So here it is. 2005 December 11 3:01
Posted by diamond in : Random , trackbackI have a condition called Interstitial Cystitis. This means that my bladder wall is inflamed and hyper-sensitive. I’ve had it for 4 years, though didn’t realise there was a problem till 2 years ago, and was diagnosed about a year ago. Some of ye know this, most probably are just aware of something much vaguer. I’ve always been rather reluctant to give details, but at this stage i just don’t care any more, so i thought i’d just get it over with and write it here.
This has affected my life in a number of ways. At it’s most basic, it means i have to go to the bathroom much more frequently than normal. An average person will go about 5-6 times in a day, i’ll usually be double that, sometimes up to 5 times that amount. During the day, this is annoying, but dealable with, with some planning. At night, however, it’s frequently a nightmare.
The current sleeping situation is this: i go to the bathroom, and then to bed. If i’m not asleep within 15 minutes, i have to give up and start again. On a good night, i might get to sleep after about half an hour. Usually, it’s closer to an hour. On a (frequent) bad night, it can be 3, 4 hours, sometimes even as much as 6. On those nights, it basically continues until i’m so exhausted i just pass out. If i’m stressed, it’s much worse. If i’m tired, it’s much worse. Can you say ‘vicious circle’?
So, you might be asking yourself what can modern medicine do to cure me? The answer is: nothing. The cause of IC: unknown. Cure for IC: unknown. You might see a pattern here. In fact, until the last decade or so, it was one of those lucky ailments that was discredited by doctors with “it’s all in your head”. Thankfully i had the good sense to wait until that changed. Treatment is limited to combating the symptoms, with varying success with different people.
I was in hospital for 5 day just over 4 years ago. It started out as a kidney infection, then a prostate infection, and then the whole thing went south very rapidly. At the time, they had me on insane amounts of painkillers and antibiotics (i have 2 points of datum for that: a) when i arrived in casualty they gave me 2 injections of morphine-strength analgesics, my head was floating away, and i was still in complete agony. b) after discharge, i went home to mullingar for a month to recover, and my gp told me that i had been prescribed more painkillers than she had ever seen).
The large amounts of medication at the time had a severe effect on me. My brain was completely fried from the zydol (*shakes angry fist at said horrible stuff*). I could stay awake for about 15mins at a time, could barely form sentences, memory was one big cotton ball of fluff. The antibiotics had many lovely effects too, including nausea (yay for dict and spelling ,-). I also noticed at the time that i had to go to the bathroom frequently, but put it down to being one of the many side effects i was having at the time. After a while, some of the side effects faded away, and i forgot about them as they merged into daily life. As such, it was another 2 years before i realised that this whole non-sleeping thing was becoming a real problem (see, there was a point to all this. honest.).
So, went to my gp, got referred to the urologist who had seen me in hospital. He had a chat, gave me a chart to fill out, told me to come back in 6 months. Came back, we had a chat, he gave me a chart, and came back in another 6 months. At this stage he had enough data to be able to a) diagnose me with IC, and b) tell me it was getting worse (which i had figured out at this stage). Yay for progress. By this stage, i was getting desperate. The month before i saw him, i had gotten 2 good nights sleep in a 3 week period. I’d tried herbal sleeping tablets, i’d even gotten my gp to prescribe regular sleeping tablets, but neither were effective.
Then he gave me the good news. He told me that he could put me on medication to help me sleep, and reduce the frequency at night (yay. i get to sleep, don’t spend all my days sleep deprived and zombie-like), but that the side-effects might be drowsiness during the day (yay… or not). So, we decided it was worth trying, so i started on 25mg of amitriptyline 1 hour before bed. Amitriptyline (apparently) is a tri-cyclic antidepressant. As i understand it, i’m on it for it’s sedative and nerve-blocking side-effects. Speaking of, have a look at the listed side-effects on that link. It’s enough to really really scare you.
At first, it knocked me straight out at night, with minimal drowsiness the next day (after the first hellish day when i thought that life on this was going to be completely disabling). After a couple of weeks, my body adjusted, and it’s effectiveness lessened, so i upped the dose to 50mg as advised. At this stage i also took a month off work as i needed time to adjust, and i was getting majorly stressed about being unproductive at work. For a while, things were good. I’d say the next 3-4 months i was sleeping pretty regularly. Not perfect, but at least frequently enough that i could cope.
It didn’t last. At the start i’d be waking maybe 1-2 times during the night to go to the bathroom, down from 5-6 (normal. many many more on bad nights) before going on medication. By the time i saw the consultant again in november, it was back up to 4-5 times a night. Not good. You might think that waking 5-6 times during the night isn’t that big a deal, and on it’s own, it probably wouldn’t be too bad. Unfortunately, before i actually wake up, i probably spend an hour or two in very light sleep or half sleep. I’d get 10 hours in bed, but wake up feeling like i’d only slept for maybe 4-5. And that piles up very quickly if you don’t get a chance to recooperate.
So. The consultant decided we’d try upping the dose to 75mg, an hour before bed. That’s where the last month disappeared. I’ll list the side-effects i’ve noticed: blurry vision, dry mouth, heart palpitations, drowsiness, insomnia, dizziness, confusion, mania. Happy stuff. I consulted with my gp, she said to give it a month to see how my body adjusts to it. That month ends on the 15th, another 5 days to go. As it stands, i really don’t see it happening. As such, i’ll almost certainly be going back to 50mg, which isn’t enough.
The condition is getting worse. And rapidly. I was off the medication for 3 days between prescriptions and it was hell. At this stage i’m completely dependant on it. And it’s not enough. And i’m not coping very well with all this. When i was at the consultant, he asked how i’d been. I told him about the nervous breakdown, he asked had i seen anyone about that. I replied no, and had the stunningly obvious idea that it might be a good idea if i did. I asked his opinion, he highly recommended it.
I had my first session with a psychotherapist last week. I gave her all the background, and explained why i was there. I need help dealing with having this condition, and i need help dealing with the stress i put myself under because i’m not productive enough in work. She has suggested that we do 8 sessions, one per week, and then review. I’m a bit nervous about this, but i have some hope it’ll help.
In general, when i look into the future, i see this getting worse, and no way out. If i say this causes me to be depressed sometimes, i don’t think any of ye are going to be surprised. When things get really bad sleep-wise, and i spend every day extremely sleep-deprived, unable to concentrate enough to work, or even do the things i enjoy in my spare time, i begin to question the point of life.
My gp, and the therapist, asked me had i ever considered suicide, to which i replied yes. I haven’t been hung up on the idea, and haven’t considered it seriously, but there have been at least 2 points when it’s seemed like it would just be better to end it all (yes, i know now, at this moment, that that’s stupid. but the whole issue is that when i’m in these situations i can’t think clearly). In response, my therapist made me write the following on a piece of paper and sign it for her:
“I promise that if i feel suicidal i will talk to/ring one of the following people: Diane, Maeve, Dan, Niall, my Dad.”
The above is not a definitive list btw, as far as i’m concerned.
You may wonder why i’m writing any/all of this. To be honest, i probably couldn’t tell you for sure. As i said earlier to niall, i’m sick of just alluding to crap. I just want to say it, say it all, and be done with it. Mostly, i just need to write this for me, for my sanity. This is it. This is what most/all of my life revolves around. This is me. Do with it as you will.
Steve
Comments»
*hug*
Steve, add me to your phone list.
Add me to that phone list as well.
The love and hugs. *also shakes fist at zydol*
Thanks for sharing though xx
Man can’t say I understand what you’re going through (because unless you go through something like this I don’t think you ever can) but if you ever need to chat I’m there for you. Hang in there and take it as it comes.
add me as well to the phone list…am open to talk anytime
I’m glad I was first on the list, älskade. I hope you know that I would drop anything and everything in an instant to be there if you needed me. That’s never going to change in this life.
hey there Steve,
Reading your plight via Planet Evil.
For me finding the right counsellor
was like trying to find the right medication
that would help. It may take a while,
I went through three or four medicines
before I found the right one and I went
through three counsellors before I found
the one best suited for me. You seem very
lucky in having lots of friends who love you.
Out of my ignorance, would a colostomy bag
or equivalent be any help to you?
best of luck to you
Oi, you can’t be having all those people on the list without me there too!
Count me in also, and apologies for losing touch over the last year and a half since I moved out.
Having been there for the first part of the story I had no idea it was still ongoing, so to speak, and am sad to find out it is. Hang in there.
Put me on the phone list.
Know i’m 5 months late in reading this - hope you feeling and getting better/coping .. and add me to that list also!
Hi there, I came across this post searching for some IC related info on google. There are many other treatments for IC apart from amitryptyline. Although the condition cannot be cured it can be managed and many patients achieve remmission. It is very difficult to get help from the NHS however. You may want to look at
www.cobfoundation.com for UK based support grooups and treatments or search for the IC Network in the US. Many sufferers find their symptoms are significangtly improved with diet. Treatments available in the UK include cystistat, hydroxyzine, cimetidine and elmiron (on named patient basis). Please don’t give up - there are many people who live perfectly normal, almost symptom free lives with IC, but you may need to fight your GP/urologist to get the right treatment
best
Milena
Hello there, I have just had a second diagnosis of I.C. The first was after suffering for 9 years and living in Greece, therapy was Cystistat, which helped when I had it every week, but didn’t when I had it every month. Have had a second diagnosis in England and the therapy I’m told is the same. I am going to try it weekly for 6 weeks and them every 3 weeks for a couple of months and try and see how often helps. It’s really hard for others to understand what we are going through, as it’s not something that is obvious. Making a diary of what you eat, and staying positive help, as does tapping, EFT see emofree.com.
Hello Steve,
Reading your words made me get out of my little box and for once go yes that is exactly how I feel!
Thank you for putting into words what I and I am sure alot of other fellow IC persons in the world are feeling.
I had the same cocktail of get them out of my surgery type drugs thrown at me in the beginning….. well the first 4 months when you think (no one can live in this pain and give me a tablet to make this better NOW) I had the side effects you describe and feelings of no way out.
I then found a tablet which really helps with the frequency…. check out with your doctor if Detrusitol xl 4mg would be suitable for you along with the Ami-Ami stoned everynight. 50mg seems to work but you need to be on it for about four weeks before it works. I took it for three days and went around crying it made me feel worse not better for those first few days after a week it started to even off and after a month I would forget that I had IC.
Keep me updated if you find anyother way of dealing with this without becoming a prescribed drug addict……
Good luck with the psychotherapist and hopefully you will be feeling the benefits of it…..
Also dont know why I am writing this but here goes….
Joan
I know what your going through i am in pain all the time and it is really starting to get me down i dont have anyone to speak to about this condition no one understands give me a email if you want a natterx
I know how you feel too. I’m on gabapentin and the Gp has prescribed me the max dose - it doesn’t help. At first I was elated because it made such a difference and I didn’t get the constant pain, but like you say, your body adjusts to it. My hubbie was prescribed dihydrocodeine for a knee injury and i sometimes pop one of them when I get really desperate but the side effects are awful - fuzzy head, memory loss, lack of concentration and terrible constipation. I have often been sick after a meal because the dihydrocodeine seems to freeze my intestines and the food can’t get digested. I feel like I’m between a rock and a hard place. Like you I often ask myself what is the point of it all? I hate the word ‘depression’ as I’ve always associated it with weakness though I know that’s wrong. But I am utterly depressed myself with this. It affects every aspect of your life, even your daydreams. I am very into travel and exploration but every time I contemplate getting off to do something - even just a walk - I am faced with my disability - I can’t do this or that because there will be nowhere to sqwat. Even worse, if I do brave it for a walk the pelvic pain because irritated with the motion of walking and makes it worse, and therefore walking just isn’t pleasant. I must say this is very liberating to put this down in words. It’s made me feel better. I would love to speak to anyone who has this illness. A problem shared is a problem halved.
hiya steve. I was having pretty horrible symptoms like you i was going to toilet every ten to fitteen minutes during the night and this could last for five to six hours at a time. I am a district nurse so you can imagine how tired i was trying to drive around and stay alert. My consultant was trying to ply me with amitryptilline but i refused. In fact she as good as told me it was all in my head despite abominable results from my urodynamics which i might add was the only investigations she performed despite blood in my urine. eventually i contacted bupa and changed my consultant. i saw him three days later and was in hospital the next day where we discovered my bladder had shrunk and would only hold 90mls. so much for it all being in my head. my life was turned upside down as was yours everything had to be planned around toilets. in april last year i underwent major surgery in the form of a cystoplasty which unfortunately did not work. so this year i was referred to a professor in sheffield, 80 miles away from my home. Five weeks ago i had a cystectomy, all my adhesions fron last year were repaired and i had another bowel resection and my consultant then built me yet another bladder from my bowel. he left just a thin sliver of my original bladder where the nerves are situated to give me some normal sensation. it has been a hard few weeks but i am just about feeling like myself again. i am still slow when i walk but hey i can cope with this for a few weeks. It may be worth your while to seek further advice as this surgery may be the answer for you. the consultant who has just performed my surgery is renowned world wide and is always jetting off to other countries to lecture. He handles awkward cases like mine and works tirelessly. He leaves nothing to chance and i felt completely safe in his hands. i was in hospital in sheffield for two weeks. if you want to contact me please do. shirley.