Hi all - I've only posted a couple of times, but have been lurking on these boards since my first (of three) surgeries in Sep 2006. My third surgery is scheduled for July 11th - yea!

I have a big list of questions for my doctor (Fazio); most of which I know the answers to from reading these boards, but I want to hear what his answers/recommendations are.

Following is the list; can anyone think of anything else I should be asking? If anyone wants to provide their answers to any of these, that would be cool too.

1) Lomotil/Immodium/Metamucil wafers - when to start, recommended starting dosage, recommended time to take
2) Probiotics - recommended? If so, when to start and dosage
3) Pouchitis/Cuffitis - what are the symptoms, how common, chance of becoming chronic
4) Butt Burn - what causes it (why do you get it with j-pouch and not colon), remedies
5) Fistulas/Fissures - what are they, what causes them, how common
6) Leakage - still just mucous/blood, or also stool? How long will it last?
7) Closure of stoma site - leave open or stitch/staple closed
8) Chance of pouch failure?
9) What about sports and exercise? Anything off-limits?
10) Scar exposure to sun - need to take extra precaution?
11) Food - anything permanently off-limits?

I am having takedown on the 16th (a few days after you) and I just wanted to say "thank you" for putting this list together. I am printing it off for my pre-surgery appointment.

I really have nothing to add, except to tell you that I pre-ordered Calmoseptine (for potential BB) based on the advice of Janna and Duckie and will be bringing my own TP and wet wipes to the hospital.

Good luck to you!

Lisa

Great list of questions! The only thing I see that you left off was when to start sexual relations. I guess that goes in there with exercise!!

Jan

Nothing to really add (great list of questions), but as noted above, I pre-ordered Ilex, Calmoseptine, probiotics and some Cottonelle flushable wipes. Figured it was better to be overprepared than not. I also brought my own TP to the hospital, as the stuff they have there is awful.
Good luck!

Okay, the list looks great. My attempt at answering:

1) Lomotil/Immodium/Metamucil wafers - when to start, recommended starting dosage, recommended time to take

This will be up to your surgeon - especially the lomotil and immodium. Some people take both, others take one or the other. Just a personal preference. I think most like immodium (max of 8/day) better.

Wafers - try starting them as soon as the doc says it's okay. Realize that for some of us, both immodium and fiber don't help much the first month or so and can actually make things worse. So, if they don't seem to help right away - give them a try later.

2) Probiotics - recommended? If so, when to start and dosage

I don't think there are many doctors who wouldn't recommend probiotics. It's a "they can't hurt" kind of thing for most of them, and some have actually read the research noting their benefits. Start right away. Dosage will be up to the mfctr's recommendation and what you can tolerate. Stick with a probiotic for a week or two before giving up on it. When you first take them they may cause you gas, bloating, etc. If you have that happen, lower the dosage and "ramp up." Or try a different one.

3) Pouchitis/Cuffitis - what are the symptoms, how common, chance of becoming chronic

I'm not sure on the statistics. You can find plenty of the symptoms on this board. Jan has noted repeatedly that bleeding is typically a symptom of cuffitis, not pouchitis, though that's not 100% (you can have cuffitis without blood or pouchitis with).

4) Butt Burn - what causes it (why do you get it with j-pouch and not colon), remedies

BB is mainly caused by: certain foods (spicy foods, eggs), excessive frequency (just think about when you had a colon and had diarrhea), and liquid stool. So, if you can avoid the bad foods, reduce your frequency, and firm up your poop - the BB will reduce in frequency and intensity

5) Fistulas/Fissures - what are they, what causes them, how common

Fistula = essentially a drain out some other place. Not sure of the cause. Not common overall among j-pouch patients

Fissure = tiny cracks in the mucous/lining, usually in the anus. Someone described them as being like "paper cuts." That's certainly what they feel like. Large ones are visible upon inspection, but tiny ones are not. Straining while emptying the pouch can contribute to the creation of fissures. I think fissures are a lot more common - though I don't think I have seen stats on it since it is not a "major" complication

Search on each of these words in this forum and you can find out a lot more

6) Leakage - still just mucous/blood, or also stool? How long will it last?

Leakage after TD is stool. Some people have true fluid leakage and others have nighttime "accidents" due to not waking up. A lot of people have problems in the first few weeks, but this resolves over time. I had a few "accidents" over the first 3-4 months or so (about 2 a month) but haven't had that happen in a long time

7) Closure of stoma site - leave open or stitch/staple closed

I think I remember reading that Fazio leaves it open to heal. Very few ever staple. Some (like my surgeon) put a few loose stitches in and help close it up. I had no complications at all

8) Chance of pouch failure?

I think it's very small. Search on this and you should find a #. I think it's like 3% over the lifetime of the pouch

9) What about sports and exercise? Anything off-limits?

6 weeks - no lifting over 10 pounds. Everything after that should be permissable unless your doc says differently. My surgeon did not put sex off limits even in the first 6 weeks, though you will know if you're ready or not during that time since your abs will hurt

10) Scar exposure to sun - need to take extra precaution?

Hmmm... I haven't thought or read about that, though I'm sure it's been discussed

11) Food - anything permanently off-limits?

My surgeon says nothing is off limits. The only reason for food to be off limits after TD is due to strictures or adhesions that narrow the passage for the food. For a lot of people - anything goes. Others have found things off limits for them. The only time I had a serious blockage I had Doritos, so I stay away from them even though I continue to eat tortilla chips (go figure).