Multiple Sclerosis (MS) Support Group
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Hi all,
I am peeved off today with urologists who don't listen & catheters don't work!
Went to the urologist yesterday & he didnt listen to me & what I was saying, only heard what he wanted to that at the start I could use the self catheters but then I couldn't use them as my bladder spasm & also bled & it didnt do anything in emptying. All he paid attention too is that at the start I could work them. Very frustrating.
Now he wants me to have another procedure called a cystoscopy which means another anesthetic. In the meantime he wants me to use the catheters. I tried today & couldn't get it in even so got frustrated.
Then he wants to do some other test to do with types of catheters & said that even using catheters will not stop the leakage. HELLO that's what started all my issues with bladder, leakage & no control.
I asked about the permanent catheters & he said that is a last resort & this is the plan we are going with, I said I was not happy. He said if cystoscopy doesn't show blockages they can use BOTOX on the bladder to help it. Excuse me but that's more anaesthetic & doesn't last long, have to get top ups & he wasn't sure how often. HELLO each botox means another anaesthetic & each one makes my ms go bad again.
I asked him about the supra pubic catheters as been reading about the different ones & that seems to be the better way to go with less infections to avoid that as it can cause issues too. HELLO isn't it my body & my choice???
His way I have to have a cystoscopy which will probably be under local or anaesthetic but a wait for that, then see him again - another wait, then referral for botox or other tests, takes months between all of these.
I know permanent catheter is a big step but I am so tired of not having control of my bladder (& bowels but that is being looked at) but it would mean I wouldn't have leakage & would have freedom to do things without wetting myself. Even though I wear pull up pants with pad sometimes I wonder if I smell of urine when I have leaked a lot. I am very conscious of it too.
I wanted a note in the file saying that the catheter could be put in when I have to have bladder/abdomen surgery. I have had a CT of abdo & pelvis & anal ultrasounds (gross), I couldn't even feel much though which the Dr commented on as I didnt realise probe was in till almost the last part of insertion. Am very scared of the surgery as it will be done with a big cut (the old way) so that he can clean everything out & put new webbing in. It could be hernia or it could be part of bowel in wrong area being strangulated. I saw the colorectal surgeon Monday week ago, already had the tests he ordered & see him again on 7 June. I had to wait about 7 months to see him in the first place & he said I had been wrongly prioritised & should have been on urgent list with pain I am in. He said he is looking at operating within 1-2 months. This is all in public hospital as public patient too. The last bowel surgery I had ended up being much more than expected & then when they took the stitches out my stomach popped out so had a vacuum type machine attached to tummy for 6 weeks with district nurses coming ever 2nd day to change it & check it. That was when I didnt have to call them imbetween when it blocked or popped off. Noise was like having a steam train attached to me. It was the size of a walker basket, to give you an idea.
I am now more stressed about it all. Going to contact continence nurse this week & see what she says too.
What do others think about the catheters & what I have been told?
I feel like I am on a treadmill of tests & Dr's & some aren't listening very well & they are not coordinating too. I was supposed to have a sleep test done Thursday night but cancelled it.
On Monday I had a CT with dye of abdomen & pelvis area. Took over 1 hour which was a long test. I was ok that day just tired. That night I started to get hot & by Tuesday my face, throat, neck, chest & arms were red. I was most concerned about my face as both eyes were barely open & I had blurred vision. I went to the gp & she said it looked like an allergy & only thing could think of was the CT dye.
I had the anal ultrasounds on Thursday but the trains gave me hell getting there as the power lines were down so they had busses - I was on scooter & no disabled busses available so had to wait for a taxi. Took me 3 hours to get in. Lucky for me Dr got called to surgery so they wanted to change time too. It was a different tests for sure.
No wonder I am tired from this week. I did manage to work Monday & Friday but had to go to the hospital in the middle of the day Friday so lost 2.5 hours which I have to make up.
This is all causing ms to flare up, having trouble with eyes, left arm, hand & leg all not working properly. Leg is dragging most of the time. Fatigue is through the roof & so is frustration.
Any advice or ideas esp about catheters & if I should push for what I think I want or go with urologist ideas which is months more of tests too & using catheters now that do nothing.
Sorry about the long post & thanks for reading.
I am peeved off today with urologists who don't listen & catheters don't work!
Went to the urologist yesterday & he didnt listen to me & what I was saying, only heard what he wanted to that at the start I could use the self catheters but then I couldn't use them as my bladder spasm & also bled & it didnt do anything in emptying. All he paid attention too is that at the start I could work them. Very frustrating.
Now he wants me to have another procedure called a cystoscopy which means another anesthetic. In the meantime he wants me to use the catheters. I tried today & couldn't get it in even so got frustrated.
Then he wants to do some other test to do with types of catheters & said that even using catheters will not stop the leakage. HELLO that's what started all my issues with bladder, leakage & no control.
I asked about the permanent catheters & he said that is a last resort & this is the plan we are going with, I said I was not happy. He said if cystoscopy doesn't show blockages they can use BOTOX on the bladder to help it. Excuse me but that's more anaesthetic & doesn't last long, have to get top ups & he wasn't sure how often. HELLO each botox means another anaesthetic & each one makes my ms go bad again.
I asked him about the supra pubic catheters as been reading about the different ones & that seems to be the better way to go with less infections to avoid that as it can cause issues too. HELLO isn't it my body & my choice???
His way I have to have a cystoscopy which will probably be under local or anaesthetic but a wait for that, then see him again - another wait, then referral for botox or other tests, takes months between all of these.
I know permanent catheter is a big step but I am so tired of not having control of my bladder (& bowels but that is being looked at) but it would mean I wouldn't have leakage & would have freedom to do things without wetting myself. Even though I wear pull up pants with pad sometimes I wonder if I smell of urine when I have leaked a lot. I am very conscious of it too.
I wanted a note in the file saying that the catheter could be put in when I have to have bladder/abdomen surgery. I have had a CT of abdo & pelvis & anal ultrasounds (gross), I couldn't even feel much though which the Dr commented on as I didnt realise probe was in till almost the last part of insertion. Am very scared of the surgery as it will be done with a big cut (the old way) so that he can clean everything out & put new webbing in. It could be hernia or it could be part of bowel in wrong area being strangulated. I saw the colorectal surgeon Monday week ago, already had the tests he ordered & see him again on 7 June. I had to wait about 7 months to see him in the first place & he said I had been wrongly prioritised & should have been on urgent list with pain I am in. He said he is looking at operating within 1-2 months. This is all in public hospital as public patient too. The last bowel surgery I had ended up being much more than expected & then when they took the stitches out my stomach popped out so had a vacuum type machine attached to tummy for 6 weeks with district nurses coming ever 2nd day to change it & check it. That was when I didnt have to call them imbetween when it blocked or popped off. Noise was like having a steam train attached to me. It was the size of a walker basket, to give you an idea.
I am now more stressed about it all. Going to contact continence nurse this week & see what she says too.
What do others think about the catheters & what I have been told?
I feel like I am on a treadmill of tests & Dr's & some aren't listening very well & they are not coordinating too. I was supposed to have a sleep test done Thursday night but cancelled it.
On Monday I had a CT with dye of abdomen & pelvis area. Took over 1 hour which was a long test. I was ok that day just tired. That night I started to get hot & by Tuesday my face, throat, neck, chest & arms were red. I was most concerned about my face as both eyes were barely open & I had blurred vision. I went to the gp & she said it looked like an allergy & only thing could think of was the CT dye.
I had the anal ultrasounds on Thursday but the trains gave me hell getting there as the power lines were down so they had busses - I was on scooter & no disabled busses available so had to wait for a taxi. Took me 3 hours to get in. Lucky for me Dr got called to surgery so they wanted to change time too. It was a different tests for sure.
No wonder I am tired from this week. I did manage to work Monday & Friday but had to go to the hospital in the middle of the day Friday so lost 2.5 hours which I have to make up.
This is all causing ms to flare up, having trouble with eyes, left arm, hand & leg all not working properly. Leg is dragging most of the time. Fatigue is through the roof & so is frustration.
Any advice or ideas esp about catheters & if I should push for what I think I want or go with urologist ideas which is months more of tests too & using catheters now that do nothing.
Sorry about the long post & thanks for reading.
The doc has the power of the perscription pad & I have the power to say yes or no...........and replace him-her with someone else.
Since I'm on Medicare, replacement is not so easy but I did do it once successfully. And I'm glad I did it then-I'm not at all looking forward to having to do it again any time soon.
In an appointment with tthge neuro I was trying to explain how much she benefits from everyt\hing I learn on the internet although it must be very frustrating having to deakl with internet gossip-out of the blue I said...
"I will never blame you. Everything I do is because I wanted to and anythng I don't want to do I don't do"
Without stating the first part about alkl the internet rumours she deals with. She must have thought I was crazy to say that out of the blue?
She quickly reassured me that no one would force me tio do anything I didn't want to.
Which was confusing because I had just told her I don't do anything I don't want to? Why would she repeat it, I just told her she doesn't have a choice in anything I don't want to do...It was most confusing.
Then when I got home I realized I forgot to say the internet part which was my way of thanking her for her patience in explaining things I don't understand. I geuss my Thank you didn't come out as a thank you, it ended up comming out a little more milatantly.
JMO-the doc has the power of the "Perscription Pad" you have the power to say yes or no and the power to replace him.
You can't make him do anything just as he can't make you do anything also. Personal comfort ends up being the deal breaker causing on or the other to back down-and the doc doesn't have discomfort but it ia uncomfortable watching someone elses discomfort when a persons knows they can help. Its a game of chicken, who backs down first. They have watch a great deal of discomfort,, so they have a high threshold which is bothersome.