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Old 06-19-2008, 09:21 AM   #1  
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Default Intersticial Cystitis

A long time ago I saw a thread on here about IC, I'm sure it's long gone so I thought I would start a new one in the hopes of finding support and some help.

I was diagnosed in 1990 - at the time many docs said it was a UTI until a specialist did a cystioscop (sp??) and found out then when I was under general anastesia I was still releasing. I was given DMSO injections about every 4 months and the prescription elavil to make me sleepy at night.

In 1996 I moved to a new state - never found another urologist - and realized the elavil was addicting - if I didn't have it I would flip out, so I stopped taking it.

So basically from 1996 thru 2007 I never had any treatment for my IC. I just sort of accepted the fact that I pee all the time and never sleep. I must get up 6x a night - maybe less -- each time I just get a tsp out. The worst time is when I'm preparing for sleep, brushing teeth, checking in on the kids, etc. Sometimes I go every 3-4 minutes --- just in that short time while I'm getting ready for bed. During the day it's not as bad -- even though it's "there"...I was told you are more quiet at night and that is why I feel it more.

Whew - I know this is getting long - bare with me. Late last summer - I was going all the time -- and when I wasn't going - I was in pain. I saw 3 urologists in one week - none of them were really much help. One said he did not think I had IC, rather he thought I had something else -- that is usually found in men. I was so frustrated. Then one night I could not get off the toilet, I thought I'd have to sleep in there with a pillow - just tiny squirts were coming every 10 seconds and I just had that IC pain - I had my husband take me to the ER....they were really of no help. They did not call the urologist "on call" - they gave me a shot in my butt for pain - and gave me prescription pain meds to "sleep it off", I was in bed for about 3 days, and finally felt better.

These days it still bugs me - that pain is always there - sometimes worse than others, but I have been eating things I shouldn't - like caffine. I am prepared to give that up 100%. Long story short -- where do I go from here. I want to start seeing a urologist on a regular basis. What questions do I ask?
What meds should I be on? Nobody has talked to me about Elmiron, and I haven't had a DMSO injection in over a decade....will those things help?

We are taking our first family vacation in a couple of months and I would flip out if I was in a lot of pain during that vacation. On a daily basis - I muddle thru -- I take my kids everywhere - swimming pools, parks - play dates- etc, I go shopping and do normal activities -- the pain is not always bad -- but when it is -- I get so depressed about it. That is why I know I need to stop drinking COKE. (yes coke)...and soda - I love soda...and I love chocolate.

Now what? I know this is a very long post --- I'm very sorry -- I'm just trying to find some other IC patients who are more responsible - and might have some great advice on what to do from here on out?

Thanks!
ETA: I guess I should also mention I never feel like I've truly emptied my bladder.

Last edited by 2Bthinagain; 06-19-2008 at 09:24 AM.
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Old 06-19-2008, 04:13 PM   #2  
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R U kidding me? Come on -- I know I saw a thread a while ago where TONS of people posted who had I.C., where are you????

Last edited by 2Bthinagain; 06-19-2008 at 04:14 PM.
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Old 06-19-2008, 04:57 PM   #3  
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Hi ! I do NOT have IC but have a good friend who suffers horribly with it. You MUST make the dietary changes - no caffeine, spicy foods etc.

Two things that really worked for her were bladder distention and installation (hope I'm spelling them correctly). The bladder distention was when the doctor overfilled her bladder with fluid to stretch it out. I believe the fluid was left in for a period of time and then released. It is supposed to help increase capacity and possibly mess up the signals your brain gets. It did help her some for a period of time and then she had to have it done again. The other thing is instillation when the doctor used a catheter to put medicine in her bladder and leave it for a short period of time.

Both of these have helped - it is NOT completely gone (she still takes a med - not sure which one) but it has improved. She says that by being meticulous about her diet - good bladder habits and taking her meds it is bearable. You need a doctor who understands IC and from what I have heard that is not always easy since there has not been any clearcut reason found for IC.

Good luck - I can't imagine dealing with this. I get up 5 or so times a night to pee but rarely go during the day so I think its a med I take - haven't figured that out yet either.

((((((((( hugs )))))))))))))))))
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Old 06-19-2008, 07:58 PM   #4  
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I have had a lot of bladder infections all my life. I also have sarcoidosis, a lung disease that also cause high blood calcium. Three years ago I was hospitalized for that and given lasix to bring it down. I had been pretty good (without urinary pain) for several years but after that I had it for 3 months. I am on prednisone. It went away but now it seems things always burn a little bit and I get up a lot at night. I, too, love tea and feel I should never drink it again. One thing I finally realized is that I think there is something wrong with the way I am built. My mom had the same problems. Just recently it dawned on me that bicycling and horse riding made those feelings worse. I quit riding my bike and horses in about the 7th grade and was ok until I go married and came home with a whopper bladder infection. After a round of antibiotics my dr kept me on pyridiium for another 2 weeks because the pain was still there. I am unisured so I hate to bring up anything to the doctor unless I just can't get by. My mom went to all sorts of specialists and had the scope thing done but suffered for about 3 solid years. Then ampicillin came out she got over it. But she was really prone to cystitis. This may not be exactly what you are talking about but the pain is very real.
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Old 06-20-2008, 09:29 AM   #5  
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Default Cranberry..

I was very sad to read about all your health problems.. it is hard to imagine having much quality of life when things are bad..

I don't know about your type of bladder problem, but I had an ordinary urine infection a while back.

I got some unsweeted cranberry juice for the health shop.. very good quality cranberry juice. I drank about half a glass topped up with water once to twice a day.

I did get a few hives because I think the juice was a bit acid for me.. but I got rid of the bladder infection.

I can't offer any real advice to help you, take care, Jenny

Last edited by JennyWren; 06-20-2008 at 09:30 AM.
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Old 06-22-2008, 03:00 PM   #6  
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Thanks for the replies everyone. Years ago I had that bladder thing where they injected me with chemcials -- but it's been YEARS. I haven't tried the cranberry juice in years either - I might give that one a try. The one thing different with IC than with bladder infections -- there is no burning when I go - so that's a bonus -- but I am tired all the time -- I imagine from waking up all night to go pee of course. And obviously I'm over weight now - thus the reason for being on this board. Anyway - I appreciate your ideas, thank you so much !
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Old 06-29-2008, 10:34 PM   #7  
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Hi 2bthin again,

I have IC. I have had it since my hyst. 3 years ago. It's a horrible disease and through a lot of work with my diet, Elmiron, Elavil, and Enabelex I can manage my symptoms.

I work really hard to keep on a low acidic diet--no soda or chocolate, no tomatoes..etc. Most days I feel like a normal person--but it takes work.

I do have a coke every once in awhile, maybe a piece of pizza, 1 p. of chocolate. I didn't even think about doing that for the first 2 years.

You need to find a urologist who knows a lot about IC and who can help you to feel better. What works for one person doesn't work for everyone. I can recommend some good websites for self-education and if you want to "talk" about this, give me PM.

I know first hand how this disease feels and how hard it is to live with it.
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Old 06-30-2008, 07:37 AM   #8  
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Hi Mychoice!
Thanks for posting. The sad thing with me, is that I had been diagnosed in 1990. When I was 25 years old. They said I was very young to be diagnosed with it. I lived with those darn chemical injections for a while -- but after a year of that - I moved to another state. I was also on Elavil -- which I gave up in 1996.
My life became very busy after that -- getting married - moving a LOT with husbands career - and having children...I am now 42.
I think I learned to live with the symptons and the pain was just normal after a while. However, I never game up chocolate OR soda.
Then last summer when out of the blue I was doubled over in pain -- I didn't know what to do. A friend recently told me that I should see a urologist again on a REGULAR basis.
Last summer- my family doctor gave me a prescription for Elavil - first time I'd started taking it in over 10 yrs. I hate the way it makes me feel in the morning - all tired and hung over. Right now I'm in the process of trying to NOT take it anymore.
I have heard of people taking Elmiron - but nobody has ever mentioned that I take it. What does it do for you?
That one idiot urologist I met with last summer said he didn't think I had IC and wanted to give me a prescription mostly used for men !!! I couldn't believe it ! In 1990 I was under - when my then doctor did the cystoscope, I know I have I.C.
I just worry about future travel plans -- and what in the WORLD would I do in the middle of vacation if I were in so much pain - and going so frequently that I couldn't get off the toilet.
That is what killed me last summer -- it was only a tsp or so at a time -- but each time I'd stand up - I'd have to go again - yet just another drop or so.
I do have an appt to see a new doctor in a few weeks.
If I'm not having symptons - I hope he doesn't want to give me those chemical injections. Do you get those too? Maybe he'll give me this "Elmiron" and tell me to stop drinking soda - which I am trying. I've switched to sugar free kool aid.
Sorry for the long post!
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Old 07-16-2008, 05:13 PM   #9  
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*hugs*

I was diagnosed in 2002. Really frustrating syndrome to deal with. How I cope:

-IC Diet. This one is a must for me, 100%, absolutely. And contrary to what people are saying above, NO CRANBERRY JUICE!! Dear god, no. Even thinking about that makes me squirm uncomfortable. I also have major problems with aspartame, MSG, alcohol and caffeine. I have to avoid all of those for the rest of my life unless I want a flare up! Other big no-nos for most IC patients are most fruits (especially citrus) and tomatoes. That said, this illness varies so much from person to person that your dietary needs may be quite different. If you are in the US, you can purchase "Prelief" (should be sold near Lactaid in the pharmacy) which is a dietary supplement that reduces the acid in a lot of things. I can drink some pops and juices if I mix in some Prelief, where I couldn't normally have them.
-Elmiron. This has been a huge help for me, though not everyone responds well to it. Took about a year for it to really kick in for me; takes most people 3-6 months or more. Basically, it is thought to re-coat the lining of the bladder.
-Antihistamines. I take Reactine daily on advice of my uro. The idea here is that some of the inflammation in the bladder wall may be due to histamines.
-Rescue instillations. These are baking soda, lidocaine & heparin, and my uro does a course of 9 over 3 weeks. These instills usually put me into a stable condition for 1.5-2 years.

During flares:
-pyridium (even though my stomach hates it...I have Ulcerative Colitis & IBS, and they loathe that stuff!!)
-strong painkillers if necessary

Hrm, as for DMSO...some people react well to DMSO, but a lot of people have problems with it. My uro is staunchly against it, but some uros swear by it.

I can recommend a great forum for IC help & advice if you're interested. Let me know and I'll PM you. (edit: looks like MyChoice2bfit may already be recommending the same place, by the sounds of it!!)

Please feel free to ask any questions. I've been coping with this illness for years now and I always like to help people out with everything I've learned -- paying forward the advice people gave me when I was first diagnosed.

Good luck!!


EDIT: Oh, I forgot! In the beginning, I did "bladder retraining" -- basically, always holding my bladder 5-15 minutes past those "I HAVE TO GO NOW!" urges. Over time, my bladder doesn't panic so much when it gets full. I still go 10-16 times a day on average, but that's SO much better than it was when I was first diagnosed. I cursed my uro up and down (to myself) when he first suggested it, but it has made a big difference.

Last edited by maalisse; 07-16-2008 at 05:17 PM.
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