Hi!

I was dealing with a severe cause of pouchitis and my doctor had to put me on steroids (after trying Cypro and Flagil, it just kept coming back), so I started with 40 mg and I'm on 25 mg now, hoping to keep it decreasing 5mg every 3 days.  My problem is, I'm facing horrible constipation and I'm terrified.  Does anybody there dealing with a similar problem caused by Prednisone.  At this point I heard things on my belly moving and I'm able to pass gas and some stool, but I'm not eliminating enough and I feel bloated and sore on my pouch.  I feel urges but seats on the toilet for long periods of time but not much going out.  What can I do? Any suggestions, ideas would be highly appreciated.  I'm so scared!

Thank you in advance! 

Laurita 

Laurita, the most important thing is drinking enough fluid. I can't tell if you're doing that. If fluid alone doesn't work there are additional things to try, but none of them will work without fluid.

Did Cipro and Flagyl work while you were taking them? If they did, you may have pouchitis that just requires antibiotic treatment all of the time. Prednisone doesn't seem to fix it for most of us.

Thank you so much for responding Scott.  I'm trying to keep drinking my fluids.  Water make me nauseous but I'm forcing myself to drink.  This morning I was too uncomfortable, so I took Miralax dissolved in apple juice (I saw Jan's previous post and she said Miralax is safe for Jpouchers).   Later,  I was able to eliminate some stool.  I'm having a lot of noises and gurgling and even passed gas (big relief) but not feeling empty yet.  One of my many concerns is what to put on my stomach now besides fluids to keep things flowing.  It terrifies me to eat anything solid and go back on the same vicious circle because I can't stop Prednisone inmediately.

I been dealing with Pouchitis on and off, and Cypro worked for a while, then not anymore.  Flagyl burned my stomach awfully, that's why my doctor put me on steroids as a last source, but I know as long as I'm taking Prednisone, I'll be constipated, so I feel trapped , please help! 

As a reference about me, I had UC for 22 years, after two years long flare up and trying all possible meds (including Remicade and Humira) my colon was removed (3 stages) and got the reversal in Feb/2014.  My first 6 months with the pouch were great, but 2015 and so far 2016 I'm having too many Pouchitis issues.   I just refusing myself to give up on my JPouch, but I wonder if too many Pouchitis incidents will eventually deteriorate or weak my pouch.  I'm so depressed about this whole situation.

There are other antibiotic choices for pouchitis besides Cipro and Flagyl, Laurita. A partial list would include Xifaxan (expensive), Levaquin (like Cipro), Augmentin, Tindamax, doxycycline, amoxicillin, and Ceftin. Jumping to steroids before trying every one of these may not get you the best result.

Thank you Scott, you're being so helpful, and you're absolutely right! Steroids was the last on my list specially because they caused me severe bone damage on my hips (I have hip replacements in both sides), so I know I'm walking on very thin ice.   I think I put too much pressure on my doctor when he decided to put me on steroids because I need so desperately to feel better.  I will like to discuss that list of antibiotics with him.

Right now I'm dealing with this Prednisone-constipation, but so far I'm being able to eliminate with the Miralax help and that is giving me a little peace of mind. 

I had my take down in May 2016 . I sometimes feel that I don't empty my pouch completely and I feel soreness and tenesmus down there . Could it be pouchitis . I can't see my old doctor as I have moved to a new place . Have to find one soon. 

I thought you weren't supposed to have fiber or fruits and veggies with a pouch?..

This thread is 12 months old, but fruit veg and fibre are fine for jpouch if you can tolerate them.  Your new insides need time and practice with veg and fibre, I think most people try it once it twice then give up, but normally I have a vegetable smoothie and wholemeal or multigrain sandwiches for lunch.

Today I had spinach, celery, broccoli, kale and sweet potatoes (with skin) basically cooked down and blended into a soup.  This made about a litre,I had half today and will have half tomorrow.  I've also just had an apple and a banana, and earlier had some left over quorn chilli (vegetarian) with a 5 bean salad mixed into it (peppers and all sorts).  And ím not a vegetarian.  

I definitely have more bathroom visits on fibre and veg, but then so do people with colons.  I go cos I need to go (is the pouch is full), because veg and fibre is very high residue, more bathroom visits are required.  Taking psyllium husk just before the soup shows things down and actually seems to do wonders for hydration too

Tonight I'm making a pizza with chicken instead of bread for the base (is a slimming world recipe as the missus is downsizing lol).  This will have garlic, tomatoes pepper pineapple and salami on.  I honestly reckon eating veg regularly has helped me make such a good recovery, or maybe I am just lucky.  Either way, make hay while the sun shines . Don't avoid a good just cos others say they had an issue with it, you should probably make up your own mind

Last time I had blueberries I got water runs out of control.  Doctors will tell you no fiber.  I'm amazed you can get away with it.  I'm very constipated right now and don't know what to do.  I'm taking anti biotics for pouchitis which we really don't know I have.  That causes constipation.  I haven't gone for 3 or more days.  I just don't know what to do.  Took Miralax last night and this morning.  I'm afraid to eat anything.  Do you eat pancakes?  Thanks for sharing.

Oh and I've had the pouch since the mid 80's.  It just stopped working due to radiation supposedly.  I have and anal dilation on Monday.  Don't know if that will help.  Seriously considering ileostomy.  How long have you had a pouch?

Well you have a lot more experience than me, I'm 8 months out.  Docs say a lot of things, not all of it is right. Docs advice is usually based on statistics rather than conclusion drawing from a specific patient.  That has been my experience anyway.  To start my body fought fibre and veg, now it doesn't seem to mind, in fact I'm sure the veg is basically healing sludge that reduces inflammation!  I held remission of UC for 15 odd years with no meds with juicing.  My JPouch was deemed necessary because I was 40 and had long term UC and a lump they thought was dysplasia (it wasn't)..

Without wanting to be flippant, if blue berries effect you so bad, couldn't you just eat a few to sort your constipation problem?  As I'm sure your aware most people with JPouch are frequent visitors to the bathroom.

You could perhaps try some magnesium based laxative. It's gentle and she for long term use.  Taking 8 would have a 'blueberry' effect but taking 2 would probably give a much more civilised response.   I'm thinking colosan or oxypowder.  If you want to keep it old school Epsom salts would probably do the trick too!, Same stuff in a slightly more horrible tasting form lol.

And yes I know I'm lucky for a poucher, I had an ace surgeon and good after care but I like to think I have at least contributed to that luck myself, restricting sugar and yeasts and eating healthy nutritious foods. I also take probiotics.   Maybe it's all quack, but I can only share my experience and hope that it doesn't bite my on the bum at a later date.  Also I didn't have severe complications others did, for example no radiation treatment, undoubtedly that helps.

I can rest pancakes no problems, but I wouldn't really as there is no nutrition in it, just sugar and white flour.  My doc never said no fibre.. he said "try stuff and see how you get on, fibre may be a problem".. indeed it was too start, seems to be better now, as long as I remember 1 loperomide twice a day and fibre before my soup/smoothie...

I had 2 blueberries and it did help with a tiny bm.  I was thinking about having a baked potato and some green beans for dinner?  I'm afraid to have any salmon since its solid.  Maybe I should quit the antibiotics since flagyl is constipating.

If you take loperomide, that's just like imodium, which keeps causing me constipation after a couple days but maybe because I eat no fibre.

Do you eat meat?

Yeah I eat meat, my staple is turkey or chicken,  but beef prawns and fish too.  I don't avoid lamb, just didn't crop up much, in fact lately I've been reading more ostrich or kangaroo as the local butcher is diversifying lol   I eat mushrooms, corn on the cob, popcorn much as I like (and I'm a lousy chewer).  My one restriction is spicy food, but that's only cos of the butt burn.  I can have 1 chilli in a stir fry or a mild to medium curry but no more!

I wouldn't quit the antibiotics just yet if your supposed to be taking them.  You could reduce the amount of loperomide, drinking more water (don't worry too much about sipping it, but obviously try not to swallow too much air with it).  Drinking water more quickly means the gut doesn't have time to absorb it all during transit, so it's looser.  If you drink water too fast you may swallow air though which would lead to gas pain.

Maybe the doc have you specific advice of foods to avoid for a reason?  If so you should probably adhere to that, if not then why not try something new?  You want a change.

Assume you are on flagyl for bacteria issues in the gut.  Quick disclaimer, I'm not saying this is medical fact, A lot of people will say this is quackery but im down with it.  This is basically the 'Candida overgrowth' advice.  Bad bacteria grows in a carbon dioxide environment, it ferments into poisonous by products.  A oxygen rich environment reduce the growth bad bacteria and fermentation.  So foods high in sugar and yeasts etc should be eaten sparsely.  Fibre helps scrub the walls of your bowel keeping then nice and clean, water flushes it through etc. The magnesium products I suggested also help 'oxygenate' the bowel (at least that is their claim)

The concern is whether you eating more fruit would contribute to the bad bacteria issue.

Blueberries are very acidic and sweet (even for a fruit) and have a tough skin, so potentially not the best starting point.  I would say that was an advanced fruit.  If you haven't had any for years you will probably react by getting gas, because you won't have much of the bacteria in your gut to help digest this food. With practice that should get better

I rely more on veg.  I hated the savoury nature of veg and craved the sweetness of fruit, that was basically habit and withdrawal symptoms lol.  Cook yourself some veg, then blend it up into a soup.  Go easy on the greens to start as they do cause gas, especially if not fresh.  Perhaps start with something like carrot, sweet potatoes and spinach and see how you get on.  

you want to be gentle with yourself, but consider if any pain is just a bit of cramping from unfamiliar food or gas from a food that your body isn't used to working with. I don't want to say be persistent, but don't give up at the first sign of difficulty either, after all you want change, so you need to do something different and there will be an adaptation period.  

It's only food (and healthy food at that) so you shouldn't be able to do yourself any harm with it, unless you know you have an allergy or doc has specifically told you to avoid a food.  The biggest problem is a blockage, but if you blend that won't be an issue.

Sorry for going on, as you can see I find the topic interesting.  Go easy and let us know how you get on. ��

Thank you so much.  I'll see what I can do here.  I had to quit the flagyl.  Too hard on me.