Probiotics and dietary advice

VSL #3 may help reduce pouchitis recurrences. It’s pretty expensive, mostly because it’s a very high probiotic dose, but some insurers cover the prescription-only strength (Double Strength / “900”). I take the maximum dose and it seems to help keep pouchitis at bay for me.

”Pain” is simply too general a problem to get useful answers, I think. With enough details added you might find some help here.

Thanks Scott. I'm new to this forum, and trying to save the graphics but if it helps here goes....the pain is rectal. Burning, sharp internal stabs, emptying is inscruictiable and wiping is out of the question. No hemmies and/or fissures so am picking its a pouchitis/colitis thing. Am awaiting a MRI and balloon procedure but need to make lifestyle changes asap so as to avoid further damage.

Do you use any cream after emptying the pouch ? I use sudocrem religiously to keep the skin burning away. I take 2 tsp pysillium husk to thicken up stool. It gives the right consistency to me that way. 1 in morning after breakfast and 1 after dinner. Also anytime my stool is too liquidy or hard to control I just cutoff some trigger foods like dairy,sugars,fried stuff and switch to food like oats,bananas,brown bread,eggs(boiled). I also take VSL3# but occasionally and I sure do feel a little better with it. Any other probiotic so far gives me gas so I dont take or recommend them.

Hi Mel, 

Welcome to the site.

Although I have a k pouch (same pouch, different exit) I still have almost the same difficulties in digestion, only backwards. I need my output thin, which means that it is more acidic. 

What I have learned to combat both digestive problems, pouchitis and other similar issues is that a dissociated diet helps. (no it is not a cure-all)

I learned about it in 1991 when my pouch was 12yrs old and there were no forums or available help other than, figure it out yourself.

The principal was simple. Separate your food groups into 5 main groups. 

1. Proteins: Meat, fish, chicken, eggs, all animal proteins

2. Carbohydrates (starches): breads, cakes, pastries, pastas, rices, potatoes and any other starches that you can think of.   Ex. pasta with tomato sauce, a tossed salad and grilled eggplant. Or a veggie sandwich with salad, tomato, mayo, onions and avocado.

3. Fruits: all fruits are to be eaten either in the morning on an empty stomach or up to 1/2hr prior to meals. Do not eat fruits after meals on during meals. I do cheat and bake apples with some chicken or turkey dishes but other than that I stick to it.

Vegetable: all green, yellow, red, orange veggies plus nightshades like eggplants and salads.  free to be eaten with any meal

Fats: butter, olive oil, any oils or fats etc....free to be eaten with any meal

Firstly you choose either proteins or carbs for your 2 main meals: lunch and dinner. You can have as many veggies (raw, cooked, baked, steamed...) and fats with either. They are free: ex. baked potato and salad or like last night, green beans in sauce and steamed artichokes with baked chicken.

They discourage dairy because it is hard to digest, causes bubbly output, gas etc

In the mornings I drink  3-5 coffees black, have a large glass of juice, another of water and my vitamins. I eat a banana or other fruit around 10ish and then some more at 11. You can mix and match according to season and tastes. I prefer seasonal fruits for freshness and maturity. 

I tend to eat protein meals at lunch and carbs at dinner only for ease of digestion at work so I do not have to use the bathroom. 

This system works well for me and many others. It helps me to control my digestion and weight although I have just 'fallen off of the wagon ' recently while working out of the country...harsh. At any and everything like 'normal' people do...I am paying dearly.

Back on the wagon as of Tuesday and things are improving greatly.

The system, as I said, gives me supreme control of my digestive process, but that is me and my problems. I digest very well this way, can eat most fruits and veggies without difficulty and do not suffer from pouchitis or gas very often. 

It is free to try, easy to follow and requires no investment of money or special time. 

Sharon

Sharon, that is the most helpful advice i have ever received. Than you. I will be throwing myself into it tomorrow. I like to exercise a lot and lift heavy weights, the consume a protein shake. Have you heard of anyone else taking Protein Powderm

Hi Mel, I had my pouch removed this month because of a fistula and an abscess but during my 16months as a j-poucher I found out some things that were helpful to reduce/avoid painful output.

I always took one tea spoon of psyllium husk after each meal, if I forgot it once in a while I would pay with butt burn almost every time.

I strictly avoided potatoes and tomatoes (especially cooked/marinara sauce) as these caused the worst pain on their way out.

I also found out I needed to limit my sugar intake and stayed away from gluten most of the time.

For skin care I always used wet wipes or water and limited the use of dry toilet paper and afterwards I would put a small amount of a barrier cream on that area to protect the skin. 

My pouch was quite „young“, so I don’t know if these recommandations can help you but I hope you‘ll find out soon what works best for you and your body. 

N.B. I took VSL#3 for a while and at first I had the feeling it helped to keep inflammation at bay, but after some weeks/months I didn‘t feel the positive effects anymore and suspected it to give me painful gas, so I stopped using it. 

Hello, Melfie. To help protect from skin burn and irritation, see if you can invest in a bidet that you attach to the toilet bowl. It does not require electricity, you just hook the bidet to the existing water lines next to the toilet. It costs $50 to $100 on Amazon and there are tutorials on installing it. It can help heal fissures if you get one that uses hot water, as well as cold water. 

Melfie, your pain sure sounds like an anal fissure. How was it ruled out? Sometimes a second opinion can be very valuable.

Wow thanks everyone for the amazing advice.

Scott i had a sigmoidoscopy last week and they have ruled out a fissure. Plus i have had two different drs examine me. Im now booked to have an MRI scan and then the stricture procedure. Unfortunately things dont happen fast here in NZ so i have a 6 week wait (gulp)