oh, maybe this needs to be in the other forum.. .. if a moderator wants to move it, that's great. thanks.

I have this same ongoing problem from a chronic stricture and cuffitis. I would be interested in knowing the cream contents if you would care to share. At this time they are recommending more surgery as i am also bleeding due to this issue.

The first thing I thought of was to eat a softer diet, but I have no experience with your type of problem.

You might want to do a search for dilators in here. There are several people that use them.

I hope you find relief soon.

Dilators. that was what the doctor mentioned. I was like "so, I would come in every so often and you would do what?" and he smiled and said.. "No, you would do them yourself."

I don't know if diet would help, but I may quit eating much veggies and bran/etc. cereal. I tend to eat a bit of everything, it's not like I only eat one thing or another.. so the doctor felt that changing the diet wouldn't be that helpful.

I don't know what cuffitis is and I haven't had pouchitis. The other Doc said I had a lot of scar tissue.

Well, I have till Thursday to sit and write up a bunch of questions for my appt., so if anyone can think of some useful questions to ask, please share them.

I will ask what the ingredients of the creme are. I guess it's his special formula. He has a local apothecary (now there's a word you don't hear to often anymore) make it. It;s called C- Bentonite Ointment. The Dr.'s name is Dr. Bennett. So, I guess he named the ointment after himself. I just called the Apothecary to ask what was in it, but they are closed for the day. Do you want their number? Should I do it privately? Or does it matter? I don't know if you would need a prescription for it.. although the bottle I have has an RX number on it, so perhaps you would.

oh, thanks for the suggestion to search for dilators. I just did a quick search and stuff came up so I will explore that later when I have a bit more time.

What other words?

Stricture??

Anything else?

scar tissue??

Diet and stricture?

scar tissue and diet?


Thanks.

Hi again,

I make a protein fruit/veggie smoothie daily. That's how I get in my servings, as I don't do well with fresh ones. I eat Greek yogurt too. I need to take Imodium to thicken things up so....was thinking if you did something like I do it might make things more runny and you wouldn't have to strain so much. The mix I use is PlantFusion and it's hypoallergenic supplying 42% of the daily required protein all plant based plus it has other good stuff that we don't get from vitamins and supplements. Any protein mix would work, this is just the one my nutritionist suggested. You might want to make a fruit/veggie smoothie with yogurt or whatever without the protein mix.

It looks like you have a good list. I still have daily pain from my on and off again cuffitis and adhesions/scaring in my abdomen. Do you have anything pain like that?

Cuffitis is UC that flares in the 2 cm of tissue they left in attached to the rectal cuff to staple the j-pouch to. It's great that you have not had it or pouchitis! Are you using daily probiotics?

About that special formula. I bet they can't give you the ingredients as it is his "formula". Maybe you can find out how others can obtain it for us.

Please let us know how everything goes and I hope you are feeling better soon.

Search "anal dilator".

I will ask the doctor about his creme. Who knows,, maybe he would want to sell it on here. I see that VSL#3 comes up on here.. of course, I would ask people before I got him involved etc.. but I'll ask him on Thursday.

The plant stuff sounds good. Maybe a break from Veggies is warranted, although that sounds so depressing to me in that for years with UC, I couldn't/didn't eat so much and I hate to have to be worried about that again. Of course, I am concious of it when I have gone a lot and the area is sore.. the creme helps but then the area will get sore again. So, when that happens, I avoid tomatoes and oranges and so much more.. well.. who knows. it's worth a try to give them up and try that mix.

I don't use immodium all the time.. just when I want to be sure I don't have to go when I am out or about or if I drank too much coffee and things are runny. I DON'T want to ever encourage my output to get runny.. then it is runny, it's even more irritating and burning plus I feel like I have to be in the bathroom or get to a bathroom quicker and one of the JOYS of my j-pouch is that I can HOLD it if I need to. I can't tell you.. well.. you probably know.. what a joy that is to someone who had the situation where I was always running running running to the bathroom, sometimes having to stoop outside in parking lots!! So, I prefer the pushing than the runny!

But I can tell I am dehydrated from straining.

I don't have the pain that you are referring to. I DID early on, but it has faded away as the years go by.. it's been about 4 or 5 years.. I need to print out my records tomorrow night and go over them.

Oh, I just started using daily probiotics.. the little pills, not expensive, just regular brand names.. I was told it doesn't make a difference. I don't know if it does or not. And I've been buying Keifer, which I like and trying to drink a little each morning. I also bought these other drinks.. Kombucha. They take a bit of getting used to and I'm NOT in the mood for them every day, but they are supposed to be helpful. I just read an article about other fermented food one can eat and was going to try and find it again and print it out.

Thanks!!

My nutritionist told me probiotics should be refrigerated to keep their potency. She said the non-refrigerated packaging reads something like so many billion at the time of packaging or bottling and they loose potency because they are not refrigerated. On the other hand my Internist says she has some patients that take Curral (spelling wrong) and it's not refrigerated. She is prescribing me the VSL#3DS and has me take more when I have to take an antibiotic.

We get conflicting advice on so many things. My surgeon said I could take ibuprofen for pain and all my research indicates we still should not take NSAIDs. I break down and take it with bad headaches as what am I supposed to do.

If you go on-line to PlantFusion's web site and enter your zip code it lists all the local locations you can purchase it and it's available on-line at Amazon.

I take Imodium after I make my smoothie but if I don't take it the BM's are not watery just a lot looser.

I need to check into the drinks you are recommending. I use coconut water in my smoothies too sometimes. It's a great natural hydration drink. I don't like it too much by it's self. If I drink it that was I put some other juice in with it or buy it prepackaged including mango juice etc.

Thanks for the pain advice, knowing it can eventually go away makes it more bearable.

It's been several days I hope you are feeling better.

yes, conflicting information about extra products and "helpful" products is something I've been dealing with for 30 some years! I got u.c. when I was 18 and have had this j pouch for like I said, 4 -5 years.. I can't remember because of all the years leading up to it.

But yes, "blue green algae pills/capsules" "Coconut macoroons", a diet with this or that, a diet without this or that...

That's why the thought of NOT eating veggies etc. is NOT appealing.. I don't want to have to go through all that again. BUT, I am willing to experiment for a week and see if not eating bulky food is helpful.

I have had coconut water.. but found it a bit sweet. I drank it for electrolytes. Not for acidophlus.. which is why I would drink Keifer, or take the supplements. I thought about VSL, but the expense was something I didn't want to incurr. And again, I thought, since I like Keifer, yogurt and the other drink whose name I keep forgetting, why not just incorporate them into my system. And what the hell, take those little pills that say acidophuls, although I have my doubts how they can help because yes, their "liveness" of cultures.. how could that be? I believe it's a racket, but hey, they were inexpensive enough I bought two bottles, one from home and one from work.

more later.

If you look up my old posts I wrote a few about dilating.
I had problems with a stricture after take-down and have to dilate it to keep it open.
Originally I was dilating weekly, I have slowly decreased the frequency to once a month or so.
At this point for me it's not like my stricture is closing the pouch off completely, but if I dilate it's like it opens it up that little bit more -- this allows me to empty more easily (less pushing) and I notice I'm not as gassy (incomplete emptying makes me more gassy over time).

Pixie,
What do you use to dilate? My surgeon frowned upon this but he was not trying to go to the bathroom through a straw. I still have stricture issues that they want to deal with via surgery as I also have cuffitis issues.

I use a hegar dilator. I read some posts that some people just use their finger, but for me the dilator is easier.
If you have a chronic stricture you should see if you can start dilating at home. It may be able to help you empty more easily! (I know that bathroom through a straw feeling. Gets old really fast.)