so Remzi is redoing your pouch? you said redo the plumbing a bit?? from what i hear, redoing the pouch is a huge surgery and its more involved than the initial one.  I'm confused? I will be seeing Remzi in July to just look at my history and current situation and see what he suggests. Shen at some point this summer will try to close this pouch leak again, but not feeling too confident. I will not go through a huge surgery again, so if a repair is not in the cards, I guess i will just keep my loop and stay as is.

Best wishes KNKLHEAD for a successful outcome and a speedy recovery. 

Pouchomarx, yes, this will be a very big undertaking for me, and I realize it's a big surgery. It was not an easy decision!  I'm considering this an investment for the future.  It was a tough choice since I feel 100% with the loop right now, but I'm confident in Dr. Remzi's skills.  

 

And thank you Marianne!  

Best wishes. Please let us know how you make out!!

I always wonder if another surgeon did my initial surgery if the outcome would have been different. I had mine done at Cleveland Clinic, but nothing but issues since day 1. its frustrating. Unfortunately i dont have the money or the available time off of work to try it again. Not to mention, I dont know if I could mentally go through it again, its been to hell and cant even say and back yet.

Best of luck to you!  I've heard it is really rough surgery.  But the goal is to get healthy!  Best wishes!

 

dianne

KNKLHEAD, Funny you should post this!  I'm a few steps ahead of you in the same process with the same docs (Ashburn and Remzi), recovering from step 2 of 3 (or in my case 4 of 5).   Please let me know how I can help you in any way or if you have any questions (if people would like I can start a new topic if that hasn't already been done recently . . . I'm brand new here).  You're absolutely right that it really doesn't get any better than those surgeons and the nurses at CC; I couldn't be happier with this admittedly very large undertaking.

I want to say that Dr. Remzi is wonderful. My 18year-old daughter is a complicated case and had previously been treated at Children's a National in DC and Johns Hopkins in Baltimore. We were referred to Dr. Remzi for a pouch revision and we couldn't be happier. I truly believe no other surgeon could have done what he was able to do for her. 

We will be returning to CC for the final take-down next month. Good luck to you. 

Good Luck with your surgeries!!  It sounds like an option I would pick too.  Might as well go for it as most j-pouchers don't have problems.  I'm hoping you will become one of those 

 

Also to Mr. Poucho, I feel like I identify more with you.  I can't complain about my surgeon, who trained at CC. The first GI who scoped me at Mayo, after my surgeries, did so without giving me anesthesia.  The nurses told me he was so good he did medication free colonoscopys.  He took me on a tour explaining it in detail.  It was the best looking j-pouch he'd seen in 5 years except for the cuffitis that was flaring.  He asked if I'd had my operations there, at Mayo's.  I thought later of telling him that I bet he said that to all the j-pouchers   I don't know remember what your problems are.  My problems are not due to its construction but chronic cuffitis (UC), chronic pouchitis and IPS.  I recently needed a balloon dilation that I think probably needs dilated again.  I hope things start turning around for you soon.

Best of luck!

 

I am just over 2 weeks out from having a redo with Dr. Ashburn at Cleveland Clinic. I had suffered from severe cuffitis and a chronic sinus for a few  years. Apparently I had both a leak and an infected sinus tract  that Dr. Shen was unable to see or fix. The surgery involved getting an entirely new pouch and removing the cuff.

 

I found the redo to much easier than the original surgery, but that could be because I had some complications with the original surgery.

 

My first pouch was done at Cleveland Clinic by one of their top people. It was very difficult for me to accept that there was no "fix" for my problems other than the redo, but it was clearly the right thing to do.

 

Hopefully this procedure will allow you to feel better and move on once and for all. 

 

 

 

Thank you to all!

 

I am sitting here at CC wide awake and thought there'd be no reason to not update.  I had my redo surgery Monday, AM (4.20)  I understand the surgery went as well as expected and I'm optimistic about a new shot  I have.  I have a fresh new loop ileo with rod//bridge for now and hope to have the rod ousted tomorrow, as well as the catheter.

 

I had  a rough go yesterday, with nausea and yes I did vomit and had several dry runs that did not make my  body very happy.  I think they changed both my pain meds and nausea medication that worked.

 

I have no pain unless I need to move around, not sure if that's just the anesthetics or not, but hope that stays the same.  Hope to keep undating here.  Thank God I work for a great company, have insurance and live 3 hours away to take advantage!

 

 

Thanks  for the update. I am very interested to see how you make out as I feel pouch re-do may be in my near future with Dr. Remzi as well. Here is to a speedy recovery, minimal pain and a VERY well functioning jpouch.

Hey KNKLHEAD, how long was your surgery? So Remzi had no issues getting the old pouch out? What is your recovery time looking like? Hospital time and getting back to work?

My surgery was about four hours, according to my  brother he said the surgery could have been an eight-hour surgery.  I guess depending on how many adhesions, etc.  Dr. Liska is backing up for Dr. Remzi, and he mentioned a cavity that they had to clean out, and I'm wondering if it was the Dr. Shen cavity.

 

I am confident I"m ready to go, but still on clear liquids (argh!) today (Thursday) and want to get rolling here.  I'm practically running around the floor five times a day.  The stoma is working, but I guess they want to see some gas in there, rather than all liquid.  I totally lost my appetite for "clear liquids," and sorry to say, not really putting them down.  Dr. Lisca said I might graduate here tomorrow to soft foods.  I wan mashed potatoes!

 

My bet is I"ll be discharged about Saturday, and they said I should expect eight total weeks from work, but in my mind I"m thinking I won't take that long -- I guess it's a good thing that we all feel we are a bit different and do things quicker, whether it's true or not.

 

On the rod or bridge that was put into my new loop that sticksout on either side, the stoma nurse preferred to put the wafer OVER the rods, and I still for the life of me can't figure out how that would see, even though she used lots of adhesives and such -- two days and two leaks.  My RN changed my wafer/pouch last night and I convinced her to put the waver over the rod, so it will lay flat on my skin and so far, no leaks.  Looking forward to getting the rods out to go to my dependable standby, Convatec duradhesive and pouches.

 

As far as pain, I am really only in pain when I stand or sit or move around, and I label it "soreness" that I can live with.  I haven't had a pain med in quite a while, hope to continue without if I can!

 

So happy to hear you are doing so well!  Wonderful news.  And only 4 hours in the O.R. That's amazing.  Wishing you continued good health!

 

dianne

 

You sound very happy for someone that's just been through so much.  It's probably better this time as you've been to this stage before.  I hope all continues to go well and you are back to work, maybe part-time to begin with, soon.

 

Thanks for letting us know how you are doing. 

Glad things are going so smoothly for you, K! You certainly were overdue for some good news. Hope your recovery continues on this path.

 

Jan

Hi, everyone!  Today is Friday from the surgery on Monday, and literally no pain for the last few days with the exception of soreness when moving because of the cut in the belly.  I have some sort of vacuum filter/cover over the cut that has not drained any fluid, but it seems to do a good job of holding everything all together -- my only request would be if there would be a way to make a perfect six pack abdomen!  

 

Today I am on full liquids, and I had THE BEST Cream of Wheat this morning!  I guess this is due to the fact I did have liquid but also a good amount of GAS in my bag that shows my innards can pass food and gas, to clear the way for some real stuff.  (I might mention while I was a bit aggravated, I think the cautious approach is probably a great investment -- as other times I had similar surgeries I probably shoved food in there when my small intestines were not ready and hadn't yet woken up enough to move gas.  This means lots of bloating and pain that messes with progression.)

 

My stoma is very close to the skin, and I'm looking forward to figuring out the best process and products for the next three months.  It's hard to get a new stoma when I was an expert "10 dayer" with my last one!

 

I don't know that I will suddenly have pain when surgery anesthetics wear off (?), but nice to be off pain meds so quickly.  I am optimistic, but realistic that there may be some pain to come.  I am leaking blood out of my butt from time to time, but I can sit on the toilet, get rid of some, then very little leaking from there.  

 

The toughest part for me now is getting a wafer to seal up, since it doesn't stick well to the edge of the vacuum filter/scar cover thing, and I'm leaking now, waiting for a stoma specialist.  My only complaint here is that CC could use at least one more qualified stoma specialist, because there are lots of patients that need assistance/direction, etc.

 

Thanks for reading.  If there's anyone else here at CC, let me know, love to go out and talk to you -- I'm often walking around at a reasonably good clip!

 

 

It sounds like you are talking about a wound vac and it probably won't be there too much longer as it's not producing any output.  My dad's had them for months at a time and I thought then that they should probably use them on all surgeries to promote healing!  I'm glad you are finally eating and have no pain!!!!!

I loved having the post when I first had my temp ileostomy because it kept my stoma well above my belly!  I also figured out the post would slide and I'd do just that in order to place the new wafer under the post.....first on one side.....then, slide the post a bit......and place the other part of the wafer under that side of the post.  I know what you mean about not needing to change the appliance any more frequently than once every 10 days!  You'll get there again!  Best wishes for a good meal.....sooner, rather than later!

Thanks for the posts!  Saturday morning.  One word of mention, I have had issues of high blood pressure -- night before last about 150 over 100, then normal-ish during the day, then 150 over 100 again last night.   The doctor indicated that it's probably the IV solution that is pumping me up, so the good news is I'll be un-tethered here soon and looking forward to taking off the gown, cleaning up and looking like a human!

 

Last night I had some meatloaf and mashed potatoes and it was heavenly!  I tried to really take my time, chew lots and not eat everything they gave me and seemingly, every thing is going through my system okay.

 

I'll be bold enough to say that on my sixth day I have absolutely no pain, and the soreness from the midsection is alleviating.  It will be interesting to see how the surgical site vacuum mechanism works and affects soreness once it's removed.  While I don't have too much of a belly, it is very apparent it is effective holding everything together while the site heals.  Pretty cool application of vacuum pressure.  The positives probably outweigh: 1.  Keeping this on for seven days keeps me from going home; and 2.  Ostomy wafers have a hard time sticking to the "drapery," or clear plastic that helps it to maintain the vacuum, and this makes it tricky to get a wafer over a nearby stoma.   Theresa or "Terry,": the stoma/wound nurse was a magician getting me a good fix for a wafer -- as all the ones I did (or others) failed because they were a bit tricky.

 

 

 

 

Wound vacs CAN be managed at home with home health, though if you're not close to home, I suppose that would be your issue.

Thanks, Rachel.  "Wound Vac."  That's what it is!  Yes, the nurses and I found a portable motor to continue with VAC pressure, but for some reason, it always developed a vac error, and the less portable big unit seemed to work without issue.   I might note that someone comes in every day to inventory that unit -- my bet is it's an expensive piece of equipment!

 

Pretty interesting technology.  I feel it helps hold the parts together when I cough, too. 

i had one of those after my initial nightmare surgery in 2008. I went home with a portable wound vac. If there is not a complete seal, you will get errors. I had so much trouble due to all the open wounds from infection on my abdomen.

I went home with a wound vac after my first surgery as well.  I hated that thing, but it really did work.

 

 

Update:  I returned home this past Monday, exactly a week after my redo surgery.  All continues to go pretty well.  I am reluctant to say how well/easy the redo has gone so far:  1. So that I continue to be prepared for issues, and 2. so that others do not enter into this too optimistically (or unrealistically!).  Having said that, my only issues are the butt leaks which are slowing down, turning more mucousy, and my stoma will be a bit more challenging -- I think it will mature a bit for me! 

 

As was mentioned, I've had two other surgeries like this before with another surgeon and it was far more difficult, but to be fair, they involved removing a colon and there were leaks of some sort each time.  But nice to walk around the block with no pain -- it's as if the system HAS been sealed up and worlds better!

 

I still have the new loop, have a follow up in June and will schedule the take-down here when it makes sense.

Good to hear you are doing so well!
The wound vac was no big deal for me.  It was changing that dressing every 3 days that was traumatic.  In the hospital I could get demerol.  At home it was just pills that did nothing to kill the pain when the nurse peeled it off.  It took a half hour to get it off the pain was so intense.  It covered my whole belly. 
I wish I could have flew threw that and have the positive attitude you had.  That's wonderful!
Richard.

thanks, Richard.   I didn't have too much problem with them removing the wound vac, but I guess it's like removing a band-aid from your whole belly!  I had no problems with it until they got to the unshaven hair part, yikes!  

 

But the doctor did a pretty good job of moving along slowly, and about less than a minute he was done. Mine may not have been as big as some, but it was a cut from the navel down to the top of the pubis, I think.

 

I took a picture of it and didn't look at it until I was healed up somewhat. I took it in the hospital after they gave me demerol and of course with that it was not painful.  I knew then why it hurt so much.  It was wide open.
I would post the pic but it would probably offend some.  Like I said in another post... It was like looking at someone else's wounds.
Richard.

WOW!   Yes, I can see how it would hurt taking it off if the wound was still wide open!  Mine was, luckily, stapled together pretty well.

UPDATE:

 

I had another post about getting a gall bladder attack, needing an ER visit four days after I returned from CC, but wanted to post an update overall.

 

I felt seemingly too good after having the first surgery!  And with the exception of the gall bladder issue, I continue to feel very good.  They gave me Augmentin for this episode, and I swear it (or the loose stools) caused me to get more tired (even more-so than when I returned home from the hospital.)  I have been off it for a few days, the stools are thickened up and I'm looking forward to not having to take two-hour naps during the day.

 

I am curious how I would have recovered without the GB issue -- I still do not have any pain, the output out the bottom slowly moved from red to more mucousy to pretty much none at this time.  It's probably a good thing that I get tired because I honestly feel there's nothing holding me back and it's a reminder for me to take it easy.  I can walk miles on end, appetite is good.  Oh, and I did post I had high blood pressure in the hospital 150 over 100 (I think due to all the fluids.) and at home I am getting lower-than-normal readings for me, especially in the morning -- just got 105 over 70.  

 

Again, I feel like I have a "closed system" for the very first time and I know it's early and I'm cautiously optimistic.

Aka, sounds like you are doing awesome!  Except for gall bladder issue.  Augmentin does cause lose stools.  It's murder on the belly too.  I remember my son taking it as a baby before UC.  

 

Wishing you you continued good health!

dianne

thanks, Diane. it seems as if any antibiiotic really is starting to aggravate my system.  I took Flagyll (sp?) for quite a while and realized I became (or was?) allergic.  It's too bad we have to take antibiotics, but they are important to get us through, I guess!

 

Best wishes for Jeff!  Hope you all have a great weekend!

Wow, it's great that you feel like walking for miles!  I read above but couldn't find nor do I remember why you are having your pouch re-do.  Sometimes I think I'm headed that way and wonder if I would go to a permanent stoma while in-between surgeries. The temp one I had in-between my surgeries did not behave and I wouldn't want to keep a permanent one - unless it was 500% better than my temp one was.  

 

Take care and please keep posting as reading your experiences are good for me and I hope others as well.     

Hi, TE Marie.  I hope it is helpful to others!

 

The reason I went to Dr. Remzi for redo is because I've had several prior surgeries with issues.  Basically "my pouch looked great," but I had issues.  I had a local surgeon who is fantastic and worked very, very hard with me!  My first surgery I had "butt pain" immediately when I stood up and I think it's obvious now that I had a leak of some sort.  Therefore, the takedown was also not successful.  I then had another pouch repair of some sort, with temp ileo, then takedown, then further issues with an abscess and leakage.  Dr. Shen at Cleveland Clinic did his sinusotomy procedure and he thought I was good to go.  Nope.  Then he did another one and that was not successful.  I was lucky enough to consult with Dr. Remzi AND Dr. Shen (they are both awesome) and Dr. Remzi said I had a "mechanical" issue and felt he could help me get the J-pouch that I was hoping for, but a complete redo.  So four years later, about 5+ surgeries and here I am again.  But looking forward to success and takedown end of July!  

Now I remember.  You are one of the guys that Dr. Shen was working on the sinus's.  I agree you gave your original j-pouch enough of attention. There comes a point where the upkeep isn't helping.  

Good Luck!

KNUKLHEAD., i know you are having your takedown today, but when Remzi did your redo, did he just revise it or did he completely take it out and create a brand new jpouch with new intestine?? His nurse Vicki told me he always tries to revise existing pouch rather than remove completely...just curious cuz i have a sinus and a leak.

Stupid question of the day.  Beside the ones in my head, what is a sinus?  And how is it different than a fistulia.

 

knuklhead, I hope all went well today and everything was successful!  Get better real soon!

Sinuses lead from, say, an abscess cavity to a mucosal surface. Fistulas go from one mucosal surface to another.

So, a sinus would go from a pocketed abscess possibly out to the skin surface. A fistula would go possibly from the inside of the bowel (the inner surface of the bowel) to the skin surface.

Those are just 2 examples.