I just got back from C.C.,here we go again.Has anyone ever gotten 3 redos? It looks like that is what I am going to have to get done if I am lucky!I might have to get perm Ileo or Koch pouch,wont know until Dr Fazio gets in there.Please pray for me!!!either way it is back to the table,I know some of you have gotten the perm ileo,I just can't fathom that for the rest of my life,Jason you are so positive and helpful to others,so I might be needing some counseling from you,Thanks Ed

Hey Ed, sorry you are facing another surgery.

I'm another former poucher with a perm ileo and life is great. No drugs, eat what I want, do whatever I want. I had a baby 2 years after my pouch removal (he's now 19 months old) and we're about to start another IVF cycle to try for #2. My life is about as normal and ordinary as can be because of my ileo and I love it!

I know it is a hard adjustment, but if that ends up being your future, just know that things can go back to normal with a perm ileo.

If it helps, I live in the Philly burbs and I'm in the same situation as you. Maybe we can get together and compare war stories. I also went out to CC a few times to get second opinions.

For me, I have a temp loop-ileo now and already had one failed takedown this past June. I see my surgeon again next month and if I still have "issues" I'm done, its end-ileo time. I've had the temp for over a year now and have grown to accept it, plus I'm feeling SO MUCH better now than I did when I had my pouch.

PM Me.

I wasn't aware you could have 3 redos because it would eat up too much ileum. My understanding was that you could have 2 redos maximum (or are you counting your first pouch?).

Best of luck. When is your surgery?

Jan

Thanks everyone ,as you all know it is important to have people who understand,Jan I have already had 2 redos,Dr Fazio said it probably wont be able to be done,but wont know until he gets in there,I have a scope on the 24th scheduled to let him see the severity of the mid pouch sinus track,he will then determine how long i wll have to wait to have the surg,my adhesions may be to hard at this time,possible i will have to wait 3 months so they loosen up,Thanks Ed

From what I hear, Dr. Fazio likes to wait a good long time between surgeries before going back in for a repair or redo. The few I have heard were a year. So, I would think that 3 months is pretty quick in his book.

I would presume that by the 4th pouch, you would definitely need B-12 injections and may be dangerously close to short bowel syndrome. But, I guess that is the "wait until I get in there" item, so he can run your small intestine and count the feet.

I'll keep everything crossed for you!

Jan

A quick question to Jan: Vit B-12 is absorbed in the end ileum , am i correct?..does it mean that whilst i am waiting for takedown I am not absorbing any and hence tiredness?..

Yes, vitamin B-12 is asorbed in the terminal ileum. However, only a miniscule amount is needed on a daily basis and your body's stores contain 3-5 years worth and it would take you that long to manifest a B-12 deficiency, unless you were deficient before surgery.

You ask a simple question and I give you a complicated answer...sorry about that.

Jan

Oh Ed - I'm so sorry you're having to go through this. Whatever happens I'm sure you'll be able to move forward with grace. Of course you know you're going to the best so you also know that you're trying everything possible to save your pouch. I'll keep everything crossed that Dr. Magic can perform once again.

kathy

Thanks Everyone ,I will keep you posted

hi..ed why does one need pouch redo`s??

is fazio the dr. of choice for just all jpouch surgerys that just are not going so well??

ed god love you and i too am reaching a point of wondering if the ileo is in my future..i just am so unhappy with my jpouch after 15 months..thanks rebecca

jill read your post about having the ileo..what got you there and sounds like you are a young lady..i am always in pain most days from soreness inside,burning stinging..i hardly eat any variety of food everything seems to create problems for me and dr. does not know why but we try antibiotics,suppositories,things to slow me down..i am constantly in state of depression,it has been 15 very difficult months and no end in sight,,]..nothing hrlping so far..so tell me more about life with uileo..eatting again without terrible pain,going many times mostly all evening,....thanks rebecca

Hi Rebecca,I am sorry you are having trouble as well,to answer your question,Dr Fazio is world famous for handling pouch disasters,he has trained other surgeons for years,he does not take all cases personally,only the worst ones,so if he cant do anything for me I am out of luck,he has already fixed a botched surgery i had ,he told me due to a weak spot from the first surgery i had is giving way and he is not sure he can fix it properly,please contact him before you make any decisions,He is the best!!!Let me know if I can help you in any way. Ed

Ed,
Just saw your post .. Please Pm me and I will talk to you a bit ... I am 4 months out with a perm and I LOVE LIFE ... Eating what I want doing what I want and i dont even think about it anymore!
Yesterday mowed the grass (push mower) long walk, powerwashed shed and then hot tub for 45 min... and i am on day 5 with waffer and its perfect - LIFE IS GREAT WHEN YOU FEEL GOOD - No matter what they need to do that. It was a no brianer to me .. bottom line to me when this disease hit was to feel good... With my perm illeo I feel better then I could have hoped for and its only month 4!
Pm me if you need to talk!

Ed! This is just horrible. That's way to much for anyone to take. I'll be keeping you in my thoughts and prayers and I'm looking forward to meeting you on the 6th!