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Kiwi_Fairy

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Posts: 98
Reply with quote  #1 
Not posted in a while.

I’ve recently been referred back to urology (discharged 3 years ago from gynaeurology after exhausting all treatment options) as I’ve been deteriorating since September (now getting multiple kidney infections, lingering kidney pain, back pain). The urologist believes that I’ve reached end stage IC. That my bladder is now basically a hard ball putting pressure on my other organs hence the lingering kidney pain, back pain, infections). He’s repeating urodynamics and rigid cystoscope and if they confirm his suspicions then he will remove my bladder.

I was just wondering how people have coped after getting their bladder removed. More along the lines of recovery and adjusting to having a stoma rather than mentally.

It’s the recovery more than the surgery that concerns me as I can research into the science behind it and the methods used (having a science background this stuff interests me) but I’m finding it hard to find blogs/stories online from people who’ve had it removed due to IC rather than bladder cancer.

Sorry for the waffle having a high pain day and if you’ve read this far thank you! X
annec

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Posts: 17
Reply with quote  #2 
I had surgery four and a half years ago for end stage IC.  I have an Indiana pouch and Mitrofanoff as a bladder substitute and now pass urine by catheterising through my stoma.   I still have my native bladder in place but it's no longer in use. Whatever surgery you have it's major so expect a long recovery time.  I was in hospital three and a half weeks initially but had to return to theatre during that time due to problems with removal of a drain.I then went home with a catheter in my mitrofanoff as well as a suprapubic catheter for 6 weeks which is standard for the Indiana pouch. I was back in for a day to have them removed and check everything was working properly.  If you opt for a non continent urinary diversion the surgeries a bit less complex but you still need to be realistic about recovery time.  A lot depends on your age and general level of fitness too.  I was advised a minimum of three months off work if in a sedentary post but about 6 months if in a manual job. 
I don't know what type of surgery you're planning to have but advise weighing up the pros and cons beforehand.  I didn't have the uti or kidney issues prior to surgery but have had since surgery due to reflux and hydronephrosis . This seems to be a fairly common issue with a mitrofanoff and Indiana pouch.  It's much less so with a non continent diversion as urine is draining straight into an external bag rather than being stored in an internal reservoir and getting pushed back into the kidneys.
I would advise keeping as fit as possible prior to surgery and getting mobile as soon as you can post op.  Also think of doing core exercises pre op and look into wearing hernia support underwear afterwards when comfortable to do so. As well as protecting your abdomen and helping prevent hernias it gives you a bit more support when moving about.
If you've any other questions I'm happy to help.
Kiwi_Fairy

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Posts: 98
Reply with quote  #3 
Thank you for your reply Annec

Returning to work isn’t an issue as I’ve been unable to work for almost 3 years.

I’ve read a lot into the different surgeries and the results and I think if it goes ahead I’ll be getting the ileal conduit (I’ve probably spelt that wrong!).

They will be removing the bladder completely as they believe it’s currently a hard rigid mass and putting pressure on my other organs. Unfortunately I’m not a simple case of IC as it effects the whole of my pelvic region not just isolated to my bladder. In addition to that I have multiple other chronic health issues.

Yikes to the 3.5 week stay in hospital that’s something I won’t be looking forward too. The hospital is 31 miles away from where I live so easy 45-60 minute drive depending on traffic never mind the fact I hate hospitals and will be away from my animals in that time! Xx
annec

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Posts: 17
Reply with quote  #4 
You're welcome,
I should have been in hospital for 17 days, only ended up in longer because of the issues with my drain.  Your Consultant will be able to give you an idea of how long they expect you to be in, obviously if you have any issues post surgery this can delay your discharge.  My Consultant was unwilling to remove my bladder at the same time because she felt the Indiana pouch and Mitrofanoff surgery was complicated enough without a cystectomy at the same time.  I also have abnormal blood vessels in my pelvis so the bleeding risk was a concern.  Had I continued to have major issues with pain I could then have my bladder removed at a later date.  I had and still have chronic neuropathic pain around my sacrum, groin and thighs. This is partly due to IC.  I very occasionally get short spells of urethral/bladder pain but they're infrequent so manageable.
If you're opting for an ileal conduit you'll be seen by a stoma nurse prior to surgery and have follow up after.
I attend a stoma support group in my nearest city which has been invaluable.  Unfortunately I only found out about it several months after surgery.  If you're able to attend one before your surgery I would encourage you to go along.  It's helpful to speak to people who have had the same surgery previously.  As well as getting tips for managing your stoma they usually ask reps from supplies companies along.  They promote their products, stoma bags, adhesive removers etc. which is helpful, especially further down the line. You may have Urostomy Association meetings in your area. If you contact them they can post information leaflets  out to you on ileal conduits and what to expect pre and post op. They may have befrienders local to you who can meet with you or contact you by 'phone.


Kiwi_Fairy

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Posts: 98
Reply with quote  #5 
Thank you x
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