Bowel movements

I have this problem as well. I think it come with the territory. I was talking to my pharmacist and he recommended a gel capsule...this one is generic...across the counter. It is by American Fare. It is in a small white bottle, and it says Ultra Gas Relief. I take at least one in the mornings, two if I am having real problems. It really helps. He also told me to make sure I had fiber in my diet. Over the years, I have learned which foods really trigger the problem. If it is something I really get to craving, I schedule it! That way I can satisfy my craving and deal with the issue. The Imodium extra with gas contol really works when you have a really bad episode. I don't know if it will help you or not, but it helps me.

Thanks for the info Pat.

I sent an email to the uro who did my neobladder to double check with him. In the meantime, I researched my type of pouch and found that they typically use 40cm (15.7 inches) of the small intestine but it didn't say what part they used.

Since the surgeon who took care of me here knew enough about it (and he had also worked my uro surgeon years back) he's the one that told me that they took the section out of the middle. Figured he'd know since they were doing so many xrays while waiting for the intestinal blockage to clear.

I have a CT, chest xray and blood panel set up for early June. I believe the plan is every six months. My regular doc has me do one every year anyway because I'm on simvastatin for cholestoral. I'll make sure they do a complete CBC each time to keep an eye on it. I think there is a potential impact on creatin levels as well but that's in the CBC also.

As to your comments about the forum, I feel for you. This forum, including you and all of the others that post, has been tremendous for me. I was lucky enough to find it with a google search (but I think it was Webcafe forum then) back in 2006 when I had my first bout with CIS.

Told my regular uro about it and my uro from the cancer center so they can tell folks about it. There are a few other sites, but none like this one. One site I found was posts related to people with cancer mixed in with pets with cancer. Others just don't have the activity level of users to keep it relevent and helpful. Who wants to post and wait a couple of weeks to hear any answers?

Thanks again,
Mike

Yes to answer your question...the name of the Pouch indicates what part of the intestines they used. Good idea not to use the terminal ileum but that unfortunately came about after mine was formed and actually my Bl2 ran out in about 7 months ..much faster than the 5 yrs they swore i had stored in my Liver. As for the calcium......if you are getting regular blood panels Ca will be one of the things they measure with a CBC ..i don't know what your follow up is..but mine was every 6 months with a blood work up and CT scan and Chest x-ray and a Bl2 assay..they won't routinely run those unless you ask them to.(the Bl2 that is) Even though i'm past the 6 yr mark i still have blood work done every 6 months and a chest x-ray once a yr. Ct's are finished unless something untoward happens.
Even with all my research before my cystectomy i was pretty stupid as far as knowing what part of my intestine would be dissected and silly me I should have done the research. There was only so much i could absorb at the time as i was reading every paper whether it pertained to me or not and regularly shut down in tears as i had few to bounce off of. The forum was not up and running at that time. I'm forever grateful to Wendy Sheridan and Karen Greene (on the board here) who took my hand and calmed my fears.
I can now look at it dispassionately and try to sort out for others that are where i was 6 yrs ago.
Pat

I thought they didn't use the terminal ileum anymore because to the B12 absorption.

I did ask the surgeon (at my local hospital) I saw when I had an intestinal blockage about where the section was taken from and he said that my uro surgeon took a segment from right around the middle of the small intestine. He indicated that was supposed to eliminate most of the absorption issues and definately the B12 issue.

I'm not sure if the type of pouch indicates only the way they form it or if it also includes the segment of intestine that they use to make it.

Mine is the VIP (Vescica Ileale Padovana) type of pouch, not to be confused with Very Important Person.

Does anyone know if the pouch type indicates where the segement is from?
Also, should we all be taking calcium due to decreased calcium absorption from intestinal resection?

Mike

Complicated issue...sometimes the surgeon takes too much.....
The liver synthesizes and conjugates bile salts that are necessary for proper fat digestion and for the uptake of vitamins A and D. After fat stimulates their release into the duodenum, bile salts are actively reabsorbed by the distal ileum and returned to the liver by the enterohepatic circulation to be used again. After ileal resection, length-dependent alterations in bile metabolism can lead to a multitude of intestinal events that may result in diarrhea. Even though considerable amounts of bile salts are lost in the colon, the liver can synthesize and maintain the salt pool after resection of up to 100 cm of ileum. If ileal resection is greater than 100 cm, hepatic bile salt synthesis cannot match the losses. In this case, micelle formation in the jejunum decreases, and fat malabsorption leads to steatorrhea (fecal fat of more than 20 g per day) and diarrhea. Hydroxylated fatty acids directly decrease colonic absorptive capacity, cause active secretion of electrolytes and water, and form soaps, which are cathartic.[48]


Vitamin B12 is excreted exclusively into the bile. It is highly conserved by active uptake at the terminal ileum and is returned to the liver by the enterohepatic circulation. Body stores of vitamin B12 may last three to six years in complete malabsorption and six to 30 years in partial malabsorption.[48] Loss of the distal ileum can impair vitamin B12 absorption. A loss of 50 cm of terminal ileum appears to be the critical margin for sufficient vitamin B12 absorption. Substitution of vitamin B12 should be prescribed to patients who lose more than 50 cm of terminal ileum beginning several years after surgery.


Following removal of the ileocecal valve, the absorptive processes in some patients may be affected due to the development of high concentrations of bacteria in the ileum. Severe diarrhea may occur as a result of fat malabsorption or irritation of unreabsorbed bile salts on the colonic mucosa.[38] Diarrhea also may occur when major portions of the large bowel are removed. In this case, a significant amount bicarbonate can be found in the fecal fluid, since alkaline ileal contents drain into a shortened large bowel segment, which may result in acidosis and dehydration

But lets just hope its a situation you can resolve with diet.
Here's a good article from Moffitt
www.moffitt.org/moffittapps/ccj//v3n6/a4.html
Pat

Thanks Mike and Rick,

A log is probably a good idea(if I can stay on top of it). I know certain foods will aggravate the condition, Chocolate for instance is one of the top culprits in my experience. Exercise is definitely good advice too. I am quite active generally hiking mostly every other day, and when I stop the issue becomes worse. My condition became so bad recently that my Doc prescribed steroids which I tried, but unfortunately had absolutely no effect whatsoever. He then prescribed a medication the name of which escapes me(something like esquarn or similar) which worked while taking, but as soon as I stopped the issue reappeared.

I think the log is the way to go and will give it a try.

Thanks again for the advice.