What to do?

Tough call, especially since there are no guarantees. But, here is what was true for me. My surgeon told me that functional improvements at one year post op was where I should expect to stay. I saw improvements years down the line. I gradually improved from needing 8 Imodium per day to 1 per day over about a decade.

The first year or so can be challenging.

Another thing to consider is SIBO (small bowel bacterial overgrowth). You have all the symptoms of pouchitis, but no inflammation present. Antibiotics are still the treatment. I keep Flagyl on hand all the time. If I have symptoms of frequency, urgency, feelings of incomplete emptying and leakage for more than a few days, I start Flagyl, low dose, three time a day for 7-10 days. Works like a charm. I would want to explore this before even beginning to think your pouch has failed. But, only you can decide what you are willing to deal with.

Jan

#1 get a bidet-I recommend Biobidet i3000. It doesn't require electricity-it has a powerful spray function and you will be amazed at how it can help you empty better.Then, because you are actually empty, your leaking should be r diced. Google it-only $179 on their website (I am not affiliated with them in any way, just a happy customer).

#2 To better deal with the leaking issue (which hopefully resolves with #1), try tucking a piece of a cotton ball just up inside the "hole" of your anus to absorb leaks. I have sphincter issues and this helps me immensely.

#3 What is your stool consistancy?mIs it watery, pudding-like?, thick? try experimenting again with fibers and/or immodium. I take several Metamucil capsules and immodium before every meal-it bulks me up and I actually empty much better, making big "brown bombers" that evacuate easily than without it when I am more pudding like.

I have been on a quest for many years, to keep my pouch, despite challenges, so I woildnt go down without a fight. These are some tangible things to try that might make things better for you. Getting my bier seriously changed my quality of life and it is worth it's weight in gold to me. I hope you try it, especially if your pouch looks healthy and you are having more of a functional issue.

Good luck!

What about self catheterization. I have been reading a lot about it on this site and it seems people are very happy with it.

The incomplete emptying could be a structural issue, like a pouch that is too large. Could your surgeon order a defogram? Not the most fun test but it could be illuminating.

My two cents: I would not be able to handle your quality of life longterm, but it sounds like your surgeon thinks that if the scope looks good, nothing else could possibly be wrong. I would never remove the pouch (or disconnect) until seeing a surgeon who was more interested in getting to the bottom of the problem. Doesn't have to be Cleveland/Mayo, but it has to be someone who will work harder for you.

It sounds like you have the start of pouchitis but I am not a doctor. You should really give it more time. It has been 4 years for me and I am still learning what foods help and what doesn't. You will see in time you will be able to add more foods to your diet. Maybe you should keep a log of what you are eating. Sugar, alcohol, eating large meals, coffee, dairy there are many things that may be giving you a problem. After my surgery I was on lomotil for quite a time which slows down the digestive tract. There are many things you may be able to take to help you. everyone is different You are on the rite sight because everyone here will be able to help you so you can go back and ask your gastro if it is good for you. Good Luck hoping you feel better soon. Don't give up Grace

Nah... If it were the start of an infection it would have shown itself by now. I have had this going on for awhile.
I am just logging what I eat and eating more fruit and fiber.
It is a start and I have to start now to see if and what makes a difference.
I really... Really do not want anymore testing done... We all know how tiring that gets. Thank you for all the advice and I will certainly keep this updated. I hope for the best. I will not give up yet. Nope... Not ready to give up. Went through too much to get to this point. I was just so stressed and my Mind was so in a whir I just had to ask if anyone was at the point I am and if it got any better.
We are all different.... We hear that all the time but it is so true. Thanks again all. I appreciate all advice.

I think you might benefit from a more careful experimentation with fiber. Metamucil (or Benefiber or Citrucel) each work differently, so one might be best for you. You can tinker with the dose until you find what's most effective. They still might fail, of course. The other suggestions here are also well worth exploring. You might consider finding a gastroenterologist.

Also keep in mind that SIBO does not show up on a scope. It is not an infection, but is still treated with antibiotics (and reducing simple carbs once under control). Probiotics may help too. We are all susceptible to it since there is no valve, like there is in the colon, to keep bacteria from moving up the small bowel.

Not saying this is your problem, but you can rule it out with a course of Flagyl or Cipro (I prefer Flagyl). It won't help if bacterial overgrowth is not an issue.

Jan

Scott... I have just started today some generic powdered fiber you can add to water or anything. I am trying a little at a time. Do not want to over do it. I am also just starting g to eat more fruit. Never have been a big fruit eater. Not that I don't like fruit just never got into my diet throughout my life. But I am making an effort to eat an apple and a banana a day. And maybe add others if this does not bother me. I tried metamucil in the past and it gave me really bad diarrhea I could not hold. I will take things slow. For sure.
I am gonna make an effort to eat more healthy foods. Even oatmeal... Has to be flavored though. Not my favorite but I can get used to anything if it works.
Jan... She did not scope me but I am gonna ask for a scoping if my diet change does not effect my situation. She dug around in there pretty good and asked me to push and squeeze... You know typical digital check. I had no blood before or after the check. I know antibiotics are important for certain situations but they truly mess me up when I take them. They thought I had it months ago and prescribed flagl. It didn't do anything but give me diarrhea.
I have another appointment in two months and like I said if no improvement with the change in diet I will want to be scoped. But... I really feel deep down that my diet is causing my problems. I think I need to cut back on the beef and meat. I cannot cut it out completely because it is an important source of protein for me. And I would truly miss it.
I guess this is a start and I do feel good about it. I am hoping fruit to be the key. But I know I cannot overdo it. Just a bit at a time and increase as I go if it does not bother me.
I also believe there is nothing wrong in there. I am not gassy... Which sometimes I wish I was to help push it out. I will drink a carbonated drink... Not a lot... just enough to get the gas to push it out. It works at times but I know it's not the answer.
Thank you all for the advice. I am using all of it to see if anything works. I think a positive attitude helps too. As silly as it sounds. And I have that now that I have started to do something.
Thank you all again. It is truly appreciated.
Richard.

Yeah, if antibiotics don't help and even make it worse, not likely SIBO. A digital exam can check for and rule out anal stricture and cuffitis, but that is pretty much the diagnostic limit.

Fruit is great, but vegetables are better.mboth provide bulk and good nutrition. But, most fruit contains a lot of fructose, which can promote diarrhea. So, good idea to go slow. Beef should not be a big problem as a protein choice, but obviously there are more healthy choices.

The idea is to have high protein, low carb (particularly simple carbs) and high. Nutritive value. If you can eat more fresh foods and less processed foods, your diet will naturally add more bulk that is easier for you to empty. There is a big learning curve. I think you are on the right track to take a serious look at your diet. It is one of the few things you can do to improve your function.

Jan

Ok... Things are pretty well immediate when I eat some things.... Well almost anything I eat takes 4-8 hour's to travel. Well things were going well until I ate pickled beets. I love pickled beets. Well.... That was immediate.... Apparently they slow things down wayyyy too much and gave me urges. I was eating fresh fruit and eating right for a couple days and it was moving good. I was happy... Fruits were working well. But I ate the beets for dinner and they kept me up all night I know because they were well... Not to be gross... But they were present when I went BM. I found one thing to stay away from. Yes I am making a list. Now... Just gotta get the beets thru. O my goodness they have too much fiber I guess. I don't want it to slow me down that much. I would rather have diarrhea than this.
Jan... I am keeping what you said in mind. And wrote it down. I think it will work. There are some things that don't work... Beets.... That have to be listed too!
Suggestion to someone who maybe has too much loose stool.
Beets!

Sounds like a stricture.

Sue

If your surgeon just checked you out and said your pouch is structurally sound and you do not have a stricture (if he/she checked you out I'm assuming that you were checked for a stricture)then it could to be your diet that needs to be looked at and it's good you're taking those steps. Also, sometimes there can be a stricture at the top of the pouch which is harder to detect. An anal stricture is easier for them to pick up on. I had a stricture and that made my life miserable until I had it dilated several times. So when I read you have leakage and straining....right off the bat I think of that because I had the same thing. I don't know to what extent your check up was...was is just a scope?

It was just a digital check. If things do not improve in a month and a half I am going to request a scope to see what may or may not be going on.
Yes.. Diet was the only thing I could think of or do.
I will bring the stricture thing up if things do not improve. There certainly was not one at the bottom... She stretched that out pretty good. She did mention that things are pretty tight but that seemed normal to her. She has been going it for 16-18 years and seemed confident that all was good.
Richard.

My surgeon recommended Metamucil to help thicken up my stools. But every time I used it I had terrible loose stools. Then his PA told me about Metamucil wafers. They come in several flavors and are like eating a cookie. I now use them whenever I have loose stools or want to slow down. If you can't find them ask the pharmacy and they can order them.

Metamucil wafers give me fully formed bms. You just have to be careful to find the right balance between too formed and too loose. The plus is that they are delicious.

Thing is I don't mind loose stool. I know everyone tries to find a middle ground on it but why? I would rather have it loose cause anything thicker seems to be difficult for me. I have trouble passing it. I think I have some of the cookies here. Just for the heck of it I may try one.
Thanks.
Richard.

I agree. I just started the fiber two days ago. I think I was just so surprised when I saw what came out of me - it's been a long time since I saw it look like that! Having said that, I'm used to loose. It's not any harder for me to hold in and more formed usually means more gas and more straining. I'm just experimenting.