I eat 2 - 9oz of lean roast beef 2x a day + 3 servings of steamed mixed green beans or carrots with white rice, 2 servings of banana pudding, 1 cup of mix pretzels snacks thingies = 6 - 10 or 12 trips to the toilet a day ...    

 

j-pouch for six years and three months 

3 years since takedown, 8-12 a day, tried Cipro, rifaxamine, pepto bismal, vsl, loperamide, metamucil all with early signs of decreased activity but not sustained. Can hold on, no leakage but just fed up with every 2 or 3 hour trips to bathroom, but better than uc for sure. Paul

Typically 4-5 times a day.  Almost 14 mos. out.  I take Immodium at night (2 pills) and occasionally take Lomotil as needed, when I am out all day or exercising.  I took 2 just before a 3 hour bike ride and did well.  I didn't take any  before a 5 k yesterday and also did fine.   It depends on the time of day.  Things are more active in the later afternoon/early evening.  Happy j-poucher!

I typically go to the bathroom 10 times a day and 3 at night. I'm 3 years with a pouch.

I take Immodium only once per week, because I find its more effective when not used regularly.

I found a diet that works well for me - lot's of cooked vegetables. Otherwise my situation would be worse.

I was told by new GI dr that 6-8 x a day is about the normal with a J-pouch.  He said when we lose our colon the water that goes thru colon doesn't have that much time with a J-pouch.  Idk.  I was hoping to be around 2-3 someday.  I k they always say to me this a new normal.  I do my best with diet and meds.  I've tried most all of them.  I am trying to get to my new normal and live with it and be happy. I have j-pouch for 4 yrs now.

are you havve urgency i am 8 mounths still have urgency when empty jpouch  after that i have the feel to empty my jpouch -urgency this is forever for life everytime will have urgency and have leakage some time or still my pouch is young for this everytime have urgency after empty pouch 

I've had my j-pouch for one year. I take psyllium husk daily. I normally empty mine four times a day (breakfast, lunch, dinner, before bed). I rarely need to empty it during the night. I'm able to pass gas, which I think helps keep the number of BMs down - as I don't need to empty the whole pouch to relieve the gas sensation.

If I don't take psyllium husk, I probably empty about six times a day.

2.5 yrs out, averaging 5x/day.  That's on a 2700 kcal average intake.  I can go less by eating less if I need to, but I can hold it in excess of 2 hrs now.  No Imodium anymore.  Had some night time slip-ups at about 1 yr, but that stopped when I stopped using Citrucel.  Generally I need to avoid fibers and starches, but if I drink enough water throughout the day, I can eat anything with no issues.  The 4am poop remains persistent, but then it's usually 2pm before the next one shows up.  I honestly couldn't be happier with mine.

Speaking from experience of 25 years now with a J Pouch, the actual number of BMs is not as important as whether you are fully emptying the pouch each time you go.  Extra BMs could be due to not emptying as fully as you should be.  My surgeon taught me some maneuvers/exercises which promote full evacuation.  In my case, when I am sitting on the commode I stretch and bend my torso to the left and twist upwards in a corkscrewing motion. This maneuver itself usually leads to me completing the evacuation of more fecal material, because it is causing a squeeze on the pouch.  My surgeon also told me to stand up after the initial burst of evacuation, bend forward, put arm over abdomen and push, and then sit back on commode.  I experimented with these and other maneuvers and if I don't  do them I will have extra, unnecessary BMs.  You should experiment with what works best for you.

It's basically using the laws of physics and gravity and you do not need to be Albert Einstein to figure out how to use them.

Albannach posted:

I've had my j-pouch for one year. I take psyllium husk daily. I normally empty mine four times a day (breakfast, lunch, dinner, before bed). I rarely need to empty it during the night. I'm able to pass gas, which I think helps keep the number of BMs down - as I don't need to empty the whole pouch to relieve the gas sensation.

If I don't take psyllium husk, I probably empty about six times a day.

You pass gas without crapping your pants?? TEACH ME MASTER :'v

Had my J pouch for nearly 3 yrs and 3 to 4 BM per day, never less than 2 and very very rarely more than 5.

Never any urgency or have I ever experienced the dreaded butt burn and never is my sleep disturbed to use the toilet.

 Can go for hours and hours between BMs; in fact, other than responding to forum post such as this, I don't even think of BMs.

lovethatgrey posted:

Wow STRANGE  That's wonderful!  I hope my husband has the success you've had.  Do you mind me asking how old you are?  My husband is 65 going to have his first surgery in Dec.  We're scared. You are an inspiration.

I don't want to sound negative, but at that age I would keep a stoma... in my honest opinion. Managing a jpouch for the first months/years can be exhausting and can mentally break you down... also, if there is failure, to go from a pouch back to a terminal ostomy is not that simple; risky. Words from my surgeon.

lovethatgrey posted:

Wow STRANGE  That's wonderful!  I hope my husband has the success you've had.  Do you mind me asking how old you are?  My husband is 65 going to have his first surgery in Dec.  We're scared. You are an inspiration.

I'm 49 yrs old, diagnosed with UC during 1993. Prior to my J pouch I had the illeostomy for 9 years.

 The first Surgeon I was referred to advised against the J pouch, suggesting that I'd adapted well to the illeostomy.There was more of an emphasis on the possible complications and the 8 to 10 BM per day.

However, when referred to my second Surgeon at St Marks Hospital London, there was a totally different attitude, thus I have a J pouch; the best decision I've ever made.

By discovering this forum; UK member made me aware of the options available from the British NHS; I was also introduced to the specialism of St Marks Hospital.

 

I had my pouch takedown at age 61 almost 62 and I believe it has a lot to do with what kind of shape you are in as well as your outlook and of course the expertise of your surgeon!  I had 3 surgeries (laparoscopic) and my recoveries went well. I feel better than I have in a long time, much healthier.  So while age can make a difference, it is not necessarily the main component.  While the ileostomies weren't the greatest,   they were manageable, the j-pouch is certainly a whole lot better!  Lovethegrey, good luck to your husband!  Hope it all goes well for you both!

It does take patience because the adjustment is about a year!  I can't tell you how many calls I made to my surgeon in the beginning.  I had my first scope in July and all looked well.  So I won't see him for quite a while as long as I continue to do well.  If you ever want to PM you are welcome to.

 

 

 

 

 

 

 

 

One of the sources my surgeon gave me to read was the Ileoanal Reservoir Guide.  You can download it on line.  It helped me a lot.  Also, to help with scpinter control, I started doing Kegels religiously, as soon as the surgeon said it was ok.  If you're able, take walks, exercise prior to surgery and then soon after.  Unfortunately I developed erethyma nodosum just before my first surgery and couldn't walk into the hospital that day.  It is a temporary condition and went away once my colon was gone.  

Also, equip yourself with a tube of ilex Protectant Paste; I often say it is best to have ilex paste and not need it, rather than need it and not have it.

Although I had a Stoma for roughly 9 years, during that time, I never experienced any issues in regard to skin erosion around the Stoma due to appliance leakage

However, after the creation of my J pouch and  the Temporary loop illestomy, I experienced agonising skin erosion around my Stoma.

At the time, my Stoma Nurse provided all kinds of sprays, creams, powders and potions and and nothing worked, that is, until Jan, from this very forum recommended ilex Paste.

Within seconds of applying the ilex paste to the weeping and festering skin around my Stoma I felt instant relief, due to its cooling effect and within days my skin was totally healed

I continued to apply the ilex Paste around my Stoma as a prevenative measure until takedown.

ilex Paste, once applied forms a barrier and protects the skin from Stoma output leakage, therefore rather than experience the pain and discomfort I endured, it's best apply the ilex Paste before skin erosion occurs. 

lovethatgrey posted:

CTB23 Thank you!  We just may reach out to you at some point.  Thank you for the offer.  Nice to know we're not alone.  

I was 66 when I had my first step surgery (colon removal) and had the reconnect/"takedown" a few months later (about 5 yeats ago now). The surgery went fine - I did have a small blockage post-surgery but it was not that much of a big deal. The most important things are 1) be in overall good health; 2) have a positive outlook; 3) be patient while you adjust; and 4) expect some ups and downs. I have had a few small bowel obstructions that sent me to the hospital for a couple days each, but in each case they cleared on their own somehow. Anyway, you're doing this because of a real problem, so keep in mind that this is a plus for you, and don't let some ups and downs get you frazzled or "down." Best wishes!

I’d be thrilled to get my number down to 6-8, but unfortunately tend to typically go 15-18x daily. I can often make it 3 hours but then at another time may go 3x in an hour. I know it’s because I can’t empty completely, partially related to prolapse blocking output. I’m almost 4 years out, and 1.5 years ago had mucousectomy and pouch advancement. That did improve things. Never had pouchitis. Structurally pouch is great. Just dysfunctional.

20 yrs post-takedown and I go about 4-5 times within 24 hr period.  More if I eat acidic foods or fruits. I don't take immodium unless necessary because it tends to make me cramp up more.  Meat and carbs work better for me.  I always try to limit food intake before bed and definitely use the bathroom right before going to sleep. Inconsistent sleep from having to get up once or twice at night wears me out and makes me feel very fatigued during the days.

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