I found this helpful (Post Hospital Survival Guide)

[Kara29]

I know I will need this information. When I had my cystectomy I didn't have written instructions as to how to take care of myself. This is good information. I hope I get some good information for my surgery. I will be writing my own guide as soon as my reconstruction is done.

http://blcwebcafe.org/posthospitalsurvivalguide.asp

Hope this helps others someday!

Kara

[SharonA]

Kara...This is great information. I am sure it will be of value to many. Thank you for taking the time to post it.

[Judith56]

Kara, I am sorry that you were not sent home after your neo-bladder with the proper info. Hopefully this time since it is a different surgeon and hospital they will provide you with written directions, etc when it is time to go home. If not ask them to write things down for you. Don't forget there are a few of us here who have had the surgeries and we would be glad to share our knowledge and experiences with you. All you have to do is ask! Hugs, Judith

[Imustpee]

Judith is right! All you have to do is ask or call...hope you are feeling better today!

[Kara29]

Thanks Judith,

I will be asking for help as I go through this! Thank you for your support. It is much appreciated.

I know there are others out there that have had this type of surgery done (several in fact, more than we all know who had IC) I found out from another site.... but they went on with thier lives and we don't hear from them because they don't need "support" or to come on here anymore but I still do. It would be nice to hear from all of those people what happened to them so we didn't feel so lonely and scared. They could be a BIG help to some of us right now. I will continue to come here to offer support even after I recover and "hopefully" get better.

Here's to support groups like this one! ::as she lifts her glass of IC friendly spirits and gives a toast::

HUGS

Kara

[Judith56]

Kara, I am looking forward to your questions. The reason I still come here is because when I had mine done 20 years ago it was so very different. At that time many doctors still didn't believe that IC even existed and there were very few treatments. Diet was not even considered, there was no Elmiron, Interstim or most of the things currently available. I had only contact with one person who had the surgery and that was in the form of a letter. Because I had several surgeries for this I want to share my experience with those who may need it. It is my way of giving back, though I must admit I got more support from my local ostomy group that I ever did from the ICA groups I was associated with. Times change. I was even a support group leader for the ICA chapter in NJ. As for others moving on with thier lives- I really do applaud them. For some this disease was so horrible that if they can leave behind all the bad things about it and move on then that is thier choice. It may be too painful for some to come back here and relive thier memories. They also may feel that they are a part of the ostomy community now and more comfortable going to those sites. I agree there are quite a few of us out there.I know of several sites and groups online. When I became an ostomate I was involved with my local ostomy chapter and then went on to become the visitation chairperson. co-ordinating visits to new ostomates as well as doing them myself when appropriate.I also set up the training programs to become a visitor - you need to be certified and take a class to become one.IN addition I was the chapter president. It will be nice once you are recovered and feeling good to give a perspective on how you are doing. Hang in there, you are in the home stretch now! Judith

[Kara29]

My IC Family Just Can't be matched to the Ostomy Groups. I am here for them and they are here for me not matter what treatments we all decide to use for our IC, weather it be just the IC diet or unfortnately as drasitc as bladder removal.

Kara

[Mrs. Burschman]

Kara,

I'm glad you've found more information (and continued support from here!) We certainly hope that when you feel as good as new, you'll stick around. You're an inspiration to all of us!

Amy (Mrs. B)

[Judith56]

Kara, I am sorry I hope you didnt take offence at what I said. I certainly would NEVER suggest you leave this board once you have the surgery, you are very loved here. What I was trying to convey was that once you have the surgery you may find relating to other ostomates will add to your circle of support. There are many sites out there to choose from and you may find one or two that click for you. I certainly benefit from being in both "worlds". Not all sites are the same and some are better than others.

[Kara29]

Judith,

Depending on how I come out of the surgery with an Ilieal Conduit or a Continent Urinary Diversioin, I will be using all of the resources and tools I have. I just find the most support here for my main support group. I've been here for so long, I think since 1999 that it's become part of my life and some people have literally become just as close to me if not closer than family members. "my 2nd mom on here knows who she is" There are so many others that have loved me through all of the ups and downs. When the surgery is done and I am somewhat healed, I hope I can give back all that has been given to me throughout the years.

Jill has saved my life many times by putting up this site!

Thank You,

Kara

[ihurttoo]

Kara, I just want to tell you that I am glad that you are so proactive in your care. I understand you so well because I cope with things the same way that you do....I want information. The more I can get, the calmer I feel. I am glad to see that you are finding things. Thank you for posting this for others who may need it, now or in th future. This would be so helpful to anyone who has to be hospitalized. I would have loved to have read this before I had my hystetectomy. Thanks again for the post! Hugs, Amy

[DebbieD]

Kara Judiuth and I have almost Been through the Same thing. But I think omnce you have gone through it ,each Person and Dr. has there own way of teaching on how to handle thing. Actually I went Yesterday to Get a new Wafer so I could swim Better this summer with No Problems. There are ways to adjust to it even Sex Ways. Just turn the wafer to the side. I have a Bag cover and just tape it to your side. No Problem. Also with the Plastic Bag you wil sweat a Little More in the summer. Just Keep a Wash Cloth or Hanmie Under your shorts. It works. I also wear a short Bag. So I wear shorts with No Problem so nobody can see the Bag.I have Never worn the Long type of Bag.Like I said Do not be Scared to take off the Applance in the Shower. It is good to wash all the Area. Water does not go inside the stoma. Always Make sure it is Healthy and Red Color. The stoma will move around sometimes. Like Your Intestines. It fells Funny, But it s okay when it Happens.

If you have a Two-piece System Make sure you hear the snap Like a Tupper Seal. Always take along extras in your Purse. Just incase you ever Have a Leak. It can happen. The Bag could Have aPin hole Leak or the Snapight Not be on the way.Always Carry Extra Undies. You will learn the things as you get use to it.


We are all here for you. Just let us know any Questions and we will try to anser them Okay.

Hugs sweetie

Another thing. Change the Applanince the First thing in the Morning when the stoma is Less active. Always Put a Four by four on it. It will squirt out urine when least expect it.

Like a Little Boys Pee wee. You will never know.

I alwyas Stand up over the Sibg and change Mine. I have heard of People laying Donwn.

I also have a :Surfit Night Drainage system that is a Jug that goes to the foot of my Bed that I Hook up to a Night. That way I can Just Roll all over at Night and the Urine drains to the Bottom of the Jug. I use the Bedsie Night Drainage Bags for Travel. Or When Ever I am in the Hospital. Also when Ever I go to the Hospital I always Carry my Supplies, Cause the Hospital sometimes might not have what you want.

I also Cut My wafters. You can get them Precut. But When I order I sit down at Night and Cut the Circle for My stoma size. I also use an insert and Like a Wipe of skin Prep.

Here is how I do my system.

When I get ready. I lay all my Supplies out. So when I get out of the shower I first Grap the Four by four. Stick on my Stoma. Then I open the Little skin Prep wipe around the ares of the wafer where it is going to go. then I fan the area for the skin prep to Fry. Slip the Wafer over the Four by four. then I pput by bag on until I hear the Snap. Sometimes I use the Pink tape around the wafer for extra seceriity. Not always. Then I finsh getting ready. Before I go off anywhere i just open the End of the wafer and Off I go.

Do not Be afraid of it. It is part of you. I call it My Baby. Remember I could not have Children either. When we go out and I have to Potty I just stand up Like a man at the Toilet and Open the Valve and the Urine comes out and Off I go. It takes no time to Potty now.

Good Luck honey and remember we are all here for you. Just ask Questions and we will be Glad to help you out.

Hugs
DebbieD

[ihurttoo]

I just had a thought. For those that have external bags, if they cause you to sweat where the bag touches the skin, perhaps you could make some pockets for them out of fabric. Flannel or silk would be nice. You could make it with a fold over flap, and a button. I dont know if that would help or not, since I haven't seen a bag, but I am thinking that it would. What do you think? Hugs, Amy

[DebbieD]

Yes you can Make them if you Know How! Bu the Medical supplies also offers Pouch Covers. I have a Red and a couple of Brown Ones. I have seen some out of Lace! Sexy!

DebbieD

[Judith56]

When I wore an external pouch I had several pouch covers two were cotton knit and one a friend made for me- it is black lace for "intimate moments",lol.