Throwing in the towel

I can certainly sympathize with you and the decision you are facing.  Although my situation was different than yours, the end result was that I could no longer keep my j pouch.  Deciding how much you can take with j pouch problems is a personal decision and it appears that you have made a good try to have the pouch work out well.  When I had my original surgery many years ago, I had a temporary ileo for 4 months and was greatly relieved when it was gone.

While I have read posts on this forum of people who have had positive results with an end ileo and are able to do many of the activities they enjoy, my personal feeling was to only have that procedure as a last resort.  I opted to have a BCIR (very similar to a k pouch) that avoids the need for an external bag.  The surgeon creates an internal pouch with a short section of small intestine along with a valve that keeps all stool and gas inside (no leaks) until it is emptied at your convenience 3-5 times a day with a small plastic catheter.  The stoma is flush with your skin,  located below the belt line and covered by a small pad or dressing.  I had my BCIR done by Dr. Ernest Rehnke in St. Petersburg, FL and received the best of care from him and the hospital staff.  They have a very informative website at www.bcir.com.  There are other surgeons who do the k pouch procedure including surgeons at the Cleveland Clinic.  Both of these procedures have a high success rate as well as patient satisfaction.

Since you have concerns about the conventional ileostomy, I recommend that you consider these two alternatives and research your options well before making your decision.  Several months after surgery, I regained my lost weight and was able to do any activity I wanted.  For me, selecting this option was an excellent decision.  Please PM me with any questions you have, and best of luck!

Bill

First off, i am so sorry that your  jpouch has turned into such a horrible and painful nightmare.

Next, I agree with Bill.

The end of a j pouch does not necessarily have to mean an end ileo although a lot of people on the site have found incredible relief and freedom once they had it done.

I was not ready to go that route at 18 and was Fortunate enough to have been given a k pouch at the time (37 yrs ago). J pouches didn't exist yet and this was as close to normal as I was ever going to get. 

That said, it is major surgery,  not for the faint of heart, can sometimes be made with your j pouch to save on gut but often requires a brand new pouch.

It has a learning curve that is quickly mastered and offers incredible freedom once healed.

I am it's greatest fan in spite of my own personal journey through complications  (mostly brought on by my own disease and not a lack of skill by any of the surgeons.)

I do not push it but like Bill offer it up as a viable alternative to someone who is young and active and maybe not be ready to take the end ileo leap.

No matter what you decide I wish you freedom from pain.

Sharon 

End ileos are a bit different than the temporary loop ileo.  If that's what you had. My temp ileo was a nightmare. 

My end ileo has worked out fine.  The pouch I had ended up being worse than the UC I had.  Way worse and now that it's all gone I have never had this relaxed feeling in my gut in my life.  All my stress was directed straight to my gut.... which was a huge problem.  It's all gone now.  Relaxed and feels wonderful for the first time for as far back as I can remember.  And I will be 60.  With the pouch the stress was worse.  Pain was worse.  Everything was worse down there.  I don't have to go into it.  You know. 

As I have said in other posts.  Good luck with your decision.  There is life out there.  Pain... Med... Free life!  And it's wonderful.  I never thought it was there.  But I did find it. 

Richard. 

P. S. 

My surgeon would not do any surgery on me unless I agreed to the pouch coming out at the same time.  She was right.  It would have caused problems down the road.  And it got to the point I didn't want it.  I had mine a bit over two years so it came out easy.  I would only hope you have the same experience.  And not too much adhesions and such. 

I had so much wrong with my j-pouch I had it diverted to a permanent ileostomy last fall.  I relied on the advice of people on here that said a permanent ileostomy was much better than temporary ones.  I had a horrible time with my temporary one for 8 weeks between my j-pouch surgeries.  Last fall my j-pouch was causing me so many problems I said I'd even take a temporary ileostomy if I had to.  

My j-pouch was left inside and everything was diverted to a permanent ileostomy. I wasn't ready to have it taken out.  Even with a diverting to a permanent ileostomy my j-pouch continued to wreck havoc and it was removed around 6 weeks ago.  I too am 60, like RIchard above, and decided I didn't want to try anything else like Bill and Sharon have. I feel like I already wasted 5 years trying to get my j-pouch to work properly.  Whatever you decide it is your decision and we all have our own unique problems.  

I don't consider getting rid of our j-pouches as giving up or giving in.  We are all different.  I think I was too stubborn in keeping my j-pouch for 5 years.  It took my GI and surgeon at the Mayo Clinic telling me there was nothing else to do as my j-pouch was dysfunctional.  No pouch advancement or similar surgeries were going to improve my pouch function plus all the suppositories, antibiotics, probiotics and diet changes were not working.  It was time to quit using it.  The imaging tests and biopsy results were ugly.  

Take care and good luck with your decision. 

I have having my jpouch removed in two weeks because of chronic pouchitis, cuffitis and a really persistent stricture.  And like you, I also have multiple drug allergies and had anaphylaxis to the last three drugs we used to try to treat my pouch.  We had run out of drug treatment options (I had either failed them or was allergic to them).  My surgeon was willing to redo the pouch entirely and hope the second time around things went better but I decided just to go for the ostomy because I am tired to being sick and having to have my stricture cut open every couple of months (and we had no reason to really think that the second pouch would fair better, just hope).  I am young and active and will be able to do much more without the jpouch and the problems it has been causing me lately (pain, incontinence, ect).  I am looking forward to having an ostomy and see it as an means to return doing the things that I love. It was a big decision and I am glad I took my time to make it.  Good luck!   

SCW    ..... Good luck.  As I've said there is life with an ileo.  A pouch can be either good for you and work... The people that have working Pouches don't come here.  If they don't work they wreck havoc on your body and mind.  An ileo is just another way to poop... period.  As is a pouch.  But boy it was not made to do it and will show you in so many ways if it doesn't work.  Whew... I'm glad mine is gone.  I can live with this farty little thing.  At least it can do that and with no pain whatsoever! 

Adios pouch.... I wonder what they did with it?  And my colon?  Never did ask.  I hope some students got some information.... And they just didn't get trashed... Which is most likely what happened.  Oh well.  Just a thought. 

TE.... I sure do hope things have smoothed out for you.  I know you were having issues. 

Richard. 

It's nice to know they are people out there dealing with the same situation even though it's a terrible situation in general. I should also mention I got diagnosed with Crohns a year after I received my j-pouch and it's been hell since as I've mentioned. I can't even remember the last time I've slept without destroying my bed or had a day without awful bloating, cramping and pain. I'm honestly just scared, I'm only 24 and I've literally been through so much from my diagnosis when I was 15. It just makes you wonder, why me? Anyways, I see my surgeon from the Clevland Clinic on the 18th to get a game plan going so I'll keep anyone interested updated VIA here. 

Yes... Keep us updated.  We are... Well I am... Hopeful for a good out come for you.  I know it's a hard decision but seeing how I made the decision I wonder why we live in misery when we don't have to.  I am living proof of it.  My best wishes to you.  It is a long road.  Bumpy... Curvy.... But it can be a straight road.  Think positive.  Om goodness.... I cannot believe the things I offer up.  I wouldn't have while going through it.  But I came to decision with help mainly from my wife and kids.  Grandkids too.  Five of them.  I was sick all the time.  I saw them all this weekend and enjoyed every minute.  I felt good.  I even sat outside on the swing with my eyes closed and listened to the wind blow through the leaves at the top of the pecan trees.  I was just so thankful to be tired from just work and everyday things.  And not exhausted from no sleep because of my problems. 

It was a nice feeling.  A grateful feeling.  A feeling I have not had in many years.  I am not perfect.  But I am better.  These are all individual results.  Mine.  But I never in my wildest dreams thought I could be......well....normal. As normal as I will ever be.  

Yes... You are very young.  But you shouldn't be burdened with this.  I would not know what to do if I were that young and going through this.  

I have had it all my life but it didn't really show its ugly ugly side until I hit 40. I've also said why me.  

I will shut up now.  With your youth I have no reason to be here telling you what to do.  I can only relate my experience at my age.  And I am getting old.  So that was a big part in my decision to do what I did.  I didn't have my biggest part of my life left.  I figure I have 20 years.... My luck I'll live to be 100 with this stoma... Lol.  Injecting some humor here.   I only hope good health comes to you soon.  Richard. 

I didn't want to make a new topic but, I had a question. Anyone that's been down this route, what is the recovery like for a surgery like this? 

RE5 posted:

I didn't want to make a new topic but, I had a question. Anyone that's been down this route, what is the recovery like for a surgery like this? 

Do you mean pouch removal?  If so for me it was a breeze compared to my first three to get my pouch. 

Richard. 

Mysticobra posted:

RE5 posted:

I didn't want to make a new topic but, I had a question. Anyone that's been down this route, what is the recovery like for a surgery like this? 

Do you mean pouch removal?  If so for me it was a breeze compared to my first three to get my pouch. 

Richard. 

Yeah, I just remember the first time with the temp ostomy I was down and out for quite sometime afterwards. 

The recovery has been better for me mainly because I knew what to expect.  It took me around 6 weeks to get things under control. 

So sorry you have do deal with this - what a fight you have fought and I know you are not "going down" easy.  I think you can lead a very active life with a permanent ileo - it will take lots of adaptation and patience.  I get the "why me" - it's just not fair - none of it - and when I feel that way I say, "why not me" and also - "it could be worse" - as in - other things people go through are so much worse.  Because you are so young  - the upside to this is you have time to make this work and to learn to work with it - to be active, do whatever you want, travel, etc. without the pain and worry of shitting the bed, etc.  etc. - again, so sorry and I hope you adapt and it just becomes sort of a bump in the road - you adapt over time- and the ileo becomes something of a "background" noise in your life.  You are so young and have so much time to have a lot of good things happen - this will not stop you - living without pain will be revolutionary.   I wish I could wave a wand for all of us and make these issues go away.  Since I can't, I wish for you a great outcome and then a sort of grieving process - and then, I hope you can just grab life by the tail and go for it and enjoy it in spite of the ileo. 

I like that statement. 

Living without pain is revolutionary. 

Fitting and very true! 

Richard. 

I don’t grieve booting my j-pouch from hell but you are right Angie, I grieve the loss of my life the way it was before UC.  

Like Angie said you are young and all the bad stuff I hope is behind you. Angie you are very good the way you word things. It still amazes me that we are strangers one day and the next day we have bonded when you feel alone. It still amazes me the support and love and that we are not alone. My sisters friend has a permenet iliostomy and is doing well. I hope you do the same.

Well I talked with my surgeon today. He wants to leave my J-Pouch in which 100% worries me considering what I've read. His reasoning was because I have 2 fistula tracts currently and he doesn't want to remove it until everything butt wise has cleared up. Not sure how I feel, I just want this non sense to be done and over with.

I certainly don't blame you. I guess my question to you is do you really really trust him? It took me a long time to be my own advocate.  It's our bodies and I don't have a problem asking alot of questions.  But it's so hard with everything  going on. I'm sending you good thoughts. 

I agree with Frances to try (oh my gosh - it is hard) to advocate for yourself -don't jump in without perhaps a second opinion if you can stand to hunt for it.  I could do a long rant on doctors, "the system", etc. - but I won't - because I know all of you already get it.  Thank you to those above you say I have a kind way of saying things - that made my day.  I agree that I feel a bond with those of you on this site - in some ways - I feel more understood here than in my "regular" world.  You  just can't understand the pouch and all of this unless you have one.  And, yes, TE, I grieve my life before pouch - and that was 30 years ago.  Ironically, I did not really grieve for it all that much back then - too busy and young...getting "after" it and life..and I'd still tell a young person that.  I think as time has passed, I feel more grief now - and I try to do all the "right" things to cope with it - and I know people who seem to cope better than I do.  I used to pride myself on my great "coping" abilities - and now they seem to be not as good - I think this is what they mean when they (whoever "they" are) say, "the young are resilient" - all the things one copes with over a lifetime add up to a lot of loss and - well - grief.  I would love to know what it felt like to feel great physically for one day - to have energy, no pain or discomfort, etc. - and those days are just not going to happen anymore.  I have said that I think illness just makes you sort of understand ( in a small way) what it is to get old and feel your body slowly give way.  Nobody talks about it much - to do so is to "complain" and not be thankful for what we have - and we could be in worse situations - look at refugees, etc. - but damnit, it's still hard.  Life is obviously meant to be very difficult - or it would by easier.  I adore all you people on this site.

You see that's my problem at this stage in my life, I'm so tired of talking about this disease. I'm tired of having to answer the same questions, I'm tired of getting refered to numerous doctors and I'm tired of essentially being lied to. When I first got diagnosed with UC back in early 2009 I was told if there's any disease you could have its this one because it's "easily treated." That's literally the biggest joke I think I've ever been told by a doctor. I mean ... Look where I'm at now all these years later. This disease, I can say, has literally destroyed my being. I missed highschool, I lost every friend I had, I've been engaged and then abruptly after cheated on due to "this disease is too much, I can't handle it." I don't know what to believe anymore honestly because I'm so used to getting screwed that I just put my head down and continue forward never expecting much. I also constantly stress myself out due to the fact that even if I do finally get better I still have the $1,000's of dollars worth of medical debt to look forward to at the young age of 24. Bill collectors are ruthless and could care less about your condition. Everything literally seems hopeless at this point. I don't mean to go on a pity party but, I'm at my wits end. 

I agree. You can always find people worse off than we are but that still doesn't mean that we don't have a lot to cope with.  

I hate it when people say that things could be worse when they have no idea what we are dealing with.

I also hate it when people tell me that God doesn't give us more than we can cope with. That insinuates that I am making things worse than they are. 

Hi Res,

Just felt compelled to share some of my thoughts on what you are going through.

First off- I'm sorry. Simply no words except that.

Dealing with the unfortunate circumstances that you have fought through for the last 10 years is a battle and know that you are stronger for having been through this. I cannot speak to this surgery or life with a perm ileo as I still have my jpouch and have UC (and did not love my temp ileo) but have been told I may need reversal surgery and perm ileo due to complications I've been having. I think one of the hardest things of dealing with what is your life currently is, is that you are so young. I was diagnosed at 16 and am now 29 and it has not been an easy road. I too have lost friends, home schooled through high school and i almost didn't graduate college but grateful I did!. It's hard being so young dealing with the weight of this disease, society i feel assumes since your young that you are healthy and youthful when alot of the time i feel like a grandma. And it is so ridiculously difficult to get understanding from most people without going into everything and in most cases I don't. 

You will get through this, and it will hopefully be the turning point to get you back to living a life you would rather live as a 24 year old.

Good luck and i wish you the best! 

I had my pouch removed and everything sown up for the same reason.  Tough surgery - but now I have never been healthier.  I teach yoga, study for a Masters and am raising my three kids!  Life can get better!  A permanent ileo is WAY better than a loop.  Give it a couple of months to settle - then you wont even notice it!

I usually tell people I've had abdominal surgery and they seldom ask for more details. I guess that's one positive of having a below the waist medical proble.  

My grandson asked me more questions when he was around 8-9 years old. We are only to tell children explanations that are suitable for their age. He has grown up with me ill and having operations so the abdominal or tummy surgery wasn't enough.  I asked if he knew what intestines are and he really did know.  I didn't know things like that at his age but that was over 50 years ago    

I told him that I had a disease in my intestines. The surgeon operated and now I am alive. That satisfied his inquisitive mind. Maybe it would work with people we don't want to share everything with. 

YOGI -

Good luck with your future surgery. I tried leaving in my j-pouch going with it being diverted to a permanent ileostomy.  Unfortunately that didn't work so I had it removed almost 2 months ago.

RES-

I am going through a similar situation right now. My J pouch is currently diverted with a temp ileo. I was so sick when I got out to Cleveland Clinic that they would not remove my J pouch but were only willing to divert it. I also have 2 fistulas. I had a fistulotomy on the one last month and a cutting seton put into the second fistula b/c "it is too high up" at this point. My cutting seton broke about 2 weeks post-op so I don't think anything good is happening with that fistula right now :-(   I am going back out next week to have my cutting seton tightened ( or fixed, replaced, whatever needs to happen!). Apparently this has to be done every 2 months or so. Fun fun stuff. My surgeon who is Dr. Gorgun won't remove my pouch and butt until all this is healed.... uggghhhh. I was re-diagnosed with Crohns five years ago and that is when everything fell apart with my J pouch. I am having a tough time gaining weight after all this and I don't love the ileostomy. I don't hate it either though as I am one of the lucky ones who can pretty much eat anything with no issues so far (really not bragging stoma-please don't block up now...hahaha). I really feel for you b/c you are so young! I am 41 and I think I am too young for an ileostomy (HA!) even though I know there are kids out there happily living with ileostomies. Try to hang in there (that is what I keep telling myself too!!). I have thought about looking into the k pouch but am just waiting at this point b/c my surgeon wants me to focus on gaining weight and he has the need to clean up the fistula fiasco before we even discuss anything. I also have a stricture going into my J pouch so I don't know if that rules out the possibility of a K pouch anyway. I feel your pain about the financial expense. I work for a local hospital in Allentown PA that has only paid a tiny amount of my Cleveland Clinic debt. I am just going to pay it off slowly and try not to focus on that. Wish I were paying off on a cruise or something more fun but my hope is that by going to Cleveand Clinic everything will turn out better in the end! Sorry for all my babbling...just wanted to let you know that you are not alone (even if it is older people keeping you company!)

Lori

I hate to say this with all that everyone else goes through. 

But my wife said it to me. 

Why go through all of this to poop out your butt?  Is it really worth all you are going through?   For me it wasn't. 

But no matter what we do we will never be normal again.  We can get close and I will say I have never been closer now in a very long time.  Like you said nobody wants a bag.  Ugh... But it's not that bad.  In fact... It's not bad at all.  Just another way to poop.  Just external.  

Permanent sounds so final.  And it is.  Because for me I am finally done with all the pain and no sleep and medicine.. Dr visits... Procedures.  I'm done.  In the past six months I have seen my surgeon 3 times and it's been a five minute visit to say all is good.  No problems.  And she has a huge smile on her face when I tell her thank you for giving me back my everything!  

I've said it many times. I dreaded and put off having my pouch removed only to get sicker and sicker.  We reach a point where we know deep down the only option we have is to do it.  And it is one of the hardest decisions I have ever had to make.  Because it is a decision you have to make yourself.  And live with yourself.  No one else can do it.  The finality of it is so overwhelming.  And another surgery.  Om goodness another giant cut and recovery.  No one wants it.  But it was the right decision for me.  I get better every day now.  I am not losing weight.  I gain a tiny bit every day.  I noticed last night while brushing my teeth that I could take my fingers and pick an inch on the side of my waist.  I have not seen that in years. Not where I want it to go.. Lol.. But at least I am not losing weight. 

It's just so sad to hear all the stories of what we go through.  So don't get me wrong.  I avoided it too.  But it was inevitable that I go external.  I see that now.  

And everyone reading this.  I hope you can get through this and make it work.  But don't spend years and years suffering.  As my surgeon said... I didn't believe her... I can fix it.  But you have to let me.  When you make up your mind.  Took me awhile but she did fix it.  And I thank her Everytime I see her.  And that makes us both happy. 

Good luck to all of you pouchers suffering.  I've been there and it's not an easy life.  It's a terrible way to live. 

It's so much easier to just let it go in a bag.  And I thought that many times while trying to hold it while driving home from work or at work.....or anywhere I was at while trying to hold it.   And I was right.  It is easier to just let it go into a bag. 

Richard. 

I understand how you feel My pouch drives me nuts too.   Sorry I ever made the decision.   Life's cold when you're stuck between that rock and a hard place.  I can't work, can't have any honest relationships, nothing.  Solitaire is my only game now. 

So sorry for what some of you are going through - nothing worse than the "God does not give you more than you can handle" - what a load of crap.  And I'm not an atheist - but that's just a line no one should use.  Yes, others have it worse, but that does not mean your pain is not real and awful.  Yes, I agree with the comments on doctors saying, "oh- this is a great illness to have" etc. - again, often a load of crap.  I have no easy answers.  I just feel less alone knowing you all are out there.  Regarding relationships - pouch (in part) pretty much killed my first marriage - so I get it.  I did remarry - to someone who just does not care that I go to the bathroom 10 times a day and fart so loudly when I do.  I hid it a lot during early dating - I'd find all kinds of ways to get him out of hearing distance when I was about to explode...etc. - I was young enough and strong enough to want it - I can remember nights nearly dying in pain as I could not go to the bathroom.  I'd just be miserable until he woke up and ask if he could go get me some coffee down at the shop down the street - and then let 'er rip - and light a match to cover the smell...did that for almost a year.  Well, it's 20 years later...still married to number 2. I wish all of you who are young could find someone who just does not care about this and gets that you CANNOT help it.  It would seem that any person with a modicum of decency would be able to handle it - but many people just can't.   They want some fairy tale - and life just isn't one.  They'll find out eventually....sorry to all who are suffering or lonely tonight.  People out here care.  I know that does not help...I wish I could make all the suffering go away - for all of us.  It gets OLD after awhile.  Doctors are ridiculous the way so many of them act about these illnesses - which pisses me off.  OK, I will end my rant.  Thanks to all of you for letting me rant and rave.

Hi everyone. So I had the surgery on the 10th and things seem to be going decently. My small intestine / J pouch was very inflamed and my intestines were literally triple the normal size. Only big issue i had in the hospital was my stoma retracting, becoming flushed after my bowels woke up. This was quite insane considering my stoma was easily 3 inches wide 2 inches tall and super puffy. Other than that the gas trapped in my shoulders / ribs is a pain I forgot about and I'd rather have not experienced again. Also I feel like I got hit by a semi but that's to be expected I suppose. My J-Pouch is still in which really worries me but one thing at a time I guess. Back to sleep I go. 

I hope your recovery goes as well as possible - surgery is so hard.  Know you have our support here on the site.  Sleep a lot if you can -sorry for that awful shoulder/gas pain - not fun.  Keep us posted and know we are thinking of you.

Congratulations on taking such a huge and courageous step. I know that you feel like heck right now and that those gas pains are horrible...walk. Walk, walk...walk off the gas...That is the only rule.

The rest will fall into place slowly...talk to the stoma nurses, ask all of the questions possible, get samples from every supplier, test, try and reorder until you find what works for you.

And please be patient. (no pun)

Sharon

These last few days have been rough. I still can't stand up straight because the stoma site is so sore and it's killing my back. Also, I still have pain in my ribs that varies on how I'm positioned and how intensely I breathe. I literally can't wait for this to pass, I'm beyond miserable. 

Yes, sore stoma site, possibly causing you to hunch forward, throwing your back off? I remember that. Laying on my side on my bed helped. I'd lie straight, then slowly curl forward and draw my knees slightly in and back and forth to ease the back pain. The deeper breaths can cause pain from the trapped gas but they're really what we need - a catch 22.  Can you massage the area around your stoma?It might help to try to keep everything moving but varied - roll your shoulders up and back, letting your side muscles lengthen, then slowly twist from side to side, while taking very slow breaths. I hope this stage passes quickly for you. Not fun.

Res - I know you are so miserable - I am so sorry - I too hope this passes and in a week or so you are past this awful phase.  I am thinking of you and hoping in a short while you will type and say, "ok - now I am dealing with this" - tired, but not in dreadful pain. Then, in a few months - "Ok - now I am actually functioning like a 'normal'person".  These GI surgeries are really hard and docs never really seem to get it - unless they've been thru it themselves - like our wonderful nurse Jan Dollar. Well, actually, I think they do get it - but they are so busy doing surgeries, they don't have time to think about post op pain much...and they become numb to hearing about it...please keep us posted and know we care out here in j pouch/ostomy/GI horrors land.  Sharon - thinking of you too - you are going thru a lot - I'm so sorry about your Dad - I hope you are holding up.

RES-

Hang in there! The recovery for my temp ileo surgery was SLOW. It will get better!! I am a total wuss when it comes to blood, needles, intestines hanging out of my body, etc so it took months until I was able to stand up straight. Everything just felt so painful and unusual. After about three months, I started looking somewhat human again. I am not saying it will take you that long but just letting you know that some of this suffering is normal. I was just so happy not to have butt pain anymore so I tried to focus more on that during the difficult times. Of course, that was easier said than done some days. I am hoping all your healing happens at a speedy pace!! 

I was hunched over for a long time.  I am lanky anyways but it is the only thing that irritated my wife.  The only thing.  But now I am standing up straighter and sittin up straighter.  Not completely there but will be.  Takes awhile.  

Can anyone explain to me why I'm still having large amounts of liquid stool pass through my rectum? I woke up earlier in an absolute mess. This wasn't mucus, it was stool. How is this still possible?

A few weeks after my surgery, I woke up to a big mess. This happened about 3 times and then all became "normal"...well my new normal. I don't think it is stool although I know it seems like it is. I am not sure what it was (just mucus or something leftover from surgery) but it did seem like poop. And it was everywhere. After the first episode, I ordered disposable pads for my bed. I used them for the first 3 months to be extra safe and then stopped. After a while, I was able to sit on the toilet and let some mucus come out once a day to a few times a day. I still do this but now I can also feel when there is mucus which needs to come out. An intact J pouch does seem unfair b/c you are dealing with a stoma and still sitting on the toilet with stuff coming out your butt. I am 7 months out from surgery (temp ileo w/ intact J pouch) and the whole mucus discharge thing has improved greatly. Now I am just trying to master swimming and which products work best for prolonged periods in the heat and water. There is always something new to learn. HA! You will get there. I know this surgery is not supposed to be a big deal, but it really did take some time for my life to normalize or somewhat normalize again. Good luck!!

RE5, do you have a loop ileostomy or an end ileostomy? A loop ileostomy offers an earlier exit point for stool, and it usually provides the path of least resistance, but stool can certainly slip by. If it's an end ileostomy then I'd expect this (the stuff that seems like stool) to clear up over time, though the mucus may not.