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Luckyrabbit,

I just posted on another thread too...35+ yrs for my k pouch...pouch itself is fine...has its moments but as long as I treat it with love and respect its dietary requirements it is nice to me too...if on the otherhand I do a lot of nasty things to it like certain sports (jumping up and down makes it miserable...) or eat tons of diary and carbs it will take revenge on me.

For me diet is everything to my pouch.

One of the other things that helps is that I allow my pouch to completely empty out once a day...I do not eat from dinner time to the following lunch time or later (just drink water/juice/coffee or tea) until my pouch is running clear. Seems to keep the gas and all sorts of irritations at bay.

Sharon

Thank you all for the replies. I am relieved to hear people have had long term success with their pouches. I'm a 39 yo male, who used to play pro football. My JPouch was created in 2000(end of my football career). I have dealt with fissures and fistulas, chronic pain for 15 years,non stop pouchitis, severe anemia with iron deficiency,and more, and never truly recovered physically. I have powered through all of that for years and managed with diet, supplements and antibiotics. For the last year and a half I have experienced severe stricturing. Really critical and scary and painful. I have been hospitalized for stricturing/obstructions this year, and nearly gone back 2-3 times, only keeping myself out by days and weeks on clear liquid diet. I'm 6'5 and weigh 160 pounds. I battle between starving to stay out of the hospital and eating enough to function well. Out of desperation, I took Remicade  and 6MP this year after refusing it for 15 years. It failed. All the drugs but antibiotics have failed. (I have a strong interest in anti-Map therapy, but my strictures prohibit that option). I am at the end of my rope with the pain and constant battle, physically, mentally, and emotionally. I am ready to admit that my JPouch has failed. I have a 2 year old and a baby on the way, and my wife has suffered with this enough,as well. I am seeking immediate treatment at the Cleveland Clinic from a GI and surgeon. I think  my last option is an ileostomy, which I was hoping to delay until I turned 50, or until they could fix me with stem cells . I am not seeking sympathy, just answers and guidance.  I struggle and fight daily, but I know I am more blessed than billions of people on this planet. 

Cheers and good luck to all!

rob

Hi Rob,

You are litterally breaking my heart...I feel your pain.

Number one...I am so sorry...I hate it when your body destroys your life...I have lived my own version of it and understand perfectly.

Next...there are other opitons than going strait to an outside bag once you admit that your pouch has failed.

There are k pouches and BCIRs too. (they are very similar)

Both use the same sort of pouch (and can occasionally use your pre-existing pouch) but make a one-way anti-reflux valve with about 1 foot of your small intestine and then bring it up and out a tiny hole in your abdomen (a stoma). You cover it with a bandange or piece of gauze and you are done. You empty it out with a small catheter whenever needed.

No bag. 

For young people (and not so young) and those not ready to say 'uncle'  it is a good alternative to the end ileo...it could be a solution for you.

There are not a lot of surgeons who do them these days but if you look on the K pouch section of this site there is a list...find one near you and and see what they have to offer you...and ask questions. Post on the k pouch part of this site and ask us anything you want...or PM one of us...We will always answer you and give you the best advice that we are capable of.

You should not be living the way that you are, in fear and pain. Solutions exist.

Sharon

I'm 19 now and I had it for more than 15+ years now, my pouch has shown tremendous adaptation since then and even now it feels like it gets much better with diet and physical activity/exercise. I visit the toilet 2-3 times a day and have never been diagnosed with pouchitis. Or maybe I couldn't tell because when I get diarrhea my doc usually gives cipro and metrinadazole anyway. What is annoying is that I get frequent diarrhea, atleast 3 times per year and I live in India, which basically means that any food you eat outside is filled with red hot spice, although with time the anal irritation from spice and my endurance have gotten better, as I remember the times I cried in bathroom, not many years ago.

I wish that my pouch also lasts throughout my entire life and that it won't cause any future troubles regarding my new found passion of weight-lifting although the doc who operated upon me had no objections with lifting or protein blend whatsoever. 

Rob-

I'm sorry you're feeling like you're at the end of the line with your pouch. Strictures are very tough - nothing can work right if the passage isn't open. If the strictures are related to the pouch then they're easier to reach for dilation, but also (in a sense) "caused" by the pouch. OTOH if the strictures are elsewhere in your small intestine, pouch removal might not help at all. I don't think a K-pouch has the same tendency to stricture.

 

You may well have tried everything for pouchitis, but just in case, there are a few things you didn't mention: 1) high-dose VSL #3 (I take 4 DS packets/day), 2) combination antibiotics (I take both Cipro and Flagyl now), 3) very low carb or low FODMAPs diet (this is hard, but it really helps some people), 4) less common antibiotics (some people get great results from Xifaxan), 5) consultation with Bo Shen (I think I would do this is I were facing pouch failure). I've been *very* lucky so far with aggresssive pouchitis treatment.

 

Good luck to you. Each of us has lost important things, but for most of us the physical compromises aren't as public or profound as yours. I was certainly never a world-class athlete!

Last edited by Scott F

Rob, I can feel the pain and frustration you are experiencing with your pouch.  Cleveland Clinic  has an excellent reputation for dealing with j pouch problems and they also do k pouches there.  I am in full agreement with the posts of Sharon and Scott.  Although my situation was different than yours, I was also faced with the loss of my j pouch.  Since I was strongly opposed to having the bag, I extensively researched the k pouch and BCIR online.  The available web sites give lots of information on both procedures.  They should be very helpful in formulating questions when you meet with your doctors at CC.  I wish you the best with whatever you decide to do.

Bill

Luckily I never had pouchitis after 20 years and apart from fibrous foods I can eat soft well cooked veg. My only problem is that the op damaged my nerve plexus so that when the entrance to the pouch internally is loaded I get a severe itching sensation randomly over my body, worse at night when sleepy. I have tried every mortal therapy with no success. My Doctor prescribed pregabalin which one capsule slightly helps, two has severe side effects. Basically I am OK if I don't eat too much. I guess compared with poor Rob I am lucky. I am now 80 and have to be careful about leakage

How about 23 years and not doing "great" - because I have had pouchitis for 20 years and the symptoms are controllable with meds but the inflammation is not - but doing good enough to have worked 23 years as a full time trial attorney and never really missed any time from work except the usual sicks days here and there?  Does this count for anything luckyrabbit?

You guys who have had pouchitis so severely. I just wonder if there has been sufficient prevention? I have never had pouchitis but I have had a very sore bum from time to time if I lapse just a tiny bit from scrupulous hygiene measures. After wiping with toilet paper I follow up with moist baby wipes folding, wiping and refolding over and over until there is no trace of contamination. Then wash with a flannel and warm water and soap. Carefully dry on a disposable or washable towel. Then apply some Bethaniden - a cream for baby's bottom and use a ladies sanitary towel to prevent staining of my under clothes. Also I eat natural yoghurt and for those with intractable pouchitis I wonder if in addition to these hygiene measures  high potency live bacteria could be taken once or twice a day to suppress whatever evil bacteria is giving you grief. There are preparation of Lacto bacillus: Bifido bacterium  Acidophilus capsule formations that prevent destruction by stomach acid. There are diets to encourage healthy bacteria such as Miso and fermented vegetables, pickles etc.There is so much excellent advice to prevent antibiotics which over time just encourage resistance and even more aggressive strains.  I have had a J Pouch for 20 years with never any suggestion of pouchitis. Now I am getting older and in spite of regular exercise my muscles must be weakening because there is sometimes a leakage problem. Hope I am not stating the obvious, but sometimes the blindingly obvious can be a profound wisdom!

Not sure I understand the point about hygiene relating to pouchitis- I have never had any issues with a "sore bum" during my time with pouchitis, and don't need creams for my rear end.  The problem is chronic inflammation inside the pouch and you can't wipe down the inside of the pouch.  I did try enemas (various kinds, including tap water), and they did not help.  Most of them I can't hold long enough to derive any value out of them anyway.

 

Regarding probiotics and yogurt, I tried those and they didn't work.  I am a possible Crohn's Diagnosis and am scheduled to start Remicade soon.  That might get me off antibiotics - or not.

Last edited by CTBarrister

Sorry its not bethaniden, its bepanthen, a baby cream available in UK maybe in USA. While I'm at it, I thought that in a 'normal' small bowel,  excepting  Crohn's disease,  there is rarely or ever Ileitis or jejunitis. Why? Because there is a continuous flow into the colon. So the pouch is not protected from back flow or contamination and is more static, designed to be so.This will provide a greater chance for aberrant bacteria to thrive. So maybe its not a good idea to slow if further with preparations designed for a normal bowel with intermittent diarrhea? Such as codeine or imodium. Why not do the reverse and drink copious amounts of mineral water? 

Alkovitch,

 

That is correct that the ileum is not protected from backwash stool in the J pouch, and for that reason, I have inflammation in my lower ileum.  It wasn't noticed until a scope in 2007, about 15 years after I got the J pouch, and apparently developed over time.

 

Drinking a lot of water isn't going to stop the backwash of stool from the J Pouch, although it can't hurt in assisting transit out of the ileum.  Regarding medications that slow down bowel motility, the net effect of those drugs is to simply slow down the transit time of whatever fecal material exists in the tract.  I haven't found a net positive effect trying any of the things you mentioned.  The only thing that does work is antibiotics.  If I am off them for a week, I am in bad enough shape to be a candidate for the local hospital's emergency room.

I mention hygeine because whatever it is that causes pouchitis, the fact the people taking antibiotics such as metronidazole indicates that the infection may come from without rather than within. If you didn't have Crohn's before the take down it seems unlikely to develop it afterwards. Metronidazole (flagyl) as you know is normally used for vaginitis caused by flagellate organisms. You have to think 'Would this ever happen (flagellate organism infection) in a 'normal' small bowel.?' Of course not. So why with a Pouch? It must be introduced somehow. This is why I emphasize peri anal hygeine, including spraying the toilet seat with disinfectant too. It requires thought and logic. I am shure in your profession this is not lacking! By the way I was a practicing physician so have information as well as experience.

The more I hear, the more I realise that advice etc is pretty useless. I am really sorry you have had such a rough time. It is clear that some unpleasant organism has taken up residence and refuses to leave unless poisoned with antibiotics. I have heard that infusions of normal bowel organisms (fecal transplants) have been effective. have you heard of them?

There has been plenty of duscussion of fecal microbiota transplant (FMT) here. The best research (and some less formal tests) seem to suggest that it may be worthless in chronic pouchitis. While it's pretty clear that there's a close relationship between pouchitis and some sort of disupted fecal bacterial balance, and that high-dose probiotic bacteria (e.g. VSL #3 DS) can help prevent pouchitis, I'm beyond skeptical that better anal hygiene has anything to do with it.

Alkovitch-

 

My own treating gastrenterologists have been skeptical about fecal transplants, one calling it "nothing but a strong probiotic, and probiotics that we have tried in your case haven't worked."  Basically we have exhausted a number of treatment avenues and my inflammation has also progressed and gotten worse, even though the antibiotics effectively treats the symptoms. It is now believed that my best shot at a remission is with Remicade, and the biologics family of drugs.  This is on hold for a month or so because I am currently going for treatment for thyroid cancer (surgery in July, and radioactive iodine tomorrow).  The GI and I will start the Remicade treatment in late October.

I've had my pouch for two years now and feel like I'm just beginning to understand how to get along with it! It's not an effortless life. I need to be deliberate in what I eat and when I eat. I also give my pouch a rest, not eating between 4pm and 10am most days.

I had the chance to hear a doctor from NYU speak on gut issues...hearing him, then reading his newest book finally made sense out of my personal saga.that resulted in two surgeries and  finally sub total colectomy with j-pouch. If anyone is interested, the book is "Missing Microbes," by Martin J. Blaser, MD.  It's evidence based science. Amazon carries it. You might find yourself in his pages, like I did.

2 questions. With the pouch diverted to an ileostomy has the pouchitis stopped?

Secondly before the divert were you instructed with the need to observe extreme perianal hygiene after each evacuation to prevent perianal soreness and re-entry of antagonistic organisms?

 

I observed scrupulous per anal hygiene after each evacuation to remove every molecule of the highly caustic ileal fluid and have never had pouchitis in 20 years. I have theories why hygiene is important around the ph change at the boundary - but it is complex. 

Alan

"Not sure how one would get "re-entry" of microorganisms back inside, when the anatomy there really acts as an exit-only, naturally."

Every body consists in a large part of a seething mass of microorganisms in a dynamic and reciprocal relationship with each. The end of the anastomosis is a 'boundary' but not a total one. It only prevents major leakage, not minor or miniscule or micro exit of fluids and bacteria. At the the quantum level the whole body is in a holistic/hologram relationship. You see and think of your body on a macroscopic level whereas at lower levels there are no absolute  barriers. By cleaning and washing you maintain the natural ph of 7. If you don't organisms alien to the ileum but acceptable to skin can enter. This is all I can say. I have no proof. If proof is required speak to the 'experts' - the microbiologists and gastro enterologists whose skill and actual experience of making cultures of both side of the 'Barrier' can verify what I say. 

One of the theories about increased numbers OF inflammatory bowel disease is excessive hygiene that kills off natural flora, and over cleanliness of everything (food, etc.), leaving us susceptible to these conditions and the wrong kinds of bacteria, since the good gets killed off.

Not the sameexactly, but as a teen who played hockey, my hubby took many showers. Too many. He killed off too much skin flora and actually had excessive back acne take over. His dermatologist made him take no more than 2 showers a day, and he was actually not allowed to wash his hockey shirt for a time. Odd as it seems, it was a little funky, but once his natural flora came back, this excessive problem got better.
Last edited by rachelraven

Talking about noxious fluid burn...is this the same thing as unabsorbed bile? After my total colectomy, I had open oozing sores...worst butt burn imaginable. CR surgeon prescribed whelcol to absorb the bile and poof...things got better very quickly. I have to be very careful as the whelcol also slows motility...different nightmare.

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