One other drug I mentioned elsewhere is Pseudoephedrine, which is used to treat nasal congestion. It works at reducing inflammation in the nasal cavity and reduces the production of mucus. This has a similar effect on the bowel and I find it gives me a period of greatly reduced bowel movements. It has side-effects and contract-indications so please read up on it first if you haven't had it before or if you're not familiar with it.

 

In drug information I've read, it is often used with an antihistamine and it occurs to me that some of these excessive bowel movements may be due to a small allergic reaction in the small intestine. I learnt very early on to NOT eat shrimp. Several years after my surgery, I had shrimp at a formal dinner and 10 minutes later, I was having floods of biblical proportions and spent most of the night perching on the porcelain. I never had this problem when I had my large bowel and I have since found that there are several things I need to avoid. My theory is that the allergy was so mild that it was unnoticeable when I still had a full working colon. Some of the simplest things can set it off. I drink low-fat milk now to reduce the fats in my diet  and this decision was more age & weight related initially. Now I find if I have a large amount of dairy in a meal (ie lasagna with Bechamel sauce) I pay for it with stomach cramps, gas and very frequent bowel motions. I have now found I have a reaction to foods with Palm Oil in them and many processed food items now contain palm oil as it's a cheap alternative to other food grade oils.

 

There are several other possible things similar to this, such as gluten intolerance, histamine fish poisoning, (among the most common toxicities related to fish ingestion), chemical additives or preservatives, very very mild ciguatera poisoning... all these in minor doses would have had the small bowel reaction masked by large bowel coping mechanism. You may have only noticed a slight difference in the final stool and you may not have noticed anything at all. In addition, as you grow older, you may develop food intolerance. I never used to be lactose or noticeably lactose intolerant. With the reduction of dairy in my diet, this is now the case and I have to be careful.

 

One possible way to determine an intolerance, is if you have more mucus than normal in your bowel motions.

 

Also, I apologise if any of my terms are a little crass, rude or insulting. I'm an Aussie and we do have an odd way of referring to things at times.

I tried the lomotil type medications at first but they just gave me painful cramps so I don't take anything like that.  I don't require pain meds so don't take them either, although I do know things like codeine (tylenal 3) slow things down quite significantly.  Like I said in a previous post, I take a regular small dose of Ciproflaxin which has worked best for me...without it I start to get run-down.

My j-pouch was a result of overuse of antibiotics and the GI doc's standard Merck's manual approach to treat GI patients. Turns out I was one of the 10% that had the symptoms due to those meds prescribed to treat and increasing the dosage only increased the symptoms. 

  My brother who had chrohns with complete colostomy, lomotil was his standard maintenance drug. But when I took it I had headaches, moodiness and such, so I changed to Metamucil (AM/PM) and that gave me a more natural binding w/o the headache and added a simethicone tablet for the gas the fiber adds. I still take Imodium as my standard go to in both AM & PM and when I know my system might get compromised because of outside food sources. I'm seeing lot's of suggestions from others at this sight and have been copying down new products that could also help with changes in those areas future concerns, but still staying away from the pharmaceutical prescriptions.

Have you been scoped or had a barium at all? One of my surgeries was to have the reservoir flap removed; again I was the only one out of 300 J-pouch patients to have it removed, but it was keeping me from constantly having normal movements, and only when I took lots & lots of gatorade and pain meds would the dam break (from painful pressure) and all the contents flowed. Took 10 months for them to know the barium had to be done after eating not standard with x rays which usually means prep is clean colon right? But the doc listened and I ate in Xray and they found the blockage area.  

Unfortunately,  Lomotil and Imodium stop my small bowels up, it is very painful.  Can't take them anymore, I'm sensitive to them now, maybe used them too much?  I also really have to watch prescription pain killers, they can have the same effect?  Anyone else experience  this?

Following on from the suggestion of a hand held shower, I can't agree more. While on the subject of ick, I also keep a small bucket in the shower area with me. Our toilets are not set up for squatting and as age advances on, we lose the ability to successfully squat. (Try living in Asia and undergoing the horror of only having a squat toilet where you are, and needing to go, right NOW!)

So, I find on a frequent basis I'll go to the toilet, get in the shower and find I have to go again. Instead of getting out, going and then getting in the shower again, I squat and use the small bucket then empty that into the toilet. With the shower on, it's easy to rinse and clean both the bucket and myself. You will also find that the different stance and angle will help empty the pouch. (The other option, if this does help, is have a small step in the toilet with you to place your feet on when going. It'll achieve the squatting position while you are sitting.)

 

In addition, I take Imodium and Lomitol (or their generics) both in the morning with breakfast and in the evening before dinner. I take 2 of each at the same time as the Imodium helps the body to remove excess fluid from the bowel where-as the Lomitol works on decreasing the peristaltic movement.

I also always have my own home made muesli, with no added sugar, on a morning with a good helping of rolled oats and oat-bran. Natural muesli, not toasted which ; helps to create a binding of the solids in the bowel; also absorbs excess fluids and slows the motility. If I can, I also have with my evening meal brown rice, rye or grain bread or wholemeal pasta to also help bind that meal also. Try to cut down on the processed foods as they turn to a sticky sludge which I find is harder to evacuate from the pouch.

I have made a  few comments on several posts this week dealing with incontinece and frequency of bowel movements. You can find these other posts when checking out my profile and they are listed indicating several other useful threads on these matters,that other people have also made excellent suggestions..

Also, I noticed the comments about "seems like you still need to poop after going".  Yes, this is true for lots of folks.  I highly recommend a hand held shower for times you feel clean out has not been achieved.  The high pressure vibration mode on some handheld units will stimulate a excellent purge (every time) of every pouch out there.  Sounds gross, but the same shower can be used to clean the  shower/bath afterwards.  This method decreases poop frequencies buy a large amount.  I don't do it every time, but you will begin to recognize a incomplete dump/purge of your pouch.  The hand held shower has increased the quality of my life dramatically.  I can now eat spicy/gassy/hard to eliminate foods without worry.  I can now eat whatever is served me when I go out on the town.

20 years after surgery.  I wake up every approx. 3 hours and poop.  Early AM is also best sleeping time.  My body has adjusted to this problem, I don't like it, but nothing I can do about it.  Ambien helps but does not eliminate totally, but you can't take Ambien every night.  Less food helps some, but you can't starve every night, and liquids also beg to be pooped also.  Timing your eating just adjusts the sequences, and is hard if you want to live and eat normally like every body else.  All I can say is I no longer have the expectation of a 6-8 hour sleep, my body has just adjusted.

Sounds like par for the course for everyone.

...Lionel

 

Hi all. It seems for the most part most people wake up 2-3 times a night, just like myself, even though you try and "empty out" before bedtime. It seems the pouch has a mind of its own and no matter what you do it wins in the end. But it is quite bearable and if the total hours of sleep is enough to keep you in mental and physical shape for the next day then I can live with it. Things could always be worse!

...Lionel

In a previous survey on Fecal incontinence, there are several good answers from people on how to manage. Much of the incontinence was related to night time problems when sleeping. I also wrote at length on sleeping position and how certain positions help slow things down. Link is below

 

https://www.j-pouch.org/surveys...2#457716058471309402

I find that some foods slow things down for me...like apples, unsweetened apple sauce, some types of fiber like nuts and trail mixes.  I think that sometimes fiber gets a bad rap, because some types of fiber are good at slowing the pouch down because they also absorb water (metamucil).  Obviously some foods with fiber are to be avoided like those that cause gas or irritation...I love strawberries but they irritate my system if I eat them a couple days in a row. I'm curious if other people know of "slow foods" that work for them?

Answering on behalf of my son-13 years old, had surgery 7/10/15, they did all procedures in 1 surgery. When he wakes up 2 times its a good night! 4 or more and he is exhausted during the day. Thanks for all the life experience everyone is sharing. It really helps!!! Getting better , looking forward to better days.

Sometimes. It all depends upon what, how much and how late I eat.

I always wake up once, rarely twice. But the problem is not waking up, it's the not waking up in time! I wear pads and almost always have a mess to deal with. I was taking opium tincture that helped a lot, but then I had a grand mal seizure. The doctors said that it probably contributed to the seizure. I usually take 1/2 of a Xanax to help me fall asleep again.

I usually get up once during the night, sometimes more and sometimes less. I have been told if I eat earlier then I could maybe avoid it, but I'm generally unwilling to let this control my social life and work life, which generally include dinners out with friends and colleagues. Especially after 10 years with UC. I have found an immodium before bed helps. So maybe try that. And I keep the lights off when I wake up to go to the bathroom, so that I don't get woken up by the lights and can just go back to sleep. So you could try that or a nightlight in the bedroom/bathroom for your route. Honestly, it only bothers me when that number becomes more than 2, which is either when I drink or have pouchitis. Good luck!

@Michelle1964, your condition sounds like pretty bad case of pouchitis. I have pouchitis also but it was never as bad as you describe.  Even though it's tolerable I find if I don't take Ciproflaxin regularly I get run down and dehydrated.  I'm at the point where I take a very low dose, only half a pill a day, but I do take it pretty much every day and my doctors have left it to me to use it as needed, they just refill my prescription when I need more.  I'm wondering if you are on any kind of medication...sounds like you should be, to get things settled down?

If I can get a solid 5 hours of sleep without going to the toilet, I consider myself lucky.  I usually average 2 hours of sleep at a time.  Sometimes I have to go 15 minutes after the last time I went. Towards the morning I tend to be able to sleep a bit longer, but then I have to get up to go to work and keep an appointment etc so I can't sleep any longer.  As noted by many respondents  my husband is very loving and understanding even though he always seems to wake up when I get up to go to the toilet. 

I just have a general question for anyone who may experience this. Often I am in so much pain after a BM that I actually need to take Oxycontin. It feels like I'm passing razor blades. I know to avoid fruit and vegetables as these seem harder to pass but sometimes there seems to be no rhyme or reason to the pain. On a side note, I cannot eat anything without bolting to the bathroom. I am a 51 year old woman, 5'2" and weigh under 100 lbs. I have not been able to weigh over 100 lbs since my surgery in 1999. Luckily my husband of 30 years loves his wife on the "slender side" although he'd prefer a healthier weight (as would I). Any suggestions on how to gain and keep a few pounds?

I feel your pain! I've not "tooted" without being on the throne since my surgery in 1999. I've had the odd accident during the night and I'm very blessed to have such a wonderful, loving husband who has a great sense of humor!