Advice needed - perm ileostomy surgery 11/14/12

you can request that your j-pouch be disconnected instead of removed.its just less invasive surgery.it worked for me.the only downside to that is that you will have to empty out mucus from the j-pouch.j-pouch removal can cause nerve damage that causes impotence.so be prepared.

Well it sounds like you've been to hell and back with the failed JPouches, so good luck with the perm ileo. I haven't got the close up done yet, but one way or another i'll be there soon and will be feeling first hand what it's like. so can't offer advice on that sorry yet...

I know just how soul crushing jpouch failure is though, after our colons failed on us first of all. Stay positive, and remember you might go through a really rough emotional time after it's done. These surgeries can mess with your head, so try to remember, or tell someone close to you to keep reminding you that things will improve after the surgery pain goes. It can be a rough time, but hopefully worth it in the end.

Stay strong,
Ad

Ghost - I've asked my surgeon about keeping the pouch, since I've done that in 2005. We put the ileostomy back to give the original j-pouch time to heal and so I stayed with the temp ileo for 2 years. We reconnected in 2007 to the original j-pouch and within 8 months he had to once again reverse to a temp ileo.
I stayed this way as long as my j-pouch would let me. Things got a bit ugly and the j-pouch had to come out. So, I was left with the choice of "redoing" a brand new j-pouch or removing everything and going to a perm ileo..
Since both were major surgeries I opted for a "redo". I figured I had a good 10 years with the first maybe I'll get that, if not more time with the new one.
I had the old j-pouch removed and a new created with more of the small intestines (Gee - I often wonder "How Much We have" and "How Much is Used")this past March and the takedown in July. Which as I mentioned above has been a horrible and painful experience....
Sorry for the long and detailed post. I just want to be sure I'm clear (for advice) since my surgery is so soon.

Any way long story short... the surgeon said that the j-pouch would eventually have to be removed as it's a "dead" body part which can cause issues down the road. But either way it will be easier to remove the j-pouch now before the my body "marries" it and thus becoming a more complicated and longer surgery to remove it.
With this said, I have read many posts on this site and yours was the first time I've read about nerve damage. Did you have any nerve damage?

Thanks for listening and reading

***sorry for typos, I took my lovely medication cocktail..

Adroen - Thank you for your kind words. I can certainly use them....We all can!

J-pouch failure is saddening, however, I can at least say I know where I'm headed - as far as an ileostomy. But, I'm confused on the after effects of having the rectum closed. I mean, I know what the Dr. has explained, but he doesn't "live it".

So I'm reaching out through this forum to gain some insight....

Maybe I should post to another forum? Not sure....confused... reaching for "last minute answers"...

Thanks again and sure will be strong!

RoC.. I am so sorry to hear about everything you have gone through. I couldn't believe what I read. Your story is exactly why I chose a jpouch excision verse a jpouch redo. It is good that you are getting on with things and moving forward. And it is good to get that jpouch all the way out. After mine was determined a failure it was disconnecte with a diverting ileo for 18months and that was still a bunch of painful, difficult problems.

So I just had my failed jpouch excised, backside removed, and permanant ileostomy surgery this spring. Many people on this board who have had this done had a pretty straightforward recovery.(JillM where are you???) Albeit the backside pain is BAD, worse than any of the jpouch surgery pain, but it will go away.

I was not one who had a straightforward recovery. I have had much difficulty with the backside, including multiple abscesses, infections, drains, and additional EUAs. But I do know that at some point, things will end. Fortunately, I have a great functioning permanant ileostomy, I can eat almost anything I want, and I am back to a good nutritional sttatus.

There is nothing you can do at this point other than to focus on the statement you initially wrote... "I am looking forward to feeling better and living my life again." Please try to just think positively in the last few days before your surgery. We will all be here for you on the other side!
best best wishes.

Sorry it took a while to get to a real computer

Had my pouch disconnected in 2001 and had more problems. After 18 months had the pouch out. Best decision of my life. I recovered in record time - faster than after any other surgery. Within 2 weeks I was walking a mile. Four months later I hiked 7 miles at Mt Hood to see Ramona Falls. 8 months later I did a 5 hour kayak trip in central florida. No GI problems since the pouch came out.

I believe I recovered as well as I did because the problem was the pouch and once it came out my body bounced right back. I also did a mind body program - including wearing headphones during surgery. And I got a massage a week for 6 weeks up to the surgery. I think the fact that I went into surgery in a great frame of mind, and in good health, helped significantly.

As for having a Barbie Butt, it was pretty easy to adjust to. Worst part of the whole process was the tush stitches. COuldn't sit or lie down without them poking into me. Once they came out, it was smooth sailing. I've since had two babies and done anything I wanted including swimming daily in the summer, water slides, roller coasters, anything you can think of...

let me know if you have questions.

Jill

liz11 - Backside Pain?? Right now the pain I'm experiencing is beyond butt pain... excruciating rectal pain during and after BMs.

It sounds like you've had your share too! Sorry you're still dealing with all of this. How long has it been since your surgery? I'm glad you wrote me as I do not know anyone in my position that can offer any information..

I hope things get better for you. As for me, it is what it is. I have no regrets for trying to have a second j-pouch. Now I know I won't have any "What if's"...

Looking forward, I hoping to be pain free. With that said, I am not naive to the fact that it may not be as pain free as I hope. Hence my cry out on this site for any help from others who've been through this and are going through this...

Thank again!

RoC - it sounds like you might have a fissure.

I was also going to suggest contacting JillM. She's an ileo rockstar. We also have a member here who hasn't posted in years. He had problems with his j-pouch and he just didn't want to wait years to see if it would work. He had his pouch out before its first birthday and he's never looked back. He now has two adorable boys and nothing holds him back from doing anything.

kathy

JillM - I just finished reading you message... What in INSPIRATION!!! You really had a great response to your surgery and kudos for all you've accomplished since. Wow, 2 children - they are lucky to have such a positive and stong willed mother!

I wish I could have had the opportunity to get in the body mind thing... it's just that the pain consumes my day and the bathroom consumes my what ever else I have..

I do pray a lot and have faith in both God and my Surgeon.

Any suggestion in music I could listen to? Or positive type CDs?

I am thankful for all and any advice...

Aw Kathy...not a rock star for sure...just a pig-headed you-know-what when I set my mind to something. I was determined the ileo would work and that was that. The iron will and backbone of steel comes from my Mom, but don't tell her that

RoC - I have an MP3 version of the guided meditation program I used - send me an e-mail with your e-mail address and I'll send it to you. Never too late to start. Use it a few times a day leading up to surgery and see if they will let you use it during. I found using the program gave me a feeling of power, that I was participating in my cure, not just letting the doctors do things that I had no control over.

Bring a picture of your "Happy Place" with you to the hospital - for me it was a photo from Disney's Grand Floridan hotel pool swimming with my husband. It was on the side rail of my bed during my recovery time in the hospital. I also gave myself a goal - something that I wanted to do that would signal to me that I was well. Mine was the hike to Ramona Falls. I saw a picture of it in a book and decided I wanted to see it. When I finally got to see it I declared myself healthy.

Best advice I ever got about surgery was from my fabulous Dad - don't measure your recovery by daily improvement, but by weekly and monthly improvement. Things can be too variable day to day. The longer span gives more opportunities to see good things making you focus less on any set backs.

That's all I can think of, but feel free to send questions! I have bedtime duty with the kids tonight (my husband has them at karate class, so I didn't have to go out in the cold rain) but I'll check my e-mail before I go to bed so I can get you the MP3 quickly.

hey roc,
i after j-pouch failure for the 2nd time,years of excruciating pain,pain killers,opted for an end ileostomy.i left the j-pouch in so it could heal or i could have it converted to a k-pouch.im sorry you had to undergo so much pain and difficulty,its similar to my own experience.if you would like to message me,feel free.

RoC, I wanted to wish you luck tomorrow. You have been through so much already. You are doing the right thing. This will give you your life back. I sent you a pm with my contact info. I am only a couple months out of pouch removal and perm ileostomy myself. Hang in there. We are all here for you!

Hi,

I have a permanent ileostomy and am so thankful to get my life back. I've had minimal problems adjusting and my surgery was uneventful. I also live in Florida (Merritt Island) and had my surgery to remove my j-pouch performed by Dr. Juan Nogueras at the Cleveland Clinic in Weston. He did an amazing job and gave me a perfect stoma.

Best of luck to you with your upcoming surgery. Feel free to PM me if you have any questions or want to talk.

Caty

P.S. I had my j-pouch surgery done in 1992 and my permanent ileostomy and pouch removal done in 2007.

Hey Caty,

Dr. Nogueras did my surgery as well, just this past August. He said he gave ME the perfect stoma!! He's so cute, isn't he?!? He LOVES his own work!

Hey itsnotsherry,

I was so scared that Dr. Nogueras would not give me a "perfect" stoma that I found a picture of a beautiful rosebud on the Internet, printed it out in color, and just before surgery gave it to him. On the picture it read "Don't forget your promise". His surgical nurse got such a kick out of it that she attached it to my chart. It may still be there for all I know.

Doctor Nogueras did a great job and I'm very grateful.

Caty

Caty,

That is a funny story! He did 9 surgeries for me, and saved my life. He knew how badly I didn't want to go back to an ileo, so he tried extra hard to make it perfect. All the nurses and interns told me how proud he was of the final result. I saw him recently because I have Peristomal Pyoderma Gangreosum, and all he could talk about was his perfect stoma, and was reaching behind, patting his back. I love him!!

Glad you are doing well!!

I have peristomal pyoderma gangrenosum as well. That's been the ONLY problem I've encountered since my ileostomy surgery. Dr. N has me on Protopic and it's working very well, but it is a chronic condition (comes and goes). I also stopped using a belt because the plastic part was hitting right where the wound is. That seems to have really helped with the healing process. The flange stays on even without the belt. He's a great guy and an excellent surgeon. I travel a very long way to see him and only stop in when I'm having a problem with the pyoderma. I've only seen him three times since my surgery in 2007.

Caty

Hey Caty,

I tried the protopic, but it didn't really do the trick. They have recently added in steroids, and the oral base, with a steroid topically. I am hoping this does the trick. I too, think the belt was the problem. I developed a bad reaction to the adhesive right after the surgery, and they belted me. The sores are right where the belt connected. I have had these sores for almost 4 months. How long does it generally take you to heal?

Hi Itsnotsherry,

I use the Protopic straight up and have stopped including the oral base paste. They original told me to mix a bit of the two together and then use a tongue depressor to apply. I've reached a point that if I jump on the problem immediately (before the ulcers get too big and too deep), I can apply just the Protopic. The reason for the oral base paste is because it helps to numb the ulcer and help defuse the pain. My ulcers aren't very painful anymore because I can tell when one is coming and so begin treatment right away.

The only time I use any kind of a belt anymore is when I first apply the appliance system. I have a 3" wide Nu Hope Belt (nothing hooks) and it's very comfortable and helps give the new flange a great seal. I remove the belt after a few hours and I'm good to go for five days.

It does take a while for the pyoderma to settle down (about a month). I have only one small spot where the belt loop is located. My pyoderma started after surgery when I had a slipped stitch. The stitch area healed but a couple of months later I developed pyoderma for the first time ever.

One more very, very helpful thing I do. I purchase from a medical supply store packets of Kendall Telfa Non-Adherent Dressing 3" X 6" to place over the wound area. The dressing is shiny on both sides and works very well with the whole appliance system (flange doesn't fall off). I cut a little circle of the dressing and put it in place after applying the medicine. Then I apply the flange. After five days when I take off the flange the dressing comes right with it and doesn't hurt when removed. You'd be amazed how much it helps in the healing process.

The trick with pyoderma (as I'm sure you already know) is to catch it early. Then while it's at its worse, change the appliance (and apply the Protopic) every three days and when it's better, go back to every five days. At least that's what I've found to be the case in my own situation. I've also got one more tip from the Cleveland Clinic. When the wound is all healed and all I have left is a red scar, I apply an OTC product called Cortizone 10 (in a roll on applicator). It has hydrocortisone 1% plus Aloe in it. I use a bit on the red spot and apply the dressing. That's it...

It's great to talk with someone whose also having problems with pyoderma.

Caty

I agree! Always nice to know you're not alone, and share ideas. I do all the same things, you do, but have not found the same success yet. I keep trying!! I think the steroids are making a difference, although I hate how they make me feel!

Hey RoC! Been all through the failed j-pouch (2 of them) and even tried a Koch pouch (failed) before having the permanent ileostomy over 20 years ago. In my mid 40s now. Never had any pain with the ileostomy surgery, although sometimes I ate to much ruffage and got a small bowel obstruction. Rectum pain is non existent. I did require one last surgery on the rectum because it did not completely close up on its own, but I went home same day. After the ileostomy surgery my health came back much quicker than any other surgery. A great resource for ostomy products are the specialists that the pouch manufacturers have, say Hollister, Convatec, etc. I learned a lot more from these people than from any nurse. Once they helped me figure out the best products for my needs I routinely get 7 full days of wear time before needing a new pouch. Before speaking to them, I got about 3-4. The propduct I like the best is the Eakin large protective barrier- goes over your skin first, and then you put the pouch on top over the stoma. Kepping the skin healthy and protected is the single greatest way to increase pouch adhesion and wear time.

Caty,

How often do you have a reoccurence? After much pain, time, and steroids, it finally went away, but I think it's coming back! I am so upset!!

Hi Itsnotsherry, I had my last recurrence in December. It has taken from December until now for the skin to look like the rest of the tissue around my stoma. With the Protopic administered immediately, the ulcer went away within two weeks. It's the fragile skin area left behind that takes so long to resolve, but it looked real good today when I changed my appliance.

Don't panic; if you have any Protopic ointment left start using it and place a small piece of gauze or something similar on top of the ulcer before applying your flange.

Good luck and talk anytime...

Caty

Hi Caty,

Thanks for your quick response. I put the protopic on it as soon as I saw it. When did you have it prior to december. I am wondering how often I may have to deal with this nonsense. I had such a difficult time gettting it to heal last time. I didn't respond as well as you did to the protopic and had a long stint on steroids as well. I was praying this was a one time thing for me.

Thanks again!

Hi Itsnotsherry,

It's hard to remember, but I think I get about 2 to 3 occurrences per year--all little ulcers that I jump on with the Protopic. I know immediately when I have an ulcer starting because the area hurts to the touch and I can see my skin turning a bright red color past the flange white tape. It's probably going to be a chronic condition for the rest of my life but very controllable thus far with Protopic. It's the same as when I had my j-pouch. I could tell when I was having a bout of pouchitis and would start the Cipro immediately. I even had a prescription for Cipro from my surgeon because he knew that I would only use it when I needed it.

My worse episode of pyoderma gangrenosum was my first one because I didn't know what I had and tried to fix it myself (was also misdiagnosed at a local hospital). It's so much easier to take care of it now that I've done my research and have had a few episodes to learn from. I do get discouraged at times (don't think that I don't), but things are much more manageable and not as frightening as the first time. By the way I only get one ulcer at a time, at the 9:00 position on my belly, where I had a slipped stitch after my ileostomy surgery. The rest of the area around the stoma is always fine.

My life with my ileostomy is truly wonderful. I don't regret for one moment my decision(with Dr. Nogueras' persuasive push)to have the j-pouch removed, anus closed, and a permanent ileostomy made.

Chris

Hi again Caty,
I'm glad you can handle yours so well and hope mine get easier to deal with. I had 7 last time, surrounding my stoma. They just wouldn't respond. I only hope this time is easier. I don't regret my decision either. Just tired of pain one place or the other. I saw dr. Nogueras in December and he was so happy we went ahead with the surgery. I look and feel so much healthier.

This too will pass! Thanks for the advice!