I am so sorry to hear about your daughter not being able to have a Kock pouch. She really needs to hear from folks who have a conventional ostomy and are doing quite well. And there are a lot who do.

I am sure someone will post here soon and maybe can give her some encouragement.

I wish all of you the best!

artmom-
I pm'ed you. But also put your post on the general discussion board. You will get more responses.
also as we just went through this lengthy and expensive out of town ordeal at CC with my perm. ostomy surgery.. my husband would be happy to share some of his money saving tricks with your husband. Let me know if you need help on hotels, parking fees, etc. He was in a hotel nearly a month.
keep in mind ..for yourself that the nurses at CC are wonderful. She will be well cared for.

I have been to Cleveland Clinic many times from TN and it can get very expensive. Thank goodness I have very supportive parents and have somehow found the means to get me there each time. What I wanted to pass along to you is that if your daughter is under the age of 30 and she had this disease as a child, then your family will be eligible to stay at the Ronald MacDonald House which is very convenient to CC (only a matter of minutes on the CC shuttle). Stops right at the front door of Ronald House. My family and I have stayed there almost every single time we have been to Cleveland. The RMD house phone # is 216-229-5758. Reservations are on a first come first serve basis. You can only call (I believe) at 1:05 p.m. EST the day before arrival. If nothing is available, they will put you on a waiting list and call when someone checks out. Good Luck to your family and your daughter.

Oh and the cost is only $20/night and that is if only you are able to pay. If not, there is no cost.

Thank you all. Dr. Dietz said that she may be a candidate for a future K-pouch. It is just so hard to know she will be cut open again with such a large incision. She is scared to death and so depressed an the thought of living with an ostomy. All she sees is surgery, pain, hospital stays...as so many of you know.
Thank you for the kind words and help with facilities. As soon as we have dates I will call Ronald House. For those of you that also had rectum removed-was this the worst part? I have been reading a bit about it.

First, I'm so sorry you're suffering so much, and your daughter. You remind us all that this surgery affects more then just the patient, you're a wonderful mother! Tomorrow marks exactly 7 weeks since my k pouch surgery. I won't lie to you, it was a tough one, but like your daughter, my J pouch and rectum was in such rough shape, I was happy to see it go. Please, do me a favor, show this to your daughter......the first week is tough, but thanks to the pains meds it's mostly a blur, everyone heals differently, but the one thing I noticed immediately was no more gut wrenching pain in the rectum (which was removed) and J pouch (gone too, yahoo!). I know the prospect of major surgery can be terrifying. You have an awesome mother and boyfriend to help you through it. In a few weeks, after it's done, you'll wonder why you worried so much! I have to admit, it feels really weird to stick a tube in your abdomen at first (which I promise you doesn't hurt, at all) but after a few weeks I becomes second nature. I pray it all goes smoothly for you all, I know a little something about GI surgery. I've had a temp ileostomy bag when I was 21 after my colon ruptured, killing me for two minutes, had a three step J pouch, was good for years, the last 13 years became progressively worse, now, on to the K pouch at 43, hope this one lasts until I'm 80! If it works on me, it will work on anyone, all my very best, feel free to PM any time!

Cheers
Eric

thank you Eric, i will see if i can start a discussion with her and share your experience. Right now she is like the "see no evil, hear no evil, speak no evil" frame of mind. This translates into staying in her room, on pain meds, sleeping and withdrawing.

For everyone of you, let me just state what I am sure you have all heard from someone in your life. If given the chance we would have taken this pain from you, and switched places for all that that means.It is soul crushing to watch you go through all of this.

Ps - the rectum removal hurt for about two weeks, but not as bad as I thought it would though.

Having the rectum removed is not as bad as it sounds. It definitely hurt a lot at first, especially when the nurses try to get you walking and sitting up, but it goes away and she will feel the same as she always has. My surgeon said it's usually the hardest part of recovery, but it really wasn't for me, and my incision even popped open.

I wish you and your daughter good luck!

My Kock Pouch is 34 years old, no problems, no further surgeries. I wanted my kock pouch, I had Toxic MegaColon, Gangrene and Peritonitis and had a total colectomy and couldn't be sewn shut. Then my left lung quit working and filled up with fluid and had to be drained from an abscess behind my stomach. That too couldn't be sewn shut. Both of my incisions were packed with salt water packs to draw out the infection. This is when I ended up with a Brooke Ileostomy and at that time had my rectum removed. Then I had scar revisions, all these operations were in 1 hospital stay of around 4 to 5 months long. Then eights later I wanted to have this new operation called the Kock Pouch, and I am so glad I did! I love it. I have never had a J-pouch as it wasn't even around back then. So all I can say, is I am allergic to adhesive and didn't like the Brooke Ileostomy at age 25, so I wanted the Kock Pouch badly. I do not regret it one bit, I feel very fortunate to be able to have one. Wanting one is a big help with dealing with the recovery and the stretching of the pouch after surgery. Would I do it again? Yes, in a minute! One thing you have to remember, is some people don't have the choice to even have one.

She is probably mourning the loss of her J-pouch, which is understandable. She will feel better once it is removed, as it is making her sick. In time, she will realize this.

As far as how do we get through it? One has more strength than they know, when they need to be strong they are.

Rectum removal part was definitely the hardest. However, I sufferred from multiple abscesses in that area and hopefully she won't experience that.

She will be shocked by how well she will feel once she gets that sickly jpouch out. And she will be excited by what she can do and what she can eat.

Maybe you two can start working on a putting together a "hospital kit". Loading up her ipod with appropriate music, printing out photos to hang in her room, going out and buying tacky slippers for the hospital, gathering some of her favorite soft GI foods to bring to the hospital when she is ready for them, selecting some special handcreams and lotions...trying somehow to get some positivity into this. If she can get her mind around this, it will aid in her recovery.
good luck.

I wish your daughter and your family all the best. It sounds like if she can get a KPouch, it will be a good thing for her. She would be going through a lot right now for sure though. Sounds like she has a great family, which can only help.

A well formed ostomy can give you your life back. But a well done Kpouch can give you your life back, and then some. Knowing the best solution/path to take is really tough though..

Ad

We've all been there and feel for your daughter. I had my brooke ileo at 21yrs. I put it off for years risking bursting my colon but didn't care. I wasn't ready and that was that.

I woke up after surgery and was very sad. I thought I'd never find love. I'm glad she has a supportive boyfriend, I think that is huge. While my emotional state was fragile, I am severely allergic to any adhesive, tape, etc and my skin around the stoma stayed rawed.

I was a candidate for a kock pouch and had it done 6 mos later. For me, it was worth it. I had my rectum removed at the time of the ileo, but got an absess and had it redone during the kpouch. That was in 1980, when pain shots came only every 4 hrs if you could find get a nurse. Now with the pain pumps it should be a bit easier.

The kockpouch is not an easy healing process but every day gets better. I showed some girls how the kock pouch funtions (i took them in the bathroom with me!) and one girl said she preferred her ostomy. So, I think it's important for her to really understand it completely before going forward.

There are many ostomates that are thriving. With the internet and facebook, there are wonderful groups for her to find support and have understanding. Not just here in this wonderful group.

At the www.uoaa.org

a wonderful story and ideas from cnn.com
http://www.cnn.com/2012/08/03/...y-fashion/index.html


FB groups:

https://www.facebook.com/#!/LoudandProudwithanOstomy

https://www.facebook.com/#!/FullFrontalOstomy

https://www.facebook.com/#!/TheGreatBM

Etc etc. If she does the facebook thing, I can send her friends that are dealing with it as well. Many had failed jpouches and failed kpouches living with their ostomy.

On a side note, I feel for you as a parent. I recall my folks just telling me they would do everything in their power to send me whereever I needed to go. Even to sweden to have Dr Kock perform it directly. But I knew finances were not there and in my heart couldn't even ask. But, after appeals our hmo said yes and I had it done out of network.

Best to you all!

Please tell your daughter there is hope. Whatever the outcome, things will get better.

I chose to get an ileo after failed j-pouch at the age of 30. Many drs wanted me to have more surgery to save the pouch, but I just wanted to be healthy and get on with life. If your daughter can see the ostomy as the way to get healthy and get back to life, and maybe eventually a k pouch maybe that will help her accept it.

I've now had my ostomy since 2001 and have had two babies - now 6 1/2 and 4 - have been hiking, kayaking, traveling, anything I want. Truly, the only limitations an ostomy puts on you are the ones you create in your mind. I've worn form fitting dresses to wedding and no one has ever know what was underneath.

If your daughter decides she would like to talk please have her PM me. I really understand how overwhelming it all is and I spent 5 years going through surgeries and treatments and I thought it would never end. But it did, and things are great. She just has to keep faith and keep moving forward.