BCIR one year annivesary- still battling pouchitis and severe iron def. anemia

That is not a normal side effect of a K pouch or BCIR...you shouldn't be anemic because of it...there is either an absorption problem due to the pouchitis, a bleed somewhere or you are have massive periods????

I have a couple of girlfriends who had the same problem (they don't have pouches)...they changed their iron supplement to something called Eurofer (from Costco?)...that made the difference for some reason...it absorbed better or something because their levels rose significantly.

As for the leakage, what kind of leakage? Stool or mucous or a mix? 

Should not be leaking at all...I get a about a tsp worth of stuff that traps in my valve and leaks out within the hour...I use those mini folded up kleenex or paper towel to cover the stoma and change as required. It is no biggie...

Happy to hear that the pain is gone...

Keep us posted

Sharon

Thank you for your reply Sharon ...No heavy periods.   //just mucous leaking from pouch but it saturates a thin maxi 3 times a day- it never reay slowed down the way they said it would//....they think maybe because of all the pouchitis I am anemic ..// & as hard as it all had been, it IS better than the bag...my bag used to leak all the time around the stoma....  

Pressing...

Mucous is not considered leakage...leakage is stool or gas seeping or pouring out of your pouch...that is a sign of something going wrong with the valve or the position of the pouch (slipped off of the wall, hernia...)

I don't find the mucous abnormal...I change my covering about every other time that I intubate. 

When you intubate it is like placing a straw into your mouth, it stimulates the production of saliva. The irritation of the tube rubbing the inside of the valve causes the production of more mucus...meaning the more you intubate the more you produce. 

Certain foods can also stimulate the production of mucus like milk products, spicy foods, salty foods...you can somewhat follow that production by keeping a food diary and charting the days when you have more or less discharge.

I use a double protection in order to stay 'dry'...I cut an extra large mini pad in half and stick it to the inside of my undies and cover the stoma with a folded up kleenex or paper towel. I change the kleenex as needed and the mini pad only if it is wet.

I wouldn't worry about that...it is normal.

As for the anemia, you should also try to increase your consumption of iron-rich foods, up your supplements (iron loves vitamin C so if you take your iron with citrus you absorb it better).

The pouchitis is probably a little responsible for the problem being that when you have pouchitis things go through your system faster and you don't have as much time to absorb certain elements (or calories).

Have you been put on probiotics? Take them at least 3 hrs after you take your antibiotics for your pouchitis.

Sharon

i had chronic pouchitis with the j pouch (now have a k) and also had chronic anemia.  yes, very debilitating.  one theory on the cause -- induced by inflammation, which is pouchitis.  sure enough, pouch gone, no more pouchitis and am completely free of anemia.  

am very fortunate that i haven't gotten pouchitis again.  one thing i do to prevent it is to stay away from simple carbs and absolutely no refined sugars.  another thing is irrigate the pouch every time i intubate.  often i will go through about a quart of water until the liquid runs very clear.  one of the stoma nurses said i stood a greater chance in getting pouchitis if bacteria accumulated in the pouch, so this is the way to flush it out.  not sure if this info helps you as not sure what you are doing now to arrest the pouchitis.  but at a minimum i can express my understanding and sympathy.  hope you get better!!  janet

Thank you Janet. I don't flush my pouch....do you use tap water? Ours smells a little like chlorine...was not sure if it might make MORE bacteria in my pouch of its not sterile water..guess not?What kind of diet do you follow- does it have a name? Is it gluten free amd sugar free? Did you follow that same diet with the j pouch, or just now that you have a k pouch? How long did you suffer from the anemia? How long did you keep your j pouch? Did they remove your rectal area and give you a "Barbie Butt"? Dr Rhenke in FL , to my surprise,  left mine in...he said in case i wanted other options in my future. ...it is inflamed too sometimes and burns....it is just my sphincter muscle with a small cuff....not sure if it dshould have stayed. ...

If you are afraid of using tap water (although I have been using it for 35+yrs and have even used lake water (not advisable but I had no choice), ocean water (on purpose) and just about every other type of water) you may wish to invest in a Brita and just filter your water...it removes most of the junk, gunk and chemicals and is so much cheaper than bottled water.

I irrigate my pouch daily or whenever needed...They do say that k pouches have fewer incidents of pouchitis than j pouches but I found that it was my diet more than the type of pouch that impacted the frequency of pouchitis. 

I had it quite often for the first 10 years and then altered the way that I eat...(I did not really remove any food groups for the most part but separated them by meal (carbs with carbs, proteins with proteins and veggies everywhere...Fruits are eaten on an empty stomach of 1/2hr before meals so that the digestion happens quickly). It turned things around for me...it does not mean that it will work for you just that I found relief that way.

I also cut down on most 'pre-packaged' foods limiting the amount of chemicals, salts and sugars that I consume (or at least I control them)...I figured that my guts were sufficiently compromised that I didn't need to make things any worse.

Still doing it since 1990...within reason...I have the occasional pizza, eat cake and go to restaurants but I choose my foods carefully...

I haven't had a real case of pouchitis for 20yrs...

Sharon

Regarding the BCIR - would you do it again? How long have you had it? Any problems getting the tube in? Any leaks? I have been lucky with pouchitis. Only couple of cases in 15 years. 21 days of Flagyl works for me.

My K-pouch leaks a small amount if I eat a big meal and wait too long between intubations. I am considering the BCIR or going back to Dr. Bauer in NYC who did my first surgery in 1976. He says it is about 80% success rate on revision surgery. ( He says valve surgery works best on the original (virgin) valve. There the results may be around 85-90 % success rate. 

Thanks for reading my post.

So interesting the above posts.

It has taken me years to learn about my diet with K Pouch.

I cannot tolerate fats in my diet. This did create the mucus problem mentioned above. This does not happen at all now. For years (after advice from alternative practitioners here I avoided any form of additives in food)

I avoid dairy etc. My pain is so much reduced. I believe I had pouchitis for many many years and just suffered as 40 years ago there was no information. In recent years I tried antibiotics which did work but they are not allowed to prescribe them here now.

My diet now is very good. Mostly rice, route veg but herbs and spices are ok for me. I do work very much on this and think before I eat.

My question now is the wheat influence on us. Most wheat creates foam in the K pouch for me.

Well I have been looking into the wheat question. Seems it can be a horror story.

I have always suffered brain fog. As there is a connection between the brain and the gut this is now all making sense. As I understand this now, wheat can damage

the small intesting. This can result in lack of ability to absorb and ability  to manage fats. Well this is true in my case.

Has anyone else found it necessary to ban wheat from their diet?

My general health seems to be good so GPs here have found nothing wrong.

All the usual checks ie blood pressure etc. have been good and no medication 

needed despite my age.

Interested to hear others comments.