Skip to main content

Hi! New to this group. Have had my J-pouch for 5+ years. I am having to go 20+ times per day. Nights are the worst! Up SO many times I can't get enough sleep and the "butt-burn" and itch are driving me crazy-also embarrassing at work. I am fastidious about cleanliness & skin care. I'm never without wet wipes, Puffs Plus, baby powder & Calmoseptine. The only meds I take are Levoxyl and Effexor (for hot flashes) and VSL-3. Narcotics help (I need them occasionally for back & knee pain) but I wouldn't think the docs would prescribe them long term. Any ideas on what might help??
Original Post

Replies sorted oldest to newest

Was your frequency ever lower or are you just going through a rough patch. My jpouch isnt even a week old and im only going around 12 times in a 24 hr period with 2 at night. It seems really odd your going so much which makes me think you have pouchitis, I would see your doctor. Also try taking immodium or get a prescription for lomotil. Normal amount for a jpouch that has had time to adapt and stretch is 5-8 times a day.
I've had times that they were slower but those were mostly when I was on pain medicine or anti-biotics. I've had a ton of surgeries since I had the J-pouch surgery - several adhesion removals, 5 surgeries on my wrist, 2 surgeries on my knee, a hernia operation that ended up being infected with MRSA causing 2 more surgeries, 2 rounds of chemo therapy and 7 months on a wound vacuum. I made an appointment with a GI doc recommended by my colo-rectal surgeon today. I'm hoping to get some answers!!
Have you tried any type of fiber supplements to bulk up your stool. I would advice to take with a minimum amount of water. Having your pouch for 5+ years and having that many movements still doesn't seem right. Are there any other meds you could be taking that would cause increase in bowel movements? What have you been eating? Hope things get better seems you've had a rough go so far. Good Luck.
I would try Imodium too. Us pouchers can take up to 6 a day (from what my dr. tells me). Keifer yogurt has good probiotics in it that help, and the VSL is a great thing. Metamucil in powder form can bulk things up. I am blessed with 5 bathroom trips a day, and that's what I'm doing. Metamucil, vsl, Imodium and keifer. When pouchitis flares, flagyl and cipro. I know there is something stronger than Imodium ( I want to say lomotil) that may be an option as well.
Have you tried Pepto Bismol? I use 3 tablets up to 3 times a day. And boy has that changed my life!!!! I am doing awesome. I take it with the first few bites of food. It has helped regulate me and slow me down. Matter of fact it has changed my life for the better. Walmart has the cheapest brand. I hardly go at night at all. Mostly have to get up and pee because of all the water I am drinking.
Frequency varies considerably between pouchers (and even in individual pouchers, from day to day), though ideally most surgeons/GIs will want you in the 4-8 bm per day range. That being said, 20+ is definitely excessive and you certainly need to get that down. The first thing to rule out is pouchitis, though your prior diagnosis of MRSA should be looked into as well (my understanding is that this can be chronic). You can also try imodium--my surgeon has ok'd up to 8 a day--or pepto bismol (long term use of the latter, however, hasn't been well studied). Probiotics may also be helpful. I've been taking Align since October and I'm generally happy with the results.

Hope your recent appointment gave you some answers!
I was going about 20+ times a day and miserable. I was ready for a permanent ostomy but we tried one more thing and it has changed my life! I take a packet of Questran every day (it's a powder that you dissolve in non carbonated liquid). It binds everything together and slows things down. Without this powder I would be miserable. Now I go probably 12 times a day but things are firmer and I don't have butt burn. I feel like the poops are more "normal" consistency on this powder. Check it out. You can get a script for it and it's pretty cheap.
Hello DB8MOM and everyone, I have been struggling for years with BM consistency issues and have had severe Pouchitis treated with Cipro and Flagyl etc... I have also been religiously taking Metamucil 2 to 3 times a day since my GI Surgeon recommended it after my colectomy in 2006. This has seemed to slow things down over the years and make trips to the bathroom less frequent. I have been able to maintain my pouch health for more than three years now and have not needed any antibiotics at all!

I have been using Chia seeds for approximately the past 10 months when a friend introduced me to them, the result has been better than the Metamucil and better than I could have ever hoped for...! Specifically I have been taking a brand called Mila from GenesisPURE after finding out that not all Chia is the same.

Mila is a blend of different crops of chia seed in an effort to maximize nutritional density. It is a rich source of omega-3 fatty acids, which may support the cardiovascular system. Mila is a good source of naturally-occurring fiber, which may better support your digestive health. One serving of Mila provides a good source of niacin, which is vitamin B3, magnesium, manganese, and phosphorous to support overall health and well-being.

Chia seeds have been part of the Incan, Mayan, Aztec, and Native American cultures for many years -- chia is actually the Mayan word for strength. It is gluten-free, trans fat-free, and sugar-free, and can be combined with your favorite healthy foods, including oatmeal, smoothies, and yogurt.

I take one tablespoon in a glass of water in the morning before breakfast, and then one in the evening before dinner. Some people may have to take more than this and may have to experiment to find the correct amount needed.

I have also been taking a few other other products from GenesisPURE, Daily Build for my daily dose of PURE organic vitamins and minerals, Mangosteen a Super-fruit that helps reduce inflammation and pain as well as Go-Yin another Super-fruit that provides warm and cool fruits that give your body the best overall balance and support for major organs that most of us are lacking in our daily diet and nutrition.

You can read more about Mila and other liquid nutritional and vitamins sign up and purchase them here.

http://genesispure.com/teambucher

Genesis PURE products are unmatched in quality, efficacy, and bioavailability. By implementing these powerful products into your routines many lives are changing each and every day. This proven technique allows the products to work together; complementing and supporting each other to maximize their effectiveness and bring you the best results possible.

I hope this helps, I know this is a huge post but I feel very strongly that everyone with or without our issues could use better nutrition health overall. If anyone would like to know more about these life changing products please send me an email, there is an opportunity for everyone to feel better and you could also earn some extra income for referring people to them.
I am going to be in the minority here but my typical is 0-3 a day. I however have chronic intestinal pseudo obstruction and gastroparesis on top of my Crohn's disease which is the reason for the infrequent trips to the bathroom. I've been known to not use it for over 2 weeks. :/

However your average j-poucher visits the bathroom around 4-8 times per day. 20 is way too much! Talk to your doctor!

To the person who recommended chia seeds...just be careful. Remember that everyone is different. I was eating chia seeds regularly last year and it caused me a lot of issues.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×