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Posted 1/26/2013 5:51 PM (GMT -5)

cry  

 In Oct. 2012 I saw my Uro for what I thought was another of the many bladder infections I thought I was having. I tested negative but was still treated with antibiotics. So I saw the Uro and while waiting saw a answer and question sheet for IC. I answered yes to everything and told the Dr. when he came in. So that's how I was diagnosed. The frequent need to urinate and have nothing there the abdominal pain and feeling like I have a red hot poker inside me are all constant and causing me so much distress. I can't sleep more than 1 and 1/2 to 3 hours with out having to get up to urinate only to have a hard time and a lot of pain for very little output. My Dr. put me on ElMiron and said it would take 3 to 6 months to work, if it worked. No other options. He then did what he called an installation which involved injecting saline heparin and a type of lidocaine into my bladder which I had to hold for an hour or two then urinate. He said he would do this once a month for at least 6 months and go from there. The first time it helped the 2nd kinda worked and the 3rd less so.

  I don't know what to do about this pain though. It's debilitating and is making my life  miserable. It's constant and nothing seems to help. Does anyone have any advice to give or perhaps tips or wive tales, anything at this point? Is there something I should be talking to my Dr. about that I don't know? Other drugs possibly or treatments maybe? I'm desperate now and feel so low because of this pain. Any help would be greatly appreciated. Thank you for your time.

toritoo

ps The Dr. gave me a list of foods I could and couldn't eat, a very small list of yeses and long list of no's. I've tried to stick to it. I'll do anything at this point.

Thanks again.

Posted 1/26/2013 6:54 PM (GMT -5)
I have IC. Fortunately, I don't have pain, just frequency and constant UTIs. Have you been diagnosed with lyme as well? I have.

I've made good progress, but it's taken years. I think I'm making more progress now by treating for lyme and co-infections. There are a couple of good books out there to help with alternative answers to IC: one is something line Along the Healing Path by Catherine Simone. The other is the Better Bladder Book. Both authors have healed themselves from IC.

Another immedate thing to consider is a broth culture by United Medical Labs. Also, there's an herbal alternative to Elmiron called Cystoprotek; I've not had to take it myself, but it has very good reviews. There's so much to consider: heavy metal toxicity, hormone imbalances, lyme/infections, biofilms, etc.

You should seek out a good alternative praciticioner along with those books as well as a lyme literate dr. I also take Elavil 10 mg to help with sleep; that worked wonders for me. It also helps relieve the nerves in the bladder. Good luck.
Posted 1/27/2013 12:23 AM (GMT -5)
Hey Toritoo,

Diet is what worked best for me. Eliminate all acid and coffee. NO CRANBERRY JUICE. Everyone thinks this always works because cranberry helps heal the bladder...not so with IC. In fact, just the opposite. There are certain foods that actually help calm the bladder. First of all, for immediate relief (at least some), hop in the tub. I was taking about 15 baths a day.

My saving grace - cantaloupe.. I know it sounds funny, but true.. Also, watermelon (which just has too much sugar) and honey dew. I ate a cantaloupe a day, and it really got me better. By day 3, there was a huge difference, but I also changed the diet.

Also, be weary that any medications or vitamins you are taking that they don't act as a diuretic. I had to stop some for a few days while my bladder calmed. I returned slowly, maintaining my diet and eating that cantaloupe.

http://www.ic-network.com/diet/

Thats a link explaining what to avoid and what can help. I don't know why cantaloupe isn't on there! lol. Its what worked bet for me. Hope that helps!
Posted 1/27/2013 3:20 PM (GMT -5)
I can attest to the cantaloupe working!! Thanks Samjones! Forgot to tell you about how it calmed my bladder down!

Diet is huge in healing your bladder. As Samjones said, you have to eliminate acid. Take antacids or use baking soda to reduce acid in your system. With IC your bladder walls have ulcers/cuts in the lining and any acidic food will be, well, like you said, "a hot poker" in your bladder. Also, my doctor told me last week to try an antihistamine every day. Because IC is usually caused by Lyme, or food allergies/sensitivities. You have histamine receptors in your bladder as well as everywhere else and if it is indeed a food allergy this should help.

You pretty much have to eat alkaline. It's hard. You are talking to a former coffee/chocolate/pasta/dairy addict. No more. I couldn't take the pain anymore--it was simply not worth the pain to indulge. No alcohol either, although that was never an issue for me.

I was having a bad bladder flare last week and it is debilitating and pretty much ruins your quality of life. I completely sympathize. I'm sorry you have to deal with this. But over time, if you watch your diet, etc. take the Elmiron and it should get better. Along the Healing Path is a great book and it's actually how I found the LLND that diagnosed me with Lyme. If it is Lyme causing your IC, once you get rid of the Lyme, the IC should go, too. But I will tell you what my Lyme doc told me--don't let them keep doing those installations, because it causes scar tissue to form and if you have Lyme or co-infection bugs in there that get trapped behind the scar tissue, you'll never get rid of the IC. I never let them do one on me because she told me that and I did not want to deal with this insanity forever. So stop the installations, take the Elmiron and watch your diet.

Also, do the broth culture that Twinkle mentioned. Normally when they do cultures for bladder infections, they grow them at most for 3 days because it's all that insurance will allow. United Labs cultures for up to 10 days to see what grows. My doctor said she's had patients that have had 5 different layers of bacteria in their cultures!!! It's worth the money! It costs about $285. But if they find bacteria in there that has been hiding, they do sensitivity tests and let you know EXACTLY what abx to take to kill it!!

Good luck! Hope you feel better soon. I know it's a nightmare.
Posted 1/27/2013 3:42 PM (GMT -5)
Thank you so much for all the information. I went right out this a.m. and bought a cantalope (which I really don't like but I'm desperate) some watermelon, which I love but I'll be darned if I'm going to pay $3.99 a lb for a little one! I'll eat the cantalope. This talk about Lyme is all news to me I haven't heard anything about it. I'll have to talk to my Dr. The installations aren't good? I've been living from one month to the next waiting for them thinking they're good for me. I've done the diet, mostly. Chocolate is a hard one but you got to do what you got to do. I wonder if anyone knows if mints like Altoids are ok because I eat them by the dozen in a day? There is so much more to this than I thought and I have to say I'm a little upset with my Dr. for not sharing more of this kind of info with me. I'll have a lot more questions for him next time I see him that's for sure.
Thank you so much all of you, when I first was diagnosed with this I didn't do my usual research that normally I would've done because I was so upset reading that pain is such an issue. Kinda buried my head in the sand but I'm out now and ready for any and all info that will help me live with or get rid of this terrible illness. I look forward to reading more posts on the subject.
Thanks again all,
toritoo
Posted 1/27/2013 11:57 PM (GMT -5)
Hey Shabbychic,

I am so happy the cantaloupe worked for you! Crazy to think, but it does. I am very happy that you found some relief. I understand how horrible that pain is.

That came out of my grandmother's book of homepathic remedies (my mother's now). I have gotten so many great things out of there that are natural like like.. Let me know if you need another.

Toritoo, I hope it works well for you too. Honeydew is said to work very well too, do you like that?
Posted 1/28/2013 11:09 AM (GMT -5)
Hi Samjones, Well I'm glad to know that honeydew works also that one I like a little better. I am a bit confused though. When you say eat melon is that all I should eat durring a flare up? I mean nothing else all day except melon? I'll do it if that's what works but just not sure on how much and if that's all I should eat. I'm going to start the melon today so if anyone has an answer to this question I'd appreciate a heads up. I've been in this "flare up" for nearly a month now and it's just so painful and depressing I just want it over. Also someone mentioned about taking elavil at night to sleep. I'm curious though as Elavil knocks me out will I end up wetting myself? I get up every couple of hours as it is but hardly anything productive about it even though the urge is so strong. Thanks again all. Still wondering about the mints also, are they a yes or no? If anyone knows I'd love to hear about it. Today is the first day of the start of getting rid of this flare up I sure am curious and can't wait for it to work,
Thanks again.
toritoo
Posted 1/28/2013 6:00 PM (GMT -5)
I can't answer to the melon questions, but on the mints, they have sugar, which I'm sure isn't helping the IC issues at all. Use a sugar free mint like "Spry", which is sweetened with Xylitol.

***I receive no compensation from the makers of 'Spry' in any form, at any time.***
Posted 1/28/2013 7:41 PM (GMT -5)
Hey Toritoo,

I ate a cantaloupe a day during flareups. I don't know if it would have worked with less, but that was how much I ate. I did eat other things as well. I stuck to the diet on this site:

http://www.ic-network.com/diet/

Traveler is right about the altoids, they willl make things worse too. Refrain from all acids, coffee, sugar,chocolate, and alcohol.

When I noticed the flareups were over, I slowly introduced some things back into my diet, and some things were ok, while others I noticed caused discomfort for me in the smallest amount I had (cranberry juice mainly). Vitamin c can also cause a flareup. I stopped taking that during flareups too. Now I don't take it at all any more for other reasons.

The key is to stick to that diet, and listen to your body when you slowly reintroduce things. When I feel bladder pain coming on again, I just down the cantaloupe and restrict my diet again... Hope that helps. Let me know if you have any more questions.
Posted 1/30/2013 4:31 PM (GMT -5)
Dear All, Thank you once again for all the info. It's been a rough month for me and now I'm starting to have a little less pain. Cantelope is coming out of my ears but it does seem to help. Psychologically this has become so overwhelming I feel like heading back to the head in the sand position. I'm trying, really I am. But there's so much information to process, so many foods to know what's good and whats bad. I just never dreamed it would be so all consuming and that's what I'm getting from everyone. It's really a total life style change. It's a lot to digest and I have a lot of questions for my Dr. at my next appt. Thank you for that. I'm also trying to process the fact that this is a life time thing I'm dealing with and I'm already dealing with several other health issues that are life time issues.
I plan on doing everything you've all suggested, get the books, do the diet (which I've started) and hopefully manage this IC.
I'll be reading all the posts for more information but really thank you all so much again for your caring help.
toritoo
Posted 4/5/2013 7:20 PM (GMT -5)
i suspect lyme also and wondering how to find a lyme doctor and if i get the test through igenex which one to order?
Posted 4/6/2013 10:34 AM (GMT -5)
Hi Manuel,

In order to find a dr in your region, you can start a new thread with the following title 'Seeking LLMD in _______'.

People will jump in to give you advise on a dr in your region, or the region you're willing to travel to. We're not allowed to post names of doctors on the forum. Once you start that new thread, I would like to ask you to enable your email address under 'My profile', then 'Edit profile' - that way people can send you private messages with the information you asked for.

Good luck!

Marie
Posted 4/6/2013 11:48 AM (GMT -5)

tongue  Hi Everybody,

 

  Just wanted to let you all know that after four and half months the Elmiron has started working! I'm so relieved to at last be out of the constant pain. Diet is definitely the key. I've found what foods I can eat and things I should just stay away from. I made the mistake of having one bite of what I thought was just rice in a tortilla shell and it turned out to be spicy Mexican rice! By the next morning and for three days after I was right back in the throes of pain again. One bite! So I've learned my lesson and things are back to better than it was. I'm still having problems with the constant urge to urinate and not being able to and that in itself isn't a good way to go throgh the day and night.

  As I said lesson learned. Thank you so much everyone for all your help and empathy and the links. I don't think I could've done it with out it. We, my husband and I are actually planning a vacation! Las Vegas here we come! Didn't think it was ever going to happen but here we are. I'm not a drinker but I've never been to Vegas and not drank so that should be different.

  Take care everyone and once again thank you so very much for everything.

Toritoo

ps Did ask the Dr. about Lime disease and I don't have it! Yeah! Dodged that bullet.

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