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Sunday 25 July 2010

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.

Friday 16 July 2010

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

Saturday 10 July 2010

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 fiancĂ© 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.