BCIR + pouchitis

For some reason k pouches and BCIRs encounter less problems with pouchitis than normal pouches (usually)...It has to do with its anatomy...our pouches are meant to hold liquidy content and we do not use thickeners or any othe products to keep things bulked up...we need to keep our contents liquid and we tend to empty more completely that way so there is less residual matter and less chance for things to simmer and fester in there...therefore less bacteria.

Or at least that is the theory.

I know that since I have been taking cycles or probiotics and keeping a diet that is somewhat low in carbs my pouch is happier.

I think that it if pouchitis is your "only" concern than this could be a viable solution.

Sharon

sharon

thanks so much for your response.  i have read your posts and respect both your knowledge of pouch/gi problems and your willingness to share that knowledge.

am on the run and will write back later.  

you mention reducing carbs.  are you on the lowFODMAP diet?  thanks, jan

JLH

I do not do any specific diet (although maybe I should) but follow both the seasons (eating mostly only what is in season and at its peak of ripeness ex: no strawberries or cherries in the winter or watermelon in October)...that goes for meats too. Veal and lamb in the spring and other meats in the summer or fall. Fish has seasons too here so I buy from a farmer's market... I only buy fresh things that I freeze myself. It allows me to have some modicum of control over the amount of chemical aditives in my food. No prepared foods either (if you do not count peanut butter, chocolat or ice cream)...

I cook a lot too so that gives me a huge amount of control over salt, sugar and oil intake...

As for the rest? I tend towards a very low carb intake most of the time but find myself falling into old, bad habits of easy foods like rice, whole grain breads and pasta when my hubby is not around (if I don't have to cook for him and the family then I just don't really cook but eat easy stuff = not pouch friendly).

The truth is that my body has always loved a high protein/low carb diet and my pouch does best that way ...if I also cut out the diary (NO, not ice cream but most of the rest) then my pouch practically purrrs with joy!

I also eat for my mood and health...the better my tummy the better my diet but if I am feeling pouchitisy then I tend towards carbs and comfort foods.

You will learn what works best for you and in what circumstances you can or cannot eat certain foods (I have a special airplane diet or when I need to be away from home for long periods of time and do not know what type of washrooms I will encounter...)

Sharon

saw my regular GI doc yesterday and he expressed quite a few reasons for me not to have the k-pouch, but instead to have the ileostomy.  i'm still going to see the k-pouch doc in nyc in mid-sept to get his opinion.  then i'll decide.  posted an academic article about k-pouch's relevance.  found it helpful, especially that: "Weight gain is the greatest patient- controlled enemy of the CI valve..." failure.  "We have found that the risk of pouch failure increases nearly 2.5 times for every 5-unit increase in body mass index."  jlh

Really!

I have never heard those statistics...I know that massive weight gain (over 50lbs) can be a real problem for valve length...that seems very logical to me but 10-20lbs is about average considering how sick most of us are pre-op and how much better we do once the pouch is functional.

I was under 100lbs pre pouch and am now close to 50lbs heavier (35yrs later)...totally undernourished pre-op and needed at least the extra 25...there were no warnings other than to not suddenly gain gobs of weight.

I would trust a k pouch surgeon to give you advice on a k pouch...not a G.I....they are not surgeons...unless you  have a very specific pathology that would be counter indicated in any pouch surgery.

Good luck...no matter how hard the voyage is I have always personally felt that my k pouch was worth it.

Sharon

I would rely on the recommendations of a CR surgeon who is knowledgeable in k pouches and hopefully has done a number of them.  While I cannot attest to the qualifications of k pouch surgeons in NYC, it is my understanding that some of the best ones are at the Cleveland Clinic.  Having a consult there might be a wise choice, particularly if there are factors in your condition that might make a k pouch problematic.  When high grade dysplasia and the risk of cancer made it necessary to have my j pouch removed (I had a second opinion from Mayo Clinic), I strongly did not want an ileostomy with its associated quality of life issues.  I went with a BCIR, which has the same advantages as the k pouch and my quality of life is excellent.  There is a lot of information available online for both procedures.  By the way, I lost 40 pounds after my surgery and gained about 20 back (and now I am at a healthy weight).  The change in weight did not have any effect on my valve.

In the end, the decision on which surgery to have is a personal one.  There are no “right” answers except what works best for you.  If you go with the k pouch, you could always convert to an ileostomy if the pouch did not work out.  Also, if you went with the ileostomy, it could later be changed to a k pouch or BCIR.  I wish you the best with whatever you decide to do.

Bill

I would think that if you were thin and gained a lot of weight after continent ileostomy surgery (not uncommon if you were malnourished beforehand), that would put the most strain on the valve. Keep in mind that the quote above is regarding body mass index (BMI), not pounds or kilos. A 5 unit increase in BMI is significant. On the other hand, significant weight gain also affects your ileostomy and how well an appliance will fit.

No option is perfect. You just have to choise the best fit for you.

Jan

Thanks all for your responses.  Some clarifications and a question.

First off I shouldn't have referred to my GI doc as regular--he is head of the Crohns and UC Clinic at major Boston hospital and is very knowledgable  and respected.  I pointed out to him that he sees patients with major complications, not the K-pouchers without significant problems.  I thought the article was helpful in flushing out the problems, and found it reflective of what info I have gleaned from this site.  One problem is significant--that the K-pouch will use up more of the small intestine and if it fails I am left with even a smaller length for the bag option.  That has complications with nutriment absorption and some amount of functioning of the ileostomy.  I do need to weigh that factor.

The article refers to BM not pounds, as Jan points out.  For my case, female at 117 pounds, an increase of 5 BM = 30#. 

I've already had a second opinion from CRS in Boston, who thinks I can manage the potential complications.  She recommended me to the NYC doctor.  He is on this site's list of docs and is well-known as one of the top docs for this surgery.  Yes, I know about CC, but NYC will probably be just fine and I have friends there and a relative on staff of the hospital.

I am interested in knowing if people think the low FODMAP diet is beneficial for the functioning of the K-pouch.  Obviously if you don't suffer from bacterial overgrowth it is far less of an issue.  But if one does, FODMAP foods can cause nasty stomach aches, which coupled with scar tissue lead to blockages--at least in my case.

Thanks all, jan

Hi Jan,

A few word of clarification if I may.

You do not need to have your J pouch removed to create a k pouch.

If it is not damaged in any significant way they can reuse it and create the k pouch and valve without cutting more than 30-50cms of small bowel.

The valve takes 30cms. 

What they do is remove it, cut 30cms up on the afferent limb (the part of the small intestine leading into the pouch), flip the pouch over and reattache it to the incoming intestine.

That way you have no risk of suffering from short bowel syndrome. My k pouch surgeon has had to do that to me twice...and he says that I still have enough bowel to do it again without any adverse effects.

They also do not need to (God forbid) remove the k pouch if for any reason you need a bag. They just 'exvaginate' (pop out) the valve and hook into a bag...so short bowel is not an issue then either unless the pouch is compromised for some reason (ulcers, disease...) and they need to remove it.

According to my surgeon short bowel is not as frequent or common as patients fear.

Sharon

sharon

in your next life you will be a very compassionate CR surgeon!

thanks for the input.  considering the pouchitis problem i would think they would want to switch it out.  will find out more in ten days.  

i have read over most of your posts and noticed that you had problems--say the pouch detaching--as a result of physical activity.  this too is a concern as i am very active--downhill ski and sail are probably my most robust sports with unpredictable twists and turns.

so all this info is helpful as i make a list of questions for the surgeon.  thanks so much, jan

Thanks Jan,

I would dream about becoming a doctor/surgeon when I was young but I was way too sick to make it through medical school...(Dr Cohen, my pouch surgeon said the same thing and made me cry). I work through my frustrations by helping others on this site...not the same but it helps when you help others...

Ok, first off...I am Not a good reference on post op/post k pouch complications. 

I have a genetic disease  (Ehlers-Danlos syndrom) that prevents my body from forming the connective tissue necessary for healing...basically I do not make the glue...So stiches have to stay in for weeks or months before I am healed and even then things do not heal properly...so when my internal sutures re-absorb (around 6-8 weeks) things fall apart.

They did not diagnose the disease until I was 40 so my first surgeries always required constant re-dos...no one knew why I kept falling apart and no one asked why...They just kept doing the same thing over and over...now they use permanent sutures, reinforce me with mesh and clips or staples and pray that things stay attached. 

You would not suffer from the same complications...so don't let my case scare you.

The best thing that you could do is consult a k pouch surgeon and ask him/her all of your questions...And move forward from there.

As for the pouchitis...not necessarily...again a k pouch functions differently than a j pouch and often suffers less from pouchitis...something to do with the way our stool is...you need yours to stay thick and use thickeners so it can macerate and build bacteria...ours stays liquid and really can be totally cleared out every time...less bacterial build-up thus less chance for pouchitis.

Again, a good k pouch surgeon will tell you all...

Wow...downhill skiing...that is fantastic...once you are healed you can go right back to it!

Sharon