Geez Pam. I am sorry to hear this. Have you tried 2 Imodium in morning and at night? Are you have abdominal pain? 

If you aren't still taking antibiotics I would check on that. Maybe you could still have some pouchitis symptoms flaring things up? Also, you should probably keep communicating with your doctor, maybe you can get prescribed immodium. I like potatoes and rice to thicken things, chicken breast are also a good way for me to get protein.

I am sorry it is hard, it is a frustrating process and you are not alone! I hope you can find some answers soon. 

I used to take immodium and they stopped working so Dr put me on the lomatril...I take about 12-14 a day of those.

Sorry ..No abdominal pain at all... It's just my bottom that hurts.. Horribly..Now getting weird lumps on it..

My pouch is basically hopeless other than surgery the thing I found best is one large meal at lunch, fast in the morning and at night, then at night have some prune juice (this clears the system) and then more immodium, that's about all you can do to try and sleep through the night and not have accidents all day.

You'll be able to gain weight, because we want this to be a large meal with many healthy fats, and then honestly.. I know this sounds weird, but fuck it. I found pop personally a good way to get extra calories throughout the day, coke and pepsi personally.. it sucks but what can you do, a jpouch is hell.

So as such, get your vitamins and minerals and you can via a liquid or easy to digest form, and try this before surgery (worth imo) there's not much you can do, I found all juices and milks just go right through me, so you are kind of left with pop for calories and some healthy fats and then a large meal at lunch and then prune juice and water. Oh yeah green tea is good ^^

Pams86 posted:

I used to take immodium and they stopped working so Dr put me on the lomatril...I take about 12-14 a day of those.

12-14 a day? is that a lot?

That seems like too much, have you tried anything else? I've heard some people swear by tincture of opium if you can get ahold of it.

Pam, sorry to here your suffering.  I assume you have the all clear from pouchitis and cuffitis, and you are still left in this position?

Ive included some ideas below, many i got from this website but please consider this friendly chat rather than advice, because im not a medical professional and i would hate to be responsible for making you worse. Also i know pride comes before a fall, im only 3 months out myself, too short for me to be claiming this is the way to do it!! lol.  i actually do most of whats list (except i have a full range diet and dont have a bidet).  

The most controversial one is the Veg.  A lot of people say they struggle with beans and veg.  I did to start, but now it doesn't bother me at all.  prior to my jpouch i had UC but i managed it well (i believe thanks to the veg smoothies).  i figured having a total proctocolectomy shouldn't make me allergic to a natural food source, so i persevered and seem to have adapted to it now.  Im not saying everyone else is mistaken, just don't take it at face value that you cant have a diet heavy in veg and legumes, and if you can there are definite benefits.

1) Ensure every meal is a forming food.  Keep it basic, avoid too many artificial additives etc and keep a food diary.  avoid anything spicy. Try to use foods on the allow list from when you had the ostomy to start

2) Take psyllium husk or some other soluble fiber to help bulk.  

3) Sip your fluids throughout the day

4) Take your lomitil etc at regular intervals

5) Take a really good quality probiotic.  VLS#3 or Symprove are the 2 biggies i think

6) Eat lots of Veg if you can, preferably in a smoothie as the nutrient sludge will help heal your gut.  It took me several weeks to get used to the veg, and at the start i felt it really disagreed with me, now it doesn't bother me.  I just drank 2 pints including Apple,Banana, Spinach,Kale, Avocado, cucumber and carrot all blended together.  It tastes ok actually.   Since i started doing this i notice i pee more, in other words i seem to be absorbing liquids better, perhaps because my fluids are 'thicker' and stay in the gut longer?  I try to use organic where possible.

7)Take meal replacement drinks to get your vitamins and minerals.  You can mix these with water (if milk upsets you).  they are still delicious and have calories too.

8) Avoid the fizzy drinks!   Is introducing artificial sugars and gas into your digestive system a good idea at the moment?

9) Consider taking a gelatin supplement.  Gelatin is high in protein (good for Jpouchers) and also good for digestive health.  It also thickens a bit

10) Use a portable Bidet and a good quality cream like calmospetine.  Its amazing how having as sore bottom can add to the feeling of urgency.  I recently went away for the weekend and had a very spicy kebab (it was late, nowhere else open).  the next day my frequency doubled purely from the spice irritating my bum

11) supplementary products like Beano to reduce meal time gas, Buscopan to ease cramps and simeticone for general gas might help.  They are all cheap, but as always your mileage may vary

12) try to stay active.  The rhythm of your gut is greatly influenced by your activity level.  Walking is a very good exercise.

In theory your Jpouch should have a similar capacity to your ostomy bag, with the added benefit that the Jpouch can absorb some fluid.  This means, if the pouch is working effectively you should be going to the loo less times than you emptied your ostomy bag.  If your going more, that suggests some sort of irritation and inflammation, hence its important to rule out Pouchitis and cuffitis.  If that is clear, then using the above will hopefully help support the gut lining and calm it down

Hope that gives you some ideas.  

Hey, Pam.

I've had frequent flares and urgency ever since I had my j-pouch surgeries 6 years ago.

For me, immodium often doesn't help. I've tried a lot of meds and diets that just don't help. Even if you're doing everything right the best you can, sometimes it just doesn't help. Hopefully you'll have better luck.

The previous posts have a lot of good suggestions and things to bring up to your doctor.

One thing that's helped me sleep and get out of the house comfortably, though, is wearing Depends-type adult diapers. It was a huge blow to my ego. It was a line I never wanted to cross. My wife suggested them and gave me the nudge. Now I realize wearing them takes a lot of stress out of every day. At home, in public, at work.

And, yeah, at first I was pretty embarrassed to just buy them. I still get self-conscious. But screw that. They don't solve the health problems, but they help live with the effects.

Before, I was thinking of getting back on the bag. My symptoms might not be manageable. My life is much more.

Hi, Pams86.

In these early days when your pouch is young and learning how to live its new life, see if you can eat simple, whole foods (no highly processed foods). Cooked white rice, potatoes, toast with peanut butter, soft cooked egg, fresh steamed fish (no frozen fish fingers!), plain baked chicken with salt, pepper, olive oil, plain tea or water. Look for food that is nutrient-dense and help thicken your output so it doesn't burn your skin.

Keep your diet as simple as possible for now. No spices, no vegetables unless you can peel the skin. Eat just the well cooked flesh of the vegetable. Zucchini is great steamed, just peel it first. Beans are good because the inside flesh is soluable fiber (thickens into a sludge and slows down output) but remember every bean has a skin and that is the insoluable part that can irritate because it comes out whole, barely broken down. Maybe beans can be tried in a few months when your pouch matures a bit more? They are packed with protein and fiber. Baked or microwaved potatoes are good, just remember to peel the skin and eat only the flesh, mashed with olive oil if you are trying to put on weight. Avocados are a soft easy food, spread on toast for breakfast and sprinkled with salt. A good source of healthy fat. 

Are you using a travel bidet or have an attachable one hooked onto your toilet?  That will clean and save your poor skin from the burning fire that makes it hard to even sit on a soft sofa. In my early days I had to stop using Calmoseptine because the menthol burned a little bit, and switched to Zincofax for babies. I still cannot eat citrus fruit or vegetable skins.

Be patient, get lots of sleep, eat plain foods, walk outdoors everyday even for 20 minutes, weather permitting. Your pouch is still trying to learn its new life. It started out as a small intestine, its only job to absorb nutrients for you, then suddenly someone performs major surgery on it and it is expected to be a sort of colon. It's a big change. I hope this helps, and you feel better.

Thank you so much for the advice.. I will definitely give it a try. I hate to think I went through all those surgeries last year all in vain

Thanks again

Pam