Who has contemplated or had a reversal?

I'm doing it.
I can't give any advice now.  But will be able to in a month or so.
Getting rid of this thing.
It's taken enough from me.
I am not spending any more time trying to figure it out while I waste away.
Done with it.
Richard.

I got sick and tired of all of that, too, and had my jpouch removed and now have a permanent, easy to care for end stoma. No more pain, no more meds. I hated my temp loop ileo, but I like my permanent end ileo. My sentiments are Richard's; I'd spent too much time with chronic dehydration, low blood pressure, anemia and pain or waiting for the other shoe to drop, which it did for the four years I had my jpouch. I also missed to much of my life during those years. Got it all back and more. The more at peace you are with your decision, the easier the process will be. Take your time, think about what's most important to you.

Wow... 4 years... And  cannot imagine another two years of this.  As this rough week ends for me it smoothes out some and you think maybe that she will drop.  But I know better.  That shoe is double knotted and not  coming off. It's 4am...cannot sleep again.  I can... But as soon as I dose off I release and have to get up to clean and about the fourth time I just get up and turn the tube on and eat some toast... Make myself more sleepy and hopefully sleep the rest of the morning.   My pouch is emptying with ease right now but 15 times at least a day. I am being conservative.   And my butt... Omg... It's not the burn I feel it as I clean and so much swelling.  Can hardly sit.  I drive a forklift for a living and am so skinny I sit almost directly on it.  Ouch. 
And the bottom line is it won't last.  It's part of a cycle of good and bad.  I will have a good weekend... Thank goodness as work has been hell.  But as the work week starts the bad part of the cycle will start again.  Been there and going there again. 
I need the relief you have Lambie   I don't want the bag but it would be and will be so much easier and less painful.
I am so happy to hear your story as it gives me hope.  Hope that I'll get better and stay that way.  I am over the Pouch.  And ready for the bag. 
Good luck with your decision.
It is one of the most personal and individual decisions I have ever made..
Richard.

Richard,

So sorry you are going through this.

My surgeon had put me on tincture of opium AND it does relieve the symptoms (.6ml 4 times a day).   This may be a last ditch option before you lock into a life of the bag.    At that dose, there is NO mental impairment.

I had been on it for about three years; treats the diarreah really well.

Godspeed,
Mike

Don't be sorry.  Please.  If it gives me back my control and sleep I will be a happy man!
I am on opiates to slow it down.  That does not impair me.  I have built up a tolerance.  It helps during the day but not this night....  I work afternoons... I should sleep till 10am...but am  up at 7am cause of what I call seepage. 
I think one I get healed up I will get my sleep back amongst other things.
I am trying hard to look at the bright side.
I would try tincture but I hear it's hard to find let alone get once you do. .... Glad it works for you.  I just cannot find anything that works 100 percent.
Some have suggested diets but each diet takes time to see if they will work.  I am losing weight and if I keep waiting I will not be able to have surgery.  As said in other posts I m skin and bones and that is not healthy. 
I can live with an ileo.  It will take me while to get used to it.....i m 59...stuck in old habits and such so getting an ileo is pretty serious. For me. But if I can do what I have done for two years I can get used to it.
I think now if I had one I would be still getting my sleep this morning and waking to a normal day.

"I am over the pouch and ready for the bag." Those are powerful words. It sounds like you have given your pouch enough of a chance and it's affecting your life physically and emotionally. I know this sounds corny, but I wrote down words like your quote for a year. Like, "I'll be able to actually work and then run errands."...."I'll be off the meds that are making me not feel well."....etc......I'd periodically look at the list and it made it so clear what I needed to do. BTW, my list of for the bag was a lot longer than against the bag!

Mike - I, too, am hoping to have reversal surgery in the next two months. Comments by Richard and Lambiepie are very eloquent and mirror my situation.  i like that old Carly Simon line: "I haven't got time for the pain." I am 63 years old, have had a pouch for two years and no treatment has helped enough (and I've tried a lot of them.) I really want my life, any real life, back. I took me quite a while to get my arms around going in a new direction, but I am comfortable with my decision now. Finally, like you, I posted my own question on this topic. Take a look; lots of supportive responses. Also look under surveys for one I posted on this. If you think about it, the results make sense. Good luck.

good luck, there's another post related titled jpouch removal a few posts about, you might find helpful as well.

My GI and my family want me to try Entyvio. I'm scared, I'm tired, I too want some life back. But I'm also afraid of surgery. For me it's a no win situation. When I have no inflammation my pouch is like a dream. But even diverted pouchitis is still there making me sick. I'm living a nightmare. Maybe if I felt better I'd be more amicable to this bag. I'm happy for you that you have peace with your decision.

I have had chronic pouchitis for years.  Antibiotics work briefly, but after they stop working it's back to the same same old.  I have an appointment with a colorectal surgeon nexrt month to discuss an ileostomy. .   I did speak with an enterostomal therapist briefly.  She said the ileostomy would not make much difference.  I hope she is wrong.  I would love to go back to eating fresh fruits and vegetables and not having to worry about where the nearest restroom is and most important to get a good night's sleep without waking up every 2 hours.

Msshoe,

What was the theory that an ileostomy would not make a difference?   I would think it makes all the difference as you won't have a pouch nor bowel movements.???

Thanks,
Mike

Well, this ostomy sucks. I'm up more a night than with the pouch. Every time I turn over a full bag wakes me up. It never stops. As for bathrooms, this thing needs to be emptied often As well during the day. And don't get me started on leaks. Do whatever you can to save your pouch.

AllyKat,

Thanks for your candor.  This is one of the things I fear in contemplating a reversal and locking into an ileostomy.

We're damned if we do and damned if we don't.    I don't know what the right answer is???

Thanks for your perspective!   I hope you find a solution.

Mike

My pouch was well built but my body didn't like it anymore than it liked my colon. I tried for 5 years. Every time it developed a problem it became chronic. I too changed my diet, VSL#3DS , rotated antibiotics,  used suppositories every night and for the last 8 months before surgery was on a soft food diet and had to give myself at least 5 enemas daily. I had chonic cuffitis, chronic pouchitis, IPS, adhesion pain, strictures and pelvic floor dysfunction. 

 

8/31/15 I had diversion surgery to a permanent ileostomy. I didn't think I could handle excising the pouch and recovery from that surgery now. It appears to have calmed down. It took me almost 2 months to get an appliance to stay on for at least 2 nights. I asked for my stoma to be placed in a place that isn't the best as the other options were at waist level. 

 

I'm able to eat food again.  I am getting back to  a better quality of life.  Looking back I wish I'd done this at least 18 months ago.

 

It's a personal decision that only you can make.  I liked the idea above of making pro and con lists.

Good Luck

This is very confusing.  I appreciate all the comments - good and bad.  The ET told me that an ileostomy would not be better than the pouch because it is an ileostomy.  She did not give a reason.  She did say that a colostomy would be perfect, but obviously that is not possible.  My brother-in-law, who is a surgeon, also warned me about possible problems with an ileostomy.  It's such a dilemma.  I hope the colorectal surgeon gives  me some good info.

I don't understand why she would say am ileostomy  would not be better because it is an ileostomy?
That.. Well that sounds ignorant.
I am having my pouch removed in less than two weeks and going to an end ileo. 
So this is not good because it is an ileostomy?
Would my pouch not be good because it is a pouch?
Unless I am not reading this right I don't understand.
Richard.

I think the implication is that since the j-pouch uses your natural sphincters and elimination function, it is anatomically and physiologically more like how the body should work. Having a constant flow of stool from your abdomen is not normal, but it can be a lifesaver if there are no other options.

 

That said, it is a balance of risk and benefit. If your j-pouch is causing so much grief that it tips the balance to outweigh the risks and inconvenience of an ileostomy, then it is not the better choice. I think that what this nurse was trying to say, but did not make the point, is that there is NO perfect option that is without its own set of problems and pitfalls. But, there is a best choice for you and only you can determine what that is.

 

Jan

Thanks all.  I will keep the appointment with the surgeon and see what he says.  I think Jan is right about what the ET meant, but I will talk to an ET also before I commit to surgery.  When I have a good day - which happens occasionally - I think I should leave things as they are.  On bad days, I do not feel that way.

Go to some of the ostomy boards like inspire.com  the United ostomy board etc to find out what life is like. 

I know they all have problems.
Keeping the colon had problems to.
The ileo is final.
I do understand that.
But I do understand I do not want to live with a pouch that does not work  and has not for over two years.
I am trying with all my might to go into this with a positive attitude.
But reading that what the nurse said just got me upset.
.

My first response after reading a medical person's statement that "an ileo would not be better" is that professionals may respond from a human perspective, too (not to imply that they're robots!) I've had medical people cringe when I've mentioned my ileo. When someone has a healthy functioning colon, he can't wrap his head around the concept of choosing an outside bag and this includes medical people (although I don't understand the "only a colostomy would be better" ) Only people who have a less than optimally functioning jpouch or kpouch, etc, truly get that what we consider living with and why and, therefore, the choices we make. This is just something I've encountered.

My take on what she said was b/w a colostomy and an ileostomy.

A colostomy, because it's in the colon IS generally easier: more formed stool = less time "filling up" and messing with appliances/emptying. Of course, placement areas impact that: descending colon = the most formed. Farther away = less and less formed. They may truly only have to empty 1-3 times a day, depending where it is.

An end ileostomy can vary, too. Granted, an end ileo AFTER pouch removal is farther up "the stream" than an end ileo created without ever having had a J pouch. The farther away from the "colon," the more liquidy the stool. This is why often people have more issues with their loop ileo than an end one; food and drink just have less time to allow for absorption of water, hence a more watery stool. 

When a J pouch is excised, it's not used in the end ileo, so you're further up the ileum, which may be more liquidy for some.

Ileostomies just can be harder to deal with because of that. The more liquid the stool, the greater chance for leaks, there's more bathroom trips, small bowel stool is more caustic than large bowel stool if the appliance doesn't fit well or leaks... I'm guessing that's the stuff she's weighing in on. Her experience with patients with ileos may very well be that they're more of a headache.

I've mentioned this before, so please excuse duplicity.  I'm in same boat--hopefully not sinking--of a failed J pouch and I  needed to face up to the ileostony. Instead I am getting a K pouch in two weeks. I realize not everybody can travel to get one and it might not be an option, but for some it is worth considering. Go to the forum: k pouch korner for some great  info.   I hear all of your pros and cons echoing in my head. Tough decision, especially after 15 years, and difficult to reimagine ones anatomy.  

Rachel, great explanation, thank you. JLH, good luck with your kpouch. I didn't have the nerve to consider that option.

FYI, My end ileostomy is 2 months old. 

Mine doesn't have a constant stream of poo coming out of it. It is more active at the end of the transit time. Therefore I know when it will be dumping more or nothing. Consistency isn't watery like it was with my temp stoma. It is like what I  tried 5 years to obtain using my j-pouch.  If you are one that eats frequently during the day it probably will spew more often than if they eat just several times a day.  This has been a pleasant surprise. As I said above, it has taken me around 2 months to get the wafer to stay on for 2 days. When my Internist called me Saturday morning telling me he was admitting me and the room # I didn't change it and took the supplies with. I went in fasting for blood work and had a procedure all wearing it. This ended up being my 4 day record setting use of the appliance. I  still have a  little skin redness so am back to 48 hours, per my Stoma NP'so instructions.  Call me  crazy if you like but I  took pictures of my stoma and surrounding skin to show her.  

 

I think a K-pouch is a great option but didn't want a larger surgery.  Do K-pouchers get pouchitis? I hope not.

 

FYI!
Whew.  Thank you.
Good news.
I would only hope mine works when I get it.
Well... I know  it will work.
I just don't want the horror story I had to get my pouch and the problems since.
I want to be one and done.
There is some great info on this post.
Thank you everyone.
I only had my temporary stoma for a short period. 
I didn't have many problems except it was a loop.
Blockages were the problem.
I would only hope the end is better.
I cannot take this painful... Can't hold it anymore..... No sleeping... pouch.  I am over it.
I got up this morning and couldn't hold it twice!
It's been a long time since that happened while I was awake anyways.
I just want to go through the day without urges and going back and forth to the bathroom 20 times a day.
Mostly with no results.  Everyday is different.
Thank you everyone for your posts.  Informative.
But... I will know in a week and a half.  No going back.
Richard.

te marie

I think a K-pouch is a great option but didn't want a larger surgery.  Do K-pouchers get pouchitis? I hope not.

 

apparently one can still get pouchitis with a k, but it is not as big of a problem   i'm taking a risk, i know, and will find out in two weeks.

 

richard

hang in there and best of luck with your surgery and recovery.  keep us posted please!  janet

I am too old, 59, for another go of it with a k-pouch.  I hope everyone's upcoming surgeries all are successful and you can get a better quality of life back.

 

Meanwhile I have an appointment with my Surgeon at Mayo Friday - 2 days from now. It was upgraded from seeing one of her PA's to her when they received my Internist's communication, sigh.

 

 

I'm 68!

Thanks, all, for your responses and input.
I've had more frequent diarreah and several nightime accidents recently.
I'm back to the Japanese surgeon and GI today.   I will pick their brains as to what their experiences are and what (if any) surgical options there may be.  
They seem to have to go through a protocol of prescribing a formulary of anti-diarreah meds.   Most are for IBS and I am not getting any results thus far.   The socialized medicine system does have its process which they have to follow.
My own US supply of Cipro and Flagyl have kept the attack somewhat in check.  They use this protocol as well.

I'll check in later.   
I've come to believe that I am powerless over my food digestion��    I just try to manage it the best I can and with any resources I can throw at it.   Intake moderation is the most sensible.

Mike

My heart is going out to every one of one and I wish I was there to give you all a hug!

I also have contemplated a bag, and had my colostomy for several years before the J pouch. I am in the bathroom about 20 times a day and lead a very active life with sports and travel but believe it or not have become someone accustomed to that many bathroom trips.  My concern is that the antibiotics are less effective than they used to be, I can't take remicade or the other biologics I was told as I have follicular lymphoma, which is not that bad yet.  I was told the surgery for an ileo would be very risky for me since I have had numerous abdominal surgeries and have so much scar tissue.  My local GI as well as Shen's surgeon told me that. Has any one else been told that?

I am so thankful for this site, you are all so wonderful.  I just wish we could all find better solutions.

 

Cousteau,

what r your options then?

Ally Kat, I just wrote Dr Shen an email and asked that question. I just hope I can hold on to these antibiotics or maybe go back to oregano oil for a while, maybe the hyperbaric will start working, I am trying to get Shen to write for additional sessions.  Being the compulsive business person I am I have a list of fallbacks to try that include opium tincture, activated charcoal and codeine sulfate. I am always doing a lot of research and there is the top SIBO specialist, which is almost the same thing as pouchitis, in Portland Dr Siebecker, who I could have another consult with and also  Dr Gerry Mullins at John Hopkins who is an alternative medicine GI MD who a couple people have referred me to. Last resort would be the risky ileo surgery.

Clouseau

who is Shen s surgeon?   On Friday I m getting the K pouch w dr Dietz.

 

 Yup, I've tried everything on your list for pouchitis plus I have nasty anal problems. Am sick from all of the meds, at least I think they are the cause of some other problems. Sixteen years of antibiotics can't be a healthy thing to do to one's body. I digress. 

 

So just curious who the surgeon is.  I'll ask about scar tissue as after four surgeries I've got it. Good luck, janet

My functional medicine Doctor wanted me to see this Dr at John Hopkins. I'd be interested if you go. I read somewhere, maybe this site, someone went and was not impressed.

Can you try Entyvio? I had melanoma but they are allowing me this. First infusion today and reversal in a month, yay, it's what's keeping me going! 

Im  going to ask my Drs about this hyperbaric treatment. I saw they have a dept a floor down from my surgeons office. There is no guarantee that this drug will work and I want to prepare myself after the reversal with alternatives. 

JLH,

I don't remember the name of then surgeon but he is from the Middle East as I went to the  Middle Eastern restaurant that night in Cleveland that he recommended. He is who shen recommends for most his surgeries at Cleveland Clinic.  I was very impressed with him.

I think the surgeon you are asking about is Feza Remzi

Yes you are right that is his name.

dietz is the only one who does K pouches.  On our forum 'pouchomarx' just had a J redo w  remzi and was very pleased. Do you remember the name of the restaurant?  Will be at CC on Thursday. Janet