Pouchitis BCIR

[Betsy1472]

I just had the BCIR procedure done in January and love it having gone from an Ileostomy. However, since post-op week 3 I have had recurring Pouchitis that I take Cipro for. I've been trying to eat a low carb diet as well as barely any fruits and vegetables. I only get results from the meds but once I stop taking them it comes back a couple of days later. My doc said this is common with a new pouch. Anyone else experience this pattern and will it ever clear up?!

[bcirray]

Betsy;

I sent you a PM, please read it.

Your DR. is absolutely right in that the "pouchitis" will ease after several months. The pouch, remember, is being trained to do something that it wasn't intended to do (store waste). The stretching of the pouch is not something I believe the small intestine "likes" either and therefore the resulting pain. I have had the BCIR for 11 years now after 30 years with ileostomy. Life couldn't be better. Give the pouch time to heal and accomadate it's new role. Also keep track of foods that seem to irratate and avoid them till sometime in the future, then re-introduce them gradually and with low amounts. Hope this helps.

Ray

[Marcel]

I have a Kock Pouch. I have had it for over ten years. before that I had a ileostomy for 10 years. I am now 52. I have had problems with leakage that may or may not be due to "pouchitis". I know that by this time I should be a pro. I am not. I think over time I have probably wandered off from what is a proper diet to maintain a consistency that does not become so watery. I have read on different threads that others have had this issue for various reasons. I live alone and have no support in my condition. I do have an appointment with my surgeon in the next few weeks. At one point he said that we needed to go in surgically and redo the pouch and then on the follow up he said I did not. He is very busy and I understand that he can not answer all my questions but I have found myself overwhelmed with anxiety. I think maybe It is just best if I start by asking if others that have had a BCIR or Kock pouch have had this issue and what foods or "other" they felt was best. Thanks for reading. I will check back. I currently feel like if I do not run to the bathroom in time that I am having to do more laundry and when I do get there in time that there is not always that much that comes out. I apologize if this is somewhat vague but I am as I said overwhelmed and many times after hours of this just break down in tears and feel it is all hopeless. Deep down I believe that I can get back to a good point. It is just hard to know where to start.

[bcirray]

Marcel;

Please read my e_mail to you under the heading of BCIR problems.

Ray

[Marcel]

Marcel;

Please read my e_mail to you under the heading of BCIR problems.

Ray

Thanks, I am on the west coast and lucky to have the little insurance I have. I am hoping that when I see the Surgeon ( he is a specialist in Kock Pouch and other Colo rectal surgical procedures) I am hoping there is some productive time spent. I have lost many years and I am sure others have as well. Today I am doing pretty good. It does make me wonder still about the diet or the possibility of the pouchitis. I am thinking that maybe it is just time to have the valve redone. But I truly would not want to go through all that only to find it was something in my lifestyle that is causing these problems. I wish they could look at that part and see if the nipple or valve is not correct. I mean, if someone hear went out and just did fluids would the pouch hold without any variance? I know that when My surgeon was alive and I asked him about air escaping he said it was not so bad because it relieved some pressure. I think that is ok as long as you are still continent to the point you are not running like I was to the toilet every few moments. Thanks to any and all that read. Please post if you have any experiences like this or ideas. I promise to update after my appointment next week and sooner if there is any responses.

[susan f]

I had chronic pouchits in a j-pouch for 15 years. I don't know that diet ever made a difference for me. Time did not make it go away. I was on Cipro and Flagyl permanently and started getting abscesses and fistulas from the pouchitis. I was tested for Crohn's Disease repeatedly (it wasn't Crohn's Disease). Some people seem to have gotten relief by using Peptobismal or taking strains of various "good" bacteria. No mater if your pouch is a J-pouch, S-pouch, Kock pouch or BCIR, the pouchitis is pretty much the same.

You may not have chronic pouchitis, it might just be an acute situation with you that will resolve in time. I certainly hope so. Mayo Clinic has a good overview of it. http://www.mayoclinic.org/pouchitis/treatment.html

I finally had the j-pouch removed and a permanent ileostomy and have had no "itis" issues since then.

[Lynne]

Betsy,

It sounds like there is a problem with the valve. I have had my koch pouch since 1990 and have never had the problems you are describing. have you seen the surgeon yet ?

Lynne

[byk]

Ive had the Koch prodecure since 1978 and its been great but I use the
Torbot Medena Continent Catheters, Non Sterile
Torbot: ME8730 30 fr 12"

They are wicked expensive does anyone know of a cheaper place to buy these???

[bcirray]

byk;

That's as cheap as they get. But look at it this way: $8.00 per Cath divided by 90 days divided by 4 times a day of use = $0.02 per intubation. Also several insurances will cover some costs of the Cath under Durable Medical Supples.

Ray

[Vinnie]

Is there anyone aware of any new 30 French Medina catheter or any other catheters that have larger holes to speed up the flow during intubation?

[sarahjw]

Hi my mum has had a kock pouch for 30 years which was not done correctly and she is now to ill with other problems to correct the kock pouch. She doesn't know of anyone who has the same problem and feels really alone with her problems is there anyone out there that could have a chat to her as she feels like she is suffering alone

[Lynne]

Sarah,

If you will message me with her contact info, I will be glad to speak with her.

Lynne