Newly Dxed w/ IC (Interstitial Cystitis) - Any ideas? Thxs!

Discussion in 'Fibromyalgia Main Forum' started by zenouchy, Sep 14, 2006.

  1. zenouchy

    zenouchy Member

    Hi All,

    Thanks so much for reading my post. I really appreciate it! My doc and I finally figured out I have IC. If you have it too, I'm sure you know it can be tough to diagnose since it mimics bladder infections.

    Now that I know I have it, I'm having a challenge time treating it because the typical medicines that treat IC are not agreeing with me- the side effects from these meds have been terrible. I've tried Detrol LA, Ditropan, Vessicare, and Elavil, and they've all done quite a number on me.

    Do you have any ideas on what I can do? I've heard that mixing some baking soda in water can be helpful (as long as you don't have high blood pressure). I even checked with my doc on that, and he said it was fine. I've tried it, and it helps only very minimally. Any other ideas? This has become VERY debilitating for me.

    THANK YOU!!

    Sincerely,

    Erika
    [This Message was Edited on 09/14/2006]
  2. Sandyz

    Sandyz New Member

    I got diagnosed with IC last January. There are others on this board with it. People with CFS/Fm get it alot. I have been taking elmiron and it is working. It took over two monthes before the pain and frequency settled down. It worked pretty well for me but it does cause some hair lose.

    Its another hard thing to aid to our already long list. It will get better though it just takes awhile. Have you visited any IC sites? The IC Network is a good one.

    Others here will have more info for you. I am too tired right now to post much more. Also, we have had quite a few posts on IC. Type IC in the search and some stuff should come up.

    Sandy
  3. zenouchy

    zenouchy Member

    Thank you for taking the time to post even though you are tired; that is so sweet of you. For some reason when I type in IC in the search engine, it's not pulling up correctly. I'm so glad the Elmiron is working for you. I unfortunately take so many meds already because I have bipolar II and have tried a bunch of meds for IC already, so I feel afraid I'm running out of options. Hopefully not though. I did check out the IC association website before posting.

    It mentions a lot of meds, but it also mentions an antacid (probably can't specify the exact name here) and also a specific type of aloe vera. They are both very expensive though, but the aloe vera is REALLY REALLY expensive. I don't see how anyone can afford it. I may try the antacid though because I'm getting desperate. It's to the point that I'm having a hard time eating a LOT of foods. Elminating foods makes sense, but when you can't eat hardly anything except like 4 things, OY! It seems like my IC just got really bad really fast. I was fine for so long and it only flared slightly once in awhile and not it's just intolerable and hitting me like a ton of bricks. Thanks again, and I hope you get some good rest.

    Warm hugs,

    Erika
  4. zenouchy

    zenouchy Member

  5. ilovecats94

    ilovecats94 New Member

    Willow,
    I used to be on Cytotec. It is a medicine I was taking with Diclofenac that made up a med called Arthrotec.

    Cytotec is supposed to coat the stomach and protect it from NSAID problems.

    I'm surprised it works also for IC. I get a lot of UTI's but I have never been dx'd with IC.

    I have been on Detrol for overactive bladder for years.

    I recently quit Cytotec and Diclofenac due to terrible fluid problems I was getting from the Diclofenac.

    Hugs,
    Faye
  6. EllenComstock

    EllenComstock New Member

    So sorry you were diagnosed with IC, but at least you now know what you are dealing with. I have had IC for many years, but wasn't diagnosed until several years ago. I kept thinking that I had a bladder infection, but of course it was always negative. I finally saw a urologist at the Cleveland Clinic and he gave me some samples of a product called Prelief.

    It has helped my IC by about 80%. I still occasionally get flare-ups most often if my stress level goes up. I used to hardly get any sleep as I was constantly running to the bathroom about ten times a night and of course going often all day, too. I still go fairly often during the day, but I now only get up once or twice in the night. I feel so much better now.

    You can buy it over the counter at the drugstore. Not all drugstores carry it, but they can order it for you. You can also order it from their website. I know we can't post websites here, but all you do is put the name of the product and then the .com and you will have it. If you order more than $50.00, there is no shipping and handling charge and it is sent directly to your house. How easy is that? It comes in bottles of 120 tablets for around $12.00. It also comes in a powder form. I also carry a bottle in my purse for when we eat out.

    Prelief lowers the acid level in foods and drinks that are so irritating to the bladder. You will have to experiment to see what works for you. I started with two tablets with each meal, but now I take three and sometimes four if I am eating a lot of high-acid foods in a meal. It's also important to take a couple with any drinks you have between meals like coffee, tea, fruit juices or carbonated drinks. I take the Prelief with each meal even if I don't think I am eating anything that is high acid.

    Prelief will not interfere with any other meds you are taking and you can also take it before bed. These are the instructions the urologist gave me. I am so grateful to him.

    My IC problems were really severe so since Prelief helped me, I think it would probably help you. No, I am not a salesperson for Prelief. I wish someone had told me about this product years before. It would have saved me a lot of agony and sleepless nights.

    I hope this helps.

    Ellen
  7. Smiffy

    Smiffy Member

    Hi, I have this really badly & find the IC network message board helpful.

    You can alkalise your food with Prelief; I find this helpful. Some people take Tums. The dose for baking soda, as you know it's safe for you,is half a teaspoon in half a glass of water up to three times a day.

    You can cut out food that makes you flare; try cuting out all fruit & reintroducing it one at a time (I can only eat pears). Common irritants are chocolate, tomatoes, citrus, spices, vinegar & pickles, alcohol, caffeine & sometimes sweeteners, sugar & the nitrates in processed meat. I only ever drink water at room temperature. Watch out for vitamin brands & other supplements that have acidic contents & never believe anyone who tells you that cranberry juice will help!

    Most of the medicines you mention take several weeks to work, & Elmiron takes 6-12 months. (Elmiron capsules can be opened & the contents mixed with a litle water to try to stop the side effects - the powder is tasteless.) The only aloe vera you should take is the non acidic Desert Harvest, which supposedly coats the bladder lining in a similar way to Elmiron.

    I am using Oxybutynin patches at the moment because of side effects with the drugs you mentioned. I take 10mg Elavil/Ami a night.

    Have you seen a urologist? There are several sorts of bladder instills available, including Elmiron,& you may be suitable for Botox injections. Good luck!

  8. zenouchy

    zenouchy Member

    It sounds like everyone here has found something to help them with IC, at least somewhat, which is encouraging. I came upon the IC Assn website and saw a lot of suggestions for treatment, but are no people who comment on what really works for them, so it really helps to here from you all on what you like and don't like (even though I know what works for people is individualized).

    At any rate, the website does mention the aloe vera from Desert Harvest and wow is that amazingly expensive, so I'm very priced out of that. It also mentions the Prelief. After I posted this, my urologist (yes, I've been seeing one for several months), said I could try Prelief, so Walgreens is ordering it for me, and I'm picking it up today- can't wait! I don't think he knows much about it.

    I wonder how Prelief is different than other antacids? Should be interesting. I have IBS flare-ups sometimes as well as heartburn, which Prelief says it will help with, so hopefully the Prelief will help with ALL of these things.

    It looks like there are many other drug options too. They just unfortunately aren't a good alternative for me because I already take 3 meds for bipolar II, so I run a greater risk of drug interactions and more side effects. SIGH. Tis a tough one!

    I'm altering my diet too. Also a fun one! I usually just drink water, so that's no big deal, but I think I'll miss my apple juice. But I love fruit. Hopefully the Prelief will help. Does anyone have sensitivities with peanut butter? I used to eat it all the time, and now it seems to bother me sometimes.

    Thank you all SO MUCH for taking the time to write and for all of your help. I REALLY appreciate it.

    Wishing you all many happy/healthy days ahead.

    Warm hugs, Erika
  9. EllenComstock

    EllenComstock New Member

    I'm so glad you are going to give the Prelief a try. I hope it helps you as much as it has helped me. Give it some time to work, and as I said in my earlier reply, you will probably have to adjust the dosage. Prelief is basically calcium and and magnesium. I've taken both of these as nutritional supplements for years, but for some reason they never helped like the Prelief has.

    As for the peanut butter, I used to have problems with diahhrea. Other nuts and seeds like sunflower seeds gave me diahhrea, too. For some reason, the past several years I no longer have the problem. Our bodies are a mystery, aren't they?

    Good luck and keep us posted.

    Ellen
  10. zenouchy

    zenouchy Member

    Thanks so much Ellen for taking the time to reply to me again; I really appreciate it! I hope you are doing well. Indeed most antacids are mainly comprised of calcium. Since it's the calcium in it that takes the acid out of foods, I agree with you, I have no idea why high-calcium foods or calcium supplements don't do the trick.

    Plus, other antacids don't have magnesium (like Prelief), and they seem to work sometimes too. I like the Prelief, but it's so expensive compared to the other antacids. (How pricey can a little magnesium be?!) At this point, I'm trying to do a combo of Prelief and "regular" antacids.

    I seem to have better days than others with the peanuts; some days I'm okay, and other days I can't tolerate them at all. Thank you so much for your encouragement and empathy. This is a tough dx and it really helps to have the support of others. Wishing you many healthy/happy days ahead!

    Erika
    [This Message was Edited on 09/18/2006]
  11. mary124

    mary124 New Member

    Erika:

    Have you tried the diet yet? That is the one thing that you need to be on. It is really hard, though. But you need to try and find your "trigger foods". I was dx with IC back in 1992 by a hydro. I now use hydros for treatments every 6-8 months or so when I get in severe pain. I also take elmiron-it seems to help, been on it since it first came out in 1997. I haven't had any side effects at first, reason I said that is because, now my doctor has raised it to taking 2 caps. 3 times a day, and if I don't empty the caps. into a glass of water, I get a headache! Other than that I'm doing fine on it. I also go to a pain management clinic for my pain meds. as a lot of doctors don't want to prescribe them.

    Prelief is good, just take 2 tablets with your meal or drink (if its a "no-no food" or you can take some tums 2 to 3 tablets.)
    You need to find a uro who specialized in IC, not just any uro. My uro knew a lot about IC, but this past July he finally told me that he couldn't help me anymore and he wish that I would go to this other doctor who is a specialist, so that is what I'm doing now, right now, though we aren't doing too many things that are different, we have just finished doing DMSO treatments (this is something that is inserted directly into your bladder and you hold it for at least 15 minutes before you empty, you do this once a week for 4-6 weeks. Sometimes it helps and sometimes not. I just finished and I really can't tell the difference at this time, the doctor said it does take about 2-3 weeks to tell the difference so we will wait and see.

    Good luck in your treatments and medications. If you have any questions, let me know, and I will try to help answer any questions along with everyone else who has this disease. I'm not on here everyday, probably every 2-3 days.

    Mary
    [This Message was Edited on 09/18/2006]
  12. zenouchy

    zenouchy Member

    Hi Mary,

    Thank you for your help and response. I'm not sure I understand what a hydro. is? It does seem like the Prelief and Tums are working because I'm not going to the bathroom as much anymore (and knock on wood that remains the case!). I take so many meds as it is for other illnesses and deal with side effects from them that I'm going to do my best to stay off meds for IC. The ones I tried for IC already did not agree with me at all unfortunately.

    I'm indeed trying to eat an IC diet, at least as much as possible. It's definitely challenging because I'm also hypoglycemic and have a high metabolism, which means I'm hungry a lot. It's a bit hard to eat from a very limited amount of foods when you're hungry almost all the time, but I'm trying! Anyway, I'd love to know what you meant by the term "hydro." Thanks so much for your help and for taking the time to respond!

    All the best, Erika
    [This Message was Edited on 09/20/2006]
  13. donnadb

    donnadb New Member

    I also have IC very badly and have had numerous surgical procedures/medicines prescribed.. None of which seem to work very well for me. I recommend that you go the this link:

    http://www.ic-network.com

    Use the message board there. It has TONS of useful info on it and at least you can read other's stories and know that you are not alone! Sorry to hear about your Dx..
  14. zenouchy

    zenouchy Member

    Hi Donna,

    Thanks so much for your post. I'm really sorry to hear that you have severe I/C. I hope that eventually docs will find some answers that will help treat this frustrating condition.

    I've had a lot of luck by changing my diet to foods that are less acidic. Occasionally I take an antacid, but that's about it. My bladder is still overactive though, and I've experienced bad side effects from drugs that treat it.

    I/C is obviously very complex. Hopefully doctors will discover new treatments that will be truly effective. Thanks so much again for posting, and I the docs will be able to find a treatment that works for you soon.

    Much love, Erika
  15. Clay2

    Clay2 New Member

    The active ingrediant in Prelief is just Calcium Glycerophosphate. I've read that it can be ordered from chemical supply sources. Your pharmacy may be able to get it for you. It costs a fraction of what Prelief does.

    I don't have this problem myself but found this bit of information on another site.
  16. zenouchy

    zenouchy Member

    Thanks both of your for responding. I'm really doing much better now since I've changed my diet and am eating foods that are not acidic. It took a few miserable weeks to get the condition under control, but I consider myself lucky, as I have had other conditions that have yet to get controlled.

    I was gulping a teaspoon of baking soda after I ate (doc said it was ok) to help alkaline my body. (YUCK!) Now I just take an antacid occasionally (regular antacids seem to work just as well as Prelief does), and that's about all I need to do.

    SW, it's amazing how long it took you to get dxed, but I'm glad you got one. I actually did spell out the entire word in the search engine and it still didn't work for some reason. That was a few months ago when my condition was not under control, so I don't feel I urgently need the info now. Thank you for helping me with that!

    One thing I do find puzzling: whenever I give a urine sample at a doc's office for a physical, or at the gyno's office, they always say my urine looks terrible and think it's a bladder infection. They send it off to the lab, and it never is one. My urologist's nurse explained the reason why, but I can't remember exactly what she said. *I was wondering if this ever happens to you all as well? At least it never is a true infection though.

    Wishing you both a happy/healthy day.

    Much love, Erika
    [This Message was Edited on 11/14/2006]
  17. mary124

    mary124 New Member

    Erika:

    Sorry I'm just seeing this- a Hydro is actually a Hydrodistention. Its a procedure that they dx you with. It is also one of my treatments that they use for me when the pain gets to much for me. I usually have them done every 6-8 months. What this is - is an outpatient procedure - doctor goes in and stretch your bladder (fills it with water once or twice (you're asleep) they keep you for a few hours and once you are able to go pee you can go home. (This last one that I had, I did have some problems - first a lot of bleeding - bloodclots and now I'm having problems going to the bathroom, doctor won't give me anything as he says it will do more harm than good- so now we are in a wait and see period).
    I have had this done about 7 or 8 times in the last 4 years. I also take Elmiron and pain meds watch what I eat.
    You need to find yourself a Uro who specializes in IC. I have but I don't know if I'm happy with him, I'm thinking of going back to my regular Uro and talking to him or even my family doctor who knows about IC. I have an appointment with (FP) on Monday so I will ask him.
  18. FM58

    FM58 New Member

    Erika,

    You seem to have found some relief, I'm glad to hear that.

    I've had IC for over 3 years, it took awhile to get dx, starting w/ a really bad bladder infection gone awry.

    I tried Elmiron for about 9 months, it didn't help me. I sought out several different urologist's, specializing in IC. I have had numerous bladder instillations. That is medications installed in the bladder. Typically the medicatiion is put in via cathether, then you have to keep it in for a certain lenght of time and urinate it out, or it's cathetherize's out.

    I've also used Detrol LA for a long time, it helped for quite a while.

    What has helped the most, as you can see is also helping you - is following the IC diet. Truly the ONLY thing I drink is water, water, water & decaf tea. Using Prelief, baking soda or Tums does seem to help somewhat, but staying away from acidic foods & foods on the "no-no" list (oh, but chocolate is so hard!!)is really the best way to go. That has made the most difference in all my symptoms. I am seeing one of the top specialists in the field, she is located in Philadelphia & has a GREAT support staff that work with her.

    I had a horrendous IC flare in Sept, ended up in hospital - she used a "cocktail" that was fed into my bladder by cathether a "CBI" continious bladder infusion" which worked wonders!

    Best of luck w/ your IC Erika - hope your urologist is knowledgeable enough to help you through the situation. However, if you feel he/she is not, don't be afraid to seek one that "specializes" in IC!

    Gentle Hugs,
    Patty
  19. zenouchy

    zenouchy Member

    Mary, Patty, thank you so much for your kind and thoughtful replies. Mary, I hope you find a uro doc that you like. I'm so sorry that the IC doc didn't work out as well as you would have liked that is so frustrating. Thank you also for the info on hydrodistension. I didn't know it was separate from IC. Wow.

    And Patty ((((BIG HUGS!!)))) I'm SO SORRY you were in the hospital! Are you feeling better? Bless your heart!! Saying a prayer for you.

    Thank you both for your thoughtful responses.

    Much love, Erika

  20. Catseye

    Catseye Member

    Don't laugh or dismiss this as ridiculous but have you tried apple cider vinegar? You put like 2 tablespoons in a glass of water, with a teaspoon of honey if you can't stand it and sip it slowly over a long period. It's alkalizing, too. Look it up! But you have to go to health food store and get the good stuff with "mother" in it. It's cheap. Don't get the regular one from the grocery store. This helped me with a bladder infection. Regular vinegar is supposed to be an irritant but this stuff is useful for all kinds of things. take care, karen