Bad J Pouch

quote:

If i eat anything else it goes straight through me within a couple of mins of eating it.

Are you taking an anti-spasmodic before eating meals? It sounds to me like you may have a spasmodic pouch/bowel and should be taking lomotil, bentyl or similar. Have you discussed this with any of your doctors?

Have you tried getting a consult at St. Marks?

Sue

I am Lopermide which is ment to thicken the stool, iv not heard of spasmodic pouch? What is it please?

And yes it was St Marks im with now x

quote:

iv not heard of spasmodic pouch? What is it please?

It means you have excessive motility in your bowels causing food to go right through you due to said excessive motility. This was a problem for me in the year or two after J Pouch surgery. It is resolved by taking anti-spasmodic drugs. I am very surprised that none of this has been mentioned to you by your doctors if you are articulating your symptoms to them as you are to us. You should be taking bentyl, lomotil or donnatal, the anti-cholinergic or anti-spasmodic drugs. Loperamide is an anti-diarrheal and it does not help you with motility issues.

Have you tried fiber supplements? I've used Metamucil wafers with great success. I don't believe they sell the wafers in the UK but they sell the powder. Benefiber and Citrucel are also fiber supplements that might help.

How much loperamide are you taking? You can take up to 16mg per day. If you're not taking that much, maybe you could start slowly increasing the amount to see if that helps. If you decide to try both the fiber and increase in Loperamide, try one at a time so you can discern which is helping you.

Another thing that's been mentioned here is Irritable Pouch Syndrome. I'm not sure if that would show up on a scoping. But the treatment is antidepressants. All antidepressants are not the same so sometimes it takes trying several different ones before you see results.

I'd recommend trying some more things before giving up the pouch (even if the 6 weeks come and go) since it's in good shape.

Hopefully others will be by to give advice on things to try.

kathy

Fiona-
Stop drinking tea. I know you are English... but caffeine and/or hot beverages can definitely increase your output. Switch to an electroylyte beverage. I think in the UK they have something called diorylte.. its like pedialyte here. Stay away from sports electroylyte drinks because they are full of sugar. And DO NOT drink while you are eating. Just have sips of this beverage throughout the day.
Also have you had a defecogram? This is a test in which they view your pooping while its happening. This helps them figure out if you have any "mechanical problems" with the pouch. Is the pouch acting properly while things are moving through it?
Also has anyone checked you for "short bowel" syndrome? And have you had your minerals and things checked regular - say..magnesium, zinc, iron, etc.. Things that can cause you to feel poorly if they are not correct.
Also there are many other ways to bulk up the stool - yes to loperamide up to 8 a day with the US dosage. Make sure you are taking it 30minutes before you eat. Also BENEFIBER... has been far more successful for me than the citrucel, metamucil,etc.. Its a different kind of fiber. And also Nexium also can help slow transit.
I would suggest you find a doc to help you figure out how to slow down the transit time, alleviate your dehydration, and monitor your blood work. Focus on that AND having the jpouch mechanical work evaluated before thinking about taking out the jpouch.
good luck

Good call on the short bowel syndrome Liz. Given all the surgeries that should be looked into.

kathy

also wanted to add that the diet my doctor put me on to slow down transit is called an "anti-dumping diet". Its primarily intented for people who have gastric bypass surgery but she gave me the techno lingo explaining why it works for people like us and I surely can't explain it all. But here's a link which summarizes the diet.

http://uvahealth.com/services/...dumping-syndrome.pdf

and yes.. it works.. along with the other recommendations I previously made.

Thank you so much for all your answers, my head is all over the place but i have written everything down to ask my J Pouch Nurse tomorrow

I am on the highest amount of Loperamide some days but alot of the time i cant take the highest amount cos it constipates me and that is just as painful

I had some kind of test where I had a catheter inserted into my anus, but i was asleep while i had it done but it woke me as they was trying to remove it cos of how painful it was!!! It has left me red row and very sore!!

I cant drink anything apart from water or tea, but i will now stop drinking tea as you have said its not good. If i drink anything apart from water it goes straight through me even diorylte, the hospital i was under at first made me live on it for days but it never seemed to help.
I am often anemic but as soon as i take iron tablets it constipates me so i cant win with that either
MUST GO AND DO DINNER I WILL RETURN!! Thank you guys for your support x

Hi Fiona,

I was in your EXACT same shoes. I had the exact same story with my bag/stoma everything + was allergic to the adhesive that held the bag on. I had my surgery in Minnesota as that is where I am from. I had the same 20 minute, "transit" time--mouth to toilet. I was referred to the mayo clinic after 3 years with my pouch. They did all the tests and and then some, meaning on all my body systems. The conclusion was to get rid of my pouch and go back to the bag.

Well I just couldn't, and I didn't. I have had my pouch for 13 years now and it is doing alot better but it is a lot of work and takes patience. I do take narcotics to slow things down and probiotics and try to watch what I eat. I also really pamper myself and rest a lot. I do not allow ANY stress in my life.

So my answer is I do not regret keeping my pouch. It is a different lifestyle and luckily I have a great husband who is a chef and takes wonderful care of me. I wouldn't trade my pouch for that leaky, filling up constantly bloody, stoma bag! I really am doing quite well now. Better than ever, but as I said you have to put the time and the attention in. Plus jpouch.org is great resource. I have learned tons of tips on how to take care of myself and gotten a lot of support and no longer feel alone. I have been sick for 41 years including when I had UC so essentially all my life. It is so valuable to not feel alone. Bless all of you lovely pouchers! Thanks!