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.
In amongst all this I have been tested for epilepsy & have had several "blank outs" (cant remember right name) where others have been with me & recognised them as epileptic too.
My excema has broken out all over my body, some open some just very dry, red & itchy.
Add to this we have got bad money problems & had to borrow some from family & trying to sell one of our cars but not getting very good offers so far. Hoping a friend who has said he is interested will be willing to pay what we need for it to pay off most of the loan.
There is just so much going on at once that we are both real stressed no matter how much we try to relax. We have even yelled at each other which is unusual with us, but we both recognised it for what it is.
David has got a bad dose of flu too which isnt helping.
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.
In amongst all this I have been tested for epilepsy & have had several "blank outs" (cant remember right name) where others have been with me & recognised them as epileptic too.
My excema has broken out all over my body, some open some just very dry, red & itchy.
Add to this we have got bad money problems & had to borrow some from family & trying to sell one of our cars but not getting very good offers so far. Hoping a friend who has said he is interested will be willing to pay what we need for it to pay off most of the loan.
There is just so much going on at once that we are both real stressed no matter how much we try to relax. We have even yelled at each other which is unusual with us, but we both recognised it for what it is.
David has got a bad dose of flu too which isnt helping.
Sorry about the long post & thanks for reading.
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Usually I get a daily influx of emails on health topics. An article from Dr. Mercola really stood out recently though because it mentioned that fat cells have their own mitochondria. Not only was this the first I'd heard of this, he also mentioned that fat serves a purpose in our metabolism. Another new factoid for me. The bottom line for me was to appreciate that even our fat cells play a...
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I just do not feel well and I really think that it's because I cried yesterday on my way to work about my Aunt who is in the hospital. I don't think that we will have her much longer. She is very frail. Now she needs help eating. So, this is the third time in a year that I felt this way after crying. I think crying releases toxins into my body. I also worked up a sweat at the gym...
I'm just responding to send you strength and wisdom in how you handle the issues,. (:) I guess as in the story of "The wizard of OZ"---I am sending you a Cowardly Lion to prove you have courage in this & a Scacrow to prove you have the brains to best deal with this also. You already have the heart the Tin Woodman )
Can you tell I'm in a fancifull mood today?
Lynn
Dorothy meets a Scarecrow (Ray Bolger again) with no brain, a Tin Man (Jack Haley again) with no heart, and a Cowardly Lion (Bert Lahr again). The three decide to accompany Dorothy in the hope that the Wizard will also give them their desires. Along the way, they behave in ways which demonstrate that they already have the qualities they believe they lack: the Scarecrow has several good ideas, the Tin Man is kind and sympathetic, and the Lion is ready to face danger, even though he is terrified.
http://en.wikipedia.org/wiki/The_Wizard_of_Oz_%281939_film%29
Wow sounds like you're having a rough time with this. I understand where you are getting the run around. A cathater (sorry about spelling) is an invasive object that has to go into your urethra. This can cause the muscles of the bladder to be help open which will make you prone to pain if the bladder muscles that control the bladder opening decide to spasm. Long term use of a catheter can cause infections. This does not sound good for us that have MS. While it may relieve the discomfort I myself decide when and where to use a catheter.
As far as the cyscosopy. This procedure is usually done in the office. They take a jelly substance that numbs your entire urethra tube as they squirt it down. It is a local numbing agent. The camera they insert is small and it helps when they look for issues in the bladder. This makes your prone to infections as well.
The BOTOX is a bacteria that will eat at the muscles and help strengthen them.....Have you ever seen a super model on botox? It paralyzed her face for a while.
All of this sounds a little invasive if you ask me. They have bladder control medications and also natural herbs and supplements that can do this a lot better and a lot cheaper. You have the choice as a patient to allow or not allow tests. Talk it over with your loved ones.
If you will allow me a minute to surf the net I will send you some information on medications that I have seen that helps........This may allow you to discuss a better alternative with you doctor
So sorry to hear all of ths, it seems like you just keep going around and around on this and it is getting worse, rather than better, and the doctors are of not much, if any help. The best I can do is tell you some of what I have been told.
First, they will not let me use a cath. Say that I am far from that, yeah, hang out with me when i do laundry and then decide, and that some of the possible or probable causes make the cath a bad idea. There is the question of prolapsed bladder for me. It is in a mild stage, but it is there. So the postion of my bladder is such that it is farther down, the wall that is supposed to hold it up is not as stong as it used to be, and that is from a combination of standng at work all my life, holding it when i should have gone, and menopausal hormone changes, but since i had a hysterectomy, that happened early and has had time to work away at the strength of that wall. So the thing is that it would make a cath harder to use in that the area is not constructed properly anymore.
This early or mild bladder prolapse can cause the kind of leakage like when you sneeze or cough, that kind of thing, If that was all that was my problem, okay. The problem is that I also have leakage due to signal issues with MS. So now I have the muscle weakening, the lack of the support of the vaginal wall, and MS screwing up the signals. But my doctor thinks that all of this combined will put me at very high risk for infection, can't get it in as well, can't get it to the right place, wall in the wrong place, bladder in the wrong place, all of it. And the infection would not be so easy to treat, and might not show up so quick.
The reaons for thtat is that bladder infections and UTIs are much harder to detect in MS patients. And left untreated, they can spread or cause other problems. Often times MS patients are not dxd with these infections because the MS causes us to not have the same painful warnings, it is mostly urgency, and that is often attributed to the MS, so we just go around with the infection and don't know.
Prolapse of the bladder can cause the same problems as a blockage, and make a cath out of the question for me, and so I would probably go from nothing to a bag, but that is part of why she says it is a long way off. So for me, I have increasing leakage, I would say that sometimes it is more like I just pee myself rather than some leakage, and really the only option right now is pads and diaper pants. Yuck, to say the least. But dry nonetheless.
I also drink 6 ounces of real cranberry juice every day to keep away UTIs, and I have a urine test every time i go to the doctor for anything, they check for the bladder infection possibility. I also use an over-the-counter that some people say can cause silght constipation, but for me, if I am going on a long trip or something, it is very worth it, as I don't think it makes me constipated, and even that risk, well, MS does it already, so a little more to not have out of control pee would be owrth it. I don't use it every day as it will lead to constipation if you do, as well as UTIs.
That's all I got. I don't know if any of it is of use, but there it is. My thought is that if there is a blockage or infection, that is kind of important ot know. I realize that the proceedures cause you problems, but you have to know what is going on in your body. However, I think this is seperate. If you are sure that you know what you want and why you want it, you should really hammer away at your doctor. And my doctor told me that Botox is only worth anything if it is just a muscle weakness, which is different, like the bladder prolapse, and much diffferent than the effects of MS. MS scrambles the body signals and reactions.
I am sending you really good thought, this is really hard to go through I have no doubt, and i hope you get something positive happening soon.
nikki
Also, I've been using a catheter for years now. It's so second nature, I use a very thin one with no little cup thing - it's pretty streamlined and it saves me so much grief, I can hardly believe it. It empties my bladder so well, that I don't have to go again in 30 minutes anymore. That was a huge problem for me. I still wake up every two hours but I'm hard headed, I drink fluids right up until bed time.
I think you're under a lot of stress and I know that can add to a lot of things. Do you get out and walk or do something that helps clear your mind? I clear mine on the treadmill quite a bit. Things are challenging but clearing my mind helps too. The exercise helps me focus afterward.
Best of luck to you in finding relief.
I had just typed a big reply to each of you & lost it...the frustration sometimes.
I love the referral to wizard of oz, I love that movie & have the dvd.
I dont have a prolapse bladder but have had a hysterectomy over 20 years ago & one surgery for bladder before. I agree that the self catheters can cause infections esp if they go in the wrong positions etc. Thats why I got concerned when I started bleeding & got very sore there too & then bladder spasmd bad. Now I cant get the catheter in very often & then nothing drians to any extent.
I do get out a lot as I work part time, go to physio & coffee 2 times a week when I can (no dr appts) & other things with hubby too.
Thanks for explaining what the cystoscopy is too. They did say that would be under anaesthetic too dou to my complicated medical issues.
I went to a ms wellness day today, put on by the ms society here & it was very informative on a range of things. They briefly touched on the incontinence issues & said "you have choices & do not have to put up with incontinence". This hit home to me for sure. The self catheters is not going to stop my leakage, neither is the botox long term, The only way I can get the freedom of no leaks or the "oh oh too late" which happens frequently is to have the permanent catheter.
Spoke to 2 of the other ms friends there & they both said they would prefer to have a permanent catheter than have to do it themselves & still have to wear pads for leaks every day anyway. We discussed it with a couple of others & I have decided to phone the continence nurse on Tuesday (when i am home) & see what she thinks too. She had said on my last visit when she came out that the catheters obviously were not the option for me. Thats what my Dr says too.
Will definately discuss it with the other surgeon as I am hoping that while they are operating (if I have to have that) they can put a supapubic catheter in at same time as I will have some form of catheter when I come out of surgery anyway.
Thank you all so much for your responses, prayers & information too.
Any more ideas at any time will be appreciated. I have tried some medications without any luck too.
I missed the continence nurse today (on phone) so hope she is in the office tomorrow when I call.
Good luck on this, Sue. Good thoughts coming your way.
Perhaps you can ask the doc if you could have a walking foley catheter for few weeks--I'm not at all certain this will be an advantage in your goal to remain working, it might be the thing that brings that goal down.
I spoke to my continence nurse today in some depth about options. She agreed that in my circumstances self carheters are not going to work. She was surprised at the botox & said it would only be temporary so she agreed probably not worth it, esp with repeated anaesthetic.
I then went to my gp today & asked her about it. She said they will probably start with the catheter from the bladder (probably what you call the walker) with the bag, which can be attached to the leg or on the stomach too. This could be done with the other surgery as they will need to put a catheter in with major surgery. She said the suprapubic catheter it would have to be done separate but could be with the cystoscopy & make sure I speak to urologist tirst to organise that. She was also surprised at the botox idea & said she wouldnt reccomend it.
I did find out from her that she cant change/fix them if a problem but I could get district nurse or go to er for help. She agreed that it is my decision & is a matter of quality of life too. She couldnt see the point going through the botox etc & still having to wear the pads as would have to have it repeated too over time.
I now feel even more informed for my choices & the processes too.
Thanks everyone for your ideas. I will let you know what happens when I see the surgeon on Monday.
I hope that things continue to improve, in that you have a good course of action to follow, and can see some help on the way. Nothing worse than just going around and thinking that it will just never end..
Take care, and let us know.
Its just going to be a wait & see time now. See collarectal surgeon Monday & hope to know more after that,