's now 2022 and my J pouch has turned 30 years old while the rest of me is now 59. So it's now over half of my life with a J Pouch.

The Fleet enemas tend to be something of an irritant to the pouch and in the last few years I emptied the saline solution and used warm water enemas instead. You are constipated so we have to distinguish between laxative effect and just cleansing the pouch. You may want to use the Fleet saline solution, which is a laxative, as a treatment of the constipation. The caveat is it may cause some mild irritation of the pouch. I am not familiar with "drinkable fleet" but there are myriad drinkable laxatives and I usually am told to drink Mag Citrate, 1 10 ounce bottle. This will result in about 2 hours of explosive watery bowel movements and totally cure your constipation and clean you out. It's got a horrible taste and needs to be chilled and chugged, the "C and C method." Just make sure you get the clear liquid and no dyes.

What concerns me is why you are getting constipated. Are you taking pain meds, Imodium or other bowel slowers? You should eliminate anything that's slowing down the bowels and hydrate, which you should be doing copiously if you take any laxative anyway.

Good luck with your scope.

Thank you for your response. I stopped taking all meds and vitamins. It’s been a week. I did try a fleet but not much happened. Im not eating a lot though either. I did get 2 appointments ( need to cancel 1 of them ) it’s a 6 hour trip to our daughters home and I’ll be there 3 weeks. Im going to try the warm water next.
Before all this happened I ate some pomegranate seeds from a fresh pomegranate. And I also ate a little bit of cheesecake and I’m lactose intolerant! So I kind of blame those two things but I can’t be sure! I mean I’ve been going on 18 years and doing pretty well except for pouchitis a couple times! I’m 67 years old or shall I say young! So wish me luck thank you for getting back to me. I really appreciate everybody on these post trying to help each other out! Enjoy your weekend I’ll keep you posted!

Kind Regards,

Kathy

@Scott F posted:

One thing to pay attention to is whether this is actually constipation (i.e. hard stool) vs.some sort of a mechanical blockage, like a stricture vs. a partial bowel obstruction, such as from adhesions. I’d suggest paying attention to what the enema frees up to help figure this out. It might also be worth connecting with a knowledgeable gastroenterologist. Good luck!

It wasn’t much, so you may be right! Unfortunately I don’t have a doctor appointment till the end of August! No one in my area even knows one thing about it. So that’s why I’m so reluctant and even go to the emergency room. My own family doctor to shakes his head but he’s called me every day this week to check on me. So he’s a good guy and he’s an internist he just doesn’t have experience with colectomy’s and J pouches. Thank you for getting back to me and your concern I really appreciate you!

Kind Regards,

Kathy

Kathy,

If a warm water enema doesn't dislodge the fecal logjam so to speak, I would try Mag Citrate but discuss with your doctor. It's a powerful laxative which will cause frequent, explosive water bowel movements, so I would not plan on going anywhere in the 3 hours after consumption and make sure you are near a toilet. You may have a partial blockage so I would talk with your PCP or GI if the warm water enema doesn't dislodge and empty you. Good luck.

Last edited by CTBarrister

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