Managing Interstitial Cystitis Flares (Interstitial Cystitis Network)

[PeteyPoison]

I've lived with this dreaded disease for almost 3 years now and am going to attempt a gluten-free diet since I've heard it's helped many people. I notice that if I'm eating a lot of stuff with wheat in it, sometimes it depends, but it can give me awful flares and within a day or two I feel much better if I don't eat so many gluten products. Has anyone else tried this approach? Also, are there any other men out there suffering with this? It seems a lot of the info I find is more geared to women.

[moneysavingsahm]

I just wanted the victims of this horrible, painful and limiting disease to know that they are not alone. For me, it has taken over my life. It's to the point where I am no longer fearful of dying, because at least then the pain and disease goes away. I would love to know what causes this disease. Sometimes I wonder if my traumatic childhood and the related stress has something to do with my body reacting so harshly to itself. I would love to hear your thoughts. Please email me to talk!!

[moneysavingsahm]

I am 36 and I've had this disease since I was just 23 years old. Initially I suffered from frequency only. But as the years passed, I also started to suffer with: urgency & extreme pain, in addition to the frequency. I can void(go pee) as often as 50+ times in a 24 hour period. The best thing that I did was have my husband quit his job, so that we could have medical through the state and for me to go to a pain management specialist. I am now on full disability and my husband stays home with me.

[supervixen404]

Am I the only one who's been in an INCREDIBLY HORRIBLE FREQUENCY/URGENCY FLARE FOR OVER A YEAR?????I'm guessing yes.

[89ngima]

@supervixen404 hi,apparently not.i have been having the same problem for nearly a year now.

[89ngima]

@supervixen404 hi,i have been having the same problem for nearlya year now.

[icnjill]

@supervixen404 definitely not. My first year was horrible! It takes time and you have to try to figure out what could be irritating your bladder so badly?? Are you following the diet??

[supervixen404]

@icnjill Yup been following the diet for years now. Still have soda and chocolate on and off but see no connection with that and my pain. I'll drink soda and be fine the next day but I'll drink water and feel horrible afterwards..just an example. That's why I dont think the diet makes a difference, at least not in my case. I've had this frequency/urgency feeling for over a year and a half. Longest break was 3 weeks a couple of times but NEVER have I felt like this for only hours or 2 days. :(

[gumpishelf]

Hi Jill. I just want to say that I appreciate so much what you are trying to do, which is to inform people about this awful chronic disease. I was wondering, with a flare up, (I just found out I have IC three days ago and have been on a very strict diet since then) can the flare up still last even though I am currently eating and drinking the right things for over 78 hours?

[icnjill]

@gumpishelf Yes, 78 hours isn't nearly long enough. You've got to be on the diet for atleast three months to really see a difference. The bladder heals very slowly!

[kessevil]

well i always have the blood during a bad flare,and they have looked at my bladder twice and i have no glomerulations,but they always tell me its the blood vessels bursting,but its not just one doctor that has told me this its two uros that i have seen.

[kessevil]

Of corse you should tell your doctor,but i told my uro that i have visible blood when i flare,and my uro did tell me that this can be normal with ic beacause of the blood vessels bursting,and i do not have hunners ulcers,i would never tell anyone not to tell there doctors,but i urge people not to panic about seeing the blood like i used to as this can be normal with ic!!!

[icnjill]

@kessevil Wow, I really disagree with your doctor. Visible blood implies that a fairly large vessel has been opened such as what we would expect in a Hunner's Ulcer. It's so profound that in a hydrodistention it's called a "waterfall" effect The smaller glomerulations rarely produce enough blood to be visible in the toilet bowl. I don't know what else to say except that every doctor that I've worked with always advises patients with visible blood to seek medical attention immediately.

[mayanchild]

Great vid (and you have fabulous hair! :))

[kessevil]

I HAVE BLOOD IN MY URINE EVERY TIME I FLARE,AND MY URO TOLD ME THIS IS BECAUSE ITS THE BLOOD VESSELS BURSTING BECAUSE ITS SO SORE..SO THIS CAN HAPPEN WITH IC!!!!

[icnjill]

@kessevil Yes it can but usually it's microscopic blood. Visible blood in the urine is much less frequent unless the patient has Hunner's Ulcers. Most doctors would agree that visible blood should always be reported to your doctor, especially if you are peeing clots or bright red blood.

[icnjill]

@kessevil Yes it can but usually it's microscopic blood. Visible blood in the urine is much less frequent unless the patient has Hunner's Ulcers. Most doctors would agree that visible blood should always be reported to your doctor, especially if you are peeing clots or bright red blood.

[icnjill]

@kessevil Yes it can but usually it's microscopic blood. Visible blood in the urine is much less frequent unless the patient has Hunner's Ulcers. Most doctors would agree that visible blood should always be reported to your doctor, especially if you are peeing clots or bright red blood.

[tnaknockout85]

I have had flares that have lasted anywhere between an hour and 15 days!

[maggie3622]

I I have had ic for 29 years. Had many surgeries and installations. the only thing that has helped me is diazpam. I no longer have access to it. I am so upset and anxious . the urologist I sa w recently wanted to do bladder transplant but would not write valiuml *I am so upset and do not know where to turn. Do not have insurance. Any ideas how I find a Dr that will keep me on my meds. Have also taken lortab. Now I up all night and so miserabe.

[HeyShayPrettyPenny]

I have had IC since I was 15. Took 3 years to find out what it was. I am now on 4 different medications to help pain. They were a miracle at first!! ... but now I am in constant pain again. My flare up has lasted for 3 weeks now =(

[sandradle]

So grateful to find these videos. I've been suffering for mths + it's beginning to make sense. I no longer think I'm nuts and won't let anybody tell me I am. I felt like something was falling out of me, like I was gonna give birth to an egg + now I understand why. When I told that to my doctors, after a urine test, exam +ultrasound which revealed nothing, I was totally blown off as a neurotic. But oddly, 2 wks after my 1st visit I was retested upon my insistence and it showed as a UTI?

[evannahjoym5888]

I constantly have a dull pain in my suprapubic area. I also have swollen lymph nodes in my groin, hematuria together with extra pain during my period, andddd alcohol KILLSS me. I had to stop drinking altogether. Sometimes even a single glass of wine aggrevates my bladder.

But I don't have burning when peeing. However, I feel the need to pee alot more, and I haven't changed the amount of liquids I consume.. I'm pretty sure I have this. How serious can this get?

[1SWORDJ]

@evannahjoym5888 omg this is exactly what i go through!!! im having my diagnostic lap april 1st to rule out some other stuff also test to see if it is IC either way i see it i am screwed with no def. cure

[MrJredi]

someone help me pls

[MrJredi]

this is probably a waste of my time cause im sure no one will respond but here goes,im a man age 29 had this or atleast the symptoms of it for ten years and its only getting worse. the uroligist (all of them) told me it was the xanax which im not ruling out,but i got off the xanax using valium for 46 days and still had the prob and the uroligist gave me vesicare and told me to go back to the valium which is just like xanax,i was relieved for a month with vesicare a lil now its come back vengence

[brainsbeforebeauty]

@MrJredi it is common in men as well. a mild antidepressant/anti anxiety pill can help but it varies from person to person.

[PeteyPoison]

What about MEN who have IC, like me?? =/ It's so tough to find resources because a small percentage of guys have this thing too, and it's absolutely life-ruining.

[traffictype]

Is it common for people to develop flares later in the day? I always wake up fine, stick to the diet, but start flaring by 5pm for sure. I need an instill almost every night, and there are times that repeated instills of 30cc Marcaine still won't help.

[antoniumcream]

great video - clear and concise info for IC sufferers. We really empathise with patients who suffer with this condition on a daily basis. I wish you all good health and hope that research continues in this area.

We recently had an article published on us on IC Recipes. For information on Antonium UTI/Cystitis Cream visit our website or the IC Recipes site.

[kidofponymaker]

Thank you so much! I was diagnosed in 1992 and I am also in the Many faces of IC and believe it or not, I really didn't know there were two types of FLARES! I guess I knew in a way..but I had not heard it explained this way. Thank you alot. Holly

[AbramacP]

Hi Jill..I am 25 year old female...i suffer from burning in urehtra and sometimes in bladder...it is like impulses that go from my bladder to the urehtra..it all began 3 years ago whren i had ecoli uti which was treated but the burning didnt went away...i have made all the exams possible they are negative to any bacteria,i have never had blood in urine nor high eritrocites in urine. I dont have urgency nor frequency. Do i have ic?

[cheb07]

you can only be diagnosed with IC if they do a cyctoscopy. They put you to sleep and insert a small tube camera and look in your bladder for IC damages. They give you a lot of pain killers and numb your bladder so its no discomfort even after the procedure. I suggest you talk to you doctor about this. Once you figure out what you have and what the pain triggers are, you will very rarely get pain again. Good Luck!

[sweetcitybaby22]

@cheb07 I wish, they gave me no pain relief except a bit of topical ointment :(

[soozans1]

This is great information!!! - and it means that I am on the right track with PT - since I have that pressure sort of pain.

Question: Many times after I pee- I get this 'after- burn'...I burn After I pee..it last anywhere from 5 minutes to hours...

Is that from bladder wall issues or pelvic floor? I eat the same very limited diet very single day...and some days I have no pain until I lay down to sleep and other days from about 3pm on!? Weird!?

Any thoughts on this??

[icnjill]

Pain before urination is usually bladder wall pain. Pain after urination is usually muscle or bladder spasms.. and is characterized by a "burning sensation" because the muscles are working hard and building up lactic acid.. which creates that burning sensation.. usually in the vagina!

[WsternCivilization]

Does baking soda work?

[georgegrasser]

@WsternCivilization It seemed to help me a bit. Aloe Vera capsules knocked out my 8 month every 3 min. flare back to every 20-30 min.

[fayecombs]

Excellent explanation of a flare. I limit car rides to 4 hours. If we do an 8 hour car trip, we stop and spend the night before doing the last 4 hours. The things that have most consistently flared me over the years are travel, coffee, and orange juice. Also, alcohol had to be cut out completely. It's the worst.

I have used the Bed Buddy - microwaveable - hot, moist heat.. I have relied on my Buddy for years. It really does help.

[icnjill]

Ooooh.... thank you!!! I hope you're feeling better!!!

[clickclickcrash]

JILL! I just wanted to take a brief moment to smile and say, "I LOVE YOU!"

Okay, now back to writhing in pain...

[ImreadytoCreate]

ICNJill, I wonder if you could help me. You said in the video that flares normally last no more than a few days to a week. I rarely get pain, but I get frequent/urgent urination that lasts for weeks. Is that normal?

[icnjill]

Visible blood in the urine is much more rare in IC patients... however microscopic blood in our urine (not visible to the naked eye) is fairly common. However, in patients which abuse ketamine, for example... hematuria (i.e. blood in the urine) can be profuse.

[videogamekitty]

I still don't think visible amounts of blood in the urine are rare. I've talked with many people with IC about this who can actually see the blood. And my urine has been red/pink with blood a few times in the past. I'm not sure how abusing ketamine has anything to do with it either, because you can have a lot of visible blood without abusing ketamine....

[kessevil]

i have blood when i flare,its because the blood vessels burst in the bladder thats what the doctors told me...

[videogamekitty]

In your video, you say that blood in urine is not normal for IC patients. But I know that people with ulcers in the bladder can have blood. I had blood in my urine the first time I was diagnosed with IC so it was hard for doctors do diagnose me.

[jaimievaldivia]

I agree with what you said becauce I almost every other time found with blood in my urine and my doctor says its because of my ic.

[Unityspirit50]

I use oil of oregano.. baking soda also ASV *apple cider vinegar with 'mother' i swear by it. my flare ups are coffee. i limit to one to 2 cups sometimes no more. Also meats are another culprit for me.