flare duration and hope

[nara_87]

hi yall.
i'm in a flare that doesn't seem to have an end in sight. i don't have a lot of pain just extreme urgency and it's driving me wild.

how long does your flare usually last?

i think this is my longest one. prior to getting on proper meds i felt bad everyday but somehow learned to train my bladder and was able to hold the frequency urges for longer periods of time. but this time it's sooo hard. i've resorted to wearing oxytrol bladder patches that you can get at a drugstore and they help a lot but 1 patch only lasts for 4 days and there's like 8 patches in one pack and it's expensive as all hell and i'm so tired. every time i take the patch off my urgency comes back wild. before, my bladder would at least show signs of progress in healing but this flare has not budged. i haven't been well on the diet but i am starting tonight. i've downloaded the IC diet app and am trying to familiarize myself with friendly foods. when my medication works - it works so well that nothing irritates me so it's always hard for me to stay on an IC diet. i'm kicking myself so hard right now for not being more diligent and having more self control with the foods i eat. i feel like i did when i first had IC symptoms and my life was in turmoil. except this time i have meds to help me and they aren't.

what other options are there for me? besides elmiron and elavil. i'm on elmiron 3 times a day. i only take elavil 10mg as needed, but this time it's not doing much but giving me anxiety. i'm on glucosamine supplement which works like magic usually, but not now. i started taking an antihistamine again and i'm also taking 2 desert harvest aloe pills for a week now. tried to take 4 but it increased my urgency? weird. i know you can get meds instilled into the bladder but that seems so invasive and i'm afraid of having my urethra spasm after and make things worse.

god, i wouldn't wish this disease on my worst enemy. seriously. any help, advice would be so appreciated. thanks guys.

[MelindaP]

Believe me, I understand! I always say the same thing! I wouldn’t wish this on my worst enemy! Sounds like you are doing all the right things. I’m on Elmiron too but still have flare ups (having one now). I just make sure I drink a lot of alkaline water and have a bit of baking soda in water 3x a day to alkaline my system. I tried the aloe Vera pills but they bothered my bladder more so I stopped. 10mg of Elavil is not that much. Maybe ask your uro to increase it for the time being? Also Uribel (turns your urine blue) may help as well. This disease is so tough to figure out! Seems like your bladder is irritated and it just needs to calm down. Sometimes it’s a slow process. Hang in there!

[greenredhead]

Some of my really bad flares have lasted a couple months. If I'm having trouble coming down from a flare I switch to only drinking Evian bottled water, will increase my elavil by 10 mg, and only eat foods that are soothing during a flare (they are the foods with a + sign by them on the food list: https://www.ichelp.org/wp-content/up.../food-list.pdf. (lots of vanilla ice cream, lol) Once I feel like I'm closer to my normal baseline, I add my regular foods back into my diet. If you're not quite sure which foods affect you, I'd recommend reading about an elimination diet. Here's a link with more info: https://www.ic-network.com/interstit...ination-diets/. I did version B years ago. My main IC symptom is pain and I have had a couple bladder instillations. Shortly after having them done I would have bad urethra pain and urine retention. However, the next day I did feel like my bladder was numb and I went half a day without needing to urinate. So far, the pros haven't outweighed the cons for me to get them done more regularly.

[MelindaP]

I forgot to mention that I have had instills done as well. In fact, doing one tomorrow. I always have them put lidocaine in my urethra first. Then I insist on a pediatric catheter. I take 1 doxycycline after to ward off infection and a uribel. I can hold my instills sometimes for as long as 5 hours. I really don’t get too much urethral pain from them (and my pain is mostly urethral) but have been having bladder discomfort with this flare. Jury is still out how much they help, but I tend to do a series of eight installations, once per week. Eventually my flares just seem to go away. Not sure if the installs help this or if it’s my careful diet and drinking alkaline water?

[nara_87]

thanks for all the great tips you guys. i really appreciate it. i am still hoping i can get this flare under control without having to resort to instillations because i've never had that and my IC seems so mild i really don't want to irritate the urethral area, but it's all a guessing game and patience game with this illness. you never really know til you try it.
in the beginning of march when this flare first started i took the elavil 10 mg because i've had good history of it helping calm the muscle spasms, but this time it really barely worked. i upped it to 20mg and had a bit of weak urine stream and then unfocusing in my eyes and higher blood pressure (yay.....). so i went off it and just have been on the elmiron 300mg daily along with the glucosamine hydrochloride 1,000mg and the hydroxyzine hydrochloride 25mg.

i've definitely gone back on the diet and am trying to be more strict. i always end up being so lax with my diet because once my meds kick in i can eat whatever i want for months and i can never tell what flares me until it's too late and then everything flares me lol. my self control is bad so i really just need to keep reminding myself my bladder is broken and not get too relaxed when i'm doing well. the one thing that has been helping my urgency has been oxytrol overactive bladder patches. i apply the patch on a lower pelvic area and it provides relief, but they're just so expensive i'm hoping i won't have to use them forever. sigh. i'm really interested in pelvic floor stretches because i have a lot of tension down there, but again that's out of pocket money i don't have right now. this disease is so expensive to maintain it's depressing.

[ICNDonna]

One thing I suggest is to keep a diary, listing time of day, everything that goes in your mouth, urinary frequency, pain levels, activities. That gives you a reference to consult when you flare --- and possibly be able to identify exactly what brings on flares. Then think of your bladder irritants the same way you think of a hot stove burner --- you wouldn't even consider holding your hand on a hot burner on your kitchen stove --- so once you learn exactly which items cause bladder pain, consider those items as red-hot burners and DO NOT TOUCH!

Donna

[nara_87]

Yes indeed! thank you Donna. I have started a log of how i feel, the foods i eat and my bathroom trips. in there i include my IBS symptoms too because that has an effect on my IC. i am being much more strict this time around and coming to better terms with my illness and the fact that my bladder is not okay and i need to really tend to it. it's easy to just resort back to the old foods and ways once you feel better, but that's not going to help me heal in the long term and as i'm seeing now - my bladder is ****** off at me lol.

one day at a time.

[beamersmom]

Hi Nara. Am wondering how long you have had IC and if you think seasonal allergies may have an effect. I have had IC for over 10 years now, and the last several years I've noticed that March and April things always get worse (I live in central Indiana and spring is definitely coming). In November, I usually think "WOW, I must be doing something right because my IC is actually getting better!" But come mid-March, I feel like nothing is helping, and I'm doing the same things! I also have more urgency vs. pain, because peeing relieves the discomfort, but I'm doing it all the time. I have upped my Hydroxyzine, and it helps way more than taking more pain pills. I have been advised to see an allergist, but they always want you off antihistamines so they can do skin sensitivity tests, but I wouldn't even be seeking their help if I could tolerate not taking antihistamines. Antihistamines work on the mast cells in the bladder. If you can relate to any of this, maybe finding an allergist would be a good idea.

[nara_87]

i got my IC symptoms end of september of 2016. years back i always used to get sinus congestion at least once a year. and during the years 2014-2016 it escalated to several times a year and right before my IC i actually had a sinus infection and took an antibiotic that broke me out in hives and shortly after my IC began. i always thought mine was slightly allergies related, but i'm not for sure. recently i feel like my IC is also pelvic floor related and unfortunately antihistamines aren't gonna help w/ that but i'm still on one. i stopped taking them (50mg) for 6+ months cause i was trying out an antidepressant and those 2 combined gave me baaaad anxiety. i thought about going to an allergist but finding the time to talk to my Dr and get a referral i always end up forgetting and once my symptoms ease up i never follow through. so much with this disease feels like just playing experiments w/ your body lol. i'm so over it. thanks for the suggestion. is it possible for your IC to be like mast cell, pelvic floor, AND nerve related? cause i swear that's what mine feels like.

[Taradise1392]

I used to run to my uro everytime i got a flare for an instill. They definitely work quickly but are way expensive. So I normally just concentrate on the diet, drink some baking soda water, do my pelvic floor exercises double and I can normally get out of them myself. Takes maybe a few days to a week. Over time I have learned what my bladder will hate (caffeine, artificial sugar, lemon, tomatoes) and just try and stay away from those! Hope this helps <3

side note: Dessert Harvest Aloe Vera pills also increased my urgency! I swear they're a diuretic because they really made me go! I stay away from all supplements except cystoprotek! But everyone is different.

Sending encouraging thoughts!
-Tara

[nara_87]

i haven't been on here in a while, but just wanted to update that my flare is slowly going away - months later. the desert harvest aloe vera pills stopped making me run to the bathroom even more when i decreased the dosage to just TWO a day. i also have been wearing the oxytrol bladder patches and they curb the urgency by a lot. though they do leave marks on the skin and can cause itching and irritation. i'm currently stumped on having to stop two of my most potent and helpful meds and that's a bit draining ........ but off to do more medication/supplement research and hope i find a combination that works for me again. thanks guys for the happy vibes and good suggestions.

[ICNDonna]

i haven't been on here in a while, but just wanted to update that my flare is slowly going away - months later. the desert harvest aloe vera pills stopped making me run to the bathroom even more when i decreased the dosage to just TWO a day. i also have been wearing the oxytrol bladder patches and they curb the urgency by a lot. though they do leave marks on the skin and can cause itching and irritation. i'm currently stumped on having to stop two of my most potent and helpful meds and that's a bit draining ........ but off to do more medication/supplement research and hope i find a combination that works for me again. thanks guys for the happy vibes and good suggestions.

Thanks for the update. Glad you're doing better.


Donna