Richard, there are several people who've posted under Ostomy and Skin who have had their j-pouches removed. They say it's hard but the best decision they could have made. Every one I've PMed with is happy with his or her decision. Reading their stories may help you feel better about the surgery if you should ultimately have it. My j-pouch is scheduled to come out in January. Like you, I figured, "Let's try the diet thing again." I began fiber which lead to firmer bms. Yay! But too firm, so I had some veggie lasagna last night to counteract that and I was up all night with urgency, gas and pain. Arrgghh! The good part is that it is only confirming my decision. Good luck to you with yours.
~Lori

I only just started the diet thing and have run into the same problem already. Too firm. I am not using lomotal. No drugs at all. I then after too firm felt like my UC was back with the urgency. It's not back but it felt the same way. I am at my wits end. But I have to push forward awhile as I have no time to take off work. It gives me time to do the different things in my diet. I am truly not looking forward to any surgery. Like I said the worst.
One thing if I may ask. Bread is a big factor in my diet. Could that be a problem?


Well... I posted the above earlier today and thought I would comment halfway through my work shift.
I am sitting here having urges after having actually gone to the bathroom a couple times. I swear it feels like uc symptoms. I know I do not have uc but that is what it feels like. The gassy buildup and the urge to go. It subsides within a minute but keeps doing it. Just weird. Thought I would mention it while it was happening and I had nothing to do. Thanks..... P. S I have eaten a few times already... Last time an hour and a half ago. Some meatloaf... Mashed potatoes and some applesauce. And now just ate an apple.
My life in a nut shell.....
Richard.

I'm a former poucher - 3 1/2 years of pouchitis and I was done. Have had my ileo since 2001 and pouch was removed in 2003 (I was 30 when I got the end ileo).

Absolutely, without a doubt, the best decision of my entire life. I take no meds, eat anything I want, have no pain and can live the way I want to live without any thought to my GI system.

Had 2 babies post pouch removal - they are now 8 1/2 and 6. Could not have done it with the pouch because of all the meds I needed to keep the pouchitis somewhat under control.

Yesterday I went to the aquarium as a chaperone for my son's 3rd grade class. Left at 8:30 back at 2 and only need the bathroom to pee.

I swim and travel and pretty much just live a normal life.

Let me know if you have questions.

Yes.... That is what would happen with me. I know. But I dread wearing one. It will take me a long time to adjust but I know deep down it will be better for me. I can't get my mind to agree with my body. I just got up from another troublesome night of sleep.
Even if I do decide to do it I have to wait at least a year.
Finances.... Work.... Fmla and things. Have to get my ducks all in a row for the unexpected. My original surgery kept me out of work 9 months. Ya... 9 months. I lost so much weight I had no strength. Still cannot gain after a bit more than a year. Only gained 15 out of 50 back. I know if I get it I will get my weight and health back. But it is still a tough decision. I have a year to explore it. I cannot do it now.
Richard.

Well... Quick and short. I started a new diet. Lots more fruit. Two apples and one banana a day. That's a lot because I was eating none. No change. Still acts the same way as it did before. It makes no difference what I eat. I cannot get sleep because you cannot fall asleep with urges coming and going. Ahhhh.... This just blanks... Put your own word in there.
Richard.

If you really need to thin your stool, you are better off with fruit juices, particularly grape or prune. This is especially in light of your fruit choices. Apples contain pectin, which thicken. Bananas are long known to thicken stool and treat diarrhea.

Apples add roughage, bananas not so much.

Coffee might be a good thing too.

Jan

I have been drinking 2 ups of coffee in the morning. I have been noticing when I eat my main meal at 3 pm... I work afternoons.... I have urges constantly after that. Not a big huge meal. Like yesterday it was just pot roast... Mashed potatoes.... Carrots and a small bowl of applesauce. I have a p and j sandwich and a apple at 6 pm and for the last two days nothing before bed at 10 30. But no matter I still have urges. Things happen immediately no matter what I eat. I don't have to wait a week to see what happens. If the urges would stop I can handle it.
And I have not found a way to do that.... It would be fine. I really don't care if my stool is loose or firm as long as it comes out. Which it does both ways. But the urges are driving me crazy. Perfect for Halloween. Gonna get some grape juice today. I will know by tonight.
Thank you Jan. I will try anything.
Jan. I want to make this pouch work so bad. I really do not want to wear a bag. And it's not because of other people knowing or seeing it. I could care less about that. I personally just don't want it. Besides surgery was a horrible experience I do not want to go thru it again. If it comes down to it I will but right now like I said before I have time to work with different things.
Question? Two of the main things I eat everyday are meat and bread.. And well applesauce. 3 things. Do you think any of those would cause problems. It's not white.. It's wheat bread. Sorry to bug you so much on this but I figured after a year things would have lined up by now and worked.

After 19 years with my j-pouch and having constant urges the first 4 years, I came to learn I had chronic cuffitis. I just figured that was my new normal. I got treatment and the symptoms resolved. I also get constant urges with pouchitis and bacterial overgrowth. But you've already said that antibiotics don't help. A digital exam should have revealed cuffitis.

The only other thing that might be useful is antispasmodics.

Your diet seems OK, but very limited. Maybe so much so that you are deficient in something. I can't see how you can remain healthy with a diet that limited. Have you been tested for B12, vitamin D, folic acid, etc.? I eat a wide variety of foods and I am deficient in vitamin D and B12.

Jan

I definitely will have all that checked. I am taking notes for my next appointment.
I never thought as my diet that limited but I guess it is.

Variety is the spice of life...and health!

Yes, something to look into. After a year or more of a limited diet, your reserves can definitely become depleted. I am not saying that a nutritional deficiency would likely be a primary cause of your symptoms, but it could make them worse. Many nutrients are necessary for normal nerve function. Physiology is very complex.

Jan

Jan. I will definitely bring g it up. I have been keeping a diary of what I eat for a week. Pretty well the same thing with different meat involved each week. I will ask. I will most likely have to see a dietian to get myself straightened out on that subject.
Thank you. Seeing how I can tell pretty well in a day how things affect me it should not be difficult to figure out.
I had some grape juice this morning. Like you suggested. Around 11 and at 8 30pm I had formed really dark stool. Have not had stool that dark so attribute it to the grape juice.
Richard.