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.  

 

After about a week of antibiotics, I feel like my frequency and pain are back up. It definitely helped, as I actually had one night with no BM a week ago. I woke up in the morning and was just so confused! 

 

I only have 3 days left to reach the 2 week point. Have the antibiotics become ineffective already? I still have less gas but I also feel like my BM's are getting watery again. I'm thinking about asking my GI whether I might try Xifaxin.

 

I just don't understand why all of you do this. I know that this is better than uncontrolled UC, but just about anything would be. Not having a bag is nice, but incontinence, GI symptoms,  and chronic drugs are much harder for me to deal with.

Solomon, everyone has a different experience, sometimes dramatically so. There's no "this" that we all do. I'm sorry the first round of antibiiotics don't seem to have continued to work for you. Trying a different one may be useful. I'd also suggest ensuring that you have the basics covered:

1) Have you been doing kegels until you're sick of them (and then done some more)?

2) Have you tried a thickener or two (e.g. Metamucilo, Konsyl, Citrucel, Benefiber)?

3) Have you tinkered with bowel slowers (Imodium, Lomotil)?

 

The consistency of your stool isn't the most important thing, I think. Ideally you will have no urgency to have to run to the bathroom, and little or no leakage. Sleeping through the night is also a valuable when you can achieve it. What you put in the toilet is least important. Good luck!

Scott-

My thought is that consistency of stool is tightly associated with symptoms.

 

1) I'm not doing kegels hat much. I'll try doing more.

2) I tried Metamucil and Questran, at the time I did not see much benefit.

3) Lomotil is among the few things that seems to help. Sometimes I take up to 4 a day.

Wow, I cannot believe that the CC would remove your pouch at this point! 15 years I've been trying for pouch removal and neither my surgeon or GI will recommend it. In fact, I can't even get the surgeon to do a lap to help me with these adhesions. I just spent another week in the hospital for all this and I truly believe my health would have been so much better if it was gone. But I heard the surgery is very intense. 

 

 

SolomonSeal, who is your GI ? and did you get your 2nd opionions for Cleve Clinic ?? Have you seen Bo Shen yet? hes the best GI when it comes to problematic pouches..

I do better on Augementin and Cipro than Flagyl & Cipro.  Xifaxian doesn't do much for me.  When my symptoms are in check then I can remaining on Flagyl or Cipro by themselves.  If I go off antibiotics then the pouchitis flares up in less than 2 weeks. 

If you feel that way about your ileo, I would strongly suggest that you do not get a j-pouch. You will run a significant risk of having a lower quality of life than what you have today and you may cause yourself lifelong problems. The only reason to get a pouch is if you want to avoid an ileostomy.

 

I do NOT want my pouch to fail. I know that chances are removal would be successful and I would be fine after a few months... but the risks are still so terrifying and I know that the post-op recovery will be very long and hard. And the adhesions, which no body will be able to predict whether I will have issues with later or not.

 

PLEASE PLEASE PLEASE anybody reading this, do not let anyone, surgeon or not, tell you that you can casually try a jpouch and go back to an ileostomy if it's not OK.

 

To answer the question about pouch removal, from studies I read the average loss of ileum is ~5cm for original end ileostomy and between 45-65 cm for pouch excision. People who have Crohn's or some other additional reason to remove more I saw lost up to ~100cm. Most responsible surgeons will not remove more small intestine than the jpouch unless there is a special reason. Output will always be more liquid after any intestine is removed. The stoma will normally be placed where you want along your abdomen (if the surgeon can reach), but it will be "higher up" on the intestine because you lost some to the failed j pouch...

Personally, I do not think the intestinal loss would be a big issue for me. My loop ileo diverted my jpouch +50cm ileum and I was completely fine with it. There are people who spend more intestine on their jpouches and are still fine.

 

Pouchomarx, I am studying abroad (intended for a year) as my surgeon told me that I should be feeling great 2 months after takedown. I have stayed in contact with my surgeon's team, and my GI back home. I saw a local GI too. So far I'm just being told to try the antibiotics and do another scope soon. Also look for improvements at the 6month point. If this does not improve soon I may return stateside and see Shen.

 

KS, I may try Xifaxin. So far cipro/flagyl helped but I feel like the effect is lessening after 1 week.

SS,

 

Xifaxan is really expensive, I don't know what your insurance coverage is overseas but Augmentin is less expensive and for me it works better than Xifaxan.   I hope that you feel better soon.

I'm rotating Augmenten for 2 weeks then Xifaxan for 2 weeks then Augmenten etc.

I'm also using Canasa, VSL#3DS and s.boulardii. For various other health reasons I can't take Cipro or Flagyl.

 

There are many here that do well taking antibiotics all the time.  I'm at 8 months of rotating them and getting worse. I've been wrestling with my j-pouch for  4.5+ years and it's time to make some tough decisions   Dr. Loftus, my GI at Mayo, has me scheduled for a pouchoscopy in a few weeks.  We know that the balloon dilation done in February didn't work.  He is going to determine if I need the dilation done under anesthesia for the efferent limb blockage. I'm going to discuss going to a permanent ileostomy with him and the surgeon.    

 

I have many other health problems so have no quality of life. I'm eating correctly for all of my health problems.  Pouring medications into my body is not working.  I can't make plans to do anything or go anywhere.

 

I'm turning 60 this year and don't have another 5 years to devote to a j-pouch that isn't working well.  Please don't tell me to go to CC as I am at Mayo's and my GI is the director of the IBD Clinic there.  He is a wonderful doctor. I didn't ask for the upcoming surgical consultation, he scheduled it.  He had one scheduled this time last year but I had a few months of doing better so cancelled it. 

 

I don't think several months is enough time to go back to an ileostomy. I was told it would probably take a year or more to fully recover from the surgeries.  I don't think it is time to quit using your j-pouch but think that I should have quit trying at the end of 3 years.

 

We are all different. 

I am wondering which surgeon did your j pouch?  Did he/she staple or hand sew to the rectum because that can make a difference...especially if something comes loose before fully healing or if they leave too much (that is why some prefer musectomy)?  As my GI told me before my surgery, surgeons like to cut and aren't great at problem solving, unless it involves cutting.  So he told me never to do anything until I check with him and he has exhausted all options.  To this day I trust him most, because when it was time for me to have surgery, he was the one who encouraged me the most.  I know the CC frowns upon it, but maybe you can get a second opinion from Dr Remzi, if he didn't do your original surgeries.  I definitely would not do anything until I had a pouchoscopy because it might be something that can be easily corrected, which unfortunately means you will need to suffer a while longer until you can return to the CC.  Since antibiotics provided some relief, it may just be that you need to give things more time.  I know things were rough for me until I switched to a bidet and used calmoseptine religiously and then the cuff started to get better and every thing started moving in a positive direction.

TEMarie- I'm 22 but feel like I'm 60 after all this. I am going to do what it takes to spend my 20's developing myself without IBD-like limitaitons.

 

Just wanted to say about the antibiotics: I stopped the course a half-day early... I started noticing my tongue had a foul taste all day and I was getting other symptoms of thrush. I don't think I'm going to touch cipro/flagyl again... I've used it too much. Taking two sachets of double strength VSL#3 daily after that.

SS-

I had severe UC that was Dx in November 2008 and by the end of January 2009 I was on the table. I understand your frustrations with the pouch and having to deal with chronic infections. My first 3 years of having my pouch I was in the hospital 6-8 times per year with massive pouchitis infections. I'd spend 3-5 days in and get stabilized and finish with oral Cipro and Flagyl. Then, 6-8 weeks later it would come raging right back and back to the hospital I went. As time has gone on it has gotten better. I'm not going to say it's perfect by any stretch of the imagination, but it does get better. I too thought about having it reversed and saying the hell with it, but I'm glad that I stuck it out. I still have leakage issues as well as pain, but you eventually don't notice the pain so much. In fact, I'm currently training to run my first marathon in December. I've started pushing my body physically back to where I was before I got sick and some days my body gets the best of me, others the mind takes over and I push through. All I can say is just give it some time and don't give up. They told me that there was a 1% chance that I'd get ED, I got it. Before surgery they told me that Remicade is 90+% effective, my body rejected it. Same thing when they tried Lialda before surgery. As a person that has had the odds stacked against them I'm still standing here fighting through. It gets better, a lot of it has to do with your mindset and your determination. Part of mine could be the fact that I'm a stubborn Italian as well as Taurus, its quite funny that my stubbornness drives my wife insane at times. All I can say is don't give up yet.

My Daddy and my Brother both had issues. Thry are 6'6" & 6'6 1/2" . They had the 3 step procedure and because of how tall they are it was barely enough to stretch. I am 5'10" and everything was done in one surgery with jpouch working right away. I saw my Dad's struggles with not being able to hold it and many accidents. They were in 40's and I was 25 and scared of what life would be like. I take my 8 lomotil a day, VSL and Protonix. I made myself hold it even if only a minute until I gained control somewhat. At night is a different story and sometimes the ugly happens. Makes me mad that I didn't wake up and feel the urge.  I am not willing to give up jpouch but a friend of mine had to and says she would have done it years ago had she known life would be easier. I'm single so not ready to go there yet.

Here I am, 6 months out. About two weeks ago I had a scope. There were a few apthuous ulcers, but my GI described the pouchitis and cuffitis as only "mild."

 

The thing is, my symptoms are not mild. I'm going to the bathroom about 3 times nightly and around 10 daily. My underpants are often soiled, and I am bothered by pain and urgency.

 

Taking VSL twice daily. Using lomotil about 2-3 daily. Taking pain meds pretty frequently in order to get sleep at night. I already failed cipro and flagyl.

 

I know I need to be patient... but toilet-centric life is not OK... I feel like I'm back at square one with UC sometimes... just that this doesn't include blood so nobody will take it seriously.

I take 2 Lomotil 4 times a day and my surgery was in 1990. It gets easier with time and getting to know your body all over again. Learn what foods affect you worse than others. Journaling helps to be able to look back. Stress can set you on rough path. Many things can cause flare up .

I waited 3 1/2 years with chronic pouchitis before having the pouch out.  Antibiotics CAN be harmful, but its a risk reward problem.  If you are okay with the potential risks and they make you better, then great.  After 3 1/2 years on antibiotics I still had a subpar quality of life.  I saw four surgeons about pouch removal and 3 claimed they could fix it.  But I was done.  I didn't want to waste more of my life on trying yet one more thing.  I felt like I had done enough and just wanted to move on.  Everyone hits that point at a different time, some never hit it.  Some would prefer to do anything and everything to make the j-pouch work.  Any of these is fine choices, its all about what you want, what you are willing to do and in what time frame. 

I was in my early 30s and wanted to have babies.  I didn't have a lot of time to wait for something to work, and I didn't want to risk my future fertility with a lot of surgeries to fix something I was perfectly fine getting rid of...Pouch removed in 2003 - no GI issues, no drugs, no diet restrictions AND - two beautiful children now almost 10 and 7 1/2.  It was the right call for me.  Wish I had done it sooner.

 

Jill