I have my takedown surgery coming up on 5/5. What's the best advice you wish you'd gotten as you first settled into life with a j-pouch?? (Products to get? Routines to establish? Things to remember? Rx's to try?)
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CONGRATULATIONS!!!!! Advice: Drink water: before, during, and after every meal, stay hydrated! Do not strain!
I would advise not worrying too much about any specific potential problems until they actually happen, but I would suggest being keenly aware of your electrolyte intake as well as hydration as mentioned above. The J pouch is taking over for your colon which regulates electrolytes in your body, and for me that was not a smooth transition. I was hospitalized with a sodium overdose. My sodium and potassium levels vacillated wildly in the month or two after takedown. The J Pouch never completely takes over what your colon did in regulating electrolytes in your body.
In addition to the above, I’d offer two things that helped me in the early days: 1) protect your bottom with barrier cream before it gets irritated. Apply the cream after each BM. 2) Gently and slowly increase the time between BMs. It can take a while to work out which of the new sensations require a trip to the bathroom versus which can be safely ignored.
In a word, Calmoseptine. It’s the best diaper-rash ointment/barrier cream according to the ostomy nurses who helped me, and it does wonders on butt-burn. You can order it via Costco’s pharmacy (it’s over the counter, but they’ll special order it for you), or pay a bit more to have Amazon send it to you, or pay a lot more to get it at a regular drugstore.
A few things all help, though. I was torn between Calmo and patience as the best advice. It’s a big change, and it takes time to adapt. It gets a lot better over time, unless you have a leak internally or recurrent pouchitis.
1. Don’t try to go back to a normal diet immediately. Take your time, try new foods slowly, and don’t go too nuts on the insoluble fiber/seeds/nuts/hard veggies. Soluble fiber is great and will help you regulate your stool consistency, which is immensely helpful when it comes to how you’ll feel about leaving the house.
2. Sip your fluids. If you pound them, they’ll run right through you. Same for thin soups...
3. Sleep on a bed pad/wear incontinence pads to bed for a bit. Leakage is common with j-pouches (liquid stool); once you get the consistency worked out, it may happen less, but I saw a stat that almost everyone has anal leakage (joy, joy). You get over it, but it’s wise to protect your clothes/sheets.
4. The colon helps you ‘neutralize’ spicy foods. Even black pepper. The first time you eat hot sauce or chili powder or black pepper in your food, you may regret it. It took a long time for my intestine to adapt to that. And fatty foods tend to be poorly tolerated, too, in large quantities—don’t have to give them up, just have less and eat w something starchy. I couldn’t eat peanut butter or Nutella anymore with a spoon, for instance.
Tons of things you’ll learn as you go; each of us is probably somewhat different in what foods work and how soon, but it will get easier. It’s like anything else, I guess; the human organism is pretty good at adapting to changes in its environment.
I celebrated by donating my spare ostomy supplies—there are various charities that accept them, by the way... but I didn’t donate them until I got used to my pouch, just in case!
Best of luck!
Bidet, either portable or installed under the toilet seat. Preferably both.
@athena posted:In a word, Calmoseptine. It’s the best diaper-rash ointment/barrier cream according to the ostomy nurses who helped me, and it does wonders on butt-burn. You can order it via Costco’s pharmacy (it’s over the counter, but they’ll special order it for you), or pay a bit more to have Amazon send it to you, or pay a lot more to get it at a regular drugstore.
A few things all help, though. I was torn between Calmo and patience as the best advice. It’s a big change, and it takes time to adapt. It gets a lot better over time, unless you have a leak internally or recurrent pouchitis.
1. Don’t try to go back to a normal diet immediately. Take your time, try new foods slowly, and don’t go too nuts on the insoluble fiber/seeds/nuts/hard veggies. Soluble fiber is great and will help you regulate your stool consistency, which is immensely helpful when it comes to how you’ll feel about leaving the house.
2. Sip your fluids. If you pound them, they’ll run right through you. Same for thin soups...
3. Sleep on a bed pad/wear incontinence pads to bed for a bit. Leakage is common with j-pouches (liquid stool); once you get the consistency worked out, it may happen less, but I saw a stat that almost everyone has anal leakage (joy, joy). You get over it, but it’s wise to protect your clothes/sheets.
4. The colon helps you ‘neutralize’ spicy foods. Even black pepper. The first time you eat hot sauce or chili powder or black pepper in your food, you may regret it. It took a long time for my intestine to adapt to that. And fatty foods tend to be poorly tolerated, too, in large quantities—don’t have to give them up, just have less and eat w something starchy. I couldn’t eat peanut butter or Nutella anymore with a spoon, for instance.
Tons of things you’ll learn as you go; each of us is probably somewhat different in what foods work and how soon, but it will get easier. It’s like anything else, I guess; the human organism is pretty good at adapting to changes in its environment.
I celebrated by donating my spare ostomy supplies—there are various charities that accept them, by the way... but I didn’t donate them until I got used to my pouch, just in case!
Best of luck!
I celebrated by donating my spare ostomy supplies—there are various charities that accept them, by the way... but I didn’t donate them until I got used to my pouch, just in case!
Planning for the worse! That is really smart!!! 
I would have not had tomato sauce the night I returned home from the hospital. It caused terrible burning and frequency. I had tomato sauce a few months later and was fine.
Go easy on beans, and never think you can safely pass gas without sitting on toilet. Get used to the odd sounds coming from your gut, because its gas working its way down.
Morgan be patient - my surgeon said it takes a full year to acclimate to the jpouch. And you know, I did see improvements for most of a year. When it gets tough you can always get advice (or sympathy, or cheers) here. And stay active, as best you can prior to, and post-surgery. Walking really will help with your recovery. Oh yeah, get all your chores done and bills paid prior to surgery so you have less to deal with after. Can't wait to hear you are on the other side and recovering.
Remove stressfull people and irritation facotrs from your life if you have those, and use a bidet, and live happy. Stay hydrated.
@Stardust posted:Remove stressfull people and irritation facotrs from your life if you have those, and use a bidet, and live happy. Stay hydrated.
Excellent advice Stardust! Have you seen the movie and read the book Stardust???
My advice would be to not sweat things too much in the beginning. I swear I was on this site asking people for advice about things every week. And by the time I got advice whatever problem I thought I had was gone and something new was happening. It takes a while for things to settle down. Don't freak out if you feel you are going to much or if you have blood in your poop or if it's to watery or to thick. It's a process and it will get better over time.
Another lifesaver for me personally is metamucil. That has helped me immensely.
Don't snack between meals!
@GB2014 posted:Don't snack between meals!
Really? Why?? I have for years.
@Former Member posted:Really? Why?? I have for years.
When I had my ileostomy, I was one of these weird people who had a transparent bag so I could see exactly what was going on. I would always change my bag first thing in the morning before breakfast - because the stoma was still, hardly moving and I noticed that as soon as I started eating it would become very active.
Basically, eating really gets the guts going and by only eating three times a day, you are giving your digestive system long periods of time to settle down and slowly digest your food. When you snack, you are sending your guts into overdrive, rushing your previous meal through you and then you go to the bathroom a lot.
Lauren - if you are going 20 times a day, I definitely recommend trying this to see if things improve (and maybe cut down on the water drinking, if you have enough saliva in your mouth to spit I think you're fine; you don't need to keep drinking non-stop).
Hope this helps! Not snacking is one of my golden rules for life with a J Pouch.
GB2014,
Your analysis overlooks that when you have the temporary ileostomy bag peristalsis is still totally off due to the recency of surgery. If eating causes excessive peristalsis, then it's due to a spasmodic bowel which is very very common after surgery and even a year or two after surgery. If it's such that you can't have snacks between meals then I would suggest an anti spasmodic med like levsin or bentyl 45 minutes before meals is probably warranted.
There should be no problems snacking between meals if peristalsis is normal. For me I had a spasmodic bowel after surgery and observed what you did with my own bag. And I also did right after J pouch takedown surgery. But it does calm down over time, and you do not need to take anti spasmodics forever, nor should you need to avoid snacks forever. Rather than avoiding snacks between light meals, the proper course of action to address excess motility is to take anti spasmodics. Nobody should accept excessive motility after meals as the norm, because it's not the norm, except after surgery and while having temp ileo bag. It's a treatable, temporary condition that doesn't need to be accepted as a new normal.
All of the above being said, bentyl and levsin do have some side effects like making you feel a little loopy and unfocused. You may be able to get away with taking one at bedtime, or before lunch and at bedtime. However it does kabosh excess motility after meals when taken 45 minutes before. Donnatal is another drug used to treat this condition and it has less side effects, but it's availability at the current time is unknown to me. It's not viewed as as much of a go-to drug by surgeons as bentyl and levsin.
@GB2014 posted:When I had my ileostomy, I was one of these weird people who had a transparent bag so I could see exactly what was going on. I would always change my bag first thing in the morning before breakfast - because the stoma was still, hardly moving and I noticed that as soon as I started eating it would become very active.
Basically, eating really gets the guts going and by only eating three times a day, you are giving your digestive system long periods of time to settle down and slowly digest your food. When you snack, you are sending your guts into overdrive, rushing your previous meal through you and then you go to the bathroom a lot.
Lauren - if you are going 20 times a day, I definitely recommend trying this to see if things improve (and maybe cut down on the water drinking, if you have enough saliva in your mouth to spit I think you're fine; you don't need to keep drinking non-stop).
Hope this helps! Not snacking is one of my golden rules for life with a J Pouch.
That totally makes sense! I even read that fasting is good for IBD patients because it rests the digestive system like you said. Since you do all of that, you have a low chance of getting cuffitis and pouchitis I would imagine. I cannot go the day without snacking: snacking is very important for me. I am 5'10' and weight 125 pounds, if I do not snack, i would feel sick. I am glad everything works for you though
My bowel movements have been up ever since I got the surgery almost 7 years ago. When I had my colon, I was barely pooping without laxatives: the only time I pooped is when my disease was active. I know 20x a day is a lot but I am just grateful I can poop on my own. If I do not drink water throughout the day, i feel insanely sick, I tried to cutt down on my water but I feel sick each time I do. Its unfortunate but the positive side is I am doing okay and pooping on my own. I have had 3 pouchoscopys in almost 7 years and all came back normal.
Glad your doing well dear
First, I 2nd the comment to invest in a bidet, it was best thing I ever did. It saves on so much pain & soreness. I can't live without it. 2nd the ointment I use is A & D, it's cheap & it works. 3rd Physillum Husk, this fiber is the best & so easy on the bowel. The food & lifestyle change comes with time & experimenting with diet, vitamins & meds that work for u. Best wishes for a good surgery & outcome.
@tf posted:First, I 2nd the comment to invest in a bidet, it was best thing I ever did. It saves on so much pain & soreness. I can't live without it. 2nd the ointment I use is A & D, it's cheap & it works. 3rd Physillum Husk, this fiber is the best & so easy on the bowel. The food & lifestyle change comes with time & experimenting with diet, vitamins & meds that work for u. Best wishes for a good surgery & outcome.
Goo tips! I looked up A and D oinment, it looks pretty good! they even have it at local stores too! And its cheaper than a lot of other stuff too and it comes in a bigger bottle than most stuff too!
Thanks
Hello CTBarrister / Lauren,
well, everyone's different and you have to find what works for you.
If a doctor has said you need a high calorie diet then okay but otherwise,
I don't snack between meals because I think it is the healthy thing to do. I've never read any guide to healthy living that recommends eating continuously throughout the day. I don't eat 3-4 hours before bed either as apparently that is great for the stomach and your sleep and means I only go to the loo once during the night.
And when it comes to the J-Pouch, well, I've explained my reasoning. When you eat, things move through you faster. That's just normal peristalsis. I see a definite cause and effect - I snack, I go to the loo more often. This is why I don't do it - most of the time anyway ;-)
@GB2014 posted:Hello CTBarrister / Lauren,
well, everyone's different and you have to find what works for you.
If a doctor has said you need a high calorie diet then okay but otherwise,
I don't snack between meals because I think it is the healthy thing to do. I've never read any guide to healthy living that recommends eating continuously throughout the day. I don't eat 3-4 hours before bed either as apparently that is great for the stomach and your sleep and means I only go to the loo once during the night.
And when it comes to the J-Pouch, well, I've explained my reasoning. When you eat, things move through you faster. That's just normal peristalsis. I see a definite cause and effect - I snack, I go to the loo more often. This is why I don't do it - most of the time anyway ;-)
Lol, Do you still get enough calories since you do not snack often??? How far apart are your meals???
I don't want to hog the thread any more so I'll just say:
I have a big, healthy dinner, a semi-healthy breakfast and a trashy, high-calorie afternoon lunch (I exaggerate, I just mean that's when I eat chocolate and crisps). They are usually 3-4 hours apart.
I think I get enough calories. I don't feel tired and have a reasonable amount of energy to go for walks and get stuff done. Water is more important, I do have to keep drinking throughout the day. Like you, I feel bad if I don't. But on the positive side, being obliged to drink lots of water is probably a good thing! :-)
@GB2014 posted:I don't want to hog the thread any more so I'll just say:
I have a big, healthy dinner, a semi-healthy breakfast and a trashy, high-calorie afternoon lunch (I exaggerate, I just mean that's when I eat chocolate and crisps). They are usually 3-4 hours apart.
I think I get enough calories. I don't feel tired and have a reasonable amount of energy to go for walks and get stuff done. Water is more important, I do have to keep drinking throughout the day. Like you, I feel bad if I don't. But on the positive side, being obliged to drink lots of water is probably a good thing! :-)
Sounds cool! I wish we did not have to drink water all throughout the day but its good to not worry about things we cannot change. I bet you are at a healthy weight too, so it seems what you are doing is working.
My normal eating schedule is: Breakfast 8am, Snack 11am, lunch 1pm, snack 4pm, and dinner 6pm, snack 8pm.
Meals are normally 60carbs and snacks are 30 carbs, all vegetarian though.
Thank you all for your help here! I'm now a week out from my takedown and I've had some setbacks (debilitating but temporary gas pain, mostly) but I'm trying to eliminate some FODMAP foods in the short term to tamp that down. I installed a bidet pre-takedown and got some calmoseptine, and I'm keeping up the same Metamucil regimen I was on when I had the ostomy. Butt burn seems minimal.
I really appreciate all the helpful thoughts on this thread! I've been dreading the process of getting used to my new j-pouch, and it helps to have company from other pouchers.
@Morgan Hubbard posted:Thank you all for your help here! I'm now a week out from my takedown and I've had some setbacks (debilitating but temporary gas pain, mostly) but I'm trying to eliminate some FODMAP foods in the short term to tamp that down. I installed a bidet pre-takedown and got some calmoseptine, and I'm keeping up the same Metamucil regimen I was on when I had the ostomy. Butt burn seems minimal.
I really appreciate all the helpful thoughts on this thread! I've been dreading the process of getting used to my new j-pouch, and it helps to have company from other pouchers.
Your welcome dear! Let us know if you need anything, were here to help
Congratulations on Take down hon