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Go Back   Interstitial Cystitis Network Support Forum > Treatments For End Stage Interstitial Cystitis > Bladder Removal
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Old 01-04-2006, 11:19 AM   #1
Kara29
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Here is some help for preparing for bladder removal.


(President's Note! I love posts like this that really help patients asses the pros and cons of a procedure, but also that nurture their heart and soul. Bravo Kara! I wish I had seen this one earlier! - Jill O. (02/22/06)

Lara,

I was thinking of you when I put this together but it's good for all of us!

I know exactly how you feel. I've been there before I had my bladder taken out. I had to see a Psychiatrist for therapy before surgery. She got me mentally prepared for what was ahead.

"What you are facing is life changing and you are losing a part of your body.First, you must physically prepare your body for the stress of undergoing surgery. Not all people have this oppotunity, as some operations are urgent or even emergent.Good nutrition is paramount in keeping your immune system healthy. By eating a balanced diet with vitamin supplements in the weeks before your surgery you will have a higher chance of healthy wound healing and decreased chances of infection.Also remember that if you can exercise, it boosts your immune system, and can counteract depression, a common emotion prior to surgery If you have planned to quit smoking in the past, consider your surgery a perfect opportunity to begin to quit. Smoking significantly increases your chances for an unsuccessful operation and complications. The ill effects of smoking on lung function during and after anesthesia are multiple. A smoker has a much higher chance of developing pneumonia after surgery than a non-smoker. Smokers actually inhale small amounts of the deadly gas carbon monoxide when they inhale cigarette smoke.

Understand the surgery. Research the procedure. Read the fine print.
Speak with patients who have had the procedure. Discuss it in detail with your surgeon.Work with your doctor and other patients to form realistic expectations of the outcome.Start a journal. Jot down how you feel now, current obstacles and challenges in your life, and your hopes for the future.
Recruit support. Ask your friends and family to put their backing in writing. Make sure your friends and family members understand why you've chosen a surgical solution. Discuss your reasons for having surgery. Explain that your health is at stake and you are counting on them to help you during and after surgery. Attend support groups in person and online. Surround yourself with people who share your situation. Ask questions in a supportive environment. Form a network of friends to share experiences, recipes, and exercise tips.

Remember: You are not alone.

After learning that surgery is needed, the first step in maintaining personal power is to lower anxiety about the surgery and create an empowering attitude. This can be done through a daily practice of relaxation and healing imagery. There are many relaxation tapes available, some of which are specifically designed to enhance surgical outcomes classes on hypnosis, breath, guided imagery, and meditation were reported to have had their stress levels drop and their pain to have decreased."


Here is some information on how to prepare your body emotionally before surgery. This site has some great information. It comes from this website: http://womensmindbodyhealth.info/sur...m#how%20do%20I

"Preparing emotionally
1) Assess how you are feeling emotionally. What comes up? Fear, anxiety, depression, anger? In the past when you have felt this way, what have you done to help yourself feel better?

2) What are the roots behind these emotions, and are there practical things you can do to alleviate them? For instance, if you have a specific fear about the surgery, can you obtain information, go on a hospital tour, or talk to
women who have had this surgery already to help put your mind at rest?

3) What “negative self-talk” is present? Write down thoughts that pop into your head and really look at them. Is there a pattern? There are many techniques to try and prevent this from happening, since these negative thoughts can become a vicious cycle, draining your energy. For example, try to recognize when you are having these thoughts, imagine a large red STOP sign appearing, and then repeat the thought in a positive way.

4) Use journaling as an outlet to express how you feel.

5) If you have had a previous difficult experience with surgery, perhaps even as a child, it might be worthwhile to work on this with a counselor before you have surgery again.

6) If you have had a history of sexual abuse, especially if you have never told anyone about this, here is another area where seeing a counselor first would be a good idea. Having surgery is a time when you are very vulnerable, and in a sense your body is being violated. For some women, this may bring up emotions related to previous abuse. If you are having extreme anxiety at the thought of surgery, consider this as a possible reason.

7) For many women, the possibility of losing a female organ (breast, uterus or ovary) represents more than some tissue. Aside from practical hormone concerns, are you having worries about your sexuality, your sense of “womanness”? How much will this surgery change how you feel about yourself? How does your partner feel? Discussing this out loud will help with postoperative adjustment.

8) The thought of losing a body part can also engender a sense of loss, and a kind of anticipatory mourning--especially if there are very charged emotions involved, such as having to have a hysterectomy after never being able to have a child. Many women feel very angry at, betrayed by, or negative toward the part that they feel “isn’t working right.” Realize that your body is constantly trying very hard to be as healthy as it can, and it is not its fault if genetics or environmental exposure have swamped its resources. This body is the only body you will ever have. Learning to appreciate and accept it with compassion for all of its flaws, will bring a sense of acceptance of yourself as well. Using imagery to say goodbye and thank the part for what it did, or tried to do for you, can bring peace before surgery, and closure afterwards.

9) Many people deep down feel guilty that there is something they did that caused or contributed to the reason they are having surgery. While all of us wish there are things we’d done differently in our lives, we are human, we make mistakes, and we usually make the best decisions we can at the time with the options we have available. Self-forgiveness will help you heal in more ways than your incision.

10) Facing surgery is an opportunity to re-connect with others. Are there friends or relatives you’d like to contact again?

11) Arrange a support network of friends and family who can spend time with you before going to the hospital, visit or call during your stay, and help with after care. This is not a time to see people who upset you, out of duty. Being with others who care about you decreases anxiety and increases immune function.

12) One way of feeling connected to your support network is to draw a little symbol on the middle of the inside of your lower arm, between your wrist and inside elbow, with a long acting pen. This area of your body is not usually used for anything medical except giving a TB test. A religious symbol, the initials of your partner, little hearts drawn by each of your children, etc. can remind you of their presence. Even if your arm is restrained with an IV, you will see these symbols in your mind’s eye and know they are there.

13) Check with patient services at the hospital as to what complementary services are available. Massage can help decrease pain, improve immune function and improve sleep. Do they have someone on staff, or will they allow you to use the services of a body worker you know? Even if there are concerns about interfering with an incision, a simple foot massage can be very relaxing. This might be a useful thing for friends and relatives to chip in and provide. Alternatively, do you have a friend that can come and play a musical instrument for you?"

There are knowledgeable, friendly people available to support and help you.

I hope some of this helps you as you mentally prepare for this surgery!

HUGS,

Kara
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Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)

Unrelated to my Indiana Pouch and Urethrectomy, which were very successful and have improved my quality of life to a much better degree, I’ve also been diagnosed with a very painful condition known as Pudendal Nerve Entrapment, with Vestibulodynia. It's a very poorly understood condition that could have been treated years ago had we known what it was. To learn more about PNE, symptoms, diagnosis, causes, and treatments feel free to visit: [b]http://www.pudendalhelp.com/home.html

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Last edited by icnmgrjill; 02-23-2006 at 07:36 AM.
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Old 01-04-2006, 12:02 PM   #2
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Kara,
That was awesome.

Hugs,
Barb
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Old 01-04-2006, 01:06 PM   #3
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Kara, thank you so much for this message. I am going to follow these helpful tips each and every step of the way. You know exactly what situation we are in here, and thank you for making our transition easier. If there is an IC angle, it is you Indy
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Old 01-04-2006, 03:16 PM   #4
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Thanks for posting that Kara, well said! Judith
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Old 01-18-2006, 01:24 AM   #5
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Kara,
Thank you so much!!!! YOu are so wonderful, such an angel! I have been wanting to respond to this post for a long time now, but a lot has been going on and I haven't had access to a computer! You wouldn't believe everything that has been happening! It just never ends!
I am going to write everything in a new thread to everyone, I just really wanted to thank you for this it really has been helping me!!! Thank you for being here Kara, you bring all of us so much comfort!
Love,
Lara
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Old 02-23-2006, 07:54 AM   #6
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Congrats Kara! Thank you for all that you do!
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Old 02-23-2006, 10:57 AM   #7
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Congratulations, Kara. *Applause, Applause*
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Old 02-23-2006, 12:42 PM   #8
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Very well written Kara! Much deserving of the president's award
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Old 02-23-2006, 05:24 PM   #9
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Congratts Kara ! Well Deserved,love Sandra
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Old 02-26-2006, 08:34 PM   #10
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You go girl!! Congrates!! Well deserved!
Take care and God Bless, Cassandra
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Old 07-22-2007, 08:04 AM   #11
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Cassandra,
I'm very new to this board, but was diagnosed with IC over 20 years ago.

I live in Ca. too. I'm trying to figure out if I may be eligible for Social Security Disability. Mainly I need the Medicare benefit. My outstanding balance at the Pharm is $4,000 even though I pay $300-350 per month. Get this, I do have Blue Cross prescription drug benefits. They have cut their benefits for brand name drugs so much that now Elmiron costs me $250 monthly. They don't pay for Bicarb, Lido, or the homecare supplies needed to do self instillations.

DOES ANYONE IN CALIFORNIA have firsthand knowledge about applying for Social Security Disability in order to get Medicare?

Thanks in advance, Jan
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Old 07-22-2007, 01:02 PM   #12
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Jan, first off you should be aware that once you disability you do not automatically get medicare. That takes a couple of years to kick in, at least that it is how it used to be. Have you gone to the section on this board about Social Security/Disability? There may be someone on there that is from Ca and can tell how the process is there. Judith
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Old 07-22-2007, 08:03 PM   #13
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SSA Medicare etc

Judith,

I will take a look at that. I may have already. Have been doing so much research on the net that I forget what I have and haven't seen. Thanks so much for the info. Jan
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