jpouch

ljk,

I understand your worry and concerns and making such a decision, not knowing if this is right for you. That is normal.

I had UC for over 8 years until I had my colon removed in 1993. My was a 3 step process (3 surgies).

I have J pouch and yes I do get pouchitis from time to time. But I have no regrets. Having pouchitis is much better than being so sick with UC.

I see you still have the ostomy bag. How long have you had it? Are you feeling so sick with the bag that the doctors are saying its time for the Pouch?

Cleveland Clinic I heard is the best place for this type of surgery.

I wish I had more words of comfort but this is a decision you will have to make.

My advice is try not to freak out too much and keep a positive attitude. I won't lie, it's tough to get thru but for me the end result was totally worth it. You will do great!!

Thank you everyone for your kind words. I have been so luck the past 9 yrs of not being sick, no meds at all. I am doing this because mentally I will feel better about myself. I am so sick of hiding, making excuses, and just not living the life I want to live. I understand none of us ask for this kind of thing to happen to us. I just hope this makes me feel better about myself and hoping not to have any regrets.

thank you so much!
I hope i am making the right decision, as I have not been sick for a very long time 9 yrs.
I do not want to open "a can of worms" if you know what i mean.I just want feel better about myself and not hide anymore. I am exhausted over hiding and I just do not want to do it anymore.

Ok thanks for your response!
How painful was the 1st surgery?
Were ou able to work inbetween your surgeries?
How long wre you off for each surgery?
thank you ljk

I am doing fine with the ostomy. Its just a mental thing for me why i want the jpouch.
Actually my dr. who did the 1st surgery said no to the jpouch but would reccommend a hospital that would do it. I was diagnosed with crohns but have not had any problems for 9 yrs no meds at all. Work a full time job and can do about anything when it cimes to my ostomy. For me though I hate and im embarrassed that i have one i constanly try to hide and i am exhausted hiding and ready to have a full life again. this is my hopes for getting the jpouch surgery.

do you think i am asking for too much?

Serious question: you say getting a j-pouch is "just a mental thing" for you... have you spoken with a therapist at all?

I'm not saying it's crazy to want a j-pouch. BUT you've lived with an ostomy for 9 years and you're not having ANY functional problems. I fear that you're idealizing the j-pouch experience and will have the same emotional issues afterward regardless of the outcome, because none of these surgeries leaves our digestive tracts "normal."

You were diagnosed with Crohn's?? I didn't think they would do a j pouch with CD patients. I would think long and hard about this. It is known that people who had j pouch surgery then get the CD diagnosis afterwards usually end up with many issues and end up on drugs again like biologics. Can you give some more info?

yes i can
my doctor said that all the crohns was in the lg intestine,which has been removed. He purposley part of my rectum ( forgive my spelling)so that one day it could be hooked back up. I had biopsys done on rectum and sm intestine and i have no active disease. Have not been on meds or anything for over 9yrs.
Still think its a bad idea?

I appreciate your honesty. This is huge.

No therapist ever. My thinking was How in the heck can a therapist change my mind about hating this ostomy. Had total colectomy almost 9 long yrs ago. My Dr. said baby 1st before any further surgeries. Did IVF even tried egg donor and nothing. I decided i was done and now my focus is this stoma.Went to see surgeon for jpouch,did biopsys on both sm. bowel and rectum and results showed no active disease or cancer. So here I am two days away from surgery. My hope is this is easier that my ostomy and i wont have this bag anymore.

Ok I see. I suppose there is no guarantee though that your Crohn's wont flare again and flare in your small intestine. Did your doctors say that could happen? It's just that CD is so different from UC in that it can pop up anywhere in the entire digestive tract. UC is just the colon and can never be anywhere else. Well if you are two days away from surgery......

I hope you got second opinions on this as well. I truly understand about the ostomy because I had a hard time with that myself. But boy, 9 years of healthy living that you have done sounds really great. I am just worried for you having that CD diagnosis.

hi Marianne
I only had it in my lg intestine which has been removed.I think i had some in my rectum which is being removed he left part of it in i dont know why she said my suegeon said it was coming out anyway no sign at all in sm bowel. My biopsys were good that i had recently. I am not being a smart a--,its a serious question. This is good right?

I understand what you are saying....your CD was limited to your colon and rectum. I'm not a doctor so I cannot comment about if this is a good move or not. I am assuming a good surgeon would not even think of creating a jpouch for you if he or she thought it would fail. You could have a totally great outcome and I truly wish that for you. Please let us know how you make out.

Thank you so much. I believe that God will do the right thing for me. If she cant do cause of the scar tissue it wasnt ment to be. God Bless Leslie

ANYBODY THAT READS THIS HAS ANYBODY FOLLOWED THROUGH WITH A JPOUCH IF YOUR DIAGNOSIS IS CROHNS?
hOW DID THAT WORK OUT FOR YOU?
DID YOU GET SICK AGAIN AFTER BEING HEALTHY BEFORE SURGERY?
HOW LONG DID YOUR JPOUCH LAST?
WHY DID THE DR. DO IT, IF THEY KNEW IT WAS GOING TO FAIL?
WERE YOU ILL WHILE YOU CHOSE TO HAVE A JPOUCH?
HOW DID IT FEEL WHEN YOU DID GET SICK?
WHERE YOU ADMITTED INTO THE HOSPITAL?
JUST WOULD LIKE TO KNOW CAUSE MY SURGERY IS RIGHT AROUND THE CORNER!!!
THANK YOU IN ADVANCE FOR THE REPLY

I AM GOING FEEL REALLY STUPID IF THIS FAILS

When I had my J-pouch created about ten years ago most folks (GIs and surgeons) thought I had Crohn's, though the diagnosis wasn't certain. My disease has just about always been limited to the colon, in a single area not far from the anus. There's a decent medical literature on J-pouches for folks with Crohn's. Certainly the failure rate is higher than in UC, though I found it interesting that some researcher's considered this a reason to always avoid the procedure for Crohn's (e.g. the folks at Mayo), whereas the French researchers came to the opposite conclusion, particularly if the diagnosis was indeterminate rather than definite Crohn's. I knew the pouch might not last, but I decided it was worth taking a chance. I've had very good results, IMO, though I know I've been lucky, and my expectations were modest. Many people with Crohn's simply stay in remission. I agree with the folks recommending therapy, for all kinds of reasons, but I also found that (for me) this was a gamble worth taking. I had to talk to a number of surgeons to find one who was game to try it, and he did a brilliant job. Fortunately my small intestine has cooperated. Good luck! We really all do wish you well. Keep us posted!

Hi Scott,
Thank you for responding!!! Our situations are the same my diagnosis is undetermined as well.
I have docs that say its UC and other say Crohns. I find it very comforting knowing this.
I always say crohns because the last docyor i saw said this is what it is. I do wish i time for counseling, but monday is the day at 5:30 A.M.. I am still very nervous,i have had the jitters all day today.My surgeon knows the diagnosis is crohns. I really dont think she would do it, if she did not feel it was possible.She did inform me that i do have alot of scar tissue and she said her goal was to try and remove it and follow through with the surgery. She also said that if not she does not want to take any chances following through with it. I really appreciated her telling me. I so happy your are doing well and I cant thank you enough for the comforting words!!!!!!!!!!!!

I will pry read your post over and over again tonight. If your a father
I am wishing you a HAPPY FATHERS DAY!!!!!!!!!!!!!
Thanks Again Leslie

Surgery can be canceled and rescheduled literally at any moment until you're knocked out. That's something I learned here and everyone should remember it.

If you wish you had time for therapy -- you do. NO ONE is saying that if you don't have surgery on Monday you can never have it. On the other hand, if you go through with this surgery on Monday, there is no going back. If you have doubts, anxieties, if you want to speak to a therapist, if you think you need to do more research... TAKE THE TIME. NO ONE is holding a gun to your head. You will not offend your surgeon. People cancel surgical procedures ALL the time. I was on a four week waitlist for my surgery and ended up being taken in within two days because of cancellations. It is NOT uncommon.

It's true that patients with Crohn's limited to the large intestine are considered decent j-pouch candidates. The complications and failure rates are a bit higher than for UC, and overall satisfaction a bit lower, but still considered within the acceptable range. I think with new surgical techniques, the expected outcome of a j-pouch built for a Crohn's patient today *on average* is similar to a j-pouch for a UC patient 20 years ago.

But again, this is all a numbers game. Your surgeon is willing to do the surgery not because she's sure you'll be happy with it, but becuase she thinks it's LIKELY you'll be happy with it. Surgeons can't guarantee positive outcomes, they can only assess risk, and if they only acted in the absence of risk, they would never act at all.

I think you need therapy, I really do, and I think you need it before you undergo a permanent modification to your body. This is actually an issue that comes up a lot with weight loss surgeries as well -- patients think that depression or social anxiety is caused by their obesity, and if they have weight loss surgery and lose weight the mental health issues will be cured. Often those issues DON'T go away, and a whole new set of issues crop up because of the immense disappointment of undergoing a life changing, painful procedure only to be left facing the exact same emotional issues. I would hate to see something similar happen to you.

Good luck.

Liz,
thank you, i appreciate your advice. What I am feeling now is guilt. I feel like i am dragging my husband, my mother,step dad, and sister with me as i enter in this new journey. AsI have said many times before, I wish i had a crystal ball to see the future. In finding out that everything will be ok, and the decision i made to have this done is the right one. I know that is not possible. I will definatley let you know and keep you informed, if i do it or not. Just thinking about not following through is really making me tense. I do know I do not want to live with regret the rest of my life.
Leslie

Leslie-
Just to clarify, I have the sense that you may have indeed thought this through, and don't really have a reason to delay or cancel it. I was suggesting therapy on a more relaxed schedule, not urgently prior to the surgery. You've been forced to take a gamble, and it sounds like you may be very uncomfortable with gambling (i.e. taking risks of this magnitude). You might be able to use therapy to find a more comfortable way to let go of control/certainty when control just isn't an option, and to find comfort in the things you can control. Heck, choosing this surgery (which you can and did control!) is likely a step on that road, but now that it's imminent it may seem quite overwhelming and scary. I think you'll be fine. I don't mean I know you'll have a perfect surgical result, but even if you're obliged to go back to an ostomy you'll know you did everything you reasonably could for yourself. Do try to stay positive, since that really does help.

Good luck! We're thinking of you, and you're in good hands.

Goodmorning and thanks for responding!
Well I went in on monday and now home. I am still a little sore though, but making it. Now the next question is the last step. How long is this process? How long in the hospital? What about working? How soon?
Well Like I said so far so good and hope this continues!!!!!

marrianne and jpouch team
I am home went in on Monday and out thurday.
I am having a little pain but nothing that I can
not handle myself. Now what?? The very last step I know !!!!!!!!!!!!!!!!!!
I want to go back a little though. When I woke up and became alert, I wanted to look for the new stoma. I looked, and looked and nothing. I was thinking that maybbe things could not be done. Well then she explained every thing was done through my original stoma. Boy, I was pleased.