Hello Group,
First, thank you to the people that have responded to my other posts. They have been comforting and offered some good advice.
As you may recall I had my post takedown on June 11th. Was out on June 15th and thought all was well and good. But two later I developed illeus or partial obstruction and bam back into the hospital for a week.
Since I got out I have had alot of pain nad high frequency. I even had an accident a few days ago. This has been really frustrating. I thought I was getting the surgery to end the fears of needing a bathroom. I know it takes time but how long?
Does doing the keagle excersises or trying to hold it in, help strectch the pouch?
How longs does the high output last? And begin to go under 10 times a day?
I'm trying metumucil and watching the diet. Somedays the stool is pretty well formed but usually its just very loose.
I'm trying to have patience but it is very disheartening. Being afraid to leave the house,
high frequency.
I felt alot better when I had the bag, sad as that may sound.
Look forward to some enlightening advice.
Peace,
Eric

Also forgot to ask if probiotics help?
What are few good brands?
And where do you find metamucil wafers?
I have found the powder but not wafers?

I don't use probiotics or wafers so can't help there. But after a few weeks post surgery I started making shorter trips around town which helped to stretch the time in between bathroom breaks. If you're at home, if you need to go, it's too easy to just go. If you're out and about, you are challenged more to hold it in longer. Once I ventured out about a week and a half after surgery, my trips to the bathroom decreased and I never had an accident.

three weeks after my takedown i was down to 5 or less times a day. And yeah i did the kiegle exercises...i did them while i was in the hospital and the following week at home when i was still not doing much...you know just watching tv or reading id practice...my dr also told me to try and hold it as long as possible to help my pouch stretch faster and now i have great control...finding a bathroom is never an issue and i go maybe 3 times a day but i dont really keep a count because i dont really think about it..i probably only go once when i get up, maybe after work and before bed. things will get better. =)

That is rey reasuring Jenny that the j-pouch has work really well for you. It is so common to read the go wrong stories, this sometimes puts things out of balance for the good stories!

It sounds very early days Eric, I hope things settle well soon for you. No advice from me as I have had only stage 1 done (total colectomy) plan for the j-pouch in a few months time!

Danni

Eric, you are at VERY early stages yet. Don't get disheartened as it WILL improve.

Nobody answered your question about probioitcs...Yes, they certainly can help. When I need them I buy PB 8 brand. They are available pretty much anywhere. I buy mine at the grocery store. It costs about 10$ for a 30 day supply. A lot of folks use VSL but I have found the PB 8 works just fine. When I use probiotics my stool will thicken up a bit and make everything a little more regular...Not a lot but I also lost part of my Ileum so diahrea is normal for me..
Julie

Well, first of all congrats on your takedown! You are at the VERY early stages yet, so although it is hard, try not to get frustrated! Things WILL and DO get better! I felt the same way right after surgery. I couldn't hold it, barely made it to the bathroom, and felt like I lived in the bathroom! I had my pouch created and taken down in 1 step in Oct. '07 - so I'm about 8 months out...and things are going pretty good. I probably go to the bathroom around 4-8 times a day. It really depends on what I eat, when I eat it and if I've taken Immodium or not. When I know I'm going to be home, I usually don't take anything to thickin the stool since I'm home and can go whenever. I don't have a problem holding it in if I want to though.

I don't know much about the probiotics since I have yet to try them myself but I know of a few people who love them.

Stay positive, and just keep on keepin' on! "If you want the rainbow, sometimes you have to put up with a little rain."

~Beth~

Hi Eric, you are still very very early in your takedown phase. It will take a good 12 months for your pouch to mature. Each day you will learn more and more about your pouch, what you can eat, what you should avoid etc.

I am a 40 year old male and am a lot happier with my pouch than when i had my iliostomy bag. I can tell you in 6 months you will look back and think how great it is now. I dont even take imodium etc any more. yes I go to the toiet a fair bit ( 6 to 8 times in 24 hours sometimes more sometimes less) but i live a normal life now. I even just completed a half marathon.

Give it time Eric, it is still very early in your healing etc. Good look.

Thanks for all your posts,
Things have gotten a little better this week. I'm trying to take metamucil 3xs a day and immodium. Had a good day yesterday but then high frequency today.

Glad things are getting a bit better. One thing I would encourage you is not to judge your success or progress based on number of bathroom trips...I was told 8-12 was normal for a well functioning pouch. Some people do get less than that, but some don't. BUT, if you don't have urgency or accidents, it isn't that big a deal.

Base your progress week by week not day by day and remember recovering from this surgery is a process.

I am 6 years post takedown and I find that after lying down all night, gravity kicks in and I need to use the bathroom several times in the a.m. before I am empty enough to last many hours. This doesn't bother me because I'm used to it. During the day I can go for hours and hours without needing a bathroom. Even in the evening I rarely find the urge to go. So...each of us kind of develops our own schedule of elimination. I wouldn't be concerned about the number of times you need to empty your pouch. What is, is. I eat and drink alot...all day long and up until I go to bed. Just my nasty habit, I guess. Whenever my surgeon asks how many bowel movements I have each day I just say 6-8 because I know that is the norm....supposedly! In my book, I would rather say, "Who's counting?" That is closer to the truth! Best wishes!

like cece my night time and mornings are my most active time...i find immodium helps a lot....it takes awhile but the pouch stretches it is not good to hold it too long because i find it then burns a bit and is harder to output. i can tell you it stretches automatically somehow...now i have a lot more control than post surgery.

Eric, unless I missed it, it doesn't look like anyone answered your question on where to buy Metamucil wafers. Although I usually just pick them up at my local supermarket or CVS drugstore, I have bought them online from CVS.com as well. As a matter of fact, every so often, I receive a coupon from CVS.com for 20% off a $50 or $75 order plus free shipping. I usually order a bunch of boxes on line at those times and they usually show up on my front porch within a few days.