At my wits end..

I have the exact same problem.
So frustrating.
My Dr thought it was pouchitis and prescribed flagl(spell). But that for some reason made me a zombie and had to stop. But it did not change anything. I still get the urge like I did when I had UC. Now I am starting to think I have UC. I am going to ask to be scoped. She checked me with her index finger and can go quite a ways into my pouch.
She says she can. By what she can feel and what she tells me to do while checking she said she feels as though it is healthy. . I have no bleeding. Do you?
Do you have accidents at night? As soon as I do fall asleep I evacuate cause I relax everything. I have to learn how to do that when awake. Have not found that trick to relax yet.
But back to the urge. I wish I could help but maybe someone here may have an answer. I don't have any infections.
It is driving me nuts. Not at my wits end yet.
Richard.

Thanks for the reply Richard.
I do have some minor leakage at night but it isn't every night and it isn't a full evacuation. usually some watery stool with some gas. I've found recently sleeping or laying on my stomach helps get the gas out with out anything else.
I don't think I have pouchitis either because eventually it subsides and gets better. I think banana's help but I saw someone else mention oatmeal too. I have to assume my diet is causing it but I eat fruit, pretzels,rice and a lot of chicken. (I've noticed steak backs me up but almost to the point of constipation)
If I could just empty my whole pouch when I sit down to go I would be a happy camper. The most frustrating thing is sitting there hearing your bowels rumble and knowing you have to go but nothing is making it's way out. I feel like I'm spending more and more of my life on the toilet and it's really depressing me. I just got married and we want to go to Jamaica for our honey moon and I'm scared now that I have this issue going on that we won't be able to fully enjoy our honeymoon

Your welcome.
Maybe we can get some ideas from others here.
Maybe both our diets.
It is frustrating.
Congratulations on your marriage.
Hope you do get to honeymoon..... Comfortably.
Richard.

Early on after takedown I had challenges relaxing my anal sphincters while seated on the toilet. I decided to empty my J-pouch in the shower where I would use a hand held spray to spray warm to hot water straight up my rectum (what was left of it). This really worked for me. It relaxed my sphincters and allowed the effluent to easily leave my body. So, I had a bidet installed on my toilet and began using the spray to do the same thing as the shower wand had done. It, too, worked. Gradually, I no longer had a problem relaxing those sphincters enough to allow me to empty my J-pouch whenever I sat on the toilet. Best wishes!

If you haven't had a pouchoscopy it might be time for a J-pouch-knowledgable gastroenterologist to have a look.

Something to consider trying: Use a mildly warm tap water enema to irrigate the pouch. I do this frequently on the theory that it gently expands and irrigates the pouch,mostly at the blind end of the j.
I wouldn't recommend using the saline the enemas come with,as the saline stings when it comes back out.

Right after takedown when I had this I noticed that when I sat in certain chairs, I got the urge badly. I figured out that sitting in certain positions brought the urge. I then sat on the edge of the toilet, wiggled around a bit to get the right spot and voila! I was able to empty. I still do this sometimes. Another thing that helped me immensely was a good probiotic. If I forget to take it, I get this problem still.

Good luck. This is extremely frustrating. I remember going to the toilet, leaving frustrated, getting the urge about 50 feet from the toilet, turning around ( repeat this a few times.) So embarrassing!

Hi,

Surgery April 15, 2009, takedown Nov 2009.
T3, N2
Chemo w/Radiation before, Chemo after.

It didn't go very well from the start. I would sit on the toilet for hours and nothing would come out. I drank lots of water, ate veggies, very little meat. Still nothing seemed to work.

Finely one day I woke up and tried an enema and the success was great. I was able to go an entire day without an urge to go to the bathroom. Even slept through the night without the multiple trips to the bathroom.

Since that day I get up, have an enema, shower and shave. Off to work, no urge to visit a bathroom all day. Work throughout the day comfortably without worrying where I'am at and if I'm near the restrooms.

I spoke with my surgeon when I started this and he just nodded his head in agreement, nothing more. Also spoke with my oncologist and pcp. Both didn't disapprove of the routine.

This past week during a routine exam with the surgeon I brought this up again and this time he went into detail about the possible difficulties with a j-pouch and going to the bathroom. Pissed me off a bit that he waited five years. But he's a extremely great and talented surgeon. Had it not been for him I'd being wearing a bag.

He described a few ways people have dealt with the problems of evacuation and frequency. He finely told me what I was doing was one way, although not common. But also nothing to worry about.

I explained I use regular warm water, about a quart to half gallon and evacuate immediately. He said this was okay and would not present any problems.

Looking at the screen when he scoped me, I could see what he said was a very health colon.

This routine may not be for everyone, but for me it works. If you sit on the toilet and nothing, and I mean nothing comes out. Then maybe this might be a viable choice.

Good luck.

BobS

Thanks everyone. It looks like my first course of action is to start trying the enemas. I have a feeling that may actually help. Seems like most people have had success with it. After that if things don't improve I will probably go for a scope. I haven't had one at all in the four years of having my pouch. Do most people get a scope every so many years or just if needed?

Another thing to rule out, which I don't think anyone has mentioned yet, is stricture, which is a narrowing of the opening of the pouch. This can make stool harder to pass, so you don't fully empty your pouch every time. This is further compounded if your stool is on the thicker side. Treatment for stricture is usually dilation. This can most often be done non-surgically and right in the doctor's office, and you can also be taught self-dilation which you can do at home to maintain the opening. It's not nearly as daunting as it seems, once you have been instructed on the proper way to do it. But definitely, any and all of the things mentioned here are worth looking into or ruling out.

As for your question regarding the frequency of scoping, you will find varying opinions on this. Unless you are having a problem, some surgeons/GIs prefer to scope as infrequently as possible, as the procedure itself is invasive and does not come without risks, though these are small. On the other hand, if you have your cuff intact, there is newer data from the Cleveland clinic which suggests that scopes should be done annually because of the risk of dsyplasia in the retained cuff. And of course, if you are having issues with the pouch, you may need to be done more frequently. I had 4 scopes in an 18 month period because of some problems I was having with bleeding. Prior to that, I hadn't had a scope in 3 years. So again, it's often situation driven and the schedule would best be determined by you and your surgeon or GI. But considering that this is a newer problem for you, and you haven't been scoped in several years, I'd say it would be worthwhile to have someone take a look.

I wouldn't choose the enemas as my first line of attack, at least on my body. It might turn out to be an easy problem to fix, but only if you do something to identify the problem. If your doctor can't figure it out, or is proposing a treatment that's unacceptable to you, then of course you have to try to find something that works for you.

We have noticed that my son is reactive to foods with seratonin in them such as bananas. Having some pickled ginger before bed is helping with incontinence issues. Apparently ginger blocks seratonin.

This sounds a lot like a stricture. I had similar symptoms a month ago and needed to be dialated. It's the worst, right? Definitely call your doctor; seems like it's been going on a long time.

Are there any other things going on? It could also be inflammation of cuff or pouch...

I agree stricture. I had jpouch in 2004 and in the past year also had those issues. Had to be stretched last year and now stricture again and partial obstruction. Having scope sept 4. Doc says May have to go back too stoma as she feels the pouch muscles are weakening. Good luck.

Lynn

My bidet has a enema like function as one of the cleaning choices. When times my j-pouch can't fully empty I use it for some help and it has dramatically cut down on the number of bathroom trips I have on those days. It has also helps on days when I've felt like straining.

I believe it shouldn't be over used as I want to keep good sphincter muscle control. As I go through periods of pouchitis/IPS and have too loose or too firm stools it helps avoid frustration, hurt and butt burn. I love my 6 month old bidet. It has made my j-pouch problems much more bearable. I still struggle with accurately predicting if and when I need to take loperamide and/or metamucil capsules and how many of each and when, It depends on what food I eat and if I'm having problems inside of my pouch with chronic cuffitis and/or pouchitis and/or IPS.

I increased my VSL#3DS from 1 to 2 packets per day after my last round of antibiotics. My gas has increased some but my pouchits/IPS symptoms appear to have left my pouch

I now have annual pouchoscopes. I had several one year after my take down as I had c.diff and chronic cuffitis.

Hi all.
I was told by my surgeon NOT to use enemas.
She digitally checked me and more or less said I have to learn to relax when going. She even offered physical therapy to learn how to use it. I will take her up on it in about two months when I see her again.
She said everything is perfectly healthy there and when I feel the urge to just hold it. Hard to not go when you feel the urge... You all know that. I feel the urge at least hourly. But sometimes the urge releases a bit and I have to go clean up. Anyways... Being 10 months out things are better but I wish I could say it's working right. I don't think it is and needs more time.
My bigger problem is all the muscular pain I have constantly. I find it hard to push through every day. I don't know if it is muscular or arthritis. Whatever it is I never had it before surgery and it takes me at least two hours every day to get going. Thankfully I have an afternoon job and have the time. I wish I knew what it was that was making me hurt all over so much but I am so tired of seeing Dr s.
Has anyone here have had the problem of a really stiff all over body every day after surgery? It affects my sleep more now than my pouch does.... I just don't know how to describe it. I feel like a hunch backed 90 year old man.

Thanks everyone! I have an appt Tuesday with my GI and and I believe we are going to do a scope first to see whats going on. It could be pouchitis or some inflammation. Hopefully he will rule out stricture too. My biggest issue right now is keeping weight on right now. I've lost 12-15 pounds since this all started. Update to follow next week.

Shakedown what you describe in your OP is exactly what I've been going thru for months and months. The urge to go so badly that I swear I won't make only to sit on the stool and have next to nothing come out. Go back to what I'm doing and it starts all over again. At night it's particularly frustrating because as soon as I lay down I have to go again. I wear Depends at night still and have accidents once a week on avg. The only antibiotic that worked was Flagyl...and I was taken off that last November due to a reaction to it. I don't have pouchitis or inflammation or CDiff according to multiple doctors. Just a dysfunctional pouch they say. Looking at having a reversal done.

Misticobra,
I'm sorry, my last post was misleading. I would never suggest that anyone with a newer j-pouch use an enema. Your doctor is correct. I wasn't talking about giving myself a full enema and I didn't make that clear at all. Sorry everyone. I'm taking about using a little internal water to help get the last bit to empty to avoid the additional trips, after going to the restroom, to get the rest out. I also have times when I've been my own worst enemy and made my contents too thick and find a little water helps things to move, instead of drinking white grape juice etc.

My take down was 3.75 years ago.

I'm sorry you are having so much daily pain as well. It sounds like it's your back. Our j-pouches start out small and expand with time. They can involve our tailbone area and therefore lower backs. There are a lot of nerves in the area too. I have arthritis in my lower back and my j-pouch made things worse in the beginning but it's gotten better over time.

That's OK.
I can see where a bidet would help.
It's not like you are putting a nozzle in there.
I know the Pouch is not very far up in there and a squirt from a bidet would be able to reach it.
I have to get me one of those. It's just the clean factor that comes into play with one of those.
The reason my Dr... Surgeon said not to was because it may damage the cuff I guess. I don't want to tear anything up in there.
Richard.

If you are afraid of hurting your cuff make sure you get one that allows you to adjust the force of the water from low to high in varing degrees in-between. This will keep you from applying too much water pressure. I have a Coco that was on sale delivered for $329. There are many kinds but this was the best price at the time.

My husband has the same problem... he feels like has to go all the time but can't go. He also loses bowl control at night. He recently had a scope done by Dr. Chen at the Cleveland Clinic who found a prolapse in his j-pouch blocking 80% of his opening. My husband had had a scope not too long before but the doctor wasn't an expert with pouches and didn't identify the prolapse. Dr. Chen doctor put him on a suppository but it hasn't shown any improvement. I'd recommend a scope by a doctor who knows what he/she is doing to see if you have some kind of blockage. Best of luck.

StephenS, Are they going to be able to fix the prolapse by tacking up the j-pouch or something like that in an operation? I think I read somewhere that someone had this done for a large pouch that was doing something similar. I hope it can be fixed and without making too large of an incision....

I've also had this problem since I first had my j-pouch almost 20 years ago.

I use a strategy similar to that of TE Marie's, but instead of a bidet (which I don't have and honestly don't feel comfortable using), I jump in the shower and spray warm water up my butt for a few mins.

This works well for me but as you can imagine it would be difficult to do in places where you don't have access to a shower.