Post Operation – 3 weeks

I have had a Neobladder made and have been home for 12 days. I’m doing okay. So this is how it all went:

Day before surgery

I was admitted at 5pm on Sunday 12^th September. I was not allowed to eat from then on, I could only drink water. I had two enemas, one the night before, and one at 6am on the day of the op. They weren’t as bad as you think. It was a little uncomfortable but not painful. I had to hold it in as long as I could, and then go to the loo. And it does make you go. A lot. The anaesthetist came to see me in the evening to explain what would happen the next day. I was going to have an epidural as well as the anaesthetic so I would feel no pain. I would keep the epidural for two days after surgery.

Day of surgery

I was sent down to pre-op at 9.30am. The nurses there recognised me from last year, so I had a bit of a giggle with them and teasing the porters. I went into the anaesthetists’ room, and recognised a nurse that helped me last November when a procedure went wrong – so was chatting to her as they got on with things. I had a Cannula fitted in my left arm. I then had to sit up side on to the bed. I had a stool to put my legs on, and had to lean forward, arms folded on my knees with my head resting on my arms. They felt for the right place in my spine, and put a local anaesthetic in first to numb the area, and then put the catheter tube for the epidural into my spine. There was no pain; I could just feel the tube being pushed in. By this time it was 10am. I was then lay back down and given something to make me woozy, and then the anaesthetic was given, and I was asleep.

I remember being quite grumpy at being woken up (as my fiancée joked with the nurse later, there was no change there!), all I wanted to do more than anything was to go to sleep, but I was being poked at and talked too. I was then taken to the intensive care unit, as the high dependency surgical unit had no beds. I was in no pain; I couldn’t feel anything below my chest. My fiancée came in once I’d come round and stayed for a few hours. Then my consultant came in at 8pm to tell me that my urethra and trigone were "pristine", so he saw no need to remove them, and had made a Neobladder.

After my other half left, the nurses came to move me on the bed to prevent bed sores. When they asked me to shift over, I realised I couldn’t move at all. The epidural had paralysed me from the waist down! The downside of this was that they had to stop the epidural, because they needed to know if it was just that, or whether there was bleeding in my spine which is quite dangerous. It turned out it was just the epidural, but as that was my only pain relief, and they’d taken it away, I felt far, far much more then I ever wanted to. My memory of that night is fuzzy now, I think my brain has blocked it out. It was the longest night of my life. Once I could wiggle my toes, the epidural was started again, but not as high so I could still feel the pain in the operation site, but not my legs, which was not useful. It was fully topped up again by the next morning, when I told someone that I’d like to drag myself off the floor of the building. I remember whoever it was (I think it was the consultant, but I’m a bit fuzzy on the details) being quite condescending when I told them I was in pain. The answer being, “of course you’re in pain, you’ve just had surgery”, until I said my epidural had been stopped. It got turned back on promptly after that.

NB. Don’t let my episode with the epidural put you off having this op, as I say, it is really rare for an epidural to paralyse you – I just get all the luck. It wasn’t pleasant, but I’d do it again if I had too.

After surgery

I was in ICU for 2 days. I wasn’t allowed food or water, but could suck on a water soaked sponge when my mouth got dry. I had to be shifted every 4 hours to stop bed sores and was constantly monitored. The staff there was brilliant. You have to have a sense of humour to be a nurse, and this lot had oodles. I got along with one nurse in particular; she was really sweet and went out of her way to make me comfortable. I slept for 2 hours in 48. There was far too much beeping and monitoring going on to get any rest. I had a central line in my neck with three needles, a cannula in my arm, an oxygen tube round my nose, a stomach drain on my right side, a superpubic catheter on my left side and a urethral catheter. These were draining blood and urine for 3 days. I had stents from my kidneys into the new bladder.  I had regular bladder flushes with saline through both catheters as the piece of bowel the doctors used to make the Neobladder will continue to make mucus. It’s important that it is cleared do the catheters do not block.

I was then moved to Surgical HDU for a day and a half. I managed to sit up in my chair for when my family came to visit. I was given a morphine pump, so I could get enough morphine in my system to cope when the epidural was taken away. Again, I didn’t sleep for several days because I couldn’t push the morphine button when I was asleep so could only sleep 2 hours at a time before the pain woke me. My stomach drain was taken out, I was allowed to drink and I had my first meal that day – Shepherds Pie. I also had my first coffee in over 6 years!

On day four I was moved to the ward. I was doing quite well. I was walking around with my morphine pump, so much so that the Sister put leg bags on me instead of the big ones attached to the bed, as she was getting panicky that I would pull something out. I think this was the day I had my first bowel movement. It was loose, and smelt toxic! It was quite gross, but a good sign that things were working again. The second and third ones were very painful, I think I’d overdone it with the eating! I remember thinking; “if this is what labour feels like, I’m never having children!”

All was well until day 7 when I got a bladder infection and had a high fever. One minute, a medical student was taking my temperature, the next minute I had 8 doctors round my bed. I later found out that I'd contracted E. Coli. My temp went up to 39.5 (Normal is 36.1 to 37). I was extremely weak, I couldn’t move. That was the only time I felt really frightened – like I might be in serious trouble. I was given two IV antibiotics and a fluids drip. I had to have a chest X-ray, which was difficult as I had to stand and I was so weak. I then had a CT scan, which was a scary experience. Normally I would have been curious, but I felt weak and upset. The noise that thing makes is unnerving. It’s like a power plant starting up!

All scans were clear though, no chest infection and no leaks from the new bladder. I was nearly back to my old self after 2 days. The nurses said they were shocked how quickly I went down, and surprised at how quickly I bounced back. I was kept in for another 4 days. I had some problems with both catheters blocking, which was painful, and one of the doctors had to sort out. They taught me how to do it myself, and then I was sent home on the Friday, 12 days after the op, with a bag full of catheter bags, valves, syringes and saline.

At Home

I’ve been home for 12 days and I’ve been getting on okay. I’ve been catching up on a lot of sleep. I didn’t realise how tired I was until I got home.  I’m still uncomfortable and in some pain, but it’s not unmanageable. I’m on the same painkillers as I was before I went in. The district nurse came to visit, and a big box of supplies arrived that the hospital had ordered for me. The catheters have blocked several times, but I can sort that out myself. I developed an infection 2 days ago. My GP was coming out to see me anyway, and prescribed some antibiotics which seem to be working. I’m not as ill as I was in hospital when I had E. Coli in my system. I’ve asked my consultant if the district nurse can take the urethral catheter out, as I always get infections with them. Especially as I’m detaching it every 4 hours to flush it. He agreed. I’ve ordered some single use catheters as a backup in case my Superpubic gets blocked. I don’t want to end up flushing saline through a full bladder and risk bursting something.

I can have showers but not baths. I did keep a dressing around the Superpubic site, but I’ve stopped that now to get some air to it. I do have to keep it clean with saline though.

So that’s it. I’m moving about okay, I’ve started to do some light housework, and some cooking. I do get a lot of pain and have blood come out into the bag if I move around too much, so I just do a little bit every day. It’s important to keep active. I have a follow up appointment in a few weeks.

Sicknote.

Blog 7 Eventful week before op

It has been an eventful and unpleasant week.

This Tuesday, I got a call from a stoma nurse. She said she didn’t know how I got on her list, or why I was on there so late. (It turned out that I had been referred to another hospital closer (different PCT) but they had ignored it. My hospital didn't inform me they were referring me elsewhere and the other PCT didn't contact me at all!)

She said she needed me to come in for her to site a stoma. I blew up at this saying I’d been told I was having an internal pouch, not an external bag with stoma. This confused her. I told her that no one had sat down and explained the op and it’s risks, I've found it all this out for myself. (Luckily I’ve met up with some girls who’ve had this done and they’ve been great). 

This prompted a call from the consultants’ secretary telling me to come in at 5pm the following night to speak to my consultant. This was on Friday 10th, my op was due 3 days later on the 13th. Then the stoma nurse phoned back and asked me to come in (to another building across the city) at 4pm to have the stoma sited, in case pouch goes wrong. But it seemed to me they were leaning towards the bag option. I wasn't happy at not being consulted. I'd given up ringing the hospital as I was sick of their stone-walling.

Last night, I saw the stoma nurse, who marked out a site in case I do have a bag. She gave me a practice kit, some reading material and a DVD about it all. I have to go around with a fake stoma and bag filled with water this weekend to get used to it in case I have it. (I've taken some pictures of the kit, and with it on, will post them a later date).

Next, I went to the general hospital to see my consultant. He said there is a small chance having a bag (Ileal conduit) but he'll do all he can to avoid that option.  He wanted to leave the Urethra and Trigone in, which I was against. I said I wanted it all out because:

1.  That’s the part that hurts the most, and I think it has too much damage with all the catheterisation  to warrant saving.
2.   I’ve heard from some patients that the disease can spread to the new pouch, and it          makes sense to me to  get rid of all the damaged tissue.
   

  

On the first point he thinks the pain I feel at the base is referred pain from the rest of the bladder, and there is a large concentration of nerves at the base.

He wasn’t convinced on the second point. He said that the Trigone is made from different embryonic tissue to that of the bladder so the disease shouldn’t have spread to the Trigone, and that IC is not believed to be an infective disease. (NB. There are as many theories as there are urologists.) He's going to do a Cystoscopy first to see how much damage there is and decide then whether to keep it or remove it. He knows I’d rather the whole lot is removed.

Ideally what he wants to do is a Neobladder. If that is not possible, he will make a Mitrofanoff. If neither of those are do-able then it will be an Ileal conduit. I can still have children with any of these options, although there is a risk of infertility if they inadvertently damage the ovaries, womb or fallopian tubes. I should be in for 10 to 14 days.

So that's it! I go in at 3pm tomorrow. I'll post again as soon as I can.

Blog 6 Operation Cancelled!

I got a call on Monday 16th to say my operation for the 23rd has been cancelled because, and get this:
My consultant and his assistant are not booked to be in the hospital that day. Despite his secretary booking that date. I have two theories:


1. They never intended to operate on me that day, and just gave a date to shut me and my GP up.


2. They just have piss poor (excuse the pun) organisational skills.


Maybe both.


It's now been re-scheduled for September 13th.


I was angry and upset, but not totally surprised. I'm past the anger for now, it's not productive, and won't get me seen any quicker. However, next time I'm in such pain I consider calling an ambulance, I won't hesitate and try to cope all by my lonesome, I'll just call them out.


I have my new mobile phone now with all it's wizardry and gadgets - I'm just trying to figure out how to use the ruddy thing! Once I've figured that out I should be able to blog from hospital using my phone.


I'll post again when I go in.

Blog 5 - suffering with UTI's

I’ve been fighting infections for 5 weeks now. Every time I finish a course of antibiotics, it comes back within 2 days. I feel much better when on the antibiotics, even when the lab says there is no infection (they do find bacteria, just not in the levels where they deem it to be a problem and so consider it the natural flora of the bladder).  The only time I was flagged up as positive was when they found a strain of streptococcus in there.

The pain has been awful. Imagine that image I painted in my first blog, the one where all the skin is shredded off your hand, and then dripping your hand in a vat of liquid TCP. Now imagine the grazes on your hand becoming infected, and being knocked till it bleeds...yeah, you’re now where I am at.

I’ve been put back on a 3 day course of Nitrofurantoin 50mg, and then I am to take one a day before bed, to see if that keeps it in check.

I’m not happy because through being housebound, and eating too much cake I admit, but I’m in so much pain, I feel it’s justified; I’ve now reached size 16 bottoms, a far cry from my original size 8. I’m guessing that after my op, I’m not going to feel like eating much for a while anyway, so hoping I’ll drop that quickly. I remember after having my tonsils out, and living on nothing but watery soup, I dropped a stone in 2 weeks. I’m just worried that I might end up with a deformed scar on my belly if I can’t keep my weight in check now.

In response to realising I’m the size of a beached whale, I grit my teeth through the pain and did some exercise. I started off gentle, doing some warm up and stretches like I used to do in Thai Chi. Then, as I started to feel better, I did 3 sets of very lame step ups whilst watching Justin Timberlake videos on the music channel. Then I did a few sets some cheaters push ups (where your knees are on the floor), all in all about half an hour after I did the warm down and stretches. However an hour later whilst I was having a shower, I got a really peculiar sensation down there, and looked down to see my leg bag filling with blood! Great. So I can’t even try to get a little fitter before the operation. 

All in all, a very bad week. Since the other half has abandoned me for pretty much the last two weekends, I’m going to make his eyes bleed (as he puts it) by making him take me to the cinema to watch Eclipse. Or I could spare my other half the torture and myself the disappointment and go watch inception Instead! 

Sicknote.

Blog 4 - Pre-op assessment

16/07/2010


I had my pre-op assessment this week.

The summary – if you don’t want to read the full rant is:

1.       1. Took measurements and an ECG

2.       2. Asked a series of medical questions to assess my suitability to the op

3.       3. Urine sample

4.       4. Spoke to the anaesthetist to discuss the anaesthetic risks and post op pain relief

5.       5. Blood tests.

First they measured my height, weight and body mass index. I had an ECG done and blood pressure taken. I was surprised at my pulse rate. It’s always been high, even when I was at my fittest and doing athletics, but it averaged 93! My blood pressure was low, but then it always has been.

I was then sent to another nurse who asked me a series of questions. This was really annoying, as she had so many forms, she was asking the same questions several times. Not her fault, but she wanted me to go into every inconsequential detail. For example:

“Have you ever been a smoker?”

“Yes, when I was 16 and stupid”

“How long did you smoke for?”

“Maybe two years. I only smoked on occasion”

“How many did you smoke a day?”

“I don’t know, it was over a decade ago, some weeks I got through a small pack, other weeks I didn’t smoke at all”

“So how many”?

Now I’m thinking - for fuck sake, does it really matter? It was over 10 years ago! It’s not as if I chain smoked constantly for 2 years! I expect there are people who have more damage from passive smoking, than I had for the occasional ciggie!

And it carried on in that vein. She seemed convinced I used to be an alcoholic because I don’t drink anything anymore. Even when I said, no – it’s because if I drink anything other than water it irritates the bladder and causes pain. Then she seemed to think that if I wasn’t drinking, I must be taking illegal drugs. I said no, my prescription ones are bad enough thank you. Then she seemed surprised I was on so many pain killers, like I was some kind of junkie  – at that point she seemed to realise she was seriously pissing me off. I had come there to prepare to have my bladder removed after all, what the hell did she expect!? Normally I’m very patient, as I’ve gone through this sort of thing many times. I don’t object to the questions she asked, but I really didn’t appreciate her attitude.

So anyway, it was an hour of answering medical questions, and then I had to provide a urine sample.

As for asking questions about my op, well, she didn’t know diddly squat. She gave me a booklet on Cystectomies for cancer patients. Well, thank God I’ve already done my research, because hardly any of it applied to my situation. That made me really angry. If someone had gone in not knowing what the op entailed and read the booklet given, they would have read that they would have their bladder, womb and part of the vagina removed and this is not the case for women solely with Interstitial Cystitis. The only illuminating thing about the booklet was that some of my nerves used for sexual function may be damaged during the operation. Okay, that wouldn't be good, but in the scheme of things, that is way down on my list of priorities. It’s not as if I have a sex life to speak of anyway. With IC it's too bloody painful!

The last person I saw was the anaesthetist who was the only one that seemed clued in and acted in a professional manner. She said an operation like this would take around 8 hours. For pain relief when I wake up, I have a choice of an epidural, which is where they put a small flexible tube called a catheter (not a urinary catheter obviously) into your lower back, though which they drip local anaesthetic constantly and this numbs your pelvic region and abdomen.

The other option is spinal anaesthesia. This is slightly different to epidural anaesthesia as the drugs are injected into a different space. During a spinal, pain killers and other substances are injected directly into the spinal fluid of the spinal cord.

I want to opt for the epidural as it sounds like the most effective method to me, and I’d rather not have extra painkillers if I can avoid it, as I’m not sure what effect it would have on me after I’ve been on my prescription drugs for so long. (I’m really looking forward to not having to take any more drugs afterwards!)

The one issue I wanted to press was that I didn’t want the surgeons to remove my womb. You hear these stories of surgeons taking the wrong limb or organ and it’s made me paranoid. She made a note of it, but I would have to reiterate this when I sign the patient agreement before the op.

Finally I had some blood taken.

And that’s that! It’s made it all fractionally more real to me. I don’t think it will seem real until I’m there, I’ve spent so much time waiting for this. Only 6 weeks to go!

Sicknote

Blog 3 - Symptom overview

Update 10.07.2010

Well, I have some hospital dates at last. My pre-op is next week, and my operation is in late August. So just under two months to wait. This last week has been very bad for me so I hope the remaining weeks aren’t.

I realise I haven’t given an overview of my symptoms beforehand, that have made this operation necessary. I’m not going to give a definition of IC, there are a lot of other websites that go into that. Also, everyone is different.

In summary there are:

·         Severe pelvic pain

·         Frequency

·         Urgency

·         Nocturia

·         Urethral Stricture

·         Spasms

General Overview

I had bladder problems as a child, I’ve always had to get up during the night, and at school I was always going to the loo between every lesson. It started to worsen when I went to university 9 years ago. I was getting up 3 – 5 times a night, and forever nipping to the loo between lectures. I started to notice it was much worse if I’d been drinking alcohol and coffee (pretty much student staples at the time!). The pain started in earnest in 2004, where it went from mild to severe in a matter of months. It was then I started having problems passing urine.

In January 2005 I was visiting family, and I couldn’t pass urine at all. It was agony. My Dad drove me to A&E where they did nothing for 2 hours. A very condescending nurse said I looked better and should go home soon, despite me only passing a tiny amount and having a swollen belly; if she’s been within arm’s reach I would have punched her in the face! I was in so much pain. To my relief, nasty nurse clocked off and a very nice nurse came in, and when I asked her to catheterise me she did, and over a litre came out.  A very blood tinged litre I will add. It was the same colour as Rose wine! I was sent home after, but they expected me back in, which happened about 4 hours later and I was in hospital for a week. From this point on I have had to self catheterise.  That’s when all the “fun” started with the 3 hospital trusts I went through.

I have tried acupuncture (NHS), a chiropractor, TENS machine, DMSO, and Cystistat & Elmiron

·         The acupuncture worked for 8 weeks (one session per week), but my symptoms were deemed too severe for acupuncture to work on its own. I was lucky as it was on the NHS. I went in originally for pelvic floor muscle training with a physiotherapist. She said if anything I needed the opposite as the muscles were always tensed up.

·         I went to see a chiropractor due to a problem with my lower back. However I noticed after every session, my symptoms improved slightly for a few days. I’m guessing it’s because there is such a concentration of nerves running through there, that when one thing is corrected it was a knock on effect.

·         I bought a high spec TENS machine, and it does help a little. I found that if I put the four pads on certain points on my lower back, it lessened the pain. I don’t think it would work purely on its own, but in combination of other treatments it can take the pain down a notch.

·         DMSO was a nightmare. I only had two treatments and ended up in A&E after both of them. Although I have a friend with IC that also had DMSO and it works brilliantly for her. It’s strange that people with the same disease react differently to different treatments.

·         Cystistat was my saving grace for 18 months. I had it fortnightly, although I did have a 6 month break in the middle. Although I still suffered all the symptoms, and I’d say I averaged a 5 on the pain scale, it kept it to a point where I could carry on working. I could only keep it in for 30 minutes, and I was in agony the day of the treatment, but by the next morning I was okay.

·         Elmiron was a tablet version of Cystistat, but your body only absorbs up to 6% of the dose, so it takes several months to become effective. I took this whilst also having Cystistat instillations.

This doesn’t sound like a lot, but bearing in mind I had to wait 6 months between consultant appointments which only last about 5 minutes each, this explains the timescale.

Medication

I am currently on the following medication:

·         Amitriptyline 50mg –in this dose it targets nerve pain and chronic pain, although it’s also used as an anti-depressant in higher doses

·         Cimetidine 400mg (twice daily) – although it’s primary use is for stomach ulcers, it is helpful for IC sufferers due to its antihistamine effects

·         Gapapentin 300mg (three times daily) originally used for the treatment of epilepsy,  gabapentin is also widely used to relieve pain, especially neuropathic pain.

·         Tramadol 400mg (twice daily) – used to treat moderate to moderately severe pain

·         Solifenacin Succinate 5 mg twice daily to relieve bladder spasms.

Diagnosis

I went through many tests to be finally diagnosed with IC officially. They were:

·         1. Bladder distension under local anaesthesia– failed due to severity of pain

·         2. Cystoscopy under LA

·         3. Three bladder distensions and cystoscopies under GA

·         4. Five bladder biopsies taken during one cystoscopy

·         5. Urodynamics

6. Potassium sensitivity test - the result of which finally gave an official diagnosis of IC. 

Coping strategies

Well, I have a fiancé with the mental age of an eight year old, so he keeps me entertained, and cheers me up if I’m feeling down!

The main ones are the pain medication, TENS machine and a hot water bottle (although with some people ice or a cold flannel helps more).

Cutting out all the trigger foods, basically anything acidic. In particular: tomatoes, all fruit and spicy food.

Unfortunately, I’m sensitive to NSAIDS which are anti-inflammatories such as Ibroprofen which are such a big help to others.

Giving yourself a distraction from the pain, having a hobby. For instance I bake a lot of cakes. And eat them. I’m good at eating :-)

A hot bath (BUT NO BUBBLE BATH!) helps too.

Also having the message boards on the net and talking to others with IC. Facebook is other big one! Where I can’t get out the house it’s my window to the world!

And finally, the support of my family and friends. You can’t cope with something like this on your own.

As I say, my pre-op is in a few days so I will blog afterwards.

Blog 2 - Pre-op

20-06-2010


This week has been somewhat eventful. Despite being careful I must have caught an infection when I changed my leg bag Tuesday morning, and by Tuesday night I was in agony. I normally have a spare pack of antibiotics for occasions like these, but they weren't shifting it. Ordinary cystitis is only meant to sting when you pass urine, but when you have IC as well...I can't even describe it. I wouldn't wish it on anyone. I was considering calling an ambulance, but I knew from experience there is nothing they can do for the pain.They don't like to give out morphine at A&E for a disease they don't understand. So I held out till morning and a GP prescribed me some different ones, which after 24 hours started to make a difference.


I still haven't heard back from my consultant. Both my GP and myself wrote him a letter two weeks ago informing him of how quickly I've deteriorated in such a short space of time, and requesting my operation is moved forward. He has another two weeks to respond before my GP takes it further. In my meeting with him in March this year, he said that the wait for a cystectomy would be 8-12 weeks. However he put me on the non-urgent list which means I won't been seen until 6 months after the initial March 2010 appointment.


I have managed to get out and about this weekend. I made a special cushion out of a couple of pieces of foam for travelling in the car, to make it more comfortable. It takes the pressure of your crotch and stops the vibrations of the car causing so much discomfort / pain.


I've been wondering what I could do after my operation to raise money and awareness for some of the charities that have helped me out in recent years. I was thinking either a skydive - and I'm terrified of heights so it wouldn't be easy for me, or maybe kayaking around part of the coast. I'd have to get myself really fit for that...but then I have 3 unwanted stone I want to burn off! If anyone has any good ideas let me know.


I'm going to leave the blogs here for now until I find out a definite date for the surgery, as other than my deteriorating health, I nothing more to tell you that you don't already know. I will keep checking in with the other message boards though - girls you know who you are!


Speak soon,
Sicknote. X

Blog 1 - Pre-op

14-06-10


Hello,

Not a lot to report this week. I've been feeling pretty lousy. I'm crazy tired despite only waking up once in 7 hours last night. Can't remember the last time I've slept that long uninterrupted! Usually I only manage 3 hours.

The pain has been getting worse. I cleaned the house today but I'm shattered now. I stopped when the pain was too much and I spotted blood in my leg bag.

I'm really hoping I hear some good news from the hospital soon. I found some Cystectomy videos online last night (note to others - if you're worried and squeamish, DON'T watch them!), it looked pretty brutal. I winced a few times watching it. It's not going to put me off though. I want to know what I'm letting myself in for.

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