Jpouch Cream

Hello all.
In Bulgaria is not have cream calmoseptine .
I buy SudoCream,Zinc oxide Cream,locoid lipocream 0.1% but not help about itchs and burn!!
anything make pain burn itchs when eat
its good to buy procto-glyvenol for hemorroids cream for jpouch?
Can give some advice to buy cream to relief me about itchs and burns

Original Post

Hello, Borislav. Some members highly recommend ilex paste for problems like yours. Is it available in your area? Google it and see. If you don't have a plastic bidet squeeze bottle, or a simple bidet hooked up to your existing toilet, then clean the area as best you can with warm water, or a baby wipe, pat very gently. Try not to irritate the area any more or you will increase the itch and burn. Your skin needs to be free of any stool residue. Then apply the ilex paste or other cream. Be sure the area is free of stool and is dry before applying cream. Try to stay away from spicy food or carbonated drinks (soda pop). Have you seen your surgeon or doctor for a check up? Ask him / her if you might have a fungal infection in that area that is causing the itch.  A fungal infection will need a different kind of treatment.  Fungal infection can happen in an area that is always moist, dark. That's easy for j pouchers! Good luck, I hope you can find ilex paste.

If you keep the butt coated in sudocrem it won't get so sore and won't burn so bad. Prevention is better than cure.

You can't get calmoseptine in UK either but I managed to get some from Amazon/eBay anyway.  There's a uk product called anacare that is ok, but not as good.

I guess your best bet is to Google nappy skin care or something like that

https://www.zoya.bg/en/Baby-bo...alm-organic-40ml.567

https://www.zoya.bg/en/Bottoм-Dream-Natural-Baby-NAPPY-BALM-with-Virgin-Cocoa-Shea-Butter.2319

They look a little pricy though.  Might just be trial and error until you find something good?

Hello, Borislav. I have never heard of trofo 5 gel but it must be what your hospital uses for patients. Did you use it and did it work?  

Go to the pharmacist or drugstore and ask them what they have for baby diaper rash. Tell them it's a very intense rash and see what they recommend. Whatever you buy, or if you try some of Bobish's suggestions, make sure the area is cleaned, and dry, before applying anything. Don't apply if your skin is damp because the cream will seal in the moisture and that will make your itch and burn worse. Clean and dry first. 

trofo 5: indications: protects, refreshes, hydrates skin and mucous membranes particularly delicate and sensitive. This prevents redness and inflammation. Suitable for babies, adults, incontinent, lying sick, sports, obesity. It relieves the skin in case of diaper rash, sunburn, seborrheic dermatitis, after peeling, irritation or allergic dermatitis.

can ask something other 

after eat jpouch is pushing me to go toilet but i no go when will stop this pushing three mounths after reversal and have this feeling like is pushing me.

at first operation when i was with ileostomy recovery was 8 mounths and then takedown ileostomy
Diagnosed with fap over 100 polyps found in colon and rectum(removed colon rectum and anus)

The pushing after eating is normal.  ITs called the 'colic reflex' and its worse for J-Pouch because we don't have the storage and flexibility in our new pouches.

If you have a sore butt, it makes the pressure feel more urgent and intense, so you definitely need to get that sorted.  Gas is another reason for the pressure, there are various positions you can go into to expel the gas.  On your knew with butt in the air is  a good one.  Some people do well lying on stomach and then on each side for a few minutes.

Over time the pouch heals and becomes more flexible. so it should become less of an issue.

bobish how much you go to bathroom i am 3 mounths and going 12-18 times to bathroom is good?

doctors  say no meds to drink

efferalgan for pain is have paracetamol(antibiotic like morphine think)

and i dont fart(gas) is good or is something wrong if going to fart i think come out stools

Everyone is different regarding the number of bathroom visits.  I had the Jpouch due to family history issues (my health was good).

I go about 5 times a day, depending on how much and what I eat.  I have discomfort at times but not urgency.

Someone who was very sick before the operation might not have as good an outcome, it depends. 12 - 18 times does sound a lot though.  If there is no reason for it that you know, you should probably see your doctor to rule out a physical issue or pouchitis.

Im sure you do have gas, your stools just sound watery.  If you can firm your stools you should be able to pass gas (lying down at least) which would reduce the frequency further.  

3 months out and still on painkillers does sound strange.  Did the doctor prescribe that?  why are you in pain?  All my pain came from gas but I stopped all medication within 1 month

Do you take loperomide?  how about soluable fibre?  hows your diet?

There is a good chance someone else on this group had the same illness as you to start, they may be able to provide further support

doctors says i can eat everything i have at the only 3 times eat - Morning afternoon evening. 

i cannot drink meds.

Lopermide not drink or immodium

i dunno if i was sick my first operation create ileostomy was 30.05.2016 and healing about 7 mounths and then at 19.01.2017 reversal closing ileostomia if this make me sick?

From time to time is pushing me and its stops then later again is pushing and stopping  ii have the feeling in anus is burning me when is push me.(NOTHING HELP LIKE CREAM OR ANYTHING FOR THAT i buy this painkiller to help but not help very  drink but when pushh me i have that feeling like is burning me or itchs

 

I mean if you had a serious condition like severe ulcerative colitis or cancer then you might not make as good a recovery.

 

if you are going toilet 18 times a day, your skin will be sore.  You need to understand why you are going so often.  Is it because you have pouchitis or physical issue or diet something else?  only you doctor can tell.

I think it is unusual to be on pain meds for so long .  i think you should discuss your concerns with your doc

all the best

i was diagnosed with fap but in colon i was have over 1000 polyps on the colon and rectum (anus) i have too polyps doctors says how i be can in life is miracle that i life in this condition when i was diagnosed i was lot a problems and after create ileostomy is was hard to heal is was have scare in the jpouch and need more time to recovery 7 mounths Pain not have but itches or burning yes

my uncle tell them that i go very often.but they say when come time to visitt (september for pouchscopy) then they said this is all normal with me .in the skin around anus is red for that may be i have itches and burning but dunno

Hello, Borislav.

It sounds like pouchitis. Your frequency of 12 - 18 times, gas, itching and soreness. Is it possible to call your doctor and tell them you are suffering, and request to move your pouchoscopy appointment to May or June?  September seems too far away. There is no reason to suffer, and your doctor's office can try to find room for you, perhaps move a patient who is not as urgent or in pain as you. 

When you feel gas but you are afraid it is stool, just get to the bathroom quickly and go. At least you will relieve the gas pain and the pushing. Sometimes when gas moves around inside it is very painful and the need to go is strong. Don't try to hold it. You'll make it worse by keeping everything in your pouch. Just go to the bathroom. If you are away from the house, always keep a package of moist paper towels or baby wipes with you for cleaning in case of accidents. We've all been there. It is distressing. You are not alone. 

Can you give an example of what you have for breakfast, lunch, dinner?  Your doctor said you can eat anything, but with the problems you are having you need to stop eating certain foods that cause gas, frequency, burning, itching. For instance, I cannot eat cabbage because it will cause frequency, burning, gas. 

I do not think your reversal in January caused the problems you are having now. 

I would stop taking the pain killers if you are not in pain. The pain killers will not stop the itch or gas or burning. You have to get rid of the cause. Pain killers can make you constipated or give you diarrhea. 

Have you tried Metamucil to make your stools more firm? Firm stools are better than watery stools. Watery stools can leak out (you might not feel the small leaking). That liquid can hang around your bottom and cause intense anal itching and burning. Can you give an example of the foods you eat for breakfast, lunch and dinner?

eat everything

this day i was eating

Morning(Breakfast): 10:00

Two slices of honey and butter

after that drink coffe

Afternoon(lunch):12:45

100 grams spagetthi Then baked potatoes

50 grams glass of wine

In the evening(dinner):18:15

Salad cucumbers and tomatoes with roasted potatoes

and Half a glass of wine

my uncle says to doctors that i go very often to bathroom and to drink immodium is good they said immodium It is baking and it is not for that to use.they said no to use immodium 

in bulgaria is not have think metamucil

in morning when i get up and go to eat after that is have watery stools and leakage(while i cannot hold  and is grugling only morning  after eating breakfast)

 

to eat more five times no three times ?

I hadn't noticed that this was posted in the FAP forums.  It may be different for you guys.

As a rule of thumb though coffee can irritate the pouch, wine can irritate the pouch, spaghetti contains tomato so will increase butt burn, salad can cause frequency, you had a second lot of tomato (again the butt burn), and you had a lot of potato which might be an issue if you don't tolerate it.

I think you should find the safe food list and stick to it for a while.  Low fibre low acid absorbant foods

 

Hello, Borislav. 

Bobish is right about the coffee and wine. Let's see if your diet can be adjusted, just a little bit. Just to see if changing food can help you feel better and give your pouch some rest. 

Is your breakfast toast a whole wheat toast?  If it is, whole wheat might be too much fibre for you. Try plain white bread. Or sour dough bread. Honey is pure sugar. Sugar can make pouchitis very bad, can cause severe inflammation in the pouch, and that will make you go to the bathroom all the time, non stop. Can you stop eating honey for a few weeks (until you and your doctors find out what is causing your problems)?  

Instead of butter on your toast (which can cause greasy, loose stool and gas because it is diary), can you try peanut butter, almond butter, hazelnut butter on your plain white toast? How about peanut butter on toast and slices of banana on top? That will help thicken stool, and banana has potassium, peanut butter has protein. Or spread avocado on white toast, sprinkle a little salt. Soft boiled eggs? When I came home from the hospital, all my meals were eggs, white toast, peanut butter for breakfast. Pasta and olive oil and salt for lunch. Steamed fish and white rice for dinner. Slowly I added well cooked green vegetable, but only after 5 or 6 months. I could not have vegetables for a long time. At that time a salad would probably make me faint! Even now I don't eat salad. I did have snacks in between meals: yoghurt, banana on toast and peanut butter. I kept lots of hard cooked eggs in the fridge so I  could have a ready snack anytime. Canned tuna fish on crackers. No seeds or nuts.

Spaghetti for lunch is good. Try not to have it with tomato sauce, for now. Tomatoes are acidic and can irritate your pouch. If you eat tomato skins, that is more fiber. It will make you go. Can you have spaghetti without tomato sauce, just have it with extra virgin olive oil, sprinkle a bit of salt?  Avoid sprinkling pepper on anything because that can burn you even more. Spices can hurt. Baked potato is good for making stools thick, but make sure you remove the skin. The potato skin is fiber. Right now you need to avoid insoluable fiber. Insoluable fiber will not dissolve or break down in your intestines, it will come out whole and it will irritate  and hurt. You want to eat soluable fiber. Soluable fiber WILL break down in your intestines and become like gel, and slow down the number of  bowel movements.  For example, zucchini is good because the flesh is soluable, but you must not eat the skin because skin is insoluble. Steamed or baked fish is excellent for protein. Do you eat white rice? Try not to eat any greasy, deep fried foods. 

I would stop salads and cucumber and maybe try again next year. Salad will increase your BMs all day long. Some people can eat salad no problem, but since you are having lots of difficulty right now with your pouch, avoid salads. Salads can be too hard for your system to digest right now. Does your salad have lettuce? Celery? Carrots? Radishes? Seeds? All too hard.  Cucumber skin is very hard on an irritated pouch. Peel the skin and eat the flesh, see if that is better.  Can you try peeled cooked zucchini, or try some squash cooked very, very well?  Whatever vegetable you try, don't eat the skins. Celery can cause problems - hard. Carrots are all right if cooked very, very well and mashed with a fork. Try to mash your vegetables or cook them a few hours into a soup. Chew everything extremely well.

Send soft food down to your pouch that is cooked very well, mashed, puréed, baked, whatever, so that your pouch doesn't have to work so hard right now. Your pouch needs a rest from tomatoes and sauces, salads, coffee, honey, sugars. When you get better you can try to eat whatever you want, but for now make your diet plain, soluable, soft, nutritious food. That might help give your pouch some rest and time to heal. Right now, feed your pouch as if it is a baby. 

 

thanks i will yes i can avoid no problem

i eat zucchino the doctors says zucchino is good for me pasta (spagethi too) 

yes i eat everything with no skin (skin i remove if is have)

tomatoes with no skin no make problem lettuce no eat only tomatos with no skin and Cucumber with no skin only this salad eat i will try to see if i will have problem what you say i will avoid and try

with jpouch forever we cannot drink beer this is may favorite drink but i avoid carbonated drinks at this time with the time we can drink beer or forever will not drink beer ? 

for this moment doctor say to drink 2 liters water but when its heal then is forever to need to drink 2 liters water?

for peanut butter if i eat will have problem i dont know can make blockage? or anything other

Boris, you should probally avoid beer for now, but I can drink beer without any problems.  In fact any carbonated drinks are fine (cola/lemonade etc).  Last weekend I had 5 or 6 beers and 4 alcopops with a few shots of spirit too and was ok.  It is VERY rare I do this though.  In fact only once since my operation 6 months ago.

 

Drinking water is important and hard.  When I drink lots of water my consistency is worse and I have to visit the bathroom more.   Drink slowly and regularly, prefereably AFTER food.  2 litres of water is the recommended amount for EVERYONE, not just people with J-Pouch. 

 

Peanut butter shouldn't cause you any issues.  Its considered safe for all J-Pouchs.

Hi, Borislav.  Drinking 2 litres plain water can taste boring and is hard for most people to do in a normal day. When you slice a cucumber for your salad you can put 2 or 3 slices of cucumber in a glass of water and drink that slowly through the day. It tastes refreshing and cucumber will add flavour to plain water.

Do you make chicken soups or clear broth? That is a great way to get fluids into your system. Soups and broth will have added salt, which you need right now if you are always going to the bathroom and loosing so much body fluids. Put salt on your food. Not forever, just for now while you are having so many loose stools in one day. You must replace the fluids. That is why your doctor tells you to drink 2 litres WATER per day. Adding salt to food and soups will help to hold fluids in your system. Peanut butter is good for j pouch, and has lots of protein, and will help make stool thick so you don't have to go so much, and leaking or sore bum.

I notice your diet doesn't have very much protein. Can you try to have chicken for protein? How about a piece of chicken roasted with your potatoes?  Eating some protein with spaghetti or rice can help form more solid stool and slow down your pouch. It worked for me. so, try and something different for a few weeks and see if that changes things for you. If it does change things, then you'll know you were eating too many carbohydrates (spaghetti and potatoes). Try to have 3 things on your plate:  a protein, a starch (potato), and a soft vegetable (zucchino!)

Limited diet is for now, just to see how you do. When you are much better and pouch mature, you can put back some of your favourite food. And favourite drinks!

Hello, Borislav. That's great about chicken and potatoes. I wonder if the acid in tomatoes, and the tiny seeds, are irritating your pouch. You will know if this is true when you stop eating tomatoes for a short time, and see if you have less bowel movements in a 24 hour period.

I forgot to mention that if Metamucil is not available in your country, try to get some "psyllium" which is what Metamucil is made of. It could be the ingredient in another brand name. Or try to find psyllium in raw form. It looks almost like sawdust. Try a pharmacy or market or drugstore. Buy a small amount to see if it helps you. Try it for two weeks or so. Mix a big tablespoon it in a glass of water, stir well to dissolve, and drink it down right away. Google it to see how other people take psyllium. Some people drink it before each meal. Others drink it at bedtime, or at breakfast. I hope you can find it. 

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