View Full Version : diagnosed today
10-25-2004, 07:33 AM
Hello I was diagnosed with early stage IC today following a cystoscopy - this is my third one - and last time it was all clear however now it is there as they could see mast cells which are causing me pain.
I dont want this to progress, can anyone tell me how to prevent this from developing. My urologist said to take cranberry tablets and he has put me on detrusitol 2mg (tolterodine LTartate) for the next 6 weeks - I am worried about it as I hear contradictatory information about what to take.
Any advice? At the moment I only have pain when I have a full bladder, and I go every hour to the toilet.
Any advice greatly appreciated..
:welcome: I want to welcome you to the ICN. You will find a lot of info here. I will give you the link to the handbook, http://www.ic-network.com/handbook/. Read through that, it will help you understand things more clearly.
Pay close attention to diet, that is very helpful. I question your Dr.s knowledge of IC in his recommendation of cranberry tablets. Cranberry is a nightmare to most IC bladders. It might be worth a visit to another urologist in your area to see what his treatment regimine might be.
Good luck and keep us posted.
10-25-2004, 09:01 AM
do not take cranberry pills!!! yikes!!! i would definitely recommend another doctor.
10-25-2004, 09:24 AM
Cranberry Pills!! Run as fast as you can AWAY from this "Dr" and get another opinion!!!!
10-25-2004, 09:31 AM
Definite no-no on the cranberry pills (for most ICers anyway). I remember the last time I had a flare before being properly diagnosed my gyno said - just go home and drink tons of cranberry juice ... needless to say, did the OPPOSITE of making things better for me! I find that I can have pretty much any foods I want, but no fruits of any kind. Something about the citric acid.
Ditto to what the others have said --- I'd stay far away from anything with cranberry in it.... :( I think the med you mentioned is Detrol LA --- that can help bladder spasms.
Have you and your doctor discussed what the next step in treatment will be?
10-25-2004, 09:59 AM
Do not take cranberry juice or caplets.. My Gp thought that I had a urinary tract infection before I was diagnosed with IC and I was sucking back the cranberry juice like there was no tomorrow. It put me in such a bad flair ( did not know that at the time) that I ended up in the hospital. Later I told my uro about this and he said that taking cranberry juice would be like pouring acid on a wound. So, do not do it! If it is possible to find another uro then I would do that. It dosen't seem like this uro know much about IC. If you think it would be difficult to find someone else then you should bring in info from this sight and show him.
Wishing you the best of luck and also a big warm welcome.
10-25-2004, 10:20 AM
Check the ICN physician listings: http://www.ic-network.com/md/doctorlistings.html . My first uro was a real stinker, but the one I found from that list is great!
Good luck finding some help :).
Hi and would like to add my welcome to you, the IC Network is a great place for information, and the boards are wonderful for support, and lots of help from others suffering with IC. Like the gals have posted, I would stay away from cranberry juice or pills, just the thought of it makes my bladder cringe. Let us know how you are getting on, and hope you can get some relief from your pain, welcoming hug Iris. :welcome: :grouphug: :flower:
10-25-2004, 11:18 AM
:welcome: to the IC Network family. I suggest you talk to your doctor about possibly trying Elmiron. It can take months to be effective, but some find it helps significantly. Also, you'll find the IC diet in the Patient Handbook --- I suggest you try that immediately.
There are some IC patients who have reported being helped by cranberry tablets, but I would be extremely cautious about anything containing any kind of cranberry anything. We call cranberries acid bombs because they can cause so much irritation.
Sending warm encouraging hugs,
10-25-2004, 12:06 PM
Just wanted to :welcome: you to the ICN!
You've been given some good advice already -- namely to check out the Patient Handbook and read the info in it, especially the part on the IC Diet. This diet has helped many many IC patients, and some patients can even control their symptoms through diet modification alone!
When you read about the diet, you'll see that, as everyone's said, cranberry is a big no-no and can actually make your pain and frequency symptoms worse. The others are right that you may need to see another doctor, as this one doesn't seem to be up on all the nuances of IC.
The med you're on is Detrol LA here in the states; Kim (vm) is right. It might help you with frequency of urination, but you may want to discuss other options with an IC specialist, as Detrol LA alone often doesn't relieve all symptoms.
10-25-2004, 10:02 PM
Hi, welcome : )
I don't think I need to warn you about the cranberry tablets since everyone has pointed that out ;)
I was told by the nurse at the hospital that I should drink cranberry and apple juice after by cysto/hydro and luckily I knew not to do that and told her "People with IC can't have acidic foods/liquids because it will make the pain worse". Just goes to show that urologists and other people who deal with ICers shouldn't give advice without being completly sure what they're dealing with
10-26-2004, 06:40 AM
Thanks so much for your kind advice, today was the first without cranberry and I feel mych better, not as much pain, but still a bit - I think the Urotrol tabs are helping a bit as I have only been to the toilet twice today!!
I really hope I can combat this as it is in the early stages, are mast?cells present but only at the bottom of the bladder. I guess I should stick to my Urotrol tabs for 6 weeks then look at Elmiron - I dont think I can combine the 2 - what do you think?
Thanks again for the advice xx
10-26-2004, 12:06 PM
I am confused about which med you are taking. At first you said you are taking Detrusitol which is the same as Detrol. Later you said you are taking Urotrol which I believe is the same as Ditropan. Many ICers are often given either Detrol or Ditropan at first to see if it helps with frequency. They work for some and not for others.
I was first given Detrol LA (4 mg time release) and it works for me. I still take it. There is no problem with interaction with the Elmiron that I also take. I don't believe there is any problem with interaction between Urotrol and Elmiron, either. Of course you need to discuss this with your physician, but there shouldn't be a problem with taking Elmiron with your current med. Doctors often start by prescribing one medication and add others later on. You will probably want to spend some time reading about the meds and treatments commonly used for IC patients so you can discuss all of these with your doctor and decide what the best course of treatment is for you.
Glad to hear you stopped taking the cranberry! It can cause huge problems for IC patients! Have you started the IC diet yet? If not, I hope you will do so. As others have described so well, following the diet can be of tremendous benefit to you. If you have already seen progress just by stopping the cranberry, it is very possible there are other foods in your diet that are irritating your bladder. The vast majority of ICers are sensitive to at least some foods. If you stop consuming them, your bladder will have a chance to calm down and you will feel much better. The only way to know if your bladder is sensitive to foods is to give the diet an honest try.
10-27-2004, 06:30 AM
thanks annie - I am also confused about my medicationas on the packet it says 42 Detrusitol 2mg tablets, then inside on the tablets it says Urotrol 2mg Comprimidos Tolteodina - do you think they gave me the wrong ones??
Help this is confusing!! Also I spoke again to my urol about cranberry and he said that I have not advanced to IC but is only early stages and they cant be sure what it is - are mast cells present which is an indication, but not too advanced. So he said to keep on with the cranberry, but I told him about this forum and he said not to pay attention to it!! But I am sticking to my guns and not taking the stupid cranberry as I feel better for it...
Hello!! Glad you found us! Doctors seem to be on a sort of sliding scale as to what they do and don't know or believe and don't believe about the treatment for IC. Following the IC diet can't harm you and may well help you. You do have to become your own food detective and your own advocate with your care providers. Doctors are just educated people and can be totally wrong, as I have learned over the last year and a half.
Two med names sounds very odd indeed. I would go back to the pharmacy with the pills you have and ask that question of the pharmacist. I've never seen a prescription with two different drug names packaged by the pharmacy like that.
10-27-2004, 01:52 PM
This is very confusing! I think Myli's suggestion of taking the package with the medication back to the pharmacy to check on it is a very good one.
I'm afraid I don't understand your urologist, either. It isn't quite IC, there are mast cells present yet he doesn't know what it is???? I don't understand this at all. If you do not have a documented infection, I think you are wise to stick with your decision not to use cranberry. It is believed cranberry can be beneficial if bacteria are present but, if there is no infection and there is any damage to the lining of the bladder, cranberry only serves to further irritate the damaged tissue.
Would consultation with another urologist be a possibility for you? A second opinion from a physician who is experienced in treating IC patients might be of benefit to you in this situation.
I wish you success in getting an accurate diagnosis and hope you will be feeling much better very soon!
11-01-2004, 06:22 AM
thanks for the replies, I took the pack to the doctor and he said Urotrol and the Detrusitol are the same thing - well I hope any way. I feel no pain today at all which is great, I am sticking to my diet of no chocolate, caffein, red fruits or sweet foods and this must be working - along with the Detrusitol 2mg every morning and 1.5 litres of water a day. I really thought I would have pain every day, but I had a lovely weekend away with my partner - and even hanky panky and no pain!! unbelievable..
I also went to another doctor and he prescibed me a mild anti depressant which he said would help with the cystysis and depressed moods - it is only 20mg a day and is not addictive, this is helping me sleep also (as I has insomnia for some time).
There are a few tips for you anyway. Good Luck!
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