Lynne,
They closed off my bottom when the did my k pouch (3 steps) and all I remember is the mortification of having a hemovac in there that felt like someone was hoovering my butt...healed up quite normally (unusual for me who doesn't heal well) and other than the discomfort of sutures and the hemovac it went quite well and I didn't suffer any longterm effects other than the occasional fantom pains or pressure.
As for the rest, it is a real concern but nothing that you can plan for or fight against...just excellent hygiene by the staff and friends/family.
Good luck
Sharon

Lynne-
First good job on making a decision to move forward. I know it was probably a tough decision, but in the end you will have a better quality of life.

My wound was left open to drain and heal. I used and still use (8+months later) a sitz bath and a hand held sprayer, to spray and irrigate the area several times a day.

As far as infections.. hope you are at a great hospital. Make sure you have a top notch surgeon who has done this procedure extensively in the past. You know this is a "biggie" so you want the best of the best. Make sure your visitors are as diligent at hand washing, etc. as the nurses and doctors. Other than that, not much else you can do.

Much good luck on getting everything lined up for your upcoming surgery.

Sharon and Liz,

Thank you so much for the info on the vac and the sitz. That will be helpful info for me to know as I go into surgery and prepare for care afterward.

I also appreciate the warm encouragement about having made my decision. My GI is still trying to talk me out of it and is bringing this week's scope pics to a meeting with other docs to see if they can give feedback. My GI's main concern is that I'll have the big surgery, need to deal with an ileostomy, and find out I have CD and need to go back on meds. I understand that it's risky with plenty of unknows, but my pouchitis is refractory and I'm unwilling to pour yet another layer of toxic drugs into my system, so I'm pushing for the surgery ASAP.

I wish I could say my surgeon had experience with j-pouch removals, but he's done less than 10 and he is the most experienced surgeon my insurance covers, so am keeping fingers crossed. The hospital i chose is clean and fairly new, so I feel confident about that piece.

This site and those of you who have so generously taken time to respond have been priceless to me. I would not feel as informed and ready to go if it weren't for you.

Thank you,

Lynn,
How are you doing and what is the final decision on the pouch excision? Is the doctor giving you a green light and a date? Let us know what is happening and for now, have a happy holiday...
Sharon

How thoughtful of you to check in, Sharon!!!

I'm going for a consult with a more experienced surgeon next month. Keeping fingers crossed that I get clarity and green light. . . Turns out the biggest reason for resistance from my doctors is that I very well might have CD and could end up on the same drugs because the CD would just show up elsewhere, plus having to deal with an ileo. Jan and Liz also brought up other important issues to consider, including the risks of having less small bowel and the possibility of the surgery's trauma to my body potentially triggering a new/worsened immune issue.

Sooo. . . still lots to consider and it feels like every time I say I'm ready, I'm given more reasons not to do it. My first choice by far is to go perm ileo and be healthy and drug-free like Jill on this site, but there are just no guarantees. I'm able to manage life better rght now because I'm on Remicade plus an antibiotic rotation, but my doc wants me to increase my Remi dose and that will probably be the line I draw in the sand.

Thank you for your concern. I hope to have a positive experience to share with the site soon.

Happy holidays to you!

Well at least it isn't bad news and you will pass the holidays without suffering...sometimes second and third opinion are important...To give you perspective on what is out there and what can or cannot be done...this is not a 'light' decision but a life changing one...so if you need to take a few moments to catch a breath, talk to another specialist and move forward with tranquility then do so...you must be at peace with this decision or you will not be able to accept the ileo and make it your own.
Hugs and try to have a happy holiday
Sharon

Lynn,

They told me the same thing, that I probably have CD, and even with pouch removal would need meds for the rest of my life. Then a different GI came into the hospital room, and said he would not recommend meds until we give it a chance without. He felt the pouch most likely was causing the trouble, and not CD. Well, I am happy to report, it has been 4 months, and I am med and symptom free. I have gained 10 lbs, and am healthier and stronger than I have been in 4 years!. Good luck to you!

That is such wonderful news, itsnotsherry!!! I am very happy for you! I really appreciate that you took the time to share your story. It's such a gift of hope.

Thank you and best wishes for loads of health and joy in 2013.

What is Barbie Butt? Anything like "butt Burn" I've heard about on other sites?

Barbie Butt is our way of saying that your bum is permanently sewn shut and is not functional...like a barbie doll

Lynn,
Hi, I hope that you had a good and healthy holiday...how are you doing and what is up doctor and decision-wise? Have you been able to move foreward with choices?
Sharon

How nice of you to check in, Sharon! Surgery date is being set - probably April.

Cheers!

hey lynn,
congrats on getting everything sorted and moving forward. I wish you the very best. and hope you are spending the next few months doing everything you can to get in the best health possible physically and mentally. let us know when you will be going in.. so we can all be sending our prayers your way.
best,
liz.

Liz,

Thank you for the positive wishes and prayers. I will let you know what date i choose. Feeling support from people who can empathize is so helpful to me. You have been a real inspiration with your strength, perseverance, and willingness to share the good and the bad. I hope you are healing and seeing a light at the end of the tunnel.

How's this for irony?

My biggest fear about having the surgery has been the potential for picking up infection in the hospital. I finally have a date set to go to a perm ileo in a few weeks and, guess what. . . I found out tonight that I have C Dif! Never had it before and I'm glad we caught it before I went into the hospital, but I am also very disappointed. I'm starting vancomycin 250 mg 4x/day for two weeks and then possibly continuing with a taper. My GI recommended a probtioic, whcih i already take, but I also plan to take saccharomyces boulardi while I'm on the antibiotic. Sounds like I might need to postpone surgery.

It's weird, though, because I feel really good and have gained weight and have been excited to move forward with the surgery. The only way the C Dif was discovered was when I had a scope and my GI saw some unfamiliar dots mixed in with the ulcerations in my pouch, so he had it checked.

Does anyone have experience with C Difficile and/or vancomycin? At suggestions?

Thank you,

P.S. forgot to mention that my first response to my GI was asking to do fecal transplant. He adamantly refused and said that that was for scales when nothing else worked. . .

lynn.
I am so sorry to hear this. I know you have gone through a long heart and mind wrenching process in making a decision for surgery and now it is so close.

I have had cdiff before. Vanco should knock it right out of you quickly- hopefully in that two weeks time. They should run two cdiff tests - to make sure both are clear - after your course of vanco.

I was on iv vanco for quite some time in the hospital and then at home through a picc line for other infections from my jpouch removal surgery. It is a touch potent drug. I do understand the oral is a bit easier on you though. PM vanessay on this board. She just had cdiff and was on oral vanco.

So for positive thoughts, just count on that vanco working, getting two negative cdiff tests, and then you should be okay to stay with your surgery date.

best,
liz.

Liz, you know the perfect advice, as always! Thank you very much for the insight, suggestion, and support. I appreciate your feedback so much.

Thanks!

Hi again, Liz. I'm posting this message instead of pm'ing because others might benefit from your response.

What are the two different c-Dif tests you mentioned? Mine was discovered during a scope because my GI saw some unfamiliar "dots" and decided to take a stool sample while he in there. Will i need to do the tests ou mention via scope or just regular lab stool sample?

Thanks!

Lynn, The two tests are to confirm that you have two negatives for cdiff. Both are the same... poop tests. That's it. nice and easy. gross, but nice and easy!

And once you have had cdiff, it is easier to get. So just remember to ALWAYS get cdiff checked if weird things start happening. With an ileo - more output, fevers, weird and grosser smell, etc.. Always, ask for a cdiff test. Lots of docs don't think you can get cdiff without a colon. Wrong. But cdiff test is easy. For me, I just get my PCP to order one when strange things are happening. Then I know the answer before I go to my GI guru doc, Dr. Shen.
Liz