Flare with Bleeding

[cookie707]

Does anyone else ever bleed when they have a flare? I usually pee blood after about 2 days with a flare...and it's so painful. It happened again this a.m., but by this afternoon, the bleeding has stopped but it still hurts. I had just started taking Desert Harvest Whole Leaf Aloe capsules (6 a day) and within hours I was in a flare. Bleeding didn't happen right away...several days later. I'm going to the uro in about 1/2 hour...he wants to try and see if he can find the source of the blood...but now it stopped. Naturally. Just wondered how common it was for bleeding. Sometimes they are really UTI's but not always in me.

Thanks so much for your help!
Mari

[ICchell]

I did have some bleeding and clots in my urine last night,now it has stopped.
Good luck at your Uro visit!please let me know what happens.
Feel better soon!
:pray: :grouphug: :kiss:

[dyno]

I don't have bleeding with my flares, but maybe some do. I think it is good you are going to the uro. Let us know what you find out.:grouphug:

[SharonA]

The only time I have bleeding is when I have a UTI.

Let us know how it went and what you found out. :kiss:

[cookie707]

Thanks for the quick responses. I just returned from the uro's office and he's ordered an IVP. Urine is being sent to be cultured but he did give me 3 days' of Macrobid. He's afraid, since this is the 3rd bout with bleeding in the last 6 months, that I may have kidney stones. We shall see. Test is Thursday a.m. 4/15! Lucky me...the prep for an IVP is worse than a flare! YUK! Oh well. The price we pay to find out what ails us!haha

Thanks everyone. I'll post the results when I hear back from the lab.

[blue]

I hope your ok, and you feel better soon!

[kelly McC]

Best wishes ... I second that on the IVP prep Yucky.... keep us posted and take care.
Kelly

[cookie707]

Thank You Blue & Kelly. I appreciate your kind words of support. I start the prep in a few hours, so I'm trying to get as much work done prior to beginning the fun stuff at noon!hahaha Can't really work if I'm going to spend all day in the bathroom!hahaha Thanks again!

Mari

[Kim Schema]

Hey Cookie~
Do you have any other problems than the IC. Like endo hyperplasia or vulvodynia?? I have the same problems but the bleeding lasts for days and heavy. Matter of fact I am waiting for the results of my last vulva biopsy. to find out if something else is going on.

Good luck with your Ivp. They aren't bad.

Kim

[cookie707]

Yes, I did have endometriosis, cysts on my ovaries, scar tissue, etc., and had a hysterectomy and removal of my tubes & ovaries. IC was diagnosed before hysterectomy...so now that the female stuff is all gone, I only have IC pain to contend with. Unless, of course, they find any kidney stones with the IVP. I truly believe that this "bleeding" time, it is just a reaction I had to taking Desert Harvest Whole Leaf Aloe Vera Capsules. My bladder started spasming within hours of taking the 3 capsules. I waited one day in between and took them again thinking that maybe I just ate something bad for my bladder...but this time, the pain was much more intense and hasn't let up since...culminating in the bloody pee!haha But, why it happened 2 other times prior to this one (in the past 6 months), is anyone's guess. I guess it's better to err on the side of caution. Thanks for your input and comments. I hope you feel better soon.

[Dixiefireball]

maybe its a flare with a uti???

hope you are feeling better soon
sending you hugs and prayers
Rhonda:kiss:

[cookie707]

Rhonda...that's what I was thinking...flare with a UTI, but my quick urine test came back negative for infection. The doc sent it for a culture, so I have to wait and see. It just doesn't seem like too many people have the same problem with "peeing" blood during a flare (sorry to be graphic). If the IVP shows no kidney stones, then I suppose I'm among a small group of people who bleed when they flare. Lucky me!

[arcticfox]

Cookie,

I find that I bleed or spot too when I am in a bad flare...... Tomorrow I have a doctors appointment to see if I need more treatment. I just finished last DMSO treatment yesterday. I am hoping that I can continiue with the DMSO treatments until I move to Calgary. Then I have to go find myself another doctor, gyno, urologist etc. Blah!

Arcticfox:(

[sleepyangel30]

if i were you i would go to the doctor sounds like a uti, i never bleed with a uti though. you will be in my prayers:pray: :angel:

[cookie707]

Arctic Fox and SleepyAngel:
Thanks for your posts. Good to know that I'm not alone in bleeding while flaring...not that I wish that on anyone! But, with IC, we all know that we react differently, but it seems Arctic Fox and I are in the minority. SleepyAngel, I'm glad you haven't bled with your UTIs either! I do tend to bleed with a UTI, but this time, the doc says the urine came out clean (in the office). Hopefully, we'll know today or tomorrow if the culture is neg or positive for UTI.

Arctic Fox...I never tried DMSO...have you had good results? Did you ever do a treatment when you'd been bleeding? The pain when blood is present is sooooo awful...I never bleed without the pain, and we all know how bad flares can hurt...now add the bleeding. OUCH! My uro will do anything I want him to do. If I want to try DMSO, he'll do it for me, but I've been reluctant to do so because so many people end up flaring from the catheter. Don't know which pain is worse...the current pain or the one I might get with a DMSO instillation. Any opinion? Good luck finding a new doc in Calgary. I'm sure someone on this board can probably give you recommendations. I think there's even a Canada message board on this site...you might try posting there and see what happens.

Thank you both again for posting.

[arcticfox]

Hi Cookie,

I just finished my last DMSO treatment Tuesday. My gyno is leaving town (he was the one that helped me get diagnosed down south - Edmonton Alberta) and directed me to see my regular doctor. She wants a chance to talk with him by tomorrow, his last day! I am suppose to call her on Monday if I have not heard from her.

The DMSO treatments have worked for me, just as long as I watch what I eat as well. I have gone for treatment when I was spotting from my period. I had no real problems with the catheder. The only time it is uncomfortable for me is when the catheder is inserted in my bladder and when I am peeing out the solution after holding it. My longest time holding was about 40 minutes I think. On average I was holding the DMSO solution in my bladder for about 15 - 20 minutes.

I am in flare right now only because I have been eating and drinking stuff that is bad for me. I have been eating chocolate and having a couple sips of Pepsi! Serves me right for having a flare! This was doing the night after having DMSO treatment.

Sometimes I wonder about myself!

Anyways, have a talk with your doctor and try to work out the best treatment for you.

Take care!

Arcticfox:butterfly

[cookie707]

Thank you Arctic Fox for the kind words and about the DMSO info. I see the uro on 4/27, and will discuss my options at that point.

I'm sorry you're in a flare from chocolate and pepsi. I know what you mean though...we sort-of sabotage ourselves because we can't resist certain food. I know for me, it's chocolate and sugar in general. I'm CRAVING sugar and I'm sure that's probably what is contributing to this latest flare, or whatever else it may turn out to be.

Do you agree that stress makes your IC worse? I've been under a lot of stress over the past 2 years...but most especially this past 8 months, and I find it a bit coincidental that I've had 3 bouts of peeing a lot of visible blood in the past 6 months. I do believe that the stress is really affecting my IC and that is what is causing my bleeding. Isn't it sad how our stress can literally destroy our bladder? Just my opinion though. I don't believe in coincidences, so I kind of figure this is God's way of waking me up so that I change my stress level.

[holles]

cookie,
a word of advice about the bowel prep for the IVP (although you've probably already had the IVP). get the cherry flavor, chill it without freezing it, drink it through a straw. i've done that prep several times, and that method works for me. i still barf about half of it up, but i used to barf all of it up. (((hugs)))

also, the IVP might not show anything. i had one in may because i was having so much pelvic pain. when i had another laparoscopy in june, my doc also had a uro do a cystoscopy during it. they found "sludge" (doctor's big medical term) in my right ureter. they "roto-rootered" (yet another of my doc's medical words) the ureter, and i felt great after. he said that was probably the source of most of my pain. but for some reason, it didn't show on the IVP. weird.

oh, and to answer your question, i also have bleeding with some of my flares. it's not always bad, but it's noticable. sometimes it's old blood (little black chunks in the urine), sometimes it's not. sometimes i don't have bleeding. but my doc won't let me take macrobid until he's done a culture just in case it is a real flare and not a UTI. he says macrobid will just make the flare worse.

[cookie707]

Thanks Holly.
Yes, I've already done the IVP prep...I didn't even know it came in flavors! Oh well...if I ever have to do it again, I will ask for it. I only take 1/2 the bottle of "liquid barf" because I'm small and if I drink the whole bottle I'm in the bathroom for a week, not to mention sicker than a dog! I'm sure you know what I'm talking about. It's awful. Someone else said that the CT scan is a better way to show stones...if it happens again, then I may ask for a CT scan instead of the IVP. It's good to know I'm not alone with the bleeding though. Thanks for all your info.

[Minni]

Cookie, hi, I may have some answers for you.

But first an intro, which will lead me to it:

It's been a long time since I was last here, because I haven't been officially diagnosed (due to idiocy by the phlegmatic/systemetized UNhealthcare establishment) except for last year when the ER personnel at the local hospital finally dx'ed me with UTI. And I was put on Cipro, blah blah, ad nauseum. Subsequently I went thru the extreme stress of mercury amalgam removal complete with many nutritional regimens, oral chelation & so forth. You better believe, I've tried LOTS of stuff, and will eventually try H2O2 and maybe Rife therapy. But that's beyond the scope of this post.

I'm responding here, because for for decades already, I had been prone to bouts of occasional heavy bleeding, and I used to think it was mainly vaginal, but in retrospect, I'm now realizing that it may have been urethral as well.

At those times I hadn't gone to doctors about it, though within the past year or two, I had gone to both a urologist and gynecologist, complete with the usual tests - CAT scans as well as PAP smear which were all negative.

Ha! (sarcastic)

I've finally come to realize, via the process of elimination, what formula BEST avoids problems:

BAD FOR ME:

Big & Bright CRTs/LCDs (for more detail see: (site advertisement deleted)

Acids, and even, believe it or not, "hypoallergenic" Vitamin C (sometimes acids are OK if counterbalanced with eggs/oil/creams

Abrasive foods, such as oats (worse if not countered with eggs/oils/etc.)

Avoid scalding hot drinks, citrus, acid, pineapple, kiwi, alcoholic stuff, caffeine, strong-tea, coffee, chocolate, nuts, apirin, naproxen, peppermint, yeast, white bread, processed meat. Also avoid corn syrup & excessive sugar or excessive cinnamon.

Stuff containing a hint of raw onions/garlic or virgin olive oil (believe it or not, green olive oil is irritating for me, and even the yellow olive oil IF it's used for sauteeing. The worst, is to sautee onions in olive oil. Also, believe it or not, I find apples irritating, sorta like scouring powder in my system.)


GOOD:

First thing in the mornings (on empty stomach) take approx. one to two TB Black Cherry concentrate in about six ounces pure water.

Do this for a number of days in succession. It works! Alternatively, Bing Cherries are excellent, also in the same format. Avoid taking with starches. It's also very healing if taken right before going to bed at night, but only if your stomach is sorta empty. "Sorta" means that it may be OK to take approx. a TB of yogurt beforehand.

And stick to things which are good for people on ulcer, colitis, and interstitial cystitis diets. To be on the safe side, stick to things for which all those diets overlap. What's healing is Mullein, Pau Darco, licorice, oils (though I personally find the yellow olive oil less irritating to me than the virgin), coconut-oil, dark greens, lysine, cabbage, creamy soups, chicken soup with dill or cabbage added, olive leaf extract, seaweed, mushrooms, whole-eggs, yams, yogurts, mayonnaise, barley, buckwheat, molasses, stevia, black cherries, beets...

Note I'm not sure about Xylitol, I've recently started adding it to plain yogurt as a sugar substitute, but for all I know it may be irritating me. For sure I know that it causes me tongue sores, so it may be doing the same to me internally. As for Splenda, I never tried that yet!

[cookie707]

Hi Minni:

WOW...what a wealth of information you are! I'm sorry you've had so much trouble yourself. Thanks for such detailed and helpful information. A lot of the "stuff" you mentioned I've eliminated...I am allergic to soooo many things..so between allergic reactions and IC, it doesn't leave much room for good food!hahaha I can't take vitamins in any form and you're so right about onions. I love them but they hate my bladder in any way, shape, or form.

I went back to the uro earlier this week and he cultured my urine from the day I was bleeding. It came back showing suspicious cells, so the doc did a cystoscopy to rule out cancer. Not pleasant, but he said he saw no cancer cells. Are cystoscopies really that good where they can tell in 30 seconds if there are cancer cells inside the bladder? He said he didn't see any, so he gave me some Macrobid and told me to just go on about my life as normal and to let him know immediately if I bleed again. So, I guess we will just have to wait and see. The IVP was negative for stones, so I guess I'm still in the same place I was before...no answers. Although, my uro says that my IC does not cause bleeding...so this is a problem unrelated to IC. I, however, do doubt that.

Thank you again for all the info. I'll keep you posted and let you know what happens when I try some of the new things you mentioned.

Many thanks,
Mari

[Minni]

Mari/Cookie you should especially be alert and notice whether excessive viewing of your computer monitor brings on bleeding.

Take it as a red flag - and read the speculations/advice on that site I gave.

Another good thing to do (besides black cherries/concentrate) is HYDRATE throughout the day with lots of room temperature or warm (not scalding) water.

As for abrasive oats/grains/popcorn, maybe that could be mitigated in the form of pancakes, since eggs are mixed into that (and eggs have lysine and a gel-like consistency which may counteract irritating acids & abrasive stuff.

Mullein tea is also very very good - even more so if combined with licorice or mallow. These are anti-bacterial as well as containing a soothingly demulcent consistency.

Not sure there's a PM feature here - if so, I might PM you with some of my sites which may further help you. They're amateur & full of popups (even if chock-full of info) so therefore I prefer not posting them in public. But if it helps you - what the heck.

[dyno]

Please make sure to keep in touch with your Dr. for anything unusual or new as far as symptoms go.

Also remember that none of us are Dr.s and can give advise on what to do. We are all different and even some of the natural remedy's can interfere with our medications we take or could possibly cause other problems.

It is important that you be confident with your Dr. and what he is telling you. I think that speciman's need to be sent to the lab to be sure that there are no cancer cells present. You could always go to another uro for a second opionion if you aren't sure.

Take care and please let us know how you are doing.:kiss:

[cookie707]

Minni & Jolene:
Thank you both for your insight and comments. I did visit the website you gave me Minni, but I don't think I'm exhibiting photosensitivity symptoms. Did you write the webpage you referred me to? There's no name associated with the website that I could find, but it would have been helpful to know who wrote the comments since it was all done in first person (I).

I hesitate to try anything in the form of liquid to ease my IC pain, as pretty much anything except pure spring water upsets my apple cart. I never drink hot or cold water...always room temp. It's a drag to only drink water but it's not worth the pain to drink anything else. If I have to dissolve anything in the water, I usually have an adverse affect. As Jolene says, all of us react differently to things we consume, which is what makes IC such a hard thing to live with. Trial and error are the only things we can relate to one another...what works for you may or may not work for me, but it's worth a shot to get the info out to the general public, which gives people other options. Even though some of your suggestions sound great...for me, since they are vitamin or herbal, my body isn't likely to respond well. However, that doesn't mean someone else reading this post won't find it helpful for them. That's the beauty of these forums. Such a great place to exchange info. It's a great thing when people post what works or doesn't work for them so that another person can be enlightened.

Thank you both for your great comments. I wish I had answers as to why I was bleeding and why my urine culture showed suspicious cancer cells, but it may be another IC mystery!haha

Thanks again,
Mari

[Minni]

Originally posted by cookie707
Minni & Jolene:
Thank you both for your insight and comments. I did visit the website you gave me Minni, but I don't think I'm exhibiting photosensitivity symptoms. Did you write the webpage you referred me to? There's no name associated with the website that I could find, but it would have been helpful to know who wrote the comments since it was all done in first person (I).

Mari

Mari, yes I wrote the site, but as well, did you see the links which were included? Did you read the excerpt from Sumeria.net about researcher Ott?

Decades ago, I might have also said I don't have photosensitivity symptoms, but rather "repetitive injury" from typing. Yet at that time I used to bleed abnormally as well - but I never made the connection that both these symptoms might be from excessive exposure to the monitor. And in those days, monitors had smaller viewing areas.

Since you say you're not photosensitive, I'm curious whether or not you have Achoo Syndrome to the sun? Humor me ;)

I'm also curious - what is the diagonal viewing area of your monitor?

Is it 15"? 17"?
CRT? LCD?
Brand?
What dimness/brightness do you have it set at? Low? High?
Are you able to view bright white backgrounds - excessively - without feeling disoriented in any way?

I'm not saying you necessarily have the issue which I have, but I'm still curious because it may just be that you lucked out by dint of not yet having acquired one of those large viewing area, bright monitors.

Anyway, whatever the case may be, my advice again is to keep to the above diet, and as well, I strongly recommend that you try the black cherry regimen whenever you have a flare. Actually the latter is delicious, so I don't think it should be a problem.

As for what you say about vitamin & herbal - have you tried Mullein ever? If so - how was it? What about lysine? Coconut & flax oils?

Which foods do agree with you?

Please keep me posted re: which diet you try, whether you try the cherries during bleeding, your computer info, etc.

[cookie707]

Minni--I'm leaving town for a few days so don't have time to give you all the specifics on the questions you asked. When I return later this week, I'll let you know all.

Quickly, though, my monitor is a Dell Trinitron 17" (not sure of the diagonal view) and the brightness, etc., is set at factory default (I've never had the need to adjust the brightness). But, I've never had a monitor larger than 17"...it won't fit in my workspace. No, I didn't click on those other links...mostly because I'm working on deadlines and just don't have time, but I will when I get some breathing room.

Thanks for your suggestions on the flare remedy (black cherry)...if I'm desperate enough, I may try it. Unfortunately, I'm REALLY hesitant to try anything that may make the flare worse or put me into one. I flared and bled from Aloe, which is just so weird but that's the way my body reacts to stuff. Have never been able to tolerate teas, herbal anythings (even shampoos and lotions make me itch...when combined with herbal stuff, etc.). I'll keep this info handy for the next inevitable flare!

I have found that when I'm in a flare, as long as I drink LOTS of room temp spring water (cannot tolerate distilled water), and eat nothing by white rice with butter and white toast with butter for a couple days, it all calms down. So, that's been my flare remedy. Not very tasty, but it works.

Thanks for all the info. I'll get back to you next week!
Mari

[ICNDonna]

Visible bleeding should always mean a trip to the doctor's office. When I'm flaring my urine shows some red cells, but visible blood usually means infection. I'm very glad you are being tested to find the cause.

We are in an era now which is similar to my grandmother's day --- lots of folks are trying "natural" remedies. It's important to remember that natural doesn't always mean safe --- and your physician needs to know everything you are taking. One suggestion I noticed in this thread is licorice --- licorice might be okay in SMALL quantities, but I know one person who ended up in the hospital from taking too much --- it stripped her body of some very essential nutrients.

There is diet information in the Patient Handbook at http://www.ic-network.com/handbook/ This is information that has been researched extensively.

None of us is qualified to give medical advice --- we can share our own experiences, however.

Sending healing thoughts,
Donna

[cookie707]

Thanks for the comments Donna. I understand what you mean about everyone wanting to go back to natural remedies, etc., and I have a feeling if I lived during that era, I would probably be dead!hahaha My body reacts to soooo many things...natural and manmade, so I'm not likely to try anything that my doc doesn't supervise. I like hearing people's suggestions, but I know my body. I bring lots of suggestions to him to get his opinion before I try anything. His usual comment is "you can try anything you think might help, but you have to remember there are consequences because your body does not react like everyone else's...so be careful."

I do appreciate Minni's suggestions and I'll ask the doc what he thinks about it all...especially the photosensitivity issue she talks about.

I'm a big believer in the IC Diet from the patient handbook, and if it wasn't for that, I'd be in a heap of trouble.

Thanks for the comments Donna. It's good to get so much feedback and opinions...so many more options when we have this communication.

Mari

[Minni]

Uh, I had composed a response, but then deleted it upon noticing the PM feature, which I'll now try.

[dyno]

Minni,
I was reading your response when you deleted it. I wanted to say something in response. We don't mind a bit for you to share your personal experience but at the same time, we have to remind people that they need to be aware of the risks sometimes involved in using natural rememdies. Mixing natural with medications can cause problems at times and that is why it is important to check with a Dr.

Also with visable blood, there could be something serious going on and no one but their Dr. should be advising them about that and treatment.

I certainly agree that natural treatment has a place in some cases and getting the infomation out here so they can read it and decide for themselves is very important. You have done that by presenting this information and now some people may print that off and discuss it with their Dr.s :)