Hi,

I was wondering if any of you and yours are experiencing this situation. My husband had his pouch creation surgery in March of 2004 and to date still has mutiple multiple movements both during the day and the night. I cannot recall the last time he actually slept through the night. He often experiences blockage type problems and is up for hours on end and consequently cannot go to work. He cannot seem to eat virtually any type of healthy food - ie fibre/fruits and vegies without suffering severe gas or having to go back and forth to the bathroom. He does not feel that a nutritionist or other type of specialist can help because he said it is all trial and error. He does drink a couple/few beer a day and I can't help but wonder if this affects his system? Must I think. I am very worried and very frustrated about his situation as we have not had a social/night life for almost 4 years because most of his digestion issues occur in the early evening and he is usually stuck on the toilet for a long time and uncertain about leaving the house. Can anyone help me? Is this as good as it gets? It is almost worse than when he had Colitis - he only had one flare up and ended having his colon removed so we are not used to these type of restrictions. He is only 45 and he is really feeling frustrated that this will not improve. ANy suggestions and advice is much appreciated!!!

Hi billyjean,

In a typical week what type of food does your husband eat? When I was having trouble with my pouch I went to an alternative doctor who switched me over to an "easy digestion" diet. They didn't specialize in UC but did understand what would be easy for me to digest. It really helped me and cut down my visits to the restroom. I can put together a list of what we tried if you'd like.

Scott

THanks for responding so quickly! that would be great thanks. He kind of eats all the things we are not supposed eat - refined white flour stuffs white sugar etc - but to be honest he is really does not what the heck to eat!!! thanks for your input!

I would also want to investigate if he has either an anal stricture or a stricture at the top of the pouch. Numerous people here have found that they get obstructive symptoms with fibrous foods when they have these strictures. If the doctor does not do a digital exam, it can be missed.

Jan

Scott, I would be interested to hear what your practitioner suggested for you.

billyjean,

I understand your husband's frustration with the "solution" to his short bout with UC. I have had UC since I was 12, but never had much in the way of symptoms other than 10-year flares (treated easily with 5-ASA meds). So, when I had the flare last year that put me in the hospital and caused me to get a j-pouch, I wasn't exactly thrilled with the results either.

As for what he does, it is really going to have to be up to him. There are some things he can try - and they might or might not be successful. But he will have to stick with them for a week or two to really know if they help. If he wants to try some things, here are some suggestions:

1. Diet definitely makes a difference regarding frequency and consistency of stools. I have found, in particular, that rice is wonderful. If I could have it every night with dinner I would. I ALWAYS sleep longer/better if I have rice with dinner
2. Probiotics make a huge difference for some of us. It means taking a pill or two a day, but it might be worth it (PB8, Flora-Q, Align, VSL#3, Culturelle, or even yogurt)
3. Metamucil wafers with meals really seem to help firm things up - meaning less trips to the BR (but can increase gas - so can the probiotics, initially but it will go away)
4. Drink liquids after meals instead of with them. This decreases the amount of swallowed air, and decreases gas (and subsequently, decreases trips to the BR)

I would rather not care about what I eat, and would prefer not to have to remember to eat my fiber and probiotics - but it's worth it to me. If done for a long enough time, it becomes just a part of the routine.

Oh... two other things:

5. Sugar = bad, bad, bad for consistency and frequency. Sugar substitutes like Splenda, Nutrasweet, and Saccharin don't cause most people problems
6. Carbonated drinks = gas. Again, if he's going because gas is causing urgency, he might want to cut these out. I will drink one every once in a while (diet-no sugar), after stirring out most of the carbonation

thanks very much i will pass this on to my husband and go shopping!!!!

For about 18 months I stuck pretty strict to this and it helped slow down and thicken up my output it also helped close up my fistulas. But I've recently converted to an end ileo so I don't follow this like I used to
Here are the basics of what we did:

No wheat or gluten. For breakfast "Envirokidz" and "Puffins" make good gluten free cereals. Our local health food store has a bunch of Wheat/Gluten free products. They taste different than products with wheat but if he tries a couple different things you can get close to the same taste, just don't get discouraged if you try some funky and bland things trust me their is enough variety out there you'll be able to find something you like

No pork, and reduced my intake of red meat. If I wanted bacon I would get Turkey Bacon.

No more Gatorade or sports drinks, too much sugar. Switched to 100% juices, water, water w/ lemon

Used Agave or Honey for sweetener, no syrup or anything like that

No diary products, I found that Almond Milk and Hemp Milk are good

No peanut butter, switched to Cashew, Almond, Macadamia nut buttters

In the beginning I did 1 bottle of Mediclear. Also started regularly drinking protein shakes with Hemp protein and added Green Vibrance a green vegetable powder. If I forgot anything I'll come back and add them. Hope this will help

Scott

Stamina is excellent for hydration. We get it at a health food store.

I agree with ElmerFudd rice does seem to calm things. Also I found that avocados and Archer Farms organic corn chips from Target helped calm things for me too.

This is concerning "GAS" I do drink water with most of my meals but if I have a lot of veggies or salad and have gravy or sauces on my food, I take 2 BEANO before I eat,and it cuts the gas down right away! You should try it, I find it works really good! especially if I eat take out food.

If your husband is experiencing blockage problems I agree with Jan Dollar in that it might be a stricture problem. They are completely normal and occur with the j-pouch. I had a successful j-pouch surgery seven years ago and experienced a stricture about a year ago. Very simple outpatient procedure, doctor goes in and gently expands the opening to your rectal cuff. To avoid doctor visits for this in the future I use a latex glove and vaseline to occasionally expand my opening with my finger. Also get your hubby off the beer! I used to drink beer and had to quit because it made me sick and poopy.

Hi Hope things have improved for you and your husband. The sleepless nights are difficult to deal with. My husband had step 3 in November 2006 so I've not experienced as many sleepless nights and he has been able to return to work. He has made brilliant progress since his last op and sometimes is able to sleep for 6 hours at a time. He also enjoys a drink but has found he's had to limit himself to the occasional half pint of cider. Has also found eating 2 bowls of porriage oats a week helps as soluble fibre and gentle on stomach. But finds more than 2 bowls a week increases loo visits. His favourite snack at the moment is prezels and he says they help thicken things up. I think diet is down to trial and error, veg is still a bit of a problem but he finds he has more luck with root vegtable (carrots, swede, parsnips etc.)
Figit

I had my pouch done in 2004 also, and a couple of pointers

1. Even without pouchitis get onto some probiotics, his shortened digestive tract needs all the help it can get. VSL#3 works mor me every morning mixed in yogurt.

2. I've discovered distress from both beer and wine. In my mind they aren't worth the discomfort, I've gone to my favorite ****tail. Distilled vs fermented seems to divide the line.

3. Get out and about. With a little exercise, I discover I have more control than I ever dreamed... first of all it moves the gas bubbles around, and if your Miller trap was build correctly it is generally self closing when standing. I get a different sharper pain when the pouch is full, but if I can live with the pain, I can be good for five ot ten minutes until I reach a facility.

4. Lastly float the boat...drink lots of water, this whole system works best with a little extra fluids. Its easy to let yourself get dehydrated.