Low quality of life with pouch... not sure what to do

Since removal of the j pouch is a huge surgery, if this was me I would seek out a second opinion as to what may be going on. The Cleveland clinic has very experienced people there that deal with j pouch issues and have helped so many people. That's where I would start if I was having problems.

This may sound like a simple thing but have you been checked for a stricture? I had one and it made me miserable until I had it resolved.

I am already with Cleveland Clinic who did my first op. Performing my own digital exam, I certainly do not have an anastamotic stricture at my outlet at least. I had a pouchoscopy 1 week post op and my surgeon did not say he saw any.

 

Given that some of my issues are spasming rectal pain and frequent leakage, could I have nervous damage? Would such damage be permanent? I had urgency and leakage of bloody mucus before takedown. The bleeding resolved after takedown though (probably diversionary cuffitis).

 

I had a small sterile fluid collection after the first op, but it was drained and already sterile, so I don't think that would have anything to do with it.

 

Do some people's pouches just not work well?...

Sorry, I didn't know you were already at CC. It is true that some folks end up with a pouch that just doesn't work well. But I can't help but think that two months is too soon to make that decision. My uncle has a j pouch as well and I know he had a VERY rough first year. He's been fine ever since and his j pouch is now 18 yrs old. Tough decisions but only you know when enough is enough. Best of luck.

I'm sorry to hear about your outcome.   Not even my pouch gave me that many problems at the beginning and I've been no happy camper with mine after all these years either. 

Two months is too short a time period for many j pouches to reach optimal, and hopefully satisfactory results.  I had a j pouch for 30 years and it took well over a year before things stabilized.  Still, I had ongoing anal discomfort, frequency issues (8-15 per day) and occasional “accidents”.  I stayed with the pouch because I strongly wanted to avoid having the bag.  I found using a bidet regularly, use of barrier creams, avoiding foods that caused problems and wearing an absorbent pad in my shorts when needed helped me to lead a near normal life.  IMHO, I would give your j pouch more time to “mature” before considering the major surgery of pouch removal.  Once a j pouch is removed, there is no turning back.  Your options at that point are an end ileostomy, plus there are the k pouch and BCIR that do not require use of an external bag.  Hang in there, and best of luck!

Does anybody have any suggestions on what I might check out/do? Since I have no issue with ostomy life, it's very easy for my surgeon to say "if you don't like it we can remove your pouch," but I don't want to go through such a surgery unless that is really the best way to get my quality of life back. I want this jpouch to work as they told me it would.

 

Given that I have issues with spasming-type rectal pain and incontinence, is it possibly nerve damage? What could be done?

 

My surgeon said that I'm welcome to try cipro/flagyl, but I heard that antibiotics are bad for long term pouch health. Is it worth experimenting?

 

Although I'm abroad in Germany, I am considering getting a second opinion here and any tests to check for problems that could be resolved.

Solomon, antibiotics aren't candy, but whoever said vague negative things about them to you was being unhelpful. If your doc thinks they're worth a try, of course you should give them a try. Have you tried an antispasmodic?

Soloman Seal if you really have no issues with ostomies, I believe you're better off.  I'd go straight to one too if I had no real issues with them.  In fact a friend of mine who had a J Pouch was forced to give up their j-pouch after becoming paralyzed below the waist.  My friend tells me she's happier with her ostomy now.  But given how I feel about ostomies, I can't blame you for looking for more alternatives to live with your pouch.  I wish there was something I could tell you.  Eating the right foods still seems to make the biggest difference in my case after all these years.  In fact I just experimented with using bee pollen and found it made no real difference.  That bummed me out since it's readily available and not expensive nor do I have to put up with a gritty Metamucil taste too. 

I am a year and a half out from removal.  Two months for some is really not enough time.  Period.  Period.  Period.  I had all kinds of problems like you.  No infections but problems none the less.  You have to give it time.  It's not easy... Definitely not easy.  But progress and improvements are so slow to come they seem like it will never happen.  I know.... I went through all that.  Still am a year and a half later.  But.  I will tell you one thing.  It got better.  And it still is getting better.  Some of us just take longer.
That's what my surgeon said.  She could fix it for me.  With an illeostomy.  I said no thanks.  Glad I did too.  I will wait. 
I am at a point here it works properly sometimes and other times it gives me trouble.  I accepted the fact... And you should too... That normal left when they took it out.  This is a major operation and it takes a long time for your body to acclimate to not having a colon. 
Personally I know it will get better.  It was so bad before.  It has gotten so much better over time.  But man... Ya gotta be patient.
Two years.... I would give that long.  I decided long ago if it doesn't work right in two years I will go have an illeostomy. 
Another thing to think about.... Some surgeons don't take the j pouch out.  They leave it in and give you an illeostomy.
My opinion.  And mine only.  It's a long road.  It's the rest of your life.
I am surprised they would give you that option so soon.  I was surprised she said that to me so soon.  But I think she said it to keep pushing me to keep it and work through the problems.
Even before I had mine out during consults they said a minimum of 18 months for things to adapt.  I belive that.  I am living it.

I'd try an antispasmodic. If that doesn't work then you might want to try tincture of Opium.  There was a tread a few months ago about tincture of opium  https://www.j-pouch.org/topic/o...ture-changed-my-life

 

He said he is taking an antispasmodic. 
I take them myself and they work for me.
That was a huge problem.... Urges to go constantly.... Until I took an antispasmodic.  Did wonders for me.
But if he is taking them and they are not working... I cannot give advice. 
Only thing I can say is give it time.
Different foods... Drink alot of water.  Even though you don't feel like you need it.... Drink water.  I sometimes just down a bottle of it.  I have one with me all day.... Drink constantly.  If I don't... And there have been times.... I don't feel well and it starts acting up.  Just my experience.

I agree that 2 months is too soon, but it is a warning that you need to be proactive in your approach, as the more typical healing process is not taking place.  You have several times mentioned nerve damage and J pouch surgery does allow this possibility.  Of all your symptoms the incontinence would concern me the most.  I speak from experience and incontinence was what caused me to have my J pouch removed. I pretty much knew from the first that it wasn’t going to ever stop leaking but I tried everything from antibiotics, suppositories, cotton balls, enemas and so forth. The surgery had damaged me and there were structural issues. Some things helped a bit for a while. The J was disconnected at about 18 months and removed about 24 months after the takedown. Now have end ileo and am satisfied.  Really the only thing that helped was tincture of opium but I still leaked and leaked with butt burn, really a very difficult problem. One can adjust to life with a poorly functioning pouch but it is an individual choice as to how much one wishes and or needs to modify ones life to accommodate the pouch. Fortunately for most this is a pretty minor adjustment but for me I saw it was a huge change and therefore opted for removal.

Very well said.
It's all personal.
We all have to make a decision when things are not right.
I am still having problems myself but I made the decision to give  it more time.  Besides.  I cannot afford time off work.  I am still recovering financially from the first one.  Surgery that is. 
Even if I wanted an illeo I couldn't do it now.
Good luck to you.
Give it more time.

Scott- Bo Shen’s guide to pouchitis says that persistent changes to gut microflora (antibiotics) make chronic pouchitis more likely. I am considering waiting a little longer before trying, although the idea of something making me feel better is very attractive. My antispasmodic seems to help some but I think I’m getting vision side effects.

 

GD- if I had had a 3 stage op… I probably would have stopped at stage 1. Honestly, it’s crazy that my doctors used the term colectomy and jpouch interchangeably. I was told that if I can get a jpouch I should, but now I feel like that was crazy talk. But after I had the jpouch constructed it seems crazy to remove it without seeing if it could be a good experience too. I just want to make sure that there isn’t a safer and simpler way to quality of life than jpouch excision. My main concern is creating more adhesions and taking the risk of impotence a second time due to pelvic dissection. Also, wasting more time having surgery and recovering…

 

Mysticobra- I spoke with 4 different pouchers who I personally knew before my op… all of them said they were out and about by 2 weeks and feeling great around now (typical blog, 4 weeks for 6-8BM without urgency:
http://www.ihaveuc.com/the-jou...a-completed-j-pouch/ )

I guess the thing with me is that I had a two step procedure and ended up loving my temporary ileostomy. For me, my life was basically uncompromised. Zero pain, zero GI symptoms, zero medications, and my setup with my bag let me exercise and do watersports.

 

I had been told from the beginning that I was young and (otherwise) healthy so jpouch would go really smoothly for me. Instead, I’m suffering pain, incontinence, and urgency at a mild/moderate UC level. I’m carrying pill bottles with me again. I never bought into this.

 

EDIT:

Thank you all for the support... it's nice to ask these questions of people who have been through it. I feel like I complain a lot, but it's hard not to when things are bad and you were promised better. It's good to get it out to people who understand the thought processes I have.

I understand where you are coming from. 
I wish mine was only two months.
I had complications and took nine months just to get back to work.  My pouch was acting terrible at two months.  In fact that was about the last time I was in the hospital.  I was in 8 weeks total.  I just had a bad experience and it seems it took forever to straighten out.  And it is.  It is getting better for me.
I would hope the same for you.
I have to admit it was the most terrible thing I have ever gone through.
But I look back and it could be worse and appreciate everything I have now.
I hope you get better with time.
Keep us updated on how things are going.

Hey guys, short update.

 

I was able to get two additional second opinions: I'm being told that my situation is not what it is supposed to be but that I need to make it through more months (6 month point) believing that things will still work out well.

 

I got sick of feeling so poorly, so I decided to give the Cipro/Flagyl course my surgeon and GI suggested a shot. I started last Wednesday, and by Friday/Saturday I noticed changes.

 

My BM's are much less gassy and are rather easier to empty. I have been able to step the lomotil back from 4 tablets to 0 or 1 daily.  My BM frequency is lower than it was before the starting the antibiotic course.

 

Leakage during both day and night is still an issue (all my underwear remain soiled). I am still getting crampy/spasmy rectal pain.

 

I am quite happy to have some improvement to my quality of life, but obviously still upset with the daily leakage and the pain.

 

Does anyone have experience with early pouchitis? I feel like I have had these symptoms since shortly after takedown. I have read several studies saying that early pouchitis is more likely to be chronic and/or refractory...

I've been on flagyl and cipro from time to time and while some improvement is noticed early on, most of the improvement comes much later......for me.  So, I suggest you hang in there taking the meds as prescribed and even wait a few days to a week after you finish the course of meds to see how you are functioning.  Meanwhile, I also suggest you prepare for the leakage and/or seepage by wearing a pad in your underwear and using a bed pad while sleeping.  I purchased waterproof crib pad material from a fabric store and had them cut to the size I wanted them.  They were flannel and waterproof.  Also, washable, which made them very practical to use.  I also wore pads to bed and changed them throughout the night as necessary.  Hopefully, this will be a temporary need and everything will even out for you.  Your B.M. frequency seems very, very reasonable!

I remember going to a family party at about 3 months and being terrified I would have an accident or live in the bathroom. I went out in the front yard and called my ostomy nurse because I was panicking. She said that I just had to put on my patience hat and wait it out. I did just that. It took a year, but after that things improved massively. I too had spasms, frequency, and was miserable. I was not out and about! Pouchitis hit me at about the 4 week mark and I have been on Cipro for over 10 years now. All in all, I love my pouch. It has good days and bad days. Sometimes I get up five or more times at night, but most of the time only once or twice. That is life now.

 

things that have helped me massively are:

      -tincture of opium - I could not take Immodium. It constipated and dehydrated me terribly. This works more gently. I take 10 drops mixed in liquids every 4 hours as needed. 

     - a bidet - on vacation recently, I couldn't wait to get back to my bidet!

     - Questran - this is a yucky tasting powder that you mix with water. It binds the acid in your stool to prevent butt burn. It has saved me when nothing else works. The biggest issue with this med is you need to take it separate from other meds because it absorbs them. 

I think you did the right thing by going back to see the doctors now instead of waiting longer.  I waited too long and ended up with c.diff along with cuffitis at a year.  That being said 2-3 months is still not much time.  I was told 8-10 and didn't count everyday as it was depressing.  I was in pain but found out taking Norco helped slow things down, along with antispasmodic, loperamide (Imodium), metamucil gel caps (I can't drink it - gag.)

 

I also found out they sell underwear at Walgreens.  They aren't the expensive kind so if you need to throw them away - no big deal!  The big box stores like Target and Walmart sell them too but who wants to walk so far when they don't want to use a public restroom?

 

The best advice I received from this site then was to not look for weekly improvements.  Look back a month and see if you are doing better.  We can do better for a few days and then fall back a few. 

 

Another J-poucher I met on here went back to an ileo at 6 months.  There was no way he could do his job as things were. Down the road you might think of just going back to an ileo and leave your j-pouch where it is.  It is my understanding that you do not have to remove your j-pouch to quit using it.  There's others that go back to temp ones while resting their pouches, they don't all go back to them and make the rest permanent.

 

Thanks for reporting back.  It's good to hear the antibiotics are helping.  Your pouch is made out of a body part that was use to passing the food along quickly and now the brakes have been applied.  It takes training for it to learn the holding part.