It's normal to feel nervous before this surgery but if I heard the word "worse" from a medical professional, I'd be scared, too! Jeez! People don't always realize the impact of their words. Here's the thing: it's a complicated surgery in that the jpouch can adhere to things. Mine was stuck to my bladder and it took an extra hour and a half detaching it. I think that you need to speak with your surgeon about the procedure and all it entails. You also need to feel confident in her ability and if you do, then give it up to her.  Finally, as hard as it is to do this, try to see this last surgery as separate from your others. It was actually my easiest because I was so ready to make my life better. I was done. I had made my decision and maybe the confidence this gave me helped me get through. Maybe your body will respond similarly once your pouch is out, like "ahhh, finally out, no more meds." A different experience, a different time, a different outcome physically and emotionally. I found my first surgeries to be influenced by a "hopefully this will work" feeling. This one has more of a "let's do this so I can move ahead" feel. Very different. I wish you no complications and the easiest recovery so you can put this behind you. And unload away on here. We'll help you every step of the way!

P.S. Before my last surgery, I read accounts on here from people who had complications from surgery and STILL never regretted having their pouches out. That was powerful for me.

I've had it .  I was sooooo much easier than the first to create my pouch.  I was dreading it also.  But all that dread turned into nothing.  

I asked my surgeon and she said it was an easy surgery. 

She didn't hesitate either and would not give me my ileo without removing it. 

  I wonder now why others say it so difficult. 

Apparently for her it was easy cause I felt great and was out of the hospital and moving around at 11 days. 

And the only reason I was in that long is my Dr. ... Well.. Knows I am a pain in the butt and won't listen.  I am.  Lol. 

My first round getting it I was in the hospital a total of 9 plus weeks and no better at home for months. 

Worst experience of my life... So I have that to compare my pouch removal and ileo creation.  I was back to work in eight weeks... Could have been back at six... But I am lazy. 

Think the worst.... Hope for the best. 

I am so happy to have that stupid pouch outta my body. 

It didn't like it. 

All my best to you.  

You will and are in all our thoughts. 

Your not alone! 

Richard. 

TE Marie, I have been meaning to post to ask how you were doing. While I have no such experience I wish you all the best. I can understand given your several prior seeming road to perdition with surgery would make you apprehensive but in some respects notwithstanding the heavy use of the word "worse" I would otherwise imagine it should be a bit easier given the fact that its shorter than a colon, and by that definition should be less complex to remove. however, given the pain you've been experiencing indeed maybe the jpouch has somehow attached to say your bladder and that's causing the pain. the upside? you'll hopefully have removed the source of your misery and pain. if you've got a good surgeon which it sounds like you do, although she might be a little more thoughtful about her word choice then you've got to have faith in them. sounds like its time and it also sounds like it will be the best step for your health and quality of life. good luck!

i too am glad that my j is gone.  i've got a k pouch now and wish i had known about this option years ago.  would have saved me time, money, eliminated woefully too much pain, and given me a new freedom.  my energy has returned (aged some, so lost some energy) and anemia gone!!

you have already made the adjustment to the ileo, the rest will be easier.  best of luck, janet

Thank you, thank you, thank you all!  I appreciate your all sharing with your caring words.  

My surgeon is fantastic. I probably worded it differently than she said it.  She is at the Mayo Clinic and is one of the calmest people I have ever met. She told my husband and me about the difficulty after she did the diversion surgery on 8/31.  I was back 2 months later because of the bladder problem and my Internist's concerns about a possible fistula.  She did a pouch scope then and my j-pouch looked great inside. But I'd been on heavy duty antibiotics for the UTI's.  She knows what it looks like inside of me as she performed the diversion surgery.  She spent 3 hours out of a 4.5 hour surgery lysing my adhesions all over inside and peeling them off of the incisional hernia surgical mesh. I read somewhere that the blood supply is a major concern when removing it as well as the concern about my bladder.  Who knows what has happened since the last CTscan 4 months ago. I really don't want anymore CTscans as I'm sure I've had enough radiation for 3 peoples lifetimes!

Her nurse got back to me and finalized the 3/24 date today.  I will be meeting with my surgeon and doing blood work and other testing the day before the surgery.  Those will be scheduled soon. I am relieved.  You all helped me get pass the freaking out stage.  

I am under the care of a therapist and psychiatrist. I was not in the right mind to have it excised in August.  My surgeon agreed because she was considering my mental health.   I am looking forward to the promise of no more pain 24/7. Who knows maybe my husband can move back into the master bedroom if I am no longer up all night going to the restroom and/or in pain.  

Thanks again 

Hopefully you will have no pain and finally be free! 

My experience has been nothing but positive. 

There is adjusting of course.  But I surprise myself and am actually proud of how well I am dealing with it.  

A bag.  I have a bag.  It's really no big deal and I was so worried and upset about my future. 

All the worry for nothing.  

I am happy with no worries for the first time in twenty years!  

You sound like you have your ducks all lined up. 

I hope you do well. 

Richard. 

TE Marie,  You have my heartfelt concern... I understand what it's like to overcome both the surgery and the fear of going back after what you've been through. It can be overwhelming to voluntarily go back in that building, to that room, and trust those medical professionals again...with your life. I dread it, but I know that worry only makes me, and you, sicker... worry in and of itself never helped anyone and can only hurt us with its distraction and negativity.

The only thing that gets me through it, and through the PTSD-like mental state it can put me in, is prayer and doing my homework. I make sure I've talked it over with the best docs and informed patients, pick the best surgeon and hospital, even read up on a few studies, then decide to commit or not. Sounds like you have checked every box. Even coming here for the support of the world's best online community!

Be brutal with yourself and use every bit of your emotional willpower to not let the mind numbing worry win you over to its "dark side" :-) Religious people can look to faith in God and I know there are many different religions, spiritual teachings and philosophies that can help by teaching us the benevolent power that exists outside, inside and between all of us. (And I'm not talking "opiate of the masses" BS; this is bigger than that.) Make no mistake, worry is a killer -- of joy, of love, of hope and all that is good -- it can visit for a short time and cause us to consider whithering, but we cannot give it a foothold in our hearts!

I have been fighting w my j-pouch for 5 years. It has never worked right and the last three years I've been looking at my options, trying every medication and physical therapy. I waited for it to get better and when it didn't, I waited for it to get so bad the risk of surgery was preferable to the risk of daily sickness and struggle. To that end, I just committed to its removal April 1. I hope this response helps you, because as I re-read it, I realize I am probably also preaching to myself :-)

On a more practical side note: I also have mesh from an incisional hernia... My CC surgeon has said it shouldn't be a problem since it was biological and not synthetic. Do you know which type yours was? And how long did you have it in? I am hoping to be prepared for whether his was a realistic or overly optimistic response :-) Wishing you the best!

I have a mesh from hernia surgery a decade plus ago. 

Right at the public bone?  I guess that's what it's called. 

Well... This week... It has not healed after 3 months and I went back for the second time to have it cut back open.. Ouch!  But she found a stitch from three months ago hidden away and took it out.  But I also wonder if the mesh is interfering with the healing?  It's an inch long and an eighth of an inch deep and open now.  I apply a gel and cover it every day and hope I was the stitch and will heal now.  Doesn't sound like a big opening but man O man it's like playing the operation game.... Don't want to touch the sides to get the old gel out.... 

As said above... I was scared to have  a permanent ileo. 

But now I have no regrets.  It is a hard decision but if your pouch is poison to your body it needs to go. 

I am on the other side now and it is so much better I cannot say enough about it. 

You  still have to deal with it but in a different way.  But no pain and all that  goes with a pouch that does not work. 

I thought wearing.... Emptying.... Carrying  it around would be terrible.  It's not!  I feel great!  And it's only been 3 months since I've had it. 

If you had a loop prior this is... It's no  no comparison.  An end ileo is much more forgiving.  I can and do eat anything I want and enjoy food to no end now.  My appetite is voracious. 

I am hungry all the time and eat... Almost all day! 

Think about the positive vibes I am sending.  

I'm not in love with it but it is so much better than that pouch and butt burn and what seemed like lava exiting my rear end. That is in the past and I certainly do not miss it! 

Good luck. 

Think positive. 

Richard. 

JENJEN anh Richard, You are done right & JENJEN's 5 year story sounds pretty close to my 5 years one. My take down was 12/31/10 after 8 weeks with the temp ileo from HELL! I kept getting problems and then they became chronic and nothing ever fully got rid of them.  The last straw was the strictures. I have been under the care of a great GI at Mayo's for around 4 years.

My local GI referred me after his treatment plans hadn't worked well enough. I love my local GI. I think it is the sign of a good doctor when s/he refers us to others. He said he was a generalist & I needed a specialist. So when my GI @Mayo's set me up with a surgical consult I took his advice. He met with us and the surgeon. It was her, my surgeon, that explained I'd developed pelvic floor dysfunction too. The barium x-rays showed a lot. So I am confident I did all. She said a pouch revision wouldn't help. She wanted me to get it excised but listened when I told her I wanted to try diversion to a permanent ileostomy first. I have mental health problems too. They are well documented there.  My GI sent me to the Fibromyalgia and Chronic Fatigue Clinic there. My mental illness diagnoses were assessed there during a 3 day program. She is listening to me knowing all of this. 

When I emailed her I was ready for it's removal the surgery was set up on the next surgery day that she had completely open, 3/24. Man it's been a painful 5+ years...

I have no idea what kind of mesh was used. My local C/R surgeon did the hernia operation 6 months after my take down.  He did surgeries in 8 months. He was trained at the Cleveland Clinic so I'm assuming what he did was best. I wad told after my first scope at Mayo's that he had constructed a good j-pouch. That doctor asked if I'don't had it done there. He said it looked good except for the last few cm of my cuff. I guess it makes no difference since she had already seem the mesh. She said it was good mesh when I  asked if that contributed to the problems.  

I believe in the power of prayer and have a good relationship with God. I even go to a Christian counselling center therapist that prays with me at times. It is more counseling than prayer. I am blessed to have wonderful medical and mental guidance. I'm blessed I'm still alive and now know this is what needs doing.

You all have helped me so much here. I was blessed the day I found this group. 

I hope your wound heals nicely Richard. I had an abscess under my 1st surgical scar, where I had hernia surgery 8 months later, and came home packing a dirty hole there for several months. My husband just had to measure it. It was 2" L by 2" Deep by 1# wide. That was traumatic in itself!  I hope time is all you need for it to heal. My surgeon had me coming back to him several times after it to check up on it. A little funny side note. After my 3rd surgery, by this guy, for my hernia I woke up to a large invision. I asked him why it was so long as he'did said it would be around an inch. He said I had a BIG hernia.  Afterwards I thanked him for the mini cosmetic surgery as he got rid of the 2nd belly button looking thing under my navel. That was the result of the dirty wound healing.  My husband told him he should have just inserted a zipper there. He went in thru the same incision 3 times.

I feel better now that the surgery has been scheduled too JENJEN.

Richard this has been a 20 year journey for me as well. Like I've said, my warranty ran out at 40. I am 60 now.

God bless you all

Paulette Marie

P.S.

I was afraid of the finality of the permanent ileostomy as my temp was from hell. Most on here say that perms are much better than temps. So I  took the leap.  While it grosses me out sometimes it isn't that big of a deal. It's certainly much easier than giving myself 4-6 enemas daily with my j-pouch.  

I saw a man on the TV show, played by the elder of the Bridges brothers, the other night on Code Black.  He was told he needed a colonectomy as his untreated prostate cancer had spread to his colon. No way was he going to poop in a bag. Just let him die!

Of course his loved ones convinced him to have the surgery and choose life. It is a drama. I think we have thought that in the past.  Most of us had warnings as our IBDs or other health problems got worse. I feel bad for the FAPers and others that find out right off the bat that they have to have the surgeries removing their colons. 

TEMarie, I'm reading all the responses here to your post and thinking, "Amen!" Such good words, everything I was thinking and I can't even add anything better, just, "ditto!" If you find yourself reacting with extreme emotions, try to give them up - to God, your surgeon, the earth's energy, the spirit that connects us all, anything. Like JenJen said, worry really doesn't help or change the outcome, so give that worry away! Richard, hope you keep healing now.

Good words Lambie.... Well said... It's healing... Slowly... But it will get there.  

Paulette Marie, Thank you for your response and providing more of your story. It sounds like we are on a similar timeline, so I'm going to guess yours was a biological mesh too, since it was known by then that the synthetics were causing problems. I will know to be prepared for potential complications. Good to know you are healing well and feeling positive about the upcoming surgery! 

I am heartened by your mention of receiving professional psychological support... Your openness is much appreciated and inspiring! I've thought for sometime now that I need to admit I'm just barely functioning and that I should seek help. So I'm moving that item to the top of the list of things to do for myself next week. 

I also had to chuckle at your "warranty" comment :-) I keep promising God I will make the most of my second chance and continue to devote myself to my husband, sons, and family -- I just ask that he let me finish helping my sons into adulthood. They are 14 & 16 now, so a just a few more years until I'm out of what must be my "extended warranty."

Richard (and others), thanks for posting of life on the "other side." I take it all in and it's so good to hear first hand how much better "ileo life" can be. I will definitely NOT miss bloody, itching, burning lava butt and the constant planning to be near a bathroom. The thought that I might be able to really eat again, actually enjoy eating... what a meal that will be! 

Thanks to all replies/information give to Te Marie - what wonderful support we have on this site.  Also, yes Richard and others - thank you for reminding us that if we had to go back, the world would not end.  When I'm going through a really rough time with my pouch, I think...enough.....lets end this.  Then I get relatively easier times -but I quit working and I stay home quite a bit -I like staying home, but for many, this would be reason enough to go back to ileostomy.  Maybe because I am a 30 year poucher - and had many good years with it - got to travel, worked hard in my profession for 25 years, divorced, re married, etc. etc. - I have come to a place of peace with staying home more.  I definitely have anxiety/depression, but they are pretty well managed right now and I do meditation and all kinds of coping stuff (cognitive/behavioral) to manage.  Te Marie - I hope your procedure goes much better than expected, as so many have said.  When you have been through so many bad experiences with surgery - of course it is frightening - I am praying for you that this one will be much easier.  You have more info. now then you did before - just drinking gaterade that my husband brought into hospital after one of my debacles really helped me - and no doctor recommended that - I was on IV fluids and all puffed up like a balloon - legs size of hams and hard as a rock.  Dr. kept saying, "I am not worried about it" - Well - I was!  Husband on a lark brought in gaterade one day - drank a bottle of it and literally peed all the water out in about 2 to 3 hours....I give this as an example because my surgeon was supposedly # 2 in Washington D.C. area - and my teacher/coach husband found the magic solution to that problem.  Please know we care and are hoping this time around will be one of the easiest times.

Since the date is confirmed and our discussion on here has been great, I feel a load has lifted.  

Angie, I don't know how long you have been unable to work but thought I'd add that I was approved for social security disability the first time I filed.  I have other health problems too.  Sorry if this doesn't apply to you.  You can choose to retire early too  

JENJEN, My Internist made me get counselling.  She was making me come in to see her at least monthly until I did so.  I was in bad shape.  That's when the PTSD, major depressive disorder and generalized anxiety diagnosis's happened. My first therapist treated my PTSD using EDMR therapy.  It was exactly what I needed.  It wasn't the surgeries that caused all my traumas. They were the like the last straw that broke the camel's back.  Like the trauma of them pushed me over the top of the cumulative traumas in my life and in to PTSD.

Then she made me get a psychiatrist to prescribe the antidepressants and anxiety medications.  I need them too and she was prescribing them and wanted an expert doing so.

At least I know what to expect going into this surgery.  I believe I am better equipped to handle it.  I am hoping to be like Richard and bounce back sooner than later.

Te Marie - I am thinking of you and so hoping things go well.  I never did apply for disability - I know I should.  And, when I get the energy to do so, I will.  I should have done it 7 years ago - looking back - not sure why I can't make myself do it - scared of the process.  I plan to talk to my GI about it at next appt. - it's time to try - hate to admit it, but I need to do it.  I am thinking more of you and all you are going through and hoping this next step will be easier.  I know you are scared and it's just too much - but so many above have had some good results - better than they expected - and I hope you do too.  I now keep my expectations very low - (opposite of my youth) - as in, "it'll be awful" - then, I am so pleasantly surprised when it is not as bad.  I apply this to about everything (not out loud - in my head) - and not all the time.  I lower my expectations about how things "should" be or go - and just roll with it.  When nothing awful is happening -as in the most boring, mundane days - those are great now - gentle days become precious as I age.  Just a day of no suffering and no huge worries - I hope you get past this and have many gentle days ahead, you dear lady.

Thanks Angie W,

I'm not sure but think you might have waited to long for SSDI. I say that because someone told me not to wait any longer as you need to file with so many quarters. Every social security person I have dealt with was nice and helpful. You can just look up a phone number and call to talk to someone. I talked to the local office and national. They helped me after approval too.

Thanks for the info. - who knows if I'd qualify - I do have the # of quarters and the disability amount printed on my SS statement I get once a year...but I don't know what that even means...we are making it as we are - so maybe I will just put it off - but I do think I will for the first time mention it to my GI guy next appt.  I hope you are doing ok - thinking of you.  Angie

Hi Angie,

Another good thing about SSDI is you receive more regular social security benefits when you take it.  With a lot of years in there with no income your monthly social security benefit will eventually be less.  

It really isn't an awful experience.  My Internist filled out all of the paperwork for me and they also sent forms to my other doctors. There is a long questionnaire to fill out but you don't have to do it all in one setting.  It probably took me a week to fill out but I have fibromyalgia.  It asks things like how many meals a week do I make by breakfast, lunch and dinner. Also like could I pick up something off the floor - which I can.  Just answer with how you are honestly therefore wasn't a big deal.

Please don't let the people that complain about not getting it worry you.  As long as your doctors agree then you should be ok.  Sometimes filers expect the SSD doctors to diagnose them. They don't do that.  I saw an MD and she didn't do much more than listen to my heart and lungs, check my response responses to the little hammer like too. She watched me walk and had me pick something off of the floor. I really don't know what good that appointment was for. 

I think it is you only have so many quarters after you quit working to file for SSDI plus don't take the amounts on  your annual statement.  That doesn't mean you are eligible.  I was in a facebook group about this and that's where the gal that works with it gave me my advice. If you want me to give you information about how to find it on FB private message me.

Thanks - well it'd be my luck that I waited too long!  I will have to ask an attorney if I decide to ask for it..as I said, should have done it long ago - not sure why it never occurred to me - it truly didn't.  I just thought - I quit working - can't take it anymore - and that's that.  Never really put any of it together at that time...years went on, etc. - depression/anxiety issues....and I just didn't get it done.  Oh well - I am doing ok now with all of it - really, what choice is there.  I stay home a lot  - but as I have said in previous posts - I have found a way to make that good choice by having many activities I like to do at home, with nearby neighbors, etc. - just making the best of it.  Thanks for your kind reply and help.

I sort of know how you feel.  I sold my firm in 2000 because I could no longer work the hours.  The chronic fatigue and fibromyalgia were most of the reason as my UC was manageable at that time.  I went back to work the next year part-time.  I could set my own hours so that worked.  By the time my UC got too bad in 2010 I barely worked.  That was 6 months before my colonectomy.  I had long term disability insurance that I'd paid the premiums for over 20 years so I first filed with them.  I still thought that I would be able to go back to work. I didn't file with social security until 2 years after my last day of work. I'd rather be working.....

It sounds like maybe you aren't as bad as I am. That doesn't mean you aren't disabled. As I said before, you can call social security and ask them about the time thing.

Hi everybody,

I'll be admitted to Mayo for surgery in 6 hours. I am looking forward to getting the surgery over with but not for the pain during recovery.  My surgeon said unfortunately the j-pouch removal surgery can't be done laproscopically.  I will have incisions in my abdomen and in my butt.  I guess I will lay on my side! (joke....)

Ahhhh.... My butt end didn't hurt at all. 

Diuluad... However u spell it does wonders.  Keep pushing the button..... I had no pain down there whatsoever.  Of course I had the long cut and the cut for the stoma.  And I had a cut for a drain.  Like I said in my above post.  It was so much easier having it removed than having it created. 

I am four and a half months out and have no pain anywhere.  Not associated with the pouch or stoma. 

Just gettin old pains! 

Good luck!  I wish you the best.  Once it's gone and all is sewed up and awhile has passed... You will be happy and healthy again.  I never thought I could feel this good again.  Permanent ileo's are not the end.  Just a new beginning. 

Richard. 

Thank you Richard  Reading your posts here have eased my mind. I'm ready to get it out. Thanks for reassuring me about the pain. I've been in so much pain all the time that I am more worried about nausea.

It's what always causes problems after my surgeries. My surgeon is ordering nausea medication immediately to hopefully protect against my projectile vomiting. When she diverted to a permanent ileostomy last year nausea caused problems that kept me in 6 vs 2 nights. For once I want to get out at the estimated hospital stay time. For this surgery she said it's 4 or 5 days. 

It's a plus that she's already diverted me. Hopefully my stoma won't have to be moved.  The stoma nurses here think it won't but they never know for sure until the surgeon operates.

good luck to you. recover well!

and yes dilaudid is pure gold.

Best of luck to you. You can only get better from here. And welcome to the Barbie but club. Not sure whoever thought of the term but it's really endearing. Janet 

Good luck! Hopefully getting the pouch out will set you onto the healthy path you so deserve!

Jan

I never... Thank goodness.... Had the nausea.   As anyone.I hate throwing up.  Ugh.  I felt it a few times after some of my surgeries but held it back best I could.  But I know it gets bad.  My wife has the problem from any anesthesia. 

I hope things went well today.  Think the worst and hope for the BEST outcome. 

Richard. 

Just saw your post and am realizing you might be in surgery right now. Stopped to send a prayer your way and post that I can't wait to hear you are doing well!

I'll be able to keep checking posts as CC rescheduled my pending surgery for J pouch to K pouch conversion (with BB) from April 1 to May 13. 

Have no idea when you'll see this, but will continue praying for good surgery and helpful drugs, great care and better outcome all with no nausea or complications. God bless!

Sending love and light and prayers.

I just read this now and am sending all good, clean energy your way. Here's to no complications, managed pain, no nausea and a new beginning. And I will chime in  about the magic of Dilaudid!

JENJEN -  I hope your surgery goes well.

Per the residents all,went well.  It feels like they had my arms in a weird position during surgery. Besides that every thing is better than I thought. May ileostomy bag has no output yet, arg. Never thought I would complain about that,

The surgery was around 6 hours long, about an hour more than they expected. They took a dime size off of my intestine and it was like a global of fat.

I brought my heating pad & it is helping. Will update later as am woosey!

Thank you all for all of your prayers and good wìshes !

Yay! I'm sure I speak for all of us when I say that it's so good to hear from you. It's funny, I remember likening the ostomy output to having a baby. In the hospital, all we want is for our baby to stop sleeping so we can nurse him. Then we get home and all we want is for him to nap so we can nap! Your ostomy will put out soon. It may fill with lots of gas in the early weeks and be noisy. That'll calm down. As Janet said, welcome to the Barbie butt club!

JENJEN -  I hope your surgery goes well.

THANK YOU all for your good thoughts and prayers!

My surgery went well or as the resident said "we achieved all of our goals." After surgery they told my husband my cuff was badly iflammed. The rest of the pouch was as expected.  I put myself back on antibiotics. Maybe  should have kept using the canessa. Whatever - it's all out of there. No more UC for real this time!

Thanks again!

Yes.. Yes... No UC!  

It's gone... I know the feeling! 

So happy for you.  And that all was "acheived". 

That's wonderful. 

You will feel the same soon.  I did and it is wonderful. 

Richard. 

welcome to the other side, indeed good to hear.

side note, you probably were trying to punch them as they were filleting you, a perfectly natural response, so they decided to restrain you in lieu of dodging your punches.

recover well! you know the drill get up and walk as much as you can, wean off the pain meds as quickly as you can etc. may you escape from the confines of the hospital soon.

I know why they tell people not to drive or make big decisions after colonoscopys etc. I cannot get my mind to work right. I was posting to my food diary and got stuck on how to spell pancakes - real simple 'pan' & 'cake'. Things are getting better. I've been walking and I  didn't come out of surgery with a pain pump.  I had a big shot in my spine before my surgery. I think dilaudid was in it and don't remember what else.

My husband and son think I look better than after my last surgery. Thanks~for all of your support.

Richard you are right this surgery  is much easier on me than the first j-pouch surgery. I think it was harder for my surgeon.  She fixed my stoma as I had developed a hernia under it. She then had to remove the j-pouch and the cuff was thick and hard. The surgery took 6 hours.  

One of my nurses told me she went into a surgery last year thinking she would be waking up with one or 2 bags for #1& #2. She loves my surgeon, Dr. Kellie Mathis, because she figured out how to avoid those.  The RN has crohn's.