Top best things you have done for your condition of IC

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pam47462
3

Since I am new to this site and having IC I have learned so much from all of you already.   I  have only had it for six months so have a lot to learn about diet, medications, treatments etc..  I was wondering if all possible for you all to list the best treatments, foods, medications and how they have helped you.  I am still a baby at this stuff and its been a lot of trial and error in the past but now because of this site I have less pain and new hope for my future.  Thanks in advance.lol

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18 Replies

  • Posted

    Hi Pam, my method to this madness was first (watched what I ate) second(lots of water) three my tens device. Never ever drink fruit juice of any kind. Cranberries are a big no no, at least for me. As to medication, i take none, not even tylenol. I find tylenol or any pain meds makes me go into a flair. So really it is trial and error since everyone is different. Hang in there it does get better as soon as you figure out your dos and don'ts. 😎

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    • Posted

      Thanks for the info, your right everyone is different I hope to ween off the medications and treatments soon.  Water and diet play a huge part in this eating healthy is number one for me and lets not forget clean water.  When I get the chance I will go threw all the things I take, do or have tried.
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  • Posted

    Pam, if medication is not giving you problems i would continue, but notify your doctor if you are on prescription meds. Never stop if they are important for your health. I was talking about over the counter meds. Just wanted to add that.
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  • Posted

    Get your doctor to give you bladder instillations, drink lots of water, remove caffeine, take Prelief with every meal and use AZO when you get a flare.  That’s what works for me.

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  • Posted

    Hi Pam, to put it simply the best thing I did for my IC was to take HRT.  After that, diet.  No fruit juices - and only apples, and berries to eat.  No carbonated drinks and avoid sweeteners as much as possible - cut down on all sugars.  (Lots of food has hidden sugar!)  Drink plenty of water and milk (if you like it) Take Quercetin (natural anti-inflammatory) when things are really bad, plus Pre-relief to reduce acid in foods you might have accidentally (or even intentionally!) eaten that are not ideal for IC patients.  Medications - Betmiga has been good in reducing the times I need to visit the loo and is also calming.  As Brenda says don’t come off any medication if it’s helping! And certainly not without consulting your doctor.  IC needs lots of different treatments as just one doesn’t cure all! I can’t comment on the tens yet as I’ve only just started using it for my bladder but I’m encouraged by Brenda’s comments.  Take gentle exercise when you can and take care of your mental health.  Have some ‘me’ time every day and try to distract yourself (when you can) from your bladder.  Maybe take up a new hobby.  And keep in touch with other sufferers for moral support!
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  • pam47462
    3

    Posted

    Hi just to recap I am 52 years old and have had IC for 7 months now, Here is a list of meds and treatments and foods that I now take

    DMCO treatments - works ok contains DMSO Heparin, and solucotef.

    Mirabegron- for bladder spasms and pressure- works well

    Elmiron- for bladder repair and pain- not sure if it works yet to soon to tell will continue

    Gabapentin- for nerve pain - works ok

    Tramadol/acet- for pain- works somewhat well

    Zopliclolone - for sleep- works well

    Lorazapam- for anxiety and sleep- works well

    Mar Ketorolac- for pain and inflammation-works somewhat well

    Tens machine- to bring blood flow to bladder etc.. - seems to be working well I do the front, back  Water 8 8oz a day

    The IC diet, my favorites are carrot juice, kefir milk shake, cucumber salad and lots of greens, sweet apples, pears and blueberries.

    Rest and sleep are important and so is talking to people that can help.  I am waiting for pain management and then hopefully with time I will heal much faster.             

     

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    • pam47462
      3

      Posted

      Almost forgot no coffee so I drink Camomille with lavender and that helps me relax. I try to eat 3 pieces of fresh fatty salmon a week.  I also use coconut oil when cooking and omega three oil flax one I put on food after its cooked.  Its also important to have regular bowel movements so I eat a lot of Alpen cereal with dried organic fruits that are IC friendly. To show I us coconut soap from the body shop its a bit pricey at 5.00 a bar but its does not irritate my skin or private parts.  As for my vulva pain I was given the advice to use Vagifem and it has been working for relief of burning pain.
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    • pam47462
      3

      Posted

      Knew I would forget one more thing probiotics. so important after taking antibiotics.  I take one every day and a yogurt drink Bio k1 plus that is very pricey at 20.00 for six tiny bottles but they are said to contain 50 billion good bacteria. Also I take a multivitamin low in vitamin c , L Glutamine powder- supposed to be bladder helpful, magnesium lol I think that's everything.

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  • Posted

    Wow Pam I really think you have this ic down pat. I'm learning a lot from you. Yes I try to keep my bowels moving. But there are days that are tough which causes my ic to react, but thank goodness not to many. I try to watch what i eat, involving lots of fiber. Thanks for your info.

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    • Posted

      Hi Brenda I'm sure I have a lot to learn still,   going to see if I can go on hormone replacement thearpy and see if that works to.  I have always had problems with my bowels so I have to take seana.   Today is so nice out I am going to go out and get some sun that will give me my vitamin d, to help me from getting infections.  They say you only need 10 minutes of sunshine for 10,000 units of vitamin d.  The computer is so handy for information.  Thanks for the tens machine advice I love it and I am sure its helping I even use it on my arms, back you name it a good investment.

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    • Posted

      Hi Pam I've had IC symptoms for 3 years now. It started at 30. My advice would be. Don't take anti biotics. When I go to the GP if they tell me I have a minor infection I Waite 48 hours to see if I get worse. If I don't then I don't take them. If I do then I take them. Also you can buy urine sticks from Amazon which are really helpful. I take D Mannose three times a day. It's a natural sugar you find in Apple's and berries. It's good because the blood does not consume the sugar. It filters it out.

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    • Posted

      Hi Sandy do the test strips really work?  I just checked amazon because they don't sell them here in the pharmacy and there not that pricey is there one you can recommend?  as for the D Mannose I would love to try that but cant because its cranberry and I thought we were not allowed to have it when you have IC.  a

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    • Posted

      Hi Pam D Mannose is not cranberry. It's a type of sugar that is found in fruit. It comes from the glucose family . I normally buy any type of urine strips they are all the same. It just outs your mind at rest when you think you might have an infection.

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    • Posted

      Sorry about that Sandy I thought I read cranberry on amazon, so what does DMannose    do?  I found some test strips that show ph and infection not too expensive also prelief and azo not I have heard them mentioned but not sure what they do either,  If you have any other ideas I would love to hear them.

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    • Posted

      Hi Pam sorry I did t see this. Is there an app for this site? D Mannose is a natural sugar which is found in Apple's and berries. That's why IC suffers find earring apples helpful. D Mannose helps to flush out any bacteria in your bladder. Bacteria thay normally causes infection is E.coli. E.coli is attracted to the d Mannose and you body then flushes it out. I personally have found it very useful. My doctor told me I had a minor infection and instead of taking anti biotics o increased my dose of d mannose to 5 tablets for 4 days and it worked. There's no danger of taking d mannose because your body doesn't consume the sugar. My advice would be if you start taking d mannose cut back on processed sugary foods. Cakes. Sweets. Drinks. It's sad we can't eat all these foods. How long have you had the condition.

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    • Posted

      Hi sandy thanks for the info, I did get the test strips and they work so far no infection, even double checked with the doctor.  I have had IC for 6 months now and its ruined my life.  I am willing to try anything to get better I here some people have complete recoverys.  I love to be one of those people.  I will try the DManose and see how it goes.  As for not eating sugar or sweet foods that was one of the first things I did.  How long have you had it for?
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    • Posted

      Hi Pam I've had the symptoms since 2016. But not diagnosed because urologist said my bladder was fine. But I think things have progressed since then. Hoping to see a doctor in August as can't go private. At least you didn't get it when you were younger like me. It completely disables you.

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    • Posted

      Hi Sandy, ive had ic since February 2017. My urologist tested my urine and discovered apf biomarker which is s good sign of ic if no uti is present. I then had a scope done to rule out bladder cancer. Since ur bladder looked fine, i would suggest having ur urine tested for this biomarker.
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