How do you treat your pouchitis? any natural remedies?

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Edarmal111
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 4/2/2010 3:06 AM (GMT -6)   
I got my J-Pouch in 1983 after 15 years I started having pouchitis every six months or so, so severe that everytime I had to spend at least 10 days in the hospital...then doctors started treating me with antibiotics which was working without complications noe in the past two years I started having allergies and now I am looking for an alternative way, a natural one to control or prevent this pouchitis.
Since a pouchitis is a build up of bad bacteria in the pouch due to ineffective emptying it got to be a natural way that can do that...Somebody told me to try a natural an anti-parasite cleanse which sounds about right but then which one?
I need help....!!!!!It got a be a way out!! 

suebear
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Date Joined Feb 2006
Total Posts : 5690
   Posted 4/2/2010 7:14 AM (GMT -6)   
I don't believe pouchitis is caused by ineffective emptying but is considered a bacterial overgrowth. Have you tried modifying your diet to treat your pouchitis? Success has been reported by eliminating all sugars and white flours including fruit. There are also digestive enzymes you can try along with the diet. Have you been checked for Crohns? Many people with chronic pouchitis have Crohn's and not UC. Other than the above suggestions I can't think of anything natural to help you. Where do you live? There is a great jpouch group in Los Angeles and a couple of the members have chronic PI and have learned to manage it with diet.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Edarmal111
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 4/2/2010 9:05 AM (GMT -6)   
Thank you Sue; Yes I have already been checked for Crohns and thank God I'm OK on that side too...As I have read J-Pouch works "well" for a period of 10 to 15 years after that "the machine needs a tune up" which in my case I am in that frame.
Everytime that I get pouchitis I feel (you sense what's wrong with you) that the stools got stacked some how inside (I beleive is in the pouch) so then I get chills, fever, bloated, pain so at that time I get a 2o days antibiotic treatment which helps but now the body doesn't want them anymore...I tried succesfully accupunture and herbs for a while but then didn't work anymore...Enzimes...they make me run to the washroom, probiotics is part of my low fiber diet.

answers4me2
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Date Joined Dec 2008
Total Posts : 1321
   Posted 4/2/2010 7:34 PM (GMT -6)   
I have read many people with the bcir, internal ileostomy, take VSL#3, which is a probiotic, to prevent pouchitis, and a good percentage of them swear they have not had pouchitis since. Have you tried that?

broadwind
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 4/2/2010 11:31 PM (GMT -6)   
I have a j-pouch and my surgeon told me to have VSL#3 every day and that will help avoid pouchitis.
 


dinpedro
New Member


Date Joined Jul 2010
Total Posts : 1
   Posted 7/31/2010 12:44 PM (GMT -6)   
Aloe Vera helps me a lot. The juice is foul tasting, but it comes in pill forms.

honestwoman50
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Date Joined May 2009
Total Posts : 833
   Posted 7/31/2010 4:43 PM (GMT -6)   
Edarmal111,   Supplements of these beneficial bacterial are called "probiotics" and may include a wide variety of live bacterial strains. Have you tried the probiotics to combat the bad bacteria?
 
Italian researchers are reporting that high doses of probiotics (healthy bacteria) appear to be an effective therapy for maintaining remission in patients with chronic pouchitis. Other studies have shown that 5-aminosalicylates, steroids, immunomodulators, anti-TNF-alpha therapies, may also be effective in treating recurrent or chronic pouchitis.

Recently, there has been interest in the use of probiotics to treat pouchitis. Research has shown that certain bacteria in the bowel may promote inflammation while others may have a more protective role. Probiotics are an attempt to reintroduce protective bacteria into the bowel. Some probiotics may be available through health food stores or a pharmacy, but as they are not yet regulated. Probiotics will vary in their quality and in the viability of the bacteria and positive outcomes cannot be guaranteed.
 
Have you had your pouch biopsied because from what I had read that will give you some clues...  Just some thoughts and not a doc...just a fellow poster on here...That is something that I do not want to ever get.
 
So keep looking for answers and my prayers are with you.
 
Leslie....welcome to our site which is our world...everyone here is wonderful....
 
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 7/31/2010 5:05 PM (GMT -6)   
Unless your original diagnosis was UC, chances are very slim that you can get chronic pouchitis.

It is believed that probiotics can help in warding off pouchitis but in the case where the situation is chronic, right now nothing but diet or antibiotics can keep it manageable. More and more patients who are diagnosed with chronic pouchitis are being diagnosed with Crohn's meaning that there diagnosis was wrong to begin with or Crohn's manifested after surgery, and yes, sometime years after surgery.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

TLT43
New Member


Date Joined Oct 2010
Total Posts : 1
   Posted 10/20/2010 1:19 PM (GMT -6)   
Well, I used to have the j-pouch and now have the BCIR. I too have had chronic pouchitis and have been retested for Crohns. Thanksfully it's not Crohns. I have come to realize after almost 11 years that sugar is the enemy which seems to cause my issues. I can't eat sugary foods such as candy, cakes, etc...for several days in a row. However, the worst culprit seems to be alcohol. One beer seems to be okay but if I have another beer the following day, I'm asking for trouble. I barely drink wine anymore because it makes me feel so bad and dehydrated. So, I go off all sugar and refined carbs, drink tons of water and soothing teas and I do seem to be better quickly. Sometimes it does get the better of me though when I'm not being disciplined enough and the fevers start, loss of appetite, painful gas, bloating, etc...and I'll sometimes need antibiotics and/or hospitalization. My fevers get quite high though. I do find VSL-3 to be helpful as well. Again, I just need to be disciplined about using it as I don't like the flavor and need to put it in something to mask that. I recently started seeing a new surgeon when I needed a hysterectomy and therefore needed a bowel doc in the room to protect the pouch. He said to try irrigation of the pouch with plain meat tenderizer. I know it sounds weird, but it's really just a natural herb. He has a patient who swears by it and thinks that it helps break down food that may be hanging out in the pouch. I've tried it and i do think it works. I hope some of this helps. Oh, I also know someone who swears by regular vitamin D supplements. Not too much as that would be dangerous. Because we have absorbtion issues, we're most likely difficient in things like vitamin D and B-12. Good luck!!

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 10/20/2010 2:37 PM (GMT -6)   
TLT43
  Hello, so how do you like BCIR?  That is the one you only have to insert a tube and only empty one time in 24 hrs???
 
Leslie

lucy1061
New Member


Date Joined Oct 2010
Total Posts : 2
   Posted 10/23/2010 4:25 PM (GMT -6)   
Hi, Just found this site because I was searching for natural remedies for pouchitis. I've had my J-pouch since 1998, and have had probably two to three bouts of pouchitis a year until this year. Since August 2010 I've had three episodes. Treated two with antibiotics, but a week after I finish the cycle, it comes back. Very frustrated. Someone posted that irrigation of the pouch with a meat tenderizer works--how exactly do you do that?

GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 1/9/2011 2:45 PM (GMT -6)   
I had my J-pouch surgery about 2 years ago and had chronic pouchitis ever since. I was taking a 10 day course of Cipro every 2 months religiously only to have it return a month or so later. Then my aunt gave me some cheap Acuflora probiotics pills to try which I took twice a day which helped calm it after 2 to 3 weeks initially of worsening symptoms. Once I was past that then things got better. I also discovered reading articles online that not emptying completely (leading to increased bacteria) is another theory to pouchitis, so I went online and bought a cheap bidet (Royal Fresh) on sale for around $40 that fits over any standard toilet. The non-heated water was cold for like the first 3 days and then I guess your get use to it because now it feels a lot warmer. Beats the expensive $200 - $1000+ ones with heaters etc. that could break, plus running electric next to my toilet wasn't practical. Because you can use it to "clean you out", now I only use one roll of toilet paper (to dry off) per week vs going through a roll every day. I figured if did nothing else, it would at least save me on buying toilet paper all the time and would pay for itself fairly quickly. I installed it a month ago, used legos to make a 1/4" thick spacer around the toilet seat bolts so my existing toilet seat would fit over it, and man what a difference. I had to use Calmoseptine constantly due to irritation from the frequent BMs and now everything is clean and the pouch feels more empty. My BMs have reduced significantly, especially at night. I believe I have cured or diminished my pouchitis and number of BMs but only time will tell. Hope this helps anyone else going through this same situation.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 1/9/2011 9:38 PM (GMT -6)   
GISGuy31
  Wow, sorry to hear that.  Legos now that inventive.  I do not have a appliance I was re-connected.  So it scares me that if my next surgery goes bad then I will end up with one.  But it seems as though many of you have lots of problems with them too.   Well we will all pray for you and hope eveything works out ok..
 
Blessings :  Leslie

jmhis34
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/17/2011 2:35 PM (GMT -6)   
Ed
I was in a study group that attempted the amino acid Glutamine to treat the infection. They had some success.
Best of luck
Jim

susans53
Regular Member


Date Joined Jun 2010
Total Posts : 318
   Posted 1/17/2011 6:38 PM (GMT -6)   
I have dealth with chronic Pouchitis for 9 years with the last bout so bad that I ended up in the hosptial and on remicade. No, I do not have Chrons-all tests have ruled that out. I also do not have a rectal cuff. In the past I have done very well on Pentassa. When that stoped working I used xifacan. When that stopped working I used Pentassa, xifacan and canassa and sometimes cortenema all at once. The remi did get me back into remission but I had a horrible reaction to it. That was last April but have now been in remission with canassa, 2-4 packets of VSL#3D, every so often cortenema, fish oil, tumeric, and manuka honey. I'm thinking of adding L-gutamine. I also modified my diet to more raw/plant base and cut out a lot of sugar, bread and milk products. Also, working with my doctor to up my vit D to around 60. They did a study where they found more vit D=less inflamation.  Very fustrating since you have this surgery to get off some of these drugs.
UC 1996
5 asa, predisone, 6 mp
X-mas present- Dec 26, 2000, Emergency j-pouch surgery
Multiple complications, J-pouch redo- July 3,  2001.
Take down-Jan 3,  2002
Chronic pouchitis: cipro, pentassa, xifican, cortioam, canassa, leviguin, lexapro, vit D, fish oil, probiotics, lot's of other vit's
Gall bladder out-Oct 1997
Latest flare April 27 2010 Hosptial for 1 week-remciade
Possible CD, Possible pouch removal-anxiety-can you blame me?
Adhesions

Post Edited (susans53) : 1/17/2011 5:43:01 PM (GMT-7)


pmarq73
New Member


Date Joined Jul 2011
Total Posts : 3
   Posted 10/3/2012 12:00 AM (GMT -6)   
Hi everybody!

I'm entering my 12th year with a j-pouch and have had chronic pouchitis for about 10 of those years. I've been able to treat it with low doses of tetracycline and the occasional 'nuclear' treatment of Flagyl or Cipro.

Of course, now Tetracycline is gone, everywhere, and we're looking for alternatives. He's got me on doxycycline as a trial, to see if a related AB would work as well as Tet. so far it's not looking good.

What's really interesting is that I had a shoulder ache and took some advil for it (with food, of course), and my pouchitis subsided for about 8 hours. No pains, no gas, no 'urgency', and the stools were more, well, processed. I asked my MD about it and he warned me that ibuprofen can cause diarrhea in people, which is funny because it caused the opposite for me.

I take advil once or twice a day now with an immodium, and things are stabilizing. I just feel like this is pushing the problem down the road, with more dire consequences when it hits the end of this trail. So I'm looking for alternatives. I've been told by others that Keflex and Augmentin can help pouchitis, and I'm looking into that. I'm also looking for natural antibiotics such as garlic and raw honey.

I like some of what I'm reading above re: aloe pills, tons of water and soothing teas. I've gotten rid of almost all sugar and refined carbs in my diet, no wheat, but still problems. The MD says he'll prescribe me Flagyl long term, or steroids, if we can't find a healthier substitute. No thanks!

Anyhow, it's great to read what everyone is saying. Sue, do you know of a group in the San Jose CA area? I've looking around and can't seem to find much of anything.

Thanks everyone, and Keep on Keepin' on!
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