NEW J POUCH FOR WIFE - POORLY..NEED HELP

There are a couple things to try:

- temporarily modify diet to exclude any wheat products; This causes a lot of gas;

- Avoid sugary products (junk food)
- do not eat nuts at all

No as for feeling to go to the toilet - you need a barrier cream; something with zinc like stuff used for babies with rashes

There is also a compound cream that stops spasms of the sphincter 9this appears to be the issue for your wife); Sphincter spasms give the sensation of going to the toilet; It is nefedepine mixed with vaseline (petrolium jelly); you apply it to the anus (just like the barrier cream)

People have had success with calmoseptine (barrier), ilex (barrier), hemmorid creams, etc.

In additon, she could try anti-biotics to go with this - flagyl and ciproflaxin;

Also, she might want to try metamucil; this will reduce the water in her stooll considerably

Please remember that I am not a doctor and this is only advice; if what I suggest works, it will probably take 3 days to feel better

I am not certain what is available over the counter and what requires a prescription; I have had very good success using a barrier cream as well as the nefedepine solution

Good luck and please contact me if you require more information or have any questions

Rest assured that she will heal and things will get better.

You have good advice above. What you describe sounds like she had an anal stricture, which could have reformed since the procedure. It does not happen this quickly usually, but I've heard of it happening within a couple of weeks after dilation, epecially if there are other forces to shrink the opening, like swollen hemorrhoids.

I would recommend hemorrhoid ointments that numb and soothe the tissues, to help be more comfortable, along with sitz baths 2-3 times a day.

Antidiarrheals, bulking agents, and the food restrictions mentioned above. Safe foods are applesauce (no juice), rice, banana, chicken, and potatoes. Many people can become intolerant of wheat and other sources of gluten after intestinal surgery, milk products too.

Hope she gets feeling better soon.

Jan

Thank you all that replied. We will try some of the tips. I take it nefedine cream is prescription only? I will mention it to the doctor when we go to see him. Would you recommend avoiding Jelly? I understand Gelatine helps bind but the sugars may be causing my wife problems.

How long before all this calms down she has already lost 2Kg. I do appreciate the advice and so does she. Thank you all

In Quebec (Canada), nefedepine is a prescription ingredient.. I do not know if this is the case in the UK. In addition, there is a nitro based solution (mixed with petrolium jelly) which does the same. However, in some individuals it causes headaches, so I used nefedepine because I could not tolerate the nitro solution.

Ok i'll mention it to the docs. Is it normal for het not to be comfortable at anytime during the day she constantly needs the toilet and lies on the sofa all day(not like her at all).

Is this amount of weight loss normal?? She looks pale and wants to give up.

We still have immodium and codeine from the stoma days would it be worth trying these or waiting for the doctors say so?

We never expected this to be the hard bit, the consultants made out it was a doddle.

thanks again everybody.

My second and third weeks were very difficult after take down. It actually sounds like she is doing pretty well compared to many other people.
It is important that she reminds herself constantly that what she is going through is temporary.

I would stop the marshmallows, udon noodles and pasta. If she has hemmoroids, you do not want to increase the need for any straining or pushing. I use a lidocaine ointment to numb hemorrhoids. My surgeon said not to use Preparation H after takedown. A gauze pad covered in Calmoseptine and left in place can provide immediate relief.

It will get better. My lifesavers after 10 days were: 1. Questran (a prescription) to bind up the acids in body waste; 2. Balneol (over the counter) on tissue for cleansing and soothing; 3. Calmoseptine cream (also available without a prescription) for helping treat any skin irritation and protect from further irritation; and Epsom salt baths were heavenly for pain relief and relaxation. A heating pad also helped with any abdominal pain and cramping.

If you are like my husband, the most frustrating problem was figuring out what to feed me.

I stuck to a low residue diet. I did well with Miso soup without nori, small sticky rice balls eaten slowly, chicken yakitori, cream of rice, shu mai and sake (salmon not the drink), maguro, and albacore tuna sashimi. I confess I also enjoyed tomago. I had problems digesting nori, mushrooms, shellfish and any cow products. I had trouble with udon noodles. The buckwheat was too hard for me to digest. I had no problems with rice noodles. There are many low residue Japanese Foods. I have eaten sushi my whole life. It is one of my comfort foods. You just have to be careful to choose the easy to digest fish.

The University of Tokyo Med School used to have a list of low residue foods on line. The list is written in Japanese. They also have a post j-pouch surgery on-line guide. I didn't read it but I would assume it is pretty thorough. Their GI department is excellent.

Basically you need to keep her hydrated and comfortable. Everyone loses a little bit of weight during the first few weeks. She will gain it back once she feels better.

I found walking as much as I could each day helped make me feel more comfortable. I wore a Depends adult diaper when I went to walk outside. I never really needed it but it was nice to have the extra security. She may need to wear the ones designed for teenagers if she is small such as a size 0 or 2.

Call her doctor if she develops a fever, unremitting abdominal pain, or her urine output drops dramatically below normal. These could be signs of infection, blockage or dehydration. These are somewhat rare but important to know about.

I hope she feels better soon.

THANKS AGAIN TO EVERYBODY..IM AMAZED AT THE RESPONSES AND ITS GIVING US HOPE.

I phoned the hospitl today and they suggested we start immodium annd i think my wife is goping back to her roots and going japanese far as the diet.

We've sacked off anything with citric acid in it for now.

Subzeromambo you seem to like you japanese food i've told my wife to check out the Tokyo Uni site you mentioned. You are right im frustrated because nothing I do seems to help - we just want a normal life again. Looks like Xmas this year is a write off....but we are staying positive.

I'd like to thank everyone who has helped (FRH, Solomin, Jan and SubZeromambo) and has just read the post..it all helps.

cheers and merry christmas

thanks again. I'll avoid the shell fish and tuna (maguro)..with the price of tuna in the UK that shouldnt be too hard.
thanks again

Hi. Sorry about your wife feeling so poorly.I had the same surgery about 3 weeks ago and feel rotten a lot too.Not as bad though.I have been using Zanthum Gum to thicken the stool and calm down the intestines. It works better than the anti-diareah medicine. Calmoseptine helps with the burning.

Cheers mate. I appreciate it. I'll have a look for that gum, how do you go about using it? I think the main problem is the feeling of going, she hasnt got any other problems really. Nurse said it might be spasms. I hope youre doing ok..and have a good christmas.

It is very normal to feel like you have to go all the time after takedown (it is very annoying to say the least). If she could rinse her tush off after a bm that will help alot. Bidets work really great but if you don't have one a squirt bottle with warm soapy water helps alot. Our poor rear ends really do take a beating. I hope she continues to improve each and every day. Happy Holidays.

I hope she has stopped the marshmallows because that can stop things up for many people.

Japanese food is my family's favorite ethnic food. If I could, I would eat it for every meal, every day. I would agree with the poster about avoiding shellfish. I have done all right with scallops but ebi was a problem.

Xanthum Gum is usually found in the baking section of stores that include gluten-free baking supplies. It is not a gum that you chew but a fine flour-like substance. I combine it with rice flour to make things like gluten-free bread, biscuits and cakes. I have never heard of it being used as a binding agent.

I would check with her doctor before adding any bulking agent to her diet. It is too easy to develop a partial blockage. Partial blockages are very painful but usually pass within a few hours.

I am sorry that your holidays have been so rough. Sometimes it is better to measure improvements weekly rather than daily.

I hope she feels better every day.

Szm

thank you, glad you like japanese food.
christmas day was a nightmare, she cheered up slightly when the pressies were broke out then went back to the constant urge.

Gonna go Docs and see if he can prescribe something for the constant need for toilet but nothing being there.

Is Bread/Wheat something to avoid, i know its been mentioned on here but the nurse said bread was binding and to avoid Apple sauce...wha go on?

anyway Ta all

Bread/wheat could pose a problem if your wife has celiac disease (gluten intolerance). Otherwise, it should be fine for her to eat and might help thicken her stool. Bread helps me a little with thickening, but powdered fiber (1 tsp/day) helps more.

It took lomotil and tincture of opium to get my bowels under control before I left the hospital. The pouch spasms were horrible even with these drugs. I noticed a slight improvement after 3 weeks, and a marked improvement at weeks 5 and 8. I hope your wife sees improvement faster than I did, but she may have to have patience for a few more weeks till the spasms abate.

Good luck!

Each of us is different plus our bodies react differently to foods as our pouches mature. I cannot eat wheat but I have no problem with other gluten products.

Applesauce did nothing to or for me. We kept a food journal to keep track of my reactions. Six months later and the list is still changing. There are many things I could not eat in the beginning that I can eat now such as pepper.

I wish I had a magic list for you to follow. Just keep it simple and keep experimenting. My safest foods were chicken, rice, eggs, fruit protein smoothies, and spelt toast. If she can tolerate bread then go for it! You might be too young to have experienced this, but we used to have toast soldiers with our eggs as a treat.

Mish-Mash was another treat you do not find in America: two soft boiled eggs in a bowl mixed in with diced pieces of buttered toast, two diced pieces of cooked bacon and covered in boiled or steamed milk. Sprinkle a little salt on top and serve. My children still love it.

Just Read bout your wife, I was the same as her and immodium etc never worked, I was going 20 times a day for months, then I took Panadeine Forte for other pain and it was like turning off a tap, halved the amount of times I went, its the codeine, so if the other stuff like immodium doesn't work, get the GP to give her codeine, it really worked for me, now take 8 x day, have to have liver tests quite often tho, but in my case its been a life saver,and it works for alot of people too! Hope she feels better soon, Heather (ex Londoner)

Hi, we've got loads of codeine phosphate from when she had her loop.
We'll give it a try, I take the liver tests are for long term Codeine use? What dosage are you using? Thank you

Hi again. My wife has been experiencing pain in the left hand side near her hip area and in her belly. She said its been coming and going. She describes it as a sharp pain but.not excruciating. She's convinced she's got adhesions. Might take her A&E (ER). Any ideas anyone?

Seen,

I am just reading your posts and since your last post was over a week ago, you may have already taken your wife to the ER (AE). Is she feeling any better?

~Tammy

I've been taking 8 panadeine forte daily, just had the liver test repeated and its stable so just gonna carry on for now.Its because of the paracetamol part I think that I keep having to have liver tests. None of the other meds worked on me, had them all by the truck load.How's your wife feeling now, any better? Tell her not to get depressed, it can take a while for the body to adjust to the pouch, not the miracle take over the specialists believe, Heather

Every time I feel as though I have to go and know that I don't have to, I take a glass of water with psyllium fiber added to it. I don't why it works, but it does. It takes away the feeling and makes my stools more formed. Anything is worth a try, right? Good luck. I had a hellish time for six months and now have had a successful seven so far.