Introduction

08-06-2010


Hello 
As you may have gathered from the title, I’m am about to undergo a Cystectomy (bladder removal). Due to the fact that there's hardly any info on the internet on this subject, I thought I'd set up a blog and let you know how it goes day by day. I've been lucky that I found some fantastic women who has been through this ordeal and has come out smiling. They have talked me through it, especially the emotional side which is what I couldn't find in my search for information. I hope that this helps someone who may have to go through this in the future.

For those who do not know me, I am 27 years old and have had Intertitial Cystitis (IC) since my teens, but was only diagnosed in 2005 after being admitted into hospital. Long story short (ish) I have gone through 3 hospital trusts, had many painful treatments, and endured indifference bordering on disdain from three different consultants. 

I also suffer with retention, which means I can’t pass urine due to my muscles not working properly any more. I’ve self catheterised since 2005. After trying everything possible, I'm now waiting for a Cystectomy and reconstruction. This involves removing my entire bladder and urethra (wee tube), and having a new one made out of my intestine and appendix. It’s a complicated operation with a long recovery time.


I'll warn you now, although I'll do my best to be positive and constructive, I won't lie. Being in constant pain, I often feel low and it wouldn’t be fair to anyone having to go through this for me to gloss over the bad parts. I may also go into detail to explain certain aspects of this disease. So if your easily offended or sqeamish, don't read it. I will not name names or hospitals for data protection / privacy reasons.

As some of my online friends will testify, many Urologists are not supportive of IC patients, and in some cases they are incredibly cruel. They are reluctant to help, as they don't fully understand the disease. Therefore they cannot identify with their patients or sympathise with their pain, and the debilitating effect it has on patients lives. 

One consultant tried to discharge me even though I was in agony, because as they had no funding for the treatment they suspected I needed, and wouldn't offer surgery. That’s not ignorance, that’s incompetence. However, by comparison the nurses have been fantastic, and incredibly supportive.

Patients like me who have end stage IC have the same quality of life as end stage renal failure, and the pain is akin to that of cancer pain. It's not an easy thing to explain to people. If you don't look sick, people can't understand why you say you are ill. The way I explain it to people is that if feels like someone has sandblasted your bladder and has filled it with hot acid. Or imagine taking all the skin off your hand, like a bad graze, and then dip your hand into TCP liquid, but instead of the pain easing after a few minutes, it is constant. With IC, the pain increases as your bladder fills, and lessens on voiding.

I've lost many "friends" because they can't understand and cannot sympathise. One of these friends openly sneers at me every time I see her. On the other hand, people I didn't think of as close friends have shown me tremendous support and I'm lucky to have them in my life.

I can see I'm ranting, so I'll try to be more factual. I was due to have this operation in May, but it has been pushed back until the autumn. Meanwhile I’m housebound, with an indwelling catheter and leg bag. Indwelling catheters give me a lot of trouble, if I move around too much, it tears my damaged bladder to bits. The pain is constant and I find it hard to sleep.

My fiancé is wonderful, I couldn’t cope without him. He is so supportive. I feel bad as he is doing pretty much everything; going to work, getting the shopping, paying the bills. I struggle just getting the housework done.

You really do need a good support network of family and friends when going through something like this. Websites like The COB Fountation, IC-Network and Urostomy Awareness can offer you support and advice from others in your situation. I’ll leave it there for now.

In the meantime, take care all.

From Sicknote