? Prolapsed pouch?

Yes, this sounds structural to me. Prolaspe, maybe, but it could also be twisting or some other mechanical defect. Scopes don't visualize this stuff. You may need defecography to diagnose it. This is fluoroscopic imaging where the pouch is visualized while you attempt to empty it. It is sort of like a small bowel series, except you are given an enema of thickened contrast. Sometimes they can tack the pouch in place if the trouble is just poor support. But, if you are having twisting or telescoping of the bowel, a pouch redo may be necessary.

For the time being, if you can function reasonably well by just taking the time to stand up and sit back down to more fully empty, that sounds like the better option, as opposed to surgery. I must admit, this happens with me off and on, and it is worse when my pouchitis is very active. I am 20+ years with my j-pouch and it has not progressed. But, I don't have continence issues.

Jan

I agree with Jan - if you can make it work - and I know that is up to you - I'd try to avoid surgery (I guess this is obvious).  If it gets completely crazy and you try everything non surgical and it becomes too much to bear - then surgery. That's just an opinion - and I guess it is "a firm grasp of the obvious" -I truly hope you are able to cope.  I have had times when leakage was an issue- and without surgery, etc. it went away...had pouch 30 years.  Good luck

Thanks Jan and Angie for your responses. I'm certain they'll agree to try and wait it out, which like you say is the obvious. Certainly my concern is it getting worse, and protruding all the time and/or complicating my evacuating more. Just wishing it would go away but not sure what I could do to make that happen. Hoping to have my pouch 30 years- seems longer than 2 that I've been struggling with it. 30 is long way away! But I'm pretty determined, at least most days.

thanks much!

ljz

You can do it - we never dreamed back then we'd be at 20 and 30 years w/ pouch! We never dreamed we'd be this old either  I'm sorry about your struggles - my experience has been times of struggle - but many, many more times of it not being all that big of a deal - attitude is everything.  Had hiccups and difficulties - the fear is always - this is not going to get better - that's where the mind goes - and generally, it does get better - either it gets better on its own, with diet changes, with meds.....or surgery as last resort.  But, it does get better for most of us out here.  At age 53, it's been getting a bit worse - but that's also because it's just harder to do some things at 53 than 23 - not as much pep in my step  Keep us posted and know we are cheering you on!!  Also, know you will have sad/down times  emotionally - and they will pass.  If more than a month goes by and you feel down - see someone to be sure you aren't depressed.  There is help for that - and back in the day, Prozac saved my life.  It was not because of my pouch --- it was because of a failed marriage.  I soldiered on for 3 years ...and finally got help - it turned my life around. No matter what they find out about these anti depressants in the future (and who knows what they are doing good and bad) - at that time, they saved me. And I am so thankful.  Good luck with all of it - reach out for help from doctors, counselors, etc. - you don't have to do it all alone - it's not being a cry baby to ask for some help at times - it's being wise and having courage to ask for some help from time to time.  Gee - I'm sure full of all kinds of wise advice tonight  ha  Take care

Thanks Angie for your encouragement and "wise" words. I do have lots lf support and will reach out when I feel the need. Looks like my referral won't get through in time so I will probably have to wait several more weeks to see surgeon. Probably doesn't matter, since I don't think surgery best option now anyway- just hoping he can suggest other intermediate options/ recommendations. �� LJZ

So, I'm kind of reeling from my visit Wednesday to the surgeon. I went in to see what recommendations he had for possible prolapsed pouch. He thinks based on my description that it is prolapsed but will need that dynamic Defecography  test to determine for sure. He'd like me to send a clear picture of it if I can take one  in the interim. Plans are to do that test, and same day discuss surgical options. One would be laparoscopic , with him trying to stimulate some scarring and what not- he did provide more technical explanation but it's beyond me right now, but don't think I heard adding any mesh.  Other option is to redo the pouch, remove current one that isn't so great anyway and make one with small intestine further up that has stronger tissue. A removal, new pouch , ostomy again, and the take down surgery is overwhelming but since I'm on  Entyvio , Lomotil, Colestipal, Metamucil, Iron, VSl#3 and still am in bathroom 15-30 times a day, maybe that's the route to go. If just the mucosal lining prolapsing, would not do full pouch, just some laparoscopic techniques. He emohasized the rarity of this, but says 70% don't have recurring prolapse. Obviously lots of other risks and considerations......trying to process all of those!

Has anyone had this prolapsed pouch diagnosed and surgically repaired?  Id like to know more about the progression of this condition, as mine currently isn't permanently prolapsed, just goes in and out on its own when I push. Not sure how long to wait- is there damage to sphincter muscle happening while I wait? Is the surgery more risky when I get older? Do I do it now and hope for better outcome for what my gastro doctor calls a dysfunctional pouch, despite my every effort to avoid a permanent ileostomy?

sorry to be so long winded- just hoping for knowledge from others who've experienced this or even a pouch redo for other reason.  Thanks so much - made it this far with the help of all of you on this site who contribute! A blessing for sure!

LJZ

It's best not to get to far ahead of the information, IMO. The defecography will provide key information, including just how socially awkward a medical test can be. Assuming you have a prolapse, I think some sort of structural repair is the only way you'll get your pouch to function well. Ask your surgeon how many prolapsed pouches he/she has repaired, and get a list of the options your surgeon is offering. Ask about the pros and cons of each one. Then it's less speculation and more decision-making. I'm sorry you have to deal with this, but I'm glad you a straightforward, correctable problem.

Good advice from Scott - men are so rational (often) and it's sort of good to look at things from that perspective - I get overwhelmed and emotional regarding health issues.  My sister, who has gone through a lot with her pouch - really got on a path of making decisions using rational, decision tree logic and taking a lot of emotion out of it.  She went through a hellish time for about 3 years - and guess what - she has been past it for about 5 and is doing just about anything and everything - spin class, running, busy raising her 3 kids, super active, etc. - she stayed in therapy for a good 2 years during her health crisis - which was lots of flying back and forth to Cleveland Clinic, etc. - she stayed sane and lived to tell the tale and is doing GREAT. I hope that this will encourage you.  It sucks to go through all this - no two ways about it - but as corny as it sounds, attitude does help.  I am the worst at taking this advice -I get quite worried - and so did my sister during the ordeal - but the point is despite the worry, etc. - she kept on working at getting well - took a long time - and she is healthier than she's ever been at age 47.  Happier too. There is hope.  I am nervous about an appt. I have coming up April 18 - having my own issues - scared, etc. of what they will find - mainly because I just don't want to have to go DO all the healthcare crap - the procedures, surgery, etc. etc. - it's like - been there, done that - no thanks.  Well, there is a choice to refuse it - or do it and hope you come out better after it.  I truly am thinking of you and hoping they can fix this - and when you get all your data - you can make a decision using the best available info. you have at that time- that's all you can do.  Hang in there- pulling for you to get through this and then write us in some time about how well you are doing.  Wouldn't that be wonderful?

I, too, was recently diagnosed by Dr Shen with 2 prolapses of the j-pouch. I have a mucusoal prolapse of the anterior wall with a fold blocking 75 % of the pouch outlet and a slight prolapse at the tip of the j-pouch. Dr Shen recommend physical maneuvering with B&O suppository;  if this does not work we would try endoscopic therapy to remove the fold blocking the pouch outlet;  and finally there would be an open surgery as a last resort. 

LJZ, I am curious about your experience with maneuvering your prolapse "when you push". I am struggling with the maneuvering technique and hope you or anyone has some advice. Its not as easy and very painful! My insurance has yet to approve the B&O rx, so I am still in alot of pain.  What are you doing for your pain?  This is all so new to me. If indeed you are diagnosed with a prolapse,  we could share info to help each other out. (And this is my first official post!)

Smiles!

Welcome Starry Night! Would be great to share info as we progress through yet another pouch experience. Ugh! My prolapse has not yet been officially diagnosed- could be a mucosal prolapse or actual pouch prolapse, more likely, but treatment would be different. Right now, the prolapse blocks my output, not sure %, creating pressure most the time but not pain as you describe. The pouch tip seems to come out but pulls back up/in itself so I am not manipulating it at all. I don't know what a B &O suppository is -Interesting that Dr. Shen suggests that before laproscopic procedure. I've heard that the prolapse may progress, so perhaps yours is more than mine right now. Did you have the Defecography test that confirmed it/ and %?

I hope you don't have to wait much longer for your diagnosis,  LJZ. I did have a Defecating Proctogram the same day as the pouchoscopy  (dual procedure nicknamed the Bo Shen Special), which was two weeks ago. It turns out that my pouch had prolapsed well over a year earlier, yet had been missed by 3 surgeons and 1 GI Specialist in my state. However, the early stages of the prolapse were photographed in a pouchoscopy from 14 months earlier.  I'm so thankfuI I finally went to the Cleveland Clinic for a proper diagnosis! 

In my case, my sphincter muscle was not damaged by not addressing the prolapse for over a year, as was confirmed by a manometry exam. I don't know if this would apply to your situation, though. I don't have answers to your other questions either, but Scott is right and a diagnosis should come first. 

Should you have a mucosal prolapse,  I would not recommend waiting as long as I did before taking action. This whole business of physical maneuvering is elusive & painful! Hope the Rx is approved by insurance soon.

Starry Night, hope you've been able to get your script- reading on the B & O suppository, sounds like that will help with your pain, maybe then allowing you to maneuver the prolapse. I'm assuming that means pushing it back in? How long do you think he will have you try that before surgical options? would like to hear if that helps.  B & O was not prescribed for me, probably cause no pain and not yet needing that maneuvering. But I will call surgeon next week to see if I should start up again with Hydrocortifoam b/c I'm having fair amount of bleeding from that prolapse. Have had low hematocrit numbers before, resulting in need for transfusions. My test still not approved- have this love/ hate relationship with my HMO. So thankful for what it has covered, but sometimes have to wait weeks for referrals. Ugh! Until that test, I will not know my options, and whether or not I can be treated by current Dr. in Chicago, or change insurance June 1 and go to Cleveland Clinic.

hope you're doing better! Keep us posted on success of new med!

ljz

Thinking of you and hoping you are getting better.  Hope your new meds help.  Sending caring thoughts to you.

Ljz posted:

Starry Night, hope you've been able to get your script- reading on the B & O suppository, sounds like that will help with your pain, maybe then allowing you to maneuver the prolapse. I'm assuming that means pushing it back in? How long do you think he will have you try that before surgical options? would like to hear if that helps.  B & O was not prescribed for me, probably cause no pain and not yet needing that maneuvering. But I will call surgeon next week to see if I should start up again with Hydrocortifoam b/c I'm having fair amount of bleeding from that prolapse. Have had low hematocrit numbers before, resulting in need for transfusions. My test still not approved- have this love/ hate relationship with my HMO. So thankful for what it has covered, but sometimes have to wait weeks for referrals. Ugh! Until that test, I will not know my options, and whether or not I can be treated by current Dr. in Chicago, or change insurance June 1 and go to Cleveland Clinic.

hope you're doing better! Keep us posted on success of new med!

ljz

I prolapse  often..almost daily..a few times into ER..to have it put back in..it feels like there is something there and I push way to hard..

Try your best not to push. 

For butt burn. ..the remedy is 2 glasses of lemon water a day..it will neutralize the acid and that problem ends for the day.

In my case, nothing extends outside of the anus (yet) so I'm not pushing it back in, but rather maneuvering the mucosal prolapse of the anterior wall out of the way of blocking the outlet of the pouch. This is done digitally via the vagina for every BM. I just don't think I am doing it correctly as I have yet to have much success without tremendous pain. Still waiting on Rx to be approved by insurance.

AndrewAZ707, what a wonderful solution for butt burn! I drank a glass of lemon water immediately after reading your suggestion.

LJZ, Dr Shen left it up to me to decide if I wanted to try the vaginal maneuvering technique or just have surgery. I don't do well with surgery, so I hope to quickly slide thru this learning curve. Surgery, for me at least, is always the last resort. I hope you won't have to wait much longer for your referral for more testing and your surgeon sets you up with Hydrocortifoam this week. 

Smiles!

Starrynight...

Eat whatever you want..it's all about alkalinity. .

Lemon water is a fast fix...if you've a steak dinner..etc...drink lemon water with..giant shrimps are an excellent way for formation...super high alkalinity. .fish ..etc..

Egg whites are highly acidic..

Starry Night, hoping you've got some relief by now, sounds miserable to have to maneuver it that way! Not sure I could- hoping you're getting it figured out!

ANDREWAZ707, thanks for suggestion of lemon water. Probably better for me than Colestipol 

I take! If you don't mind me asking, how long have you had your prolapse. Is it progressing/ getting worse? What is your plan - obviously having to visit ER not good, but does prolapse impact your daily life?  I wish I knew how long I could hang in this condition- some days I wonder! My bleeding increased a lot last week, which brings up other concerns for me. 

Caring thoughts to you both!

LJZ