Back to the Urologist Today 10/30/09

[Glenda2]

I have to go back to the Urologist this morning and have a Consultation with him on Alternative Medication since the Elmiron and Darpaz make me sick.

I hope he can Help Me* :help:

My Bladder Hurts so bad !

I really feel Sick* :bonk:

[ICNDonna]

:grouphug: I hope he will come up with something that will help.

Donna

[Glenda2]

Thankyou Donna , I Really HOPE he can Help me.

I am quite Miserable right now.

Keep your fingers crossed for me that he has good alternatives to suggest.
And they work and don't make me ill.

[VickiB]

You've had a tough time with this so far. I hope your Urologist will have some alternatives that lead to success.

Let us know how it goes!

Vicki

[mazzie]

Sorry to hear you are feeling sick that is not nice. Hope the Uro comes up with something for you did the Elmiron work other than that? Maybe he/she could be prescibed some anti nausea meds? Mazzie

[Glenda2]

Well the Urologist said My Only alternative is to do Elmiron Instills Once a week. :tsk:

But , I live up in the mountains (With Snow all winter) and it is a 2 hour drive on a Good Day.

4 or more , when my mountain road is impassable. :help:

He also said he could put me in the hospital and do that Bladder stretch procedure thingy. But It would hurt like the devil for about 3 weeks.
I can't take any type narcotics. Bad side effects. Don't work.

Or he said , go back to taking the Elmiron Capsule and just put up with being sick. :toilet:

I am at a complete Loss what to do ! :mad:

[VickiB]

That's a tough choice to be given! I know some of the people here do home instills. Perhaps that could be an option for you, eliminating the need to drive to an office for each session?

I wonder if you're across the border from me in NE Washington? I deal with much of the same being 86 miles from the urologist -which is a long, long ways on mountain roads once bad weather sets in! Ah, the joys of living past the end of the world, eh?

You'd mentioned the "Bladder stretch procedure thingy",...is that hydro distension? I have no experience with that but I know that some really find this helpful. Our ICNDonna (and others) uses this as a treatment, and I believe she has just had another recently. From what I've read, for some the 'fix' (using this term loosely as I know there is no absolute fix) can last for a good while. It may be something to consider. I don't know about the 'hurt like the devil for 3 weeks' part. Perhaps Donna would give her take on this aspect!

I had hoped you'd have returned with better news!

Vicki

[Glenda2]

I have No idea what to do ! :confused:

Do I drive in once a week for Instills (In bad snowey weather) ?
Very Dangerous Roads !

Or

Do I resume taking the Elmiron Capsule , and put up with the Raw throat , migraine headache , sinus pain , sore neck , diarrhea and hair falling out ?

As for that Bladder stretech , He said it is VERY Uncomfortable and I would be in alot of pain for awhile afterwards , up to 3 weeks he claims.
I cannot take Narcotics. They never work. Not even morphine , methadone or fentanyl. Bad violent side effects.

He said I can always just > Do Nothing :tsk: and put up with it.

I need your input opinions here ladies* :rolleyes: Help me ! :help:

[kj28]

WOW, I'm so sorry to hear that nothing is working for you, I wouldn't know what to do if I was in your shoes those are some crappy choices. I will be praying for you to get better and find something that works for you. Have you tried a second opinion? I have found what one doctor doesn't know another does. Maybe another doctor can recommend something else, I will do hope you get feeling well soon. My prayers are with you. :pray:

[Glenda2]

Well , as I have mentioned , I have gone back to taking One Elmiron Capsule daily dumped in a tiny glass of water.

Instant Side Effects. (Blah-Yuck-Fooie*) :toilet:

Where I live , finding a Urologist is Nye-On to Impossible.
I was Lucky to even locate One.
So finding another one is really not an option. :tsk:

I will just take the One capsule and put up with the bad effects from it.
or , take nothing and do nothing and really be sick and face it getting worse > Not an option !

[ICNDonna]

I just had a bladder hydrodistention exactly two weeks ago today with spinal anesthesia --- it was either my 42nd or 43rd (somehow I lost track) in my 34 years with IC. I went to the surgery center at 11:45 am and was back home by 5:00 pm and we live 45 minutes from the center. I still feel very slight discomfort, but if I do my usual, that will go away within the next few days. I usually feel better sooner, but I've had a very stressful two weeks from things not related to my bladder.

I have real problems with pain meds so don't take them often. If you need to do instillations, you might talk with your doctor about learning to do them at home. I did that for a long time.

There are many, many different treatment options available. Hang in there and don't give up.

Warm hugs,
Donna

[Glenda2]

Wow , so you have felt uncomfortable for atleast 2 weeks now from the Hydro. Well that is Out of the question for me. He said up to 3 weeks In pain from it.

As for learning to do Instills at Home , Not a chance on Earth can I do that.

I have a health issue , Thousands of Tumors all over my body and In it too.
My spine is riddled with Tumors and I cannot bend over and look down.
SO even trying to see to wipe myself is a impossibility.

Bending over to try to insert a cath in myself > Impossible.
It's all I can do to bend over and tie my shoes.

If I attemped to Cath myself , I'd do major Injury to myself. Not worth it.

For those of you ladies that do this on a regular basis , My hat is off to you , your very Brave and determined to beat this bad rap.

[ICNDonna]

When I say "uncomfortable" I mean that I have slight discomfort --- my pain level is down to about a 2 from a high of 9 before the procedure --- and in the meantime I've had a real health scare that ended up being two small cysts, but it was a very stressful time --- in the two weeks since my hydro I've had an MRI, ultrasound, and CT scan. My usual recovery time is about a week and I rarely need pain meds beyond the first day. Before the hydro I had recently, I had one in May of 2008 so I went 16 months in comfort (unless I messed up on my diet which I very rarely do). It was well worth the few days of being a little uncomfortable to feel good for well over a year --- and I'm a very active person.

I used soft catheters so they wouldn't cause damage --- my husband also learned so he could help if needed, but I managed on my own.

Donna

[KarenAnne]

Glenda, Has your doc mentioned hydroxyzine (Atarax), amitriptyline (Elavil), Lyrica, or any of the other oral medications? In the Patient section under treatment options, there are quite a few oral meds that help with the pain & discomfort. They are not narcotics. Maybe take the info back to this doc & see if he'll try one of them. Feel better soon.

[Glenda2]

I have Taken Atarax for 16 years. (For tumor itching on my skin)

Elavil made me violently ill in 1983.
One 25 mg pill fried my brain for Ten days. I lost my complete memory and was a catatonic zombee. I refuse anti-dep med's due to that.

[Glenda2]

Forgot to mention > Rhumatologist gave me Lyrica for Fibromyalgia .

That stuff made me jerk and twitch like I was having a grand mall seizure.

Strange because it's an Anti Seizure Medication.

I get the side effects it's suppose to prevent. :loco::loco:

[maryla]

Glenda,

You would be surprised at just how easy it is to cath. My uro's nurse is the one that showed me how to do it and the way she did it was just impossible for me and I'd get really frustrated trying to do it (trying to do it with a mirror laying down)her way. It didn't work for me.

But, my way is to use male lo-fric caths and put it in while sitting on the toilet hook up my tommi syringe. There is no bending over required. I do how ever then lay on the bath room floor and pour my solution into my tommi and let gravity take over from there. There is another gal on here that leans back on the toilet and lets gravity take over, but it's easier for me to do it the way I described.

There are times that I have to cath because I can't pee, and I can't imagine being that far away from a medical facility and not knowing how to cath with our disease. I'm not saying you can do it the first time. But it's like everything else we learn to do, It gets easier with practice.

I'm not a medical professional here but I really don't see any harm you could do to yourself. The low-fric caths are self lubricating and quite soft too.

If you watch DR. Parson's 3 part lecture on you-tube, he talks about a little 9 yr old girl that had really bad IC and the drs. were thinking about taking her bladder out. I quess her mother started giving her instills, but she told her mother that she wanted to learn how to do them herself and she did. So, his thoughts were if she can do them anyone can. So, in that respect she is my hero!

Basically, my main problem if you can even call it a problem is just getting it in the RIGHT hole, so to speak.

Hope this helps! hugs and blessings

[jvr]

Hi Glenda,

Just a thought here...I'm currently seeing a doctor locally here. He's good, but I can tell there is still some things he doesn't know. I'm seeing Dr. Lowell Parsons (helped create Elmiron) next month. It's about a 10 hour drive for us, but I'm hoping he can help put together a plan for my local urologist to work with. I took my daughter to see him back in July, and wow let me tell you the knowledge this man knows. I've seen I think around 5 other urologists for my IC. He by far blew them out of the water with his understanding and knowledge. I know there are a few of these IC specialty doctors that quite honestly sound like duds, but I do think if you can find one who's kind, knowledgeable and caring, they are definitely worth their weight in gold.:angel: I don't know where you live, but maybe you could find an IC specialist that is close to you who may have more ideas for your local urologist to work with? I hope you figure this all out soon...

Jill

[maryla]

Jill,

You are so blessed to be able to see Dr. Parson. I fell in love with him when I watched a 3 part lecture of his on you-tube a while back. Is he in California?

I just wished there was some way I could see him. But right now it's not in the cards.

Keep us posted on how your visit went and all his suggestions. It may be something we could take to our uros to see if it could help us, one just never knows.

hugs and blessings

[jvr]

Hi Maryla,

Yes, I do feel very lucky. He is at the University of California San Diego. I haven't met too many other users on here who have seen him. One gal I was speaking with privately recently has seen him for 11 years. He is here hero and stressed to me how much he really cares about each of his patients. He also has a great and caring staff:) He really impressed me after we saw him for my daughter. I will definitely keep you posted if you like:) We see him on December 8 and I have so many questions I want to ask him! I'll probably have to really narrow it down.:lmao:I liked his youtube videos also. He's so confident in what he does. He's exactly like that in person too. Where are you located? There are a few IC specialists that sound like real gems. Dr. Moldwin is another one that I would love to ask a million questions...

Jill

[jvr]

Oh, silly me...I just noticed you are in Ohio. Have you been to the Cleveland Clinic?

Jill

[Glenda2]

Wow , you ladies are by far the bravest of the brave to be able to do these things to yourself. :woohoo:

With my Tumor disease , my body is riddled with Thousands of tumors ,
It's all I can do to use my hands to even type on this computer.
I can barely look down to see my Key Board due to pain from these damn things. There is just No way I could sit on the toilet and Feel my way into the right "Hole" so to speak. :rolleyes:

I would puncture myself , trust me , I would.

Finding another Urologist is Impossible. I'd have to drive over a hundred miles to find a city that had more then a hand full of doctor's.
Urologist are few and far between.

I am just going to have to tollerate being puking sick from this Elmiron every day. I hate it , let me tell you , I really hate it , alot.

The Urologist said I could always Quit all of it and do nothing and just be sick from it.
Well Jeepers , I already feel like dirt before the medication , I feel like dirt on it , and if I quit , it might get so bad it could become fatal ?????

This is a horrible thought , but when the medical examiner does my autopsy , I would Love to see the inside of My bladder , I bet it is Bad. :tsk::help:

I take My Hat off to you Ladies. I admire your Bravery*

[maryla]

Jill,

Yes, I have been to see Dr. Rackley at the C.C. He is a great uro, however, his treatment protocol did not help me much. I did it for about 1-1/2-2 yrs without much relief.

He has though helped quite a few of the ladies here and I'm grateful for that. But when I watched DR P's lecture there was just something about him that told me he knew his stuff and I just thought I'd love to see him.

Again, I hope he helps you and yes, PLEASE keep us posted on his treatment protocol.

hugs and blessings

Oh, one more thing, I saw you took your daughter to him, does she have IC also?

[nottoc4]

Hugs for you Glenda.You are in a tough spot.Is there a GYN that is near you that could do instills for you? My Dr. Is an UROGYN and he does the instills for me.He is the one who diagnosed me after 2 years with a Uro that know nothing. Keep your chin up. Your URo could tell your GYN what cocktail to use and how often. This Instills were very important to my getting some relief.

[jvr]

Hi Mary,

Just out of sheer curiosity, what is Dr.Rackely's protocol? It's interesting to see how all these IC doctors choose to treat...Yes, my 5 year old daughter was diagnosed by Dr. Parsons this summer. Luckily, he thinks her case is mild and can be effectively treated. I thank God that her IC does not seem to debilitate her:pray: He was very encouraging as to being able to treat her and was very hopeful that she could still have a happy and productive life in spite of IC. I still get nervous and scared about it a lot, but he was very inspiring and positive. I'm really holding on to that right now to keep me going:) I promise I will absolutely keep you posted after my appointment. Any general questions you are wanting to know that I might ask?

Jill

[maryla]

Hi Jill,

Dr. Rackley's protocol was I believe 30ml of lidocaine, 200mgs of cystotec, 200 mgs of Elmiron and 300 mgs of sodium bicarb. I could do these up to 5 times a day. MY usual was about 3-4 times. The side affects from the cytotec were h**l. I would just freeze to death. It didn't matter if it was 100 degrees outside and I had 5 blankets on me. I have fibromyalgia too and then it would kick up after shivering to death. So, I stopped the cytotec. But like I said I didn't get the relief I was hoping for so I just stopped it all. For the last month or so I've started doing instill with chondrotin sulfate and sodium bicarb. So, I'm hoping with extened use I'll soon get some relief. I've also been using the Gaba-IC protocol which actually put me in remission for 5 weeks with a drop in pain level.

Dr Rackely is the one that told me (after looking at my history) that I've had IC for a very long time, but was only d'xed a little over 5 yrs ago. So, my bladder is pretty bad. We're thinking probably since my late teens and I'm 53 now.

I'm so sorry to hear your little girl has IC, but on the bright side, she's getting treatment by one of the top uro's and just maybe it can be controled enough that it doesn't get any worse. At least it wasn't like my situation and that's a good thing!

I actually have an appointment to see a new uro this month. I'm nervous and at the same time hopeful. It's not that I do not like my present uro, but he's a 2 hr drive and I cannot drive myself down to see him and it's just getting to be a real pain. Plus he's really getting up in age and takes off quite a bit. The final straw was last week when I though I had a uti and I called his office and he was on vacation yet again. So I then went to my gyn and the culture came back as me having kidney stones. I went to my PCP yesterday and he sent me to the hospital for a ct scan and it came back negative. so, I guess if they were there I must have passed it during that week, but I have been hurting so bad. But today is a little better.

As far as questions for Dr. Parsons, what does he think about hydro as a treatment? What does he think of dilatating the urethra? Inwhich my uro does it monthly and when I'm having a hydro and put out he does it quite a bit. And basically what his protocol is for treating IC?

I really appreciate you asking me to ask questions. Thank you!

hugs and blessings

[maryla]

Oh Jill,

One more thing. Does he also test for ureaplasma? Dr. Rackley did and it came back positive. It's a bacteria that can mimic IC symptoms.

Hugs and blessings

[Glenda2]

There is No way I could tollerate these Instills. I'll just take the Elmiron Capsule once a day and tollerate being sick. But let me tell ya > I hate it.

There are No doctor's any where near me ! I have to drive about 75 miles to find a small hand full of them.

I do not live in town , I do not live out in the country side , I live up in the Mountains.
The Winters here are a Witch with Deep Snow and Frigid Temps.
Impassable roads.

I cannot :tsk: just get in my 4 by 4 and go to town like you guy's do.


The Urologist wanted me to come to town once a week for Instills.
In the Summer time it would Not be so bad. Take me 2 hours approx. to get there. In the winter , it would take 4 or more hours. If I made it at all Due to Tree's down across the road from heavy snow on them. Power Lines are down all the time. Going to the doctor is just not an option for me , unless I am so ill I am about to die. Then I Go.

I'll just take the Nasty Pill Once a day* :bonk: