Takedown being reversed ;(

So sorry your son is having a tough time. I know it feels like he's the only one but he's not. It sounds like a good idea to have everything rest and heal up. Perhaps things were not quite healed at the time of his takedown and that's why all the problems. I had an abscess and a fistula after my step one surgery and I could not have my takedown until it was all cleared up. So I was delayed a bit but it did heal pretty quickly. Best wishes to your son.

After 4+ years, my original pouch was reversed to correct a separation on the staple line.  The separation didn't show up during the multiple exams that I had when I was exhibiting symptoms- abcesses and fistulas.   This may be what your son is experiencing.

My pouch was reversed and I left the hospital with a diversionary ileostomy.  After a period of healing, the original pouch was revised, the cuff was removed and a new connection was made.   After another period of healing, I was taken down and am doing well.

The term of art for this series of procedures is a pouch advancement.   It's a bit trickier than the normal procedure since the pouch has to be brought down further into the abdominal cavity and the connection is hand-sewn, not stapled.  I had a very conservative surgeon and am pleased with the outcome.

My son just had a diversionary ileostomy last week after several years of suffering (different reasons). I too am sorry that your son is going through this and that he feels alone....he is not alone. Our plan is to  re-evaluate the situation in the next few months with an option to complete the next two steps again. In the meantime, we're taking  the docs advice and appreciating today....I can just see in less than a week how much  better he feels prior to surgery. It seems that it's not that uncommon to do a 're-do' and the success rates do vary. I wish your son all the best. 

 

SM, thank you for your kind words.  And thank you to everyone.  All of this is so complicated and I'm trying to learn as much as I can.  Right now Jeff is in surgery, been there since about 3pm.  Hoping all goes well.

 

Thanks everyone for all your kind words.  Today has been a really difficult day.  jeff is out of surgery and in his room but in Lots of pain.  He is so worn out.  It looks like they put in a loop on the stoma.  Anyone know why?  It sticks out so far from his body.  He's already saying he is not leaving the house.  I can't spend another six months in the house with him!  I'm going nuts as it is.  So hopefully this diversion will work and the fistula will go away and the pouch will heal By itself.  My surgeon is suggesting a consult with Dr. Remzi at Cleveland Clinic.  I don't want to go to Cleveland.

If your surgeon is suggesting a consult with another surgeon, it generally means you need to do it. He's telling you he's hit the limits of his knowledge and/or skill. Even if it involves travel. Perhaps you could try a long distance consult first, by phone/Skype/whatever.

Scott,  my surgeon actually did have a phone consult with Remzi last week.  I sent all the records out there and his staff went through them.  The surgery was done per Remzi's instructions with the thought that if we did go out there, it would avoid perhaps another surgery so Remzi would hve things the way he wants it.  I'll have to ask in the morning why there is the loop thing.  During jeffs original,surgery they had a loop because he was considerably over weight, but he has lost 100 pounds so there is a lot less to pull though.

I mentioned earlier that my son has a diversion last week. The doctor was Dr. Remzi and I  can't say enough good things about him. His staff is also very knowledgeable and great to work with. We too had to travel ---Don't forget the stoma is quite swollen after surgery and takes about six weeks to heal so you'll see changes in the next few weeks.

I believe that reconstructive surgery is quicker and less eventful with a loop ileostomy vs a pull through.  I've had both and the only difference that I noticed was that the loop was a bit more difficult to manage during pouching.  BTW, the surgeon who did my reversal and pouch advancement,  Dr. Sonoda at NY Presbyterian, trained at the Cleveland Clinic with Dr. Remzi. 

I had my j pouch reversed. I lived with it for a full year before I was fed up and asked to go back. As my surgeon did a scope she notices two things. 1. There was a tear no one noticed before but may have been recent, 2. The reason I was having so much trouble is my small intestines had called down and wrapped around my j pouch constricting it and cutting blood supply to areas of my body. I had my 2nd ostomy ( an end ileo because I asked for it) for 6 months. After the first month of having it I was feeling so good I started doing all sorts of things. I too did not want to leave my house but feeling that good finally I questioned why not. I had my reversal again on January 26th and so far I am heads and tails better then before. Pouch healed itself and the mesh she used to secure my small intestine to my abdominal wall seems to have done the trick.
Do the consult with remzi as your doc suggested
if you have to stick with him as he says he doesn't want to leave the house support him while gently coaxing the idea of going outside in small steps. If I found out my wife had said she couldn't stay around the house with me it would make me upset in a time I Def didn't need to be. But I'm sure you have your reasons in that regard. I'm sure the next reversal will be better. Again though the first couple weeks are hell again but does settle.

SM, thank you.  I'm glad hear about dr. Remzi.  I'm just lazy, don't want to go to anywhere in Ohio!  We r from NJ and I'm so accustomed to having what I need locally.  How much time did you have to spend out there?  Of course, we will go No matter what.  Also did you fly or drive?  And when you came home, has there been a local doctor that can manage his follow up care?  There is so much running through my head right now!

 

at Zuppss, good to know about Columbia.  I think a doctor friend referred us to him, but as I said, I'm from NJ and getting into the city, for me, is a pain in the butt.   My husband works there every day!  I also was concerned about being in a large hospital where I didn't know anyone.  At least at Robert Wood, I know a ton of people.  But it's a good back up.  Thank you!

Dgtracy, thanks so much for your input.  jeff had the reversal yesterday after.  i stayed in the hospital over night with.  Neither one of us got any sleep but he is in such a wonderful mood this morning.  I keep telling him not to let the bag define him.  He is not his disease. Well something is sinking in because he is looking forward to going home and seeing his friend.  And I just might get him to Disney in May!  He is up, out of bed and walking around the floor.  I can't believe his positive attitude today!  I'm just so thankful and grateful things went well and he is not depressed about the whole thing.  I think the idea of being able to eat food for the first time in 2 months is making him really happy!

Sounds like me when I finally had relief from the bad pouch before! I'm glad he is in that positive state. Will continue to send good vibes his way!

Glad to hear Jeff is doing well and is happy today.  As a mom going through this with their child I know how difficult it is to see them struggling and depressed. My daughter isn´t having the best time with her new pouch so far and is getting frustrated and scared.  I hope Jeff continues to heal and feels great soon.  Best wishes to you BOTH!!

Everyone, thank you for all your kind words and good wishes.  Today has been an AWSOME day for Jeffrey!  The first day he has had a good day in almost a year.  He is still having a lot of pain, and has not slept since walking up in recovery.  Only my kid!  We finally left the hospital around 3 p.m. In hopes that if it was quiet and he had no me to talk to, he would go to sleep, I sure hope so.  Now here is the funny part.  He is seriously allergic to cats.  Already had 1 anaflaxis event.  Welol, it turns out that his nurse, a lovely women has cats and must have had dander on her clothes. Well, Jeffrey must have breathed it in!  His poor face blew up like a balloon and he got all splotchy on his checks, and got real itchy.  I couldn't believe it.  Out came the Benedryl.  He was still splotchy this afternoon!  This could only happen to him!

Please keep me posted on your son's progress. We are day 11 post op and doing well.

I can't believe they took the pain pump away from my son this morning!  Wasn't even 48 hours post op.  Resident said they always do.  I looked at her and said I've had. 22 major surgeries in this hospital including open heart and no one ever took a pump away from me with 48 hours.  So we negotiated a compromise, instead of every 6 minutes let's do every 10 minutes and give IV tylonal. I can't spell the stuff.  That worked!  he got the pump back and slowly is feeling a teny tiny bit better.  Then he got a migraine and has a fever.  Fever they think is from the pain and not using that breath thingy.  So hopefully some genius doesn't try to take it away tomorrow.  

I have not experienced my take down surgery yet, but your surgeons plan sounds pretty good. If they rest the pouch and it can health then hopefully they can do the take down again.   

 

I feel sorry for your son it does sucks and hopefully it get better for him soon!

If you don't mind me asking how old is he?

I just want to say I'm so sorry to hear what your son is going through, and he is not alone. I was 18 when I got my j-pouch and went back for an ileostomy a year later due to a variety of problems and very poor quality of life. I saw another surgeon who thought a completely new pouch would solve some of the issues, but could did not have a solution or guess as to whether other problems would reoccur (such as bad incontinence). I was happy and felt great with my ostomy, and have opted to keep it- it's been 12 years now.

I'm so sorry for what he's going through. I remember being so angry at the time when I felt like I'd been promised that I'd feel better, then had such poor results while others seemed to have great results. How old is your son? There are now many support pages and groups on Facebook, perhaps he would be up for joining those, or at least reading them?

This site is truly wonderful....and I want to say thank you. I've been keeping up with Jeff's mom through the general discussion and ironically my son had a diversionary ileostomy on March 3. It's been two weeks since surgery and I could see immediately how much better he is feeling. His doctors said he needed a 'redo' about two years ago but he mentally couldn't face going through it again and he wanted to finish college...(he'll graduate in 8 weeks).  Thank goodness, he's been eating like I haven't seen in years!  I guess the reason I am posting now is like the response from Kate, I know my son is contemplating holding off on any second surgery. His doctor suggested to concentrate on how good he feels for the next six months before we think about the next surgery......all good advice (thank you Dr. Remzi)....the question I have for many of you is do you think most of the j-pouches out there are doing really well and the surgery is successful for most? I suppose it just depends.....they are now saying my son may have developed Crohns......thank you

SM, Jeff is doing the best in a year. he is finally eating, I think a bit too much, but this is the first food in two months.  I feel like I have a part of my life back and I can plan forward. For so long, I have not been able to make plans even to go out to dinner because he was in and out of the hospital for the last five months.  He is feeling like he has a bit of him life back too.  He is off the drain in his back, the TPN is gone, and he is managing his pain, which right now is pretty bad, but is getting better slowly.  

I was sorry to hear about your son.  I am also not looking forward to the next surgery.  They are so painful, difficult recovery, and just plain difficult.  If I had a choice, I would stay on the ostomy. But them I don't have to live with that thing, and probably would not want it either. my biggest worry is if they have to redo the j-pouch.  My surgeon said it is a horrendous surgery.  I figure if a surgeon says it's extremely painful and difficult, it's worse than that.  Jeff has such a difficult time getting the pain under control and needs boat loads of heavy narcotics, I don't know what else they can do.  I opt for a coma!  

 

Kate, my son is 24'but has Aspergers and is emotional delayed.  He is emotionally about 19-20.  That said, he is extremely smart. And very articulate.  Makes me crazy sometimes!  Im happy to hear that you are okay with having your ostomy.  Sometimes I think that all the pain and complications are not worth it.  But I certainly understand why folks keep going at it.  I just can't imagine it and watching my son breaks my heart.  

 

i hope everyone is having a good day and feeling better.

 

dianne

Hi Dianne,

My son is 22 so they're really close in age. I hope each and every day is better for your  son. He's been through so much with in and out of the hospital. Us moms need to stick together too....sometimes putting on a strong face all day can be exhausting when underneath it all our hearts our breaking for our sons.....so far, and I hope it lasts....my son is enjoying feeling better more than adjusting to the ileostomy....and trying hard NOT  to make a 'thing' of it....

Shari

Shari, you are right! we do need to stick together. it is so tough watching your child go through this.  Funny, why is it us here and not our kids?  Must be the age.  Jeffrey doesn't want to read about of people's issues, he said it scares him.  I can understand that.  And your right it is exhausting.  I am so burned out.  Jeff came home Wednesday, I went to bed at 5 pm.  I was up and down a little bit, but basically slept until 8 am.  Thursday, all I could do at home was go to the dry cleaners!  The whole time Jeffrey was in the hospital, I slept in my own bed 2 nights.  The rest of the time in asks up with Chatty Patti!  The drugs don't knock him out, they wake him up. So I was up with him.  I sat in a chair watching the hours click by.  I can't remember the last time I pulled all nighters like that.  But we do what we have to do.  We are super human!  I wanted to smack my husband say to me on Sunday that he was too tired to go see Jeffrey!  Tired, he had not been up for 2 nights straight.  Jeffrey is dealing with an illiostomy right now too.  But he is handling it much better than the first time.  Hope you guy feels better too.

dianne

Kate, Jeff is 24.  As you know its a tough road to travel.  He was diagnosed with UC at the age of 6, actually a few days after his birthday.  He lasted a really long time with his colon considering it was so ulcerated and swollen.  The Pediatric GI we saw said it was one of the worst he had ever seen.  So I figure we did really well having it last until he was 23.  This past year has just been a nightmare.  He has gone through so much pain, and like you, thought it be so simple, remove the colon, get a j-pouch and be done with this awful disease.  I guess it was not meant to be. ��. Glad you are doing so well.  Enjoy that wonderful baby of yours!

Dianne,

Sending you a big hug your way.....I really 'so' get it....all the things you said.....exhausted on all fronts...go do something for yourself....whatever it is you like to do...coffee and a book at a coffee shop, wine with a girlfriend, exercise, a spa....it will refuel you...you need a break....keep in touch...

Shari

Shari, i can't thank thank you enough for your kind words.  I'm doing a lot better now that Jeff is home.  I had a great hour and half massage before Jeffs surgery.  I hurt my back over the summer, long story, but as a result, I could not work during the holidays and ended up have nerve blocks and shots in my back.  I've been doing physical therpy which is really relaxing.  And yoga! Gets me through life!  So as stressed as I am, I do try to do stuff for myself.  I was supposed to go to Florida for 2 months, my yearly escape, but because of jeffs surgery I won't be able to go until the middle of the month at the earliest.  So at least I can get out of this frozen tundra!  

 

Dianne

Well something went well today!  jeff had is staples removed, so that has to feel a whole lot better.  We have to start getting him off the pain meds now.  He has been on them daily since September so we do have a dependency.  So now we are being handed over to pain mgmt.  I don't expect too much of a problem getting him off.  The doc gave us one last script for Percocet, so he needs to work fast.  But all in all he is doing well.  Thank you everyone for all your kind thoughts and words.  It has been such a comfort to me, knowing that we are not alone in this journey.  

 

I know now this is not necessarily the forum for this but I'm going to ask anyway since some of you have ostomies.  I cant figure out what I/Jeff  are doing wrong.  The wafer keeps failing.  Last night the poor kid had an explosion, poop all over his belly.  I felt so bad for him.  We just put that appliance on yesterday.  They gave him a 1-3/4 size appliance, bag and an extender.  The only thing different from last time was the extender.  So after a bunch of failures, I thought maybe it was the extender.  When one of us changes the appliance, this is what we are doing.  Someone tell me what we are doing wrong.  Because I can't figure it out.

 

take the old stuff off.  Clean belly and around stoma with warm water only.  Use the hairdryer to dry the site.  Then use the Cavilon,no sting barrier.  Then the powder, sometimes.  Then roll the appliance, place it on top of the stoma.  (It seems like a really tight fit). Press the center down gently and work the way out to the white paper part.  But we know to really make sure we have a tight seal.  Then Jeff attaches the bag.  We stopped using the extender because I thought that might be the issue.  Its not.  What has been happening is he gets some drainage under the appliance.  And then eventually it seeps out.  It's in the same spot all the time.  There is a loop and I'm thinking that may be the problem.  I don't know at this point.  Any ideas?  Thanks.

 

Glad to hear things are looking up!  I feel for him, my daughter had problems with leaks too and we never could figure out what we were doing wrong. She had to get in the shower in the middle of the night more than a few times. Does he sleep on his side? I think that made things worse for Lily.  Also, after you apply the powder do you dab the no sting barrier over it? That´s what we were told to do, it makes it like a crust. Also, we would put a heating pad over it right after we put it on. We were told heat would make it stick better.

 

Good luck with everything!

As we know, the waste will always find the lowest point to leak out of and that's a result of our bodies not being completely flat....what we found to be working is using Hollister product 7700 which is called Hollyhesive. It essentially evens out the surrounding area and is an excellent barrier. Instead of using the paste we're using 7805 which is easier to apply. I also recommend working with a wound nurse. Either request a visiting nurse with experience or call the nurse wound association in your area and they will help locate someone. You may also find info on youtube on how to cut and apply especially the Hollyhesive. It comes as a sticky square. We cut off the four corners so its not so pointy, trace the 1 3/4" circle and cut it out and then fringe (little 1/4" cuts) all around the outside so when you stick to the skin it spreads out nicely.....the taped part is the sticky part.

Suggest you consult with a wound nurse.  I had a difficult to manage ileostomy and found that using Coloplast Brava Barrier Wipes improved adhesion and protected the skin from leakage.  IMO, a loop ileostomy is more difficult to manage due to its irregular shape. Getting assistance now will help avoid nasty skin issues going forward. 

When I had ileostomy before surgery for j-pouch I used Hollister products.  It took me a while to put the bag on properly.  I must have called Hollister every other day to tell them the problem I was having with leakage. They would explain to me what product they would be sending me and how to apply.  If that didn't work I would call again and they would send me something else and explain to me how to apply.  This went on for about 2 months until they finally sent the right things that solved my leaking problem.  They are a wonderful company.  My heart goes out to you I know the difficulties you must be going thru with your child.  I hope this little bit of info helps    Grace

Mary Beth, you , me and a couple of the other ladies need our own group!  The guys must think we are crazy!  Thank you and I hope Lily is doing better as well.  She is way too young for this.  When does she go back to school?   I'll have Jeff try and sleep on his back, but he is a wrestler in his sleep.  I've never seen anything like it!

 

SM, my experience with visiting nurse was that we're useless.  When Jeff had the original surger last year, we had them coming, and would still end up in the ER because even they didn't put the wafer on correctly.  Once I met with the Ostomy nurse at the hospital and she gave me written instructions and I did it with her watching, I got it.  No more problems.  

 

Zuppss, I agree, the loop is a bit more difficult.  We do have the extender which does help.

 

now, what see that might be happening is that the incession extends a tiny bit beyond the loop.  When we pinched the loop together we saw this.  I thought if we went up a size, that might help.  Because the leak is always in the same area.  But last night Jeff put the thing on by himself and so far so good.  And so far, no skin burns.  He has scars on his belly from June It was so bad.  But he has also lost 100 lbs since then too so he has a little bit of unevenness going on too.  

 

Thanks everyone, appreciate the input!

HI, Jeff's Mom.  and my best to Jeff!

 

*  I have had TWO takedown reversals in my "career," and right now I have a loop ileostomy (this is required for potential future take-down and retries with the j-pouch.)  

*  I feel 100% normal and fantastic .. but I, too, am going to see Dr. Remzi in April for a re-do.  It is important to get Jeff feeling great for any potential future retry surgery.  But I can tell you, the ostomy can and does give life back!

*  As far as the ostomy supplies and leaking, I'd try to simplify .. sometimes the barrier stuff is not required and causes more work and potential failures.  I use Convatec Durahesive wafers that easily last a week or more (and yes, I have a loop ileostomy.)  I use the drainable and vented bags and found it's best to change them, if you can, every night to keep from the ballooning up. (the vents get clogged quickly.)

 

I have yet to see and wound/ostomy nurse know more about what type of appliance works best for me, but I'd certainly take advantage of any local expert advice that you can.  You and Jeff are going to be experts, keep plugging!  But there are lots of forums that discuss this topic and who knows, maybe a local person who actually has an ileostomy can help you figure it out a bit better!

 

As far as pain, I'd want to be as careful as I could about dependency.  He's got a great mom, though.   None of us are perfect, but with you at his side he's got a comfortable and bright future!

 

Best wishes.

 

 

Hi aka KNKLHEAD!

 

thank you for your kind words!  We are using the Convatec products.  I like them overall.  Never really tried anything else.  The loop is a pain.  The doctor was going to remove it yesterday, but I forget why he did not.  I'm afraid if he does, the stoma may fall into his abdomen since it is not completely above the skin, which I don't understand.  

 

I have to make make an apoint ment with Dr. Remzi.  Also Dr. Diets.  I want to see both of them because Remzi is bing on do overs and Dietz will attempt pouch repairs.  We have had out 3 surges in NJ but my doctor did have a call with Dr. Remzi prior to this last surgery.  And he is referring us to Cleveland.  I would prefer a repair because we do know for fact that Jeff has a short small bowl and there was so difficulty in making the original pouch.  So I would really like to see both of these folks.  Do you have to go there or can you do a phone call?  I live in NJ and have a small pet sitting business.  I am totally booked from June to end of August, I have no time to go out there during this time.  My clients have been booked with me since last year.  So it's not so easy to rearrange.  But anyway, I'll do what I have to do.  please let me know how you make put.  You have been through a lot yourself.  Lots of Good Luck!

dianne

I have a leak in my pouch and my surgeon at Cleve Clinic attempted surgical repair in August but it failed. Shen will try a repair in the coming months, but in the mean time i scheduled a consult with Remzi in July. I almost died in 2008 when i got my jpouch there and dont want to go through a redo again. I was hoping Remzi might have a trick up his sleeve but i keep hearing he only resorts to redos.

So true! I know my husband thinks I´m a little crazy, seems all I do in my spare time is research this awful thing. Its so hard watching our kids go through this, we just want to make it all better.

 

Lily is doing better but is exhausted. Her BM´s went way down during the day (only 4 today since 5am) but she seems to make up for it at night. They keep switching up meds, I´m sure she´ll get there, I´m just not very patient. As far as activity, she´s playing lacrosse although she gets frustrated that she can´t run as fast as she did prior to surgery. But 3 weeks post take down, back at school and playing sports seems pretty good. I think getting back to her life, at least somewhat, has been good for her.  Thanks for asking!

 

I wish the best for Jeff (and you!) and will keep him in my thoughts and prayers.

I had a leak - seperation on the staple line- that caused two nasty fistulas and an anal sinus before it was detected.  I learned that a pouch advancement was the only option. I had the first surgery in October 2010 and the take down in late January 2015.  My journey took as long as it did because of the scarring from the fistulas and the very difficult to close anal sinus. If you are going to have your pouch repaired, I suggest you do it sooner rather than later.  Once you're diverted you'll be less susceptible to developing fistulas, etc. which can greatly complicate the procedure.

wow alot going on for everyone....I had my initial surgery done by a non=experienced surgeon (my bad didn't know I shouldve asked how many he did and how successful was his rate) I was his first...needless to say I landed in Cleveland Clinic (this was 1989) almost dead! but my life saver was Dr Lavery and it took 3 more surgeries to get it right.  I had fistulas abcesses septic conditions infections etc...but it also took 6 months of healing the pouch for it to be right.  I just started to have problems 6 years ago...but before that I was so thankful for Dr. Lavery and all he did for me.  Keep strong and try and go for appt with Dr Remzi.

Marybeth, isn't it a little soon to be playing sports?  especially soccer.  I'd worry about the ball hitting in her in the belly.  Gosh, at 3 weeks take down Jeffrey was still in a lot of pain and still on heavy narcotics.  Now we know why, but at the time they chalked it up to post surgical.  She is doing great!