@FRH posted:

straightforward and should help many

Burn and Irritation - Calmoseptine cream!
Nothing  compares to heal and soothe protect. Many others burn more than soothe.

Warm Water enemas when irritation occurs or acidic foods burn and you need to get rid of it out of pouch because it’s irritating.   Never use the saline that comes in them when purchased unless you really want  to feel burn  Replace with warm water. Rinse out pouch. For sores or burning skin draw yourself a warm bath, not hot. Slowly get in. Just rest  2-3x day if necessary about 10 min. Dab dry Don’t rub  Reapply calmiseptine cream.

Hemorrhoids;  Tucks cream is cooling and soothing. Also handy to have on hand if out and about or visiting (along with their pads) and of course the Calmoseptine

Konsyl psyllium fiber POWDER - Not tabs.  Tablets do no good.  I Think there was one other brand at Whole Foods  comparable.  Why this brand? There are no additives or other ingredients. It’s  100 percent psyllium fiber.   no citrus (burning) additives to make it taste like orange juice like Metamucil or those others that only make things worse and don’t gel up  Take before every meal because it is gel like  it thickens in the intestine.  Therefore it helps bind acids in food and small particles that irritate as they pass.   There is a fine balance with fiber and it’s the fiber/water intake balance.  You need enough liquids to drink it down well and have it move through your system (consistency).  The more fiber, you need more liquid needed, but you don’t want it watered down too much.  just keep that in mind.  I take 1-2 tsp with 12 -16 oz oz of  water before each meal.  tou can also sprinkle some on or in your food but don’t go overboard because if you don’t drink liquid it can gel in throat and choking hazard. So Ai sprinkle small amount if food has sauce and then also glass of water  with meal.   Now not to confuse but recently I’ve looked into Guar Gum a powder  reading it’s benefits - it also helps bind bile acids.  I would not suggest replacing the Konsyl and Definately it’s a must - but I am experimenting with no more than 1/4 tsp of Guar gum mixed WITH the Konsyl and so far I think it may work even better.  Your body needs to slowly get used to the guar so start small. Very similar properties to psyllium with each having good benefits for binding bike acid so that’s why I’m testing adding a little to psyllium.  There are some very positive results in studies for pouch surgery patients noted using guar  check out on Internet if intrigued  

Possible Infection; If you feel there is an infection with increased output, cramping pain burn call your Dr.  A round of Cipro does the trick for any pouchitis Ive had quickly. During this time I eat bland soluble food Green juices and tea.  Pasta and Potatoes (mashed) and I don’t mind telling you if so have to purée my food then I do it in blender  

General Diet on daily basis

i replaced butter with olive oil, I steam veges  carrots or similar to very soft stage and chew slowly and well. White fish steamed. Mostly I stick to mild pasta dishes, potato casseroles, oatmeal cooked well in the morning - small bowl.

I never add chili powder garlic onion spices to recipes (for my portion)   If I want to try occassion additives to food like nuts or berry etc I cook it soft right into the oatmeal itself to break down.  I crush the walnuts annd let cook so they are not hard.

Acidic foods are your enemy!  Rather than spices use mild herbs. In place of meat I fry cubed tofu in olive oil and flavor with various mild herbs (normally Italian) seasoningfor flavor and protein. I also supplement with B12 since I don’t eat meat. Chick peas are a good source of nutrition as well as mashed sweet potatoes, Avacado.

I use the Mediterranean diet and make adjustments to suit my needs when it comes to garlic onion and those burning spices and only use milder sauces making sure all is cooked well. If I add one Clove garlic I use roasted garlic roasted in olive oil and keep on hand in frig since cooking helps make it mild  just be careful and trial and error but if you use yellow onion or garlic cook down soft and long to mellow them  you don’t need much to flavor things a touch  

Think Soft to Medium digestible food and digestible fiber - not roughage.  eliminating spicy or acidic food and binding every meal !!

personally, my worst foods: pepper(s) or table pepper onion garlic chocolate EGG VINEGAR acidic fruits and vegetables, insoluble fiber, some chocolate, definately all deli meats, pickle relish nuts seeds, mayo. all processed foods, especially meats! Salad dressings condiments (usually all have vinegars or spices)  

Pre-Relief tablets.  These are excellent. Bottle says reduces acid by 90 percent. Not sure about 90 but they do a great job when eating a questionable meal or to have on hand out and about and you are hungry and stuck eating something you shouldn’t. They are small and easily carried and  digest  easily.

Get yourself a steamer.  

Cook at home so you know what you are getting.  Restaurants spice up your food.They Serve processed food. Usually full of grease.

Use olive oil (anti-inflammatory) to cook in, or just add water to cook items in pan (with many foods) this works   Toss tender steamed veges in olive oil and herbs or leave as is. Butter is fat and causes inflammation and irritation.  

If trying nuts seeds and you can soften them first or crush.  Make sure you bind any nuts seeds with psyllium fiber so they bind and pass easier.   IF you decide to try them  I cook a little in my food.  I add a little water to fry pan and place 1/4 cup berries and steam until they pop to soften for occasional pancake or frencH toast but small qty  

I can not tolerate greens or raw salads!  so my go to is Amazing Grass original  Superfood greens powder to not miss out on the wonderful benefits  of greens. It’s not cheap but convenient.    If you have a high powered juicer then juice your veges (steering away from acidic additions)  

Many of the premade store green juices contain acidic pineapple or similar additions as their main ingredient.  Unless your blender is $400 or above you will be stuck with pulp in your glass which is not good so the powder for me is the easy convenient method  

Matcha Tea (ceremonial blend) with small dollop cool whip - that’s my treat!   Green matcha is one of the most alkalizing things you can do for your body-not to mention (read the amazing other things it’s good for)   From what I’ve gathered you would need 20 cups green tea to get the same benefits of 1 cup Matcha. Regardless it is alkalizing and is good for you.
If you don’t like the flavor you can add the small dollop cool whip or add touch of vanilla to it or even almond milk

summary  

Eat small meals- chew well and Slowly and BIND all meals prior with psyllium making sure to balance with liquids (water). Watch intake of acidic foods or insoluble fiber, nuts, seeds, spices!  If using garlic onion cook way down to mild and only use a little for flavor.  Always keep on hand Calmoseptine, Tucks, Konsyl fiber, PreRelief tabs, keep body alkaline with green superfood powder, Matcha Tea, or if not Matcha drink green tea.  See the doctor if you think it’s pouchitis- ask about Cipro or similar.

I’m not saying any of this is perfect but it WILL get you to a tolerable living situation,  unless you have something more serious going on that needs checked  

They discharge you acting like in a few weeks to months you can eat what you want  Totally NOT true. It’s not easy! It’s exhausting. It’s still exhausting 20 years later.  All I hope is if someone reads just one of my suggestions maybe they can breathe a little easier for awhile until they add their own methods that work but this is a good start hopefully  

Thank-you

I hope you decide to keep a journal, this post of yours is perfect!

Trust me for 20 yrs I’ve kept a journal which is how I came up with the above. Foods that work, foods that don’t, concluding it’s the bile acids that burn.  It’s the acids in foods - the fact that liquids acids spices and  the bad stuff that quickly rushes down to the bottom that both irritate and burn. Unless you can have something first like a binder (be it pasta white bread potato and or psyllium and give it a little time to make a buffer and slow down as well as absorb those things when you eat, they run straight down to the pouch and cause issues.
I’m not perfect at it and yes I do eat more carbs than I should - but it’s nice to know I can have a cup of coffee as long as I have a really thick bagel with it in the morning and not suffer the rest of the morning. The pre-relief tabs help with those things too because of how acidic coffee is. There are many charts on line of acidic and alkaline food (but they tend to differ) however the high acid ones are usually the same. Check them out  hopefully some of the info helps  It really comes down to what you are putting into Your body and what chaos will that cause if you don’t do certain things to counteract.  The most common thing that frustrated me was - what’s left to eat then?
Since we all differ I’m hesitant to write up some things but may do some ideas to “try” for people.  Thanks for responding as it lets me know what I wrote meant something.  

@FRH posted:

Trust me for 20 yrs I’ve kept a journal which is how I came up with the above. Foods that work, foods that don’t, concluding it’s the bile acids that burn.  It’s the acids in foods - the fact that liquids acids spices and  the bad stuff that quickly rushes down to the bottom that both irritate and burn. Unless you can have something first like a binder (be it pasta white bread potato and or psyllium and give it a little time to make a buffer and slow down as well as absorb those things when you eat, they run straight down to the pouch and cause issues.
I’m not perfect at it and yes I do eat more carbs than I should - but it’s nice to know I can have a cup of coffee as long as I have a really thick bagel with it in the morning and not suffer the rest of the morning. The pre-relief tabs help with those things too because of how acidic coffee is. There are many charts on line of acidic and alkaline food (but they tend to differ) however the high acid ones are usually the same. Check them out  hopefully some of the info helps  It really comes down to what you are putting into Your body and what chaos will that cause if you don’t do certain things to counteract.  The most common thing that frustrated me was - what’s left to eat then?
Since we all differ I’m hesitant to write up some things but may do some ideas to “try” for people.  Thanks for responding as it lets me know what I wrote meant something.  

That is so cool that you kept a journal for 20 years! You get to look back on your memories with your J-pouch. I hope you celebrate every year of surgery, I know I do. Its great to celebrate victories.

What you wrote definitely meant something. I am very happy you wrote this, I wish more people did.

FRH, nice that you have been able to figure out what works for you, and I am sure others will find it a helpful guide for themselves. It is always interesting to me how there is such a wide variety of adaptation processes. For example, for myself, I found that psyllium husk fiber worsened my gut symptoms, with increased gas and cramping. I guess I was just sensitive to it. Plus, I am totally OK with fruits and vegetables, including raw. But, that is just me.

For me, it all evolved over time. It is a journey. 29+ years for me.

Jan

That is interesting for sure! About taking the deep breath and things passing though. 20 years is enough for me. Ughhh. It is what it is. If I don’t know what I would do without it and because I have rectocele and prolapse for me to eat raw vegetables is an Absolute killer. I think Imwould pass out in pain. Glad you have had much more success.

@FRH posted:

That is interesting for sure! About taking the deep breath and things passing though. 20 years is enough for me. Ughhh. It is what it is. If I don’t know what I would do without it and because I have rectocele and prolapse for me to eat raw vegetables is an Absolute killer. I think Imwould pass out in pain. Glad you have had much more success.

Can you eat raw fruits and cooked veggies?

I was sitting here feeling a bit hopeless this morning. I had my J-Pouch surgery in February of this year. The surgery and recovery supposedly went great, so I thought maybe I could resume some sort of normal life. Since June I've had 8 blockages, including a pretty horrific one Monday night. I was at my Surgeon's office yesterday and he expressed that this is not normal and perhaps we need more surgery to fix what's wrong (Could be scar tissue or an issue at the J-Pouch closure point). I understand that he's a surgeon and he will think of a surgery as the solution - and maybe it is the best fix. I just wondered what I could do better, because they didn't give me a handbook and how to navigate this.

I read your post FRH and while maybe everything that works for you might not work for me, it gives me a baseline to try to manage this without surgery or Emergency Room visits every couple of weeks. I will probably eat chicken instead of tofu, but I will try to incorporate many of the things you suggested into my diet and see how it goes. Thanks for taking the time to write it.

@teemo Blockages are not likely to be your fault, nor are you likely to be able to make them disappear through diet. It's possible that you could learn to detect the early signs and reduce the misery, but even that is speculative. I hope you find a solution in collaboration with your doctors.

Oh I absolutely know when they're coming.  I haven't had much luck with stopping them though. I do hope there is a solution. I'm willing to try anything at this point.

@teemo posted:

I was sitting here feeling a bit hopeless this morning. I had my J-Pouch surgery in February of this year. The surgery and recovery supposedly went great, so I thought maybe I could resume some sort of normal life. Since June I've had 8 blockages, including a pretty horrific one Monday night. I was at my Surgeon's office yesterday and he expressed that this is not normal and perhaps we need more surgery to fix what's wrong (Could be scar tissue or an issue at the J-Pouch closure point). I understand that he's a surgeon and he will think of a surgery as the solution - and maybe it is the best fix. I just wondered what I could do better, because they didn't give me a handbook and how to navigate this.

I read your post FRH and while maybe everything that works for you might not work for me, it gives me a baseline to try to manage this without surgery or Emergency Room visits every couple of weeks. I will probably eat chicken instead of tofu, but I will try to incorporate many of the things you suggested into my diet and see how it goes. Thanks for taking the time to write it.

How much water are you drinking throughout the day? How much are you eating?

@Mary2017 posted:

How much water are you drinking throughout the day? How much are you eating?

I weigh 170 now (190 before surgery) and not really gaining weight, so I don't think I'm eating too much. Perhaps I could have more smaller meals instead of three normal ones.

As far as water goes, I try to drink enough but I'm realizing I need to better than I'm doing. I tend to drink Grape juice or Cranberry juice with meals and I probably need to just need to switch to a big glass of water.

@teemo posted:

I weigh 170 now (190 before surgery) and not really gaining weight, so I don't think I'm eating too much. Perhaps I could have more smaller meals instead of three normal ones.

As far as water goes, I try to drink enough but I'm realizing I need to better than I'm doing. I tend to drink Grape juice or Cranberry juice with meals and I probably need to just need to switch to a big glass of water.

Okay thank-you for that info.

Here is my take: I have talked with people with J-pouches and ostomies etc. Your blockages may be because of scar tissue but we do not know for sure. Since you said you can work on your water intake, here is my suggestion: If your Drinking a lot of water, please make sure you add salt to your water so you do not lose salt in your body, with my suggestion coming up, I would advise that you put salt in your water if you plan on giving my advice a shot. Drinking water on a empty stomach will help flush out the digestive system. The first thing I do before I eat any meal is drink water. You also want to make sure you drink water with meals and after meals and drink water overnight. I would advise to drink water after each bm since you have a j-pouch- I obviously have an ostomy so in addition to my advice above I drink water every time I empty my bag. I have talked to people that have set alarms to remember to drink water, if you have to do that then whatever works.  Please make sure you add salt in your water if you follow my advice. If this advice does not help you after you tried it, then it is a good chance that the scar tissue is causing the blockages. In addition to all of this, you want to make sure you chew chew chew your food thoroughly and eat slowly. And if you feel full, do not eat on a full stomach. Listen to your body!

Hope this helps! Keep me updated.

Sources:

*There are takeaways about drinking water and chewing food for j-pouches. https://www.youtube.com/watch?v=ykfSHKUWN8c

*Copy and paste this drinking water after each bowel movement and you will find a shit load of info about it.

https://www.everydayhealth.com...0absorb%20the%20salt.

https://www.veganostomy.ca/dea...Preventing_Blockages

Grape juice or cranberry juice will tend to work about as well as water for hydration. Most blockages are not caused by anything related to hydration, though, so we may have allowed this conversation to go off the rails.

Mary. Not sure you will see this.
Cranberry juice apple juice and anything that

has citric acid is really acidic. I would stick to water but like I said there is a balance. Too much liquid quickens transit time. If I do eat chicken I steam it (salt or Italian seasonings only). Small bites. Chew well. Cream sauce or similar non spicy sauce is good) if you add mushrooms chew very well.  Mushrooms corn poocorn Can block. Chew food well. Smaller more frequent meals better than large ones.
I will tell you what I do but each person is different. I drink full glass water with 1 T konsyl fiber 15 minutes prior to eating. Drink small glass of water intermittently with my meal.  Another good way to eat chicken for protein if you don’t like tofu is blending it in a food processor for chicken salad sandwich. There is Ph balanced electrolyte water you can purchase in bottled water section of most stores.
the more fiber content the more water needed (balance)