Sjogrens World Forums

Today I had another cystascope after an ultra sound showed another tumor in my bladder and kidney blockage.  The nurse told me that my urine test results were gross not to mention what it actually looked like. It turns out the there is no tumor, but there is an old bloodclot and a raging infection.  I new I was in trouble when the Novocain jell that's used to numb you before insertion of the cystascope, felt like a red hot poker, entering the urinary tract.

When the scope would not fit and the doctor said that they would have to dialate the penis, thoughts of the Spanish Inquisition came to mind and as it turned out, I was not too far off the mark, it was worse.  I hope no new patients were in the waiting room, if there was, I am sure they left in fear, as they heard my moans and a few expletives.

Without going into gory details or boring you, what they pulled out of my bladder reminded me of Linda Blair's famous regurgitation scene in The Exorcist and I even think my head turned 360 degrees at one point.  The doctor said in all of his years of practice he had never seen anything like this.

Now for the good news, no cancer and when the result of my urine culture come back, they will be able to prescribe a better antibiotic more specific to my infection.  The bad news, I have to go back through the whole thing again in 4 weeks and may have to have a stint installed to keep the use of my right kidney. 

I can see that 2009 is going to be a fabulous year, not.

Oh Epson, that sounds horrific!  I cannot begin to imagine the pain that you experienced today as they did the procedure.  Perhaps next time they'll give you some meds to take at home (Percocet or Valium come to mind) to help with the pain prior to undergoing the red hot poker.  I'm hoping that the pain was because of the extensive infection and that the next time you go in it won't be as painful as the infection will have been erradicated by what they did today and the antibiotics that I'm hoping they gave you.

I am very thankful to hear that it's not cancer, but anguished that you experienced some much pain today.  Please keep us posted on how you're doing.

Lana

Hi Epson:

Sorry to hear about this awful procedure; you can't be the only person that finds this beyond painful.  They give people twilight sedation for colonoscopies, why not this?  BonusMom is right; drugs is good.  Demand that you are helped with pain for the next one, there is no reason to make you suffer like that. Expect the Spanish Inquisition!

I'm very glad that there was no cancer found.

Best,
Sheila

Hi Epson, I had a feeling it wouldn't be a reappearance of cancer after such a short period of time, but next time, demand to be put under general anesthetic...please! If you have medical insurance, you can get it done this way. Pain like that just makes everything go into spasm  :( If they're installing a stent I'd imagine that you'd have a 'General A' anyway.

I had a hysteroscopy a few years ago, where they numb the cervical canal and insert a long, thin scope to take a scraping from the uterus...well it didn't hurt until just after the scraping and then WOW, such cramping spasmic pain I'd never experienced in my life (and I've had 2 children). I told him next time I'm having a 'General A' which I did last year. I'm sure many women have this proceedure without too much trouble but having autoimmune disease, makes the whole thing worse.

Take care and gobble down lots of painkillers, while you wait for the antibiotics,
Lesley (NZ)

Well I am glad to hear of the underlining good news of no cancer.  Hopefully that can pinpoint the exact bacteria and this nasty infection can be cleared up.  This test is uncomfortable enough without horrific pain due to an infection.   Let your doctor know you will gladly bring along a driver so that he can give you the twilight sleep for the next procedure.  

Keeping you in my prayers for a good outcome to this problem.  Take care.

We're glad you don't have cancer and hope things get better for you.  You do have a way with a story! ;D
Lucy

So glad to hear that there is no more cancer...but so sorry to hear what you went through today! I cant even imagine why they didn't give you some sort of painkiller or light anesthesia. Please take care.....I hope you get this infection under control and soon! Let us know how you are doing!

Happy to hear there is no cancer, but sorry you had to go through such a horrific procedure. 

Please ask for more sedation when they do they next one, or tell them if they don't you will scream the house down.  That usually works for a lot of people.  :o

Take care and I hope those antibiotics work quickly.

Pooh

Epson

The no cancer news is brilliant - thank God for that, eh!

I'm with the others about drugs. Ask for them, no demand them, before they do any more testing. Hopefully, once the infection clears up, it will be so much easier to get the scope in.

Hang in there.

Kathyx

Hi Epson,

So glad to hear that it isn't cancer, but I sure feel for you after all the crap that you've had to endure so far.  Sending you



my friend.

Please take care -

Patze

Oh Epson - ouch!

I guess that's the nearest you'll ever get to giving birth!  It sounds horrific. As they are going to put you through it again - can't they sedate you or something? Don't suppose they'd consider an epidural?

I'm really glad its not cancer though. I hope they get the infection under control and that you can start healing! That would make some of 2009 OK. It's certainly had a lousy start!

Take care - Scottie  :)

Hi Epson:

As everyone says, next time refuse to have the procedure done without major drugs in your system. No one should have to go through that much pain when it can be alleviated.

Take care; hopefully things can only go up from here.

Genko

Epson,

I am so sorry that you have to go through all this.  I know how you feel to just want a break from it all.  I'm still hoping that will happen for you.  They have to be able to do this under some type of anesthesia.  Surely, they would not want to put you through this again.

Anna

Wow Epson - what a horrible day you've had!  I wish I'd filmed my facial expressions as I read your description of the ... they put up your ... and the ... they pulled out of your ... I squirmed, I grimaced, my legs crossed back and forth.  I thank God every day that I'm a woman but today I'm giving extra thanks.

Seriously, dear Epson I am so delighted that it's not a return of cancer.  But to go through such pain and agony when you're feeling debilitated anyway - it just seems so wrong.  A GA or even just some intravenous Valium would help.  You cannot be expected to go through anything like that ever again. 

Chana x

ps did you discover whether the scope was made in Canada?

I may have spoken too soon, now I have to go for another procedure at the hospital next week, which will include a biopsy of an area that looks suspicious (code word for cancer) and a better look at the ureters and kidneys, I'm still bleeding from what they did yesterday.

Oi Vey, I can't believe this is happening, I must have been been a very, very bad person in my last life, like a Hitler or something to deserve this.  If they find something that means I will have to have another procedure, I'm not sure how much more I take down there! :'(

Oh gosh Epson, it must seem never ending. I am so hoping this goes well for you. What you went through yesterday was horrible. I'm with the others, I vote for drugs whenever possible for all of your procedures.

I'll keep you in my prayers. I had started to think that 2009 couldn't be any worse than 2008 but I think the verdict is still out. Good luck. Let us know how you are doing. Hopefully they will get the word on the right antibiotics soon so you can get started.

quiger

Ouch, Ouch, Ouch, Epson.

I can only imagine what it's like for a guy, and especially a guy with a raging infection.  I've had that, "Oh, the opening isn't big enough, let's make it bigger" experience myself and it wasn't fun at all.  I was sedated the first time it was done, and it felt just as bad with sedation as it did without.

I'm so sorry to hear that, after one day of thinking you were in the clear, they're checking out suspicious areas again.  I highly doubt you were a very bad person in a past life - you're much too funny in this life.  In your next life?  Be a urologist who  only treats doctors and make sure they feel your pain!

Hang in there, Tracy

Epson - I agree with everything everyone else has posted.

Hang in there - maybe it's just some scar tissue. 

Bucky

Poor Epson!  I am so sorry for what you have been through.  I am glad it is not cancer though!  Take Care!

Vicky

Monday was the day of physical torture, now comes the mental torture, wait until a week from Friday for the procedure ( should be healed by then) which means the whole weekend will pass before I know anything. ???

I guess that will give me time to shop for some Manzie Pads or maybe they are secretly turning me into a women, or I am being probed my aliens from another planet :D

At least I wont be awake for the next round of torture and I have a whole bottle of Percs ;D

   Bless you Epsom, 
             despite all these horrendous trials you are having, your lovely sense of humour shines through it all.
                your threads always make me smile, but reading about this recent procedure I must admit to a lot of wincing!!
                            Keep strong, and wish you very good luck.  Cheers Dolly
         
   

Oh Gees Epson, your suffering brings back memories of my poor old dad, he endured the same. Blood clots! >:( Darn the bladder what a tempermental little sac  >:( ...doesn't matter if you are male or female...I had some wierd thing going on all through 2008 too where I was getting a bladder infection about every 1-1/2 to 2 months, 9 in all got so I just wanted to pretend they weren't real... :D that decision went well..... just watch what can happen when you ignore them.
So glad to hear the "mass" (another code word) was not cancerous...have they spoke to you about "TB" (BCG Virus) treatments for the bladder?
Try not to dwell on the outcome of the tests over the weekend, I have been dealing with cancer in one way or another since 2003 and if there is one thing I have learned, a person, (namely me) can sure put themsleves through allot of unnecessary torture for nothing when it comes to cancer by allowing the mind to take over and think the worst, then all the good times get used up in misery anyway and for nothing. Take good care and laugh everyday regardless.....will be pulling for you, Sandra

Epson:

You are one tough guy to endure all that and still keep your sense of humor.

I hope the antibiotics are making your kidneys feel better and they find nothing new in the next go-around.

Sue

I have discussed BCG treatment with the doctor, but we have to get everything else under control and find out what is happening to the right kidney before it loses function.  This whole episode has made me forget about every other ailment and pain in my body.

Sjogren's doesn't seem to be that bad now that I have something eating away at my insides and the word Cancer, very powerful,
shuts people up and stops them in their tracks.  Although I did get a, you don't look sick, today.

Sure hope you have better days coming Epson. 

Pooh

Hi Epson, I know what you mean...when it's something far worse than Sjogrens, Sjogrens doesn't get a look in. Sometimes we get so wrapped up in the Sjs thing that we forget that other ordinary and not so ordinary things can happen to us as well  :-\ I guess this can make us hyper-vigilant which is good as we can't leave anything to chance  >:(

I hope you have a not too bad weekend and hope those antibiotics have arrived for you. Keep talking to us.

Cheers Lesley (New Zealand)

Well, they always say, when given lemons, make lemon aid and with my bladder problems, believe me, I have to make a lot of lemon aid, so why not write a book on the Cleveland Metro areas cleanest bathroom?

That would at least keep me busy for a couple of weeks ;D

Epson-

A guide to the cleanest bathrooms in any Metro area is sure to be a big hit among us "overactive bladder" types.  Put me down for one copy!

Keep your sense of humor and know we're all here pulling for you,
Tracy

Epson, so sorry for your horrible experience.  Gosh, I cringe just thinking of it.  I had a test done several years ago to find out why I have blood in my urine all the time and it wasn't supposed to hurt.  I've never had a child, but I cannot imaging childbirth hurting worse than that.  Since no one else has asked this question, I'm going to.  How are you peeing?  Does it hurt like H***?  I know when I've had UTIs in the past it was like peeing battery acid, I was afraid to go, and yes, dammit, I cried like a baby. :D  You've got to be feeling much worse than that. 

Ctrtersa,

Yes, battery acid, that is exactly how I describe it to the doctor, but the night crawler sized blood-clot was no walk in the park.

I got my Manzie pads ready for January 30th, let the pain and blood begin :'(

Egads Epson, sorry you have more pain and anguish coming up.  Hang in there.  Sorry I haven't been around lately to cheer you on, but.........................................well you know Sjogren's. :(

Take care and please keep us updated on how you are doing with this latest.

Pooh

Epson I pray better days ahead for you.   No more earth worm deliveries.
kimbo

Epsom,

i am glad to hear you do not have cancer again, but I am horrified by what you had to endure during to procedure to make that determination. Next time demand to be put under, there is no reason anyone should have to endure that much pain. Hope the year will only get better for you.

Collie

epson that just barbaric!! Look the docs striahg tin the ey and ask if theyd be put through that ?? glare into them !! and when they llok at their feet say i thought bloody not !! I in all my years in nursing would never have asked anyone to put up with anything i wouldnt have, i have fought with every doctor i ever dealt with except the ones like me. i have stood up to mamagement  i was told i was the patient advocate and 20 years ago i took that to heart and still do, ive fought for anti depressants, ive told social work to get their fingers out, i was never going to get proper promotion even though without sounding big headed im a *** good nurse!! Stand yer ground , ive been argueing for 6 months and seems i ll be argueing all my life with them, but the squeekiest wheel gets the most oil out the system, its a sad fact, so not happy to read this, your one of the ppl whose humour here i have  the last week being so uplifted by, please shout up i need your sense of humour , we all do, tell them you ll ahppily do it without a lgeneral anaestheitc if theyd say conscience clear theyd put their wife/husband through it , bloody cheek!

you open yer mouth and let your gob ( mouth )rattle

T x

Mc Haggis,

Trust me when I tell you,  I have no problem pissing off doctors, but when they have a stainless steel rod up my penis, they win every time! :'(

epson :(:(:(

terrible :(

Ooooooooooooooooh! That is definitely a mental picture I can do without!   :o   Sitting here with legs tight crossed!!  :-[

Take care - Scottie

I can't wait for Friday to come and go!  I talked to the doctor yesterday and he said he would be putting the stint in tomorrow, if all goes as planned.  Just don't know if he is going in from the bottom or the top to put in the stint.

You're being tortured by anticipation alone. I wish they could make it considerably easier on you. Stress is no good!  >:(

If could stop watching Dr. G medical Examiner, Mystery Diagnosis, ER Drama and every other medical program on cable, I would stop thinking about it.

I am not nervous, just fed up with this dirty little bladder.  When it was working I guess I just took it for granted, kinda like a wife :P   Yeah, my wife is like a bladder.

I'm crossing my fingers ahead of time that everything goes OK. I'm going into surgery myself on Thursday, so I'll be pretty out of it for a while. If I don't check in here I hope someone on these boards will PM me to let me know how you are doing.

Genko

Genko,

Good luck with your procedure on Thursday!

Epson, Just a note about the need for a stent. My MIL had to have one and it was interesting. They put it in in the office with me sitting in with her. Went quickly I must say. Also, the doc drew a picture of the kidneys and the ureters and how they attach to the bladder.

It seems that as we age we get shorter and that causes the ureter to get a kink in it and not drain well which can eventually destroy a kidney. The stent straightens things out and helps the kidney to drain. My MIL ended up having some kidney surgery as she had some other problem but she got along well and she was in her 70's when she had it done.

Also, interesting about the blood clot. My hubby just had a stone in his bladder blasted and it seems the doc wonders if the stone had been formed from a blood clot that occurred when he had his prostate "microwave" as I call it. He said it was a very weird stone.

Also, I can relate to "garden hose" effect. Years ago when I was having trigonitis or a bladder problem that required treatment every day for a week they would put a metal sound up my urethra. Now mind you, most people have a size 14-18 catheter when urine is drained from the bladder. The larger the number the larger the diameter. I had to have my urethra stretched and medication inserted. On the last day of treatment I heard them say "size 32" and I could havae screamed. Literally tissue tearing cause they were breaking up scar tissue in the urethra. I went home and told hubby never again would I do that as at this rate I will be peeing in my pants all the time by the time I am 45 years old. And I haven't had it done again.

Sooo, my friend, be aware that so far things have been the pits for you but so far cancer has not been verified. Like was mentioned, it could be scar tissue or heavens knows what. Could even be another small blood clot hiding in the tissue of the bladder. I will most certainly keep you in my prayers for patience and good pain coverage from the perc. Hope you are having your wife drive. Please keep us updated on this. Irish ;D