Whiling away the hours

I am an Englishman currently living in Eastern Europe with a bit of health cover. Even at my age who would of considered severe bladder problems ending up an issue of concern. I have a shrunken bladder whos exterior walls are thickened and in a poor state. I have been into hospital here and had a CT scan, an endoscopy and a blockage removed from the urethra leaving me with a catheter tube with a tap on the end. They were unable to do anymore as their level of expertise wasnt sufficent, so I am at home now trying to raise finance and momentum to go to a bigger hospital.

My pain comes in three levels:- Level 3 - On a par with toothache but in the groin. The least painful but probably the worst as it is consistent 24 hours per day. No OTC meds can touch it. Level 2 - Full or over full bladder on awakening, strong desire to urinate but can not or leaking urine around the catheter tube. Level 1 - My worst pain. The bladder contracting when emptying. Want a similar experience, attach electrodes to your groin area, turn power onto full and try urinating.

Medication. I currently have a table fiull of OTC pain killing meds issued by a variety of doctors. None of them work unfortunately, not to any degree. I have one empty box of Tramadol. This gets rid of level 3 pain and some of level 2. Unfortunately, idiot as I am, I was having to up the dose very quickly, within a week, so I looked on the internet to see what a correct dose would be. After reading many tales of woe about the drug, addiction & withdrawal etc I mentioned it to a Doctor when I ran out. He said dont worry and prescribd me something called Novalgin, no problems with this. The problem is, Doctor, is that it does not work. I am also taking Inkontan, I feel worse on it and an antibiotic and diuretic.

Sleep deprivation. Due to the pain and the very low urine capacity in the bladder I cant sleep for more than an hour at a time. Often much less and no more than 2 hours per day. I am concerned about my emotional state of mind. Last night I cried a lot, not even sure what for now. I know it is weak but I dont know how much longer I can take it. I would give everything or anything for a shower and 8 hours sleep. The simple pleasures I once took for granted and if I read this now I still would, what an idiot.

Thank you for replying to my post. I wrote it with a view of spending a few hours of my night writing what i felt off my chest in a kind of hopefully therapeutic way. Also to use up the time as well. I was not really expecting a reply but probably would of been unhappy not to. I dont expect a specific response as I really did not ask any questions as such I found your reply very up lifting and I thank you again for taking the time to respond.
Hi Kathy my name is Lawrence. The two meds I mentioned were Inkontan which is supposed to stop you urinating so often. hmmmmmmmmm. Looking on the internet, Novalgin is an anti inflammatory, like ibroprofen, but has a small chance of reducing thw white blood cell count so its banned in a few countries.

I wish you all the very best for your future

Take care

Lawrence

Hi Lawrence~

And welcome to the CP forum. I'm glad you decided to join us. It can be very reassuring talking to people who know exactly how you feel and can share their experiences with you and you with them. It's often the best 'medicine' we get.

It's a good thing your doctor is working with you on the medications. So many doctors in the States are ready to accuse and assume a patient of drug seeking that often people don't get a chance at pain medications. Please do be careful taking OTC medications. It's so easy to assume they are harmless and/or take more than suggested. Many of the analgesics were prescription medication at one time. So taking OTC pain medications and especially taking multiple types at one time can be very dangerous. People have died from doing just that.
Please share this with your doctor and hopefully he can get you on a regime that will control your pain.

One other thing...have you discussed depression with your doctor? If so please disregard my mention of it. But more often than not, people who live with chronic pain also suffer from clinical depression. Treating the depression can often help with sleep and surely the tears. That's one way I know my antidepressant isn't working at the current does...I am crying several times a day. That's when I share with my doctor how I'm feeling and he then decides what to do with the dosing or if it's time to try a different medication. Please do stay on top of the emotional side of chronic pain. We all have to deal with it.

Warm hugs,
Chutz

Thanks for all the replies. It seems like a very long time ago since I wrote the first post. Since that time I have been on tramadol which is a weird drug. I think I feel a similar level of pain but no longer care, plus I do sleep now, which is nice.

I was offered the opportunity to go into hospital here. They were going to take other bits of other body parts, mine, and make a new bladder. Not sure I fancied that idea and anyway the time it would take my health cover would of been long finished.

So England here I come. Not as straightforward as some people here think it might be but not much choice as yet.

I do have a few medical problems that might make the trip more difficult.

1) cant ever be too far from a toilet
2) I need cushions to sit on
3) I am suffering from uinary urgency at the moment. Nothing to do with how much urine thats in the bladder but the feeling is very strong. This always makes me think that I will be doing a Gerard Depardieu when I am on the plane.
4) I have a catheter with a tap on the end. Recently the tap has been falling off. This could be very embarrasing if it happens while I am on public transport. I am thnking of ways to make sure it will never come off. A jubilee clip, like on car radiators etc., might work if I can get my hands on one.

Thanks for any suggestions