Hi all,

I am from Australia. I had my colectomy in May 2014 and my reconstruction (take down) surgery in October 2014. I have been struggling with diarrhoea, gas and incontinence. I have recently been to see my surgeon who says I am relying too heavily on medication (codeine and either lomotil or immodium) and should only use it sparingly. He says I am allowing the pouch to dictate my lifestyle and I should train it by holding on more and not going too often. My problem with this is that it hurts too much and I have strong urgency to go. He has also told me to eat three meals a day (my main meal at lunch and a small early dinner). He further says that I should NOT be drinking much water. I notice that in the USA, most advice is to eat small meals during the day and make sure to drink 6-8 glasses of water each day as well. I live in a very hot area and just can't avoid drinking water during summer and I don't believe this is good for me. I do not believe that I have pouchitis. I would be interested in your opinions. Thank you in advance!

Original Post

I find my pouch prefers 2/3 meals a day with a gap inbetween each one rather than eating more times throughout the day. also overeating causes me to go a lot more often. I find overeating also gives me more gas, and its the gas that gives me urgency.

 

maybe you need to look at your diet to reduce gas or take something like gas-x

We're more prone to dehydration than folks with colons, but it's actually pretty easy to monitor this - just pay attention to whether your urine starts to get darker. The advice about how much water to drink should be understood simply in those terms. Yes, if you're doing heavy work in hot weather, you should drink plenty of water, whether you have a colon or not, and under those (obvious) conditions don't wait for your urine to get dark. I do drink a big glass of water in the morning, because I know I haven't had any water in hours.

 

I kind of agree with your surgeon about bowel slowers, though others may strongly disagree. I take one Lomotil at bedtime, and I'll take a couple if I'm entering difficult circumstances (e.g. getting on a boat). Most of the people taking a lot of these don't seem very happy with the results. That may be because the stuff in your intestines will all eventually get to your pouch, whether you slow down your gut or not.

 

I'd suggest reserving the word "urgency" for "I will crap in my pants if I don't get to a toilet." Training the pouch to put up with being half-full might be uncomfortable for you (it sometimes was for me), but in my case, at least, I'm pleased with how that has worked out.

 

Why do you think you don't have pouchitis?

I am so sorry that this is all so confusing and painful for you.

Yes, there are different opinions, techniques and methods of dealing with pouches but certain rules of biology always apply.

Rule 1: Pouochers are at a very high risk of dehydration. We have no colons and our systems a shortened and 'run' quicker than most peoples' so water absorbtion can be a serious problem with us. We generally need to drink more, especially in the begining until our pouches and new digestive anatomy get used to their new functions.

Water is often not enough...you need to add a bit of salt and glucose to it (I make a homemade lemonaide with the juice a couple of lemons or limes, fresh mint leaves, a pinch of salt and some honey or sugar...I keep a jug in the fridge and drink it all summer long...it is refreshing and I get to control how much salt and sugar is in it). Cocnut water is great too and so are some of the commercial products. Do not allow your body to dehydrate...it could be a very serious problem!

Rule 2. Things change. As time goes by you will be able to include different foods and food groups into your diet and adapt them to you and your pouches needs. Some people do great on whole wheat bread and pasta...a largely carbohydrate diet. Others (like me with a k pouch that requires things to be runny to come out of a tube) eat a lot of animal protiens like chicken and fish with small bits of fruit and veggies but very few carbs...it takes time...you need to keep a food diary of what you eat, when you eat it, how much you eat, at what time and with what else (include what you drank with it:wine makes things runny and so does grape juice but apple juice make things thicker and slower for most people for example)...I digest better when I eat a dissociated diet...eating carbs seperately from protiens...when I mix them in a meal things do not digest properly in me and that cause me gas and other problems). 

Your diary will slowly show you how your pouch reacts to food, which foods cause gas and make things run more quickly and which make your pouch happy.

Rule 3. We tend to be lactose intollerant. Most (not all) pouchers have a problem with diary products, especially in the begining. For some it gets better over time and they can integrate cheeses or yoghurt into their diets and for others never...it just is.

Diary is a huge source of gas, diarreah(sp) and cramps...beware...introduce small quantities slowly over time.

Rule 4. There are no rules. We are all different, our bodies are all different and many of us got pouches for different reasons and diseases...so we will adapt differently...take your time and find what works for you...it is a very slow process...if things do not slow down you need to be checked for pouchitis...which can often be controlled through the use of antibiotics but first see what you can do with your diet.

Do not dispair..this is a long road and not a race...the goal is a healthy life with a healthy pouch so take your time...some things will work one day and not the next...that is the interest of keeping the diary.

Good luck

sharon

Thanks everyone for your replies. I will definitely start the food diary. I avoid gas producing foods in my diet but I do have some dairy so I will surely look at that. I know I do not have pouchitis as the surgeon has just done an examination of the pouch and it all looks good and I'm not having that horrible pain, just pain from gas. Thanks again. I will think about all you've said. Kindest regards. Pattie

Am I missing something here?  You are suffering from incontinence, diarrhea, and urgency and the doctor tells you to cut down on bowel slowers and water?  I too am confused.  At almost a year from take down and still suffering from these things and the doctor instructs you not to let the pouch dictate your life?? Wow

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