need your help please

[sweetangel2080]

Hi all,


For those who don't know have worsened IC symptoms for months now and docs didn't know what to do but amitriptyline(elavil) 10mg- then 20mg helped the constant urge so as to give me a few hours relief and after a hydro and a few weeks on the amitriptyline was feeling like I could deal with a few flareups a day and night.

Then ran out of Elmiron and got worse- I thought it was due to that, so fought to get back on it(doc thought it wasn't helping)

Was told to increase amitriptyline as needed - 30mg helped a little more, but still flaring just no constant urge just flareups of urgency and frequency
ie relief till 11/12 then flare flare flare for 3 hours etc

Got back on Elmiron a month ago and week before last - out of nowhere for 4/5 blissful days had little symptoms. Was amazed - for over a year not been able to hold more than 200ml and that was maximum - my voids have been 150 to less than 50 off the Elmiron.
So was feeling good frequency wise and no urgency so measured and was 350ml! Stayed this way and got to do loads of cooking, cleaning and cleaning and since then - over a week- been FLARING big time.

Am soooo disappointed and have no idea why so have come on here.
I have been bad and off work for 8 months now so used to flaring and one step forward with a few hours relief and lots of steps back 2 hours later.

It's just sooo hard to stay optimistic - was over the moon in Dec when I starting feeling a little better ie constant urge gone and last week when I had almost no symptoms apart from a little urgency and irritation for half an hour after voiding.

Have NO IDEA why though - I have tried to go back to a diet of no foods on the IC no no list although my diet has not changed - had the odd migraine and those meds exacberate symptoms but not this much

Am on here at 4 am now, as bladder is soo bad that tramdol, pyridium, bicarb and heating pad not helping! No infection though as did a dipstick test and will hand in a sample just in case but it seems like a flare as symptoms wax and wane........

am extra upset as have been living with parents as symptoms bad so can't work or support self and do all househould stuff - was getting back to doing little things like local shops as long as loos nearby but been stuck indoors all week as urgency and most of all pain is soo bad. Parents are away on hols and it's homed in on how little I can do when flaring like this

sorry for the pity party!

[Roxie2007]

HI! I get up at 4:30am for work ugh! But saw your post.
Sounds like you are having a major flare. You said you were doing better.....back to doing house work etc.....and then said you had to 'get back' on the ic diet. Maybe you were over doing it......stress is a factor in IC and also may you ate something that triggered the flare. Usually if I eat "a no-no food" 2 days in a rows (can be different no no foods) it'll cause a flare. IC bladders can only take so much irritation before they flare. Also having to go off the Elmiron didn't help matters either. Hopefully being back on the diet and getting some rest and taking the meds will help you. Good luck to you! Roxie

[ICNDonna]

First of all, you need to stay on the diet, even when you are feeling your best. It's what helps you feel good. If you keep getting flares and can't figure out why, you might try keeping a diary for a few weeks, listing what you eat and drink, along with times, activities, etc. You may be able to zero in to what is causing your flares. Be sure you are drinking enough water.

Donna

[jen74]

Can IC cause severe pain regardless of being on the IC diet? I eat very bland and stick to the diet and still always have bad pain. Diet does not seem to help me. Is this normal?
I basically eat the same thing every day. I eat 1 gluten free plain waffle to breakfast. Then for lunch I eat some cooked carrots, 1 slice of gluten free brown rice bread, and maybe a piece of chicken luch meat. Then for dinner I eat some baked chicken,or turkey, with some vegis, and maybe some mash potatoes or something. No spices at all. I will also occasionaly eat a half of a pear. I have cut out all bad things and still have pain all the time. ANyobe else still have severe IC pain regardles of following the IC diet?
Jen

[ponytail]

Jen - I know this sounds weird but try cutting down on your meat - I improved somewhat by reducing the meat I ate. I read somewhere about there being a lot of uric acid in meat - but somone more knowledgeable can explain, or can correct me. Anyway, I also benefitted from having porridge oats for breakfast as that has been very soothing. You could try swapping meat for fish.

[amartaingirl]

nuts?

i too think its something you ate
peanuts are a big one for me.

drink lots of water..and pee it out girl


frequency is my main problem
if its something i ate...i drink 1 gallon on h20 and pee for like 6 hours
then i usually feel better.

azo & detrol la..as needed
see to help get me some sleep

and sometimes..an extra elmiron helps w/ frequency too

[sweetangel2080]

thankyou, yes I will try and go back to a strict IC diet although the only bad things I had was a glass or two of peach squash and a chocolate.
Yes, you could be right - normally one bad thing is okay but a few......


I have had one thought - about 10 days ago had a different brand of elavil - I noticed as they were bright blue - looking at the packet it says it has E131 dispersed blue. E133 brilliant blue and E171 titanium dioxide

my normal elavil tablets have e171 titanium dioxide and e132 indigo carmine in them

have no idea but will try and go back to the others and see what happens.

Anybody on here know about colours and reactions? Then again, maybe I am clutching at straws.

Also does anyone take tums here and are the assorted fruit ones a no-no?

[Roxie2007]

HI! I can't take the assorted fruit flavored tums.......they have citric acid in them.....major flare material! Citric acid's in a lot of foods, drinks and flavored medication. Roxie

[jen74]

What kinds of foods are safe to eat when you cannot eat any gluten?
Jen

[jen74]

Hey Roxie,
What is MSM? Where do you buy this?
Jen

[Roxie2007]

HI Jen, Here's the website where I buy the MSM gel www.jacoblab.com It can explain what MSM gel is and how it works. It's helped me tremendously with the urethra pain I've had for the past few years and I haven't had a flare since I started using it 3 weeks ago! Roxie

[Roxie2007]

That's a tough question. I'd go to a store like Wholefoods and look for gluten free foods.......and then read the label to make sure what ingredients are in it. It's not going to be an easy task! Roxie

[ICLori]

I wish I could help you - just wanted to send a hug and say, I'm so sorry you are flaring. I know that flares do end, but that's not much comfort when you are in the middle of one.

Does sitting in a very hot tub full of water help at all? I find it helps me better than a heating pad. And a hot water bottle (moist heat) also seems to help me much more than a heating pad. You know, those red rubber/plastic bags with the screw-in stopper? If you have one handy around the house, you might try it and see if it doesn't help you. I found I had to fill it with really really really hot water to help, but then you are risking burns, so...don't know what to tell you.

I hope the Elmiron kicks back in soon (you know it takes time, unfortunately) and dyes can definately irritate the heck out of the bladder.

Also, and I don't think this is true in your case, just mentioning what happened to me - my bladder sort of became "allergic" to Elavil, and after a couple of weeks of being on it, it started causing me worse bladder pain on it, than off. It caused a huge flare for me! I have no idea why. But I have heard of a few people experiencing that. Doctor thought I was crazy when I reported it to him. But when I went off the Elavil entirely, my bladder pain was better. It was still there, of course, I still needed Ultram and a hot water bottle, but it was manageable.

Blessings, and I hope you feel much better soon,
Lori

[sweetangel2080]

thanks Lori,
well back to my normal brand of Elavil and less irritation today although still flaring but not as bad as yesterday.
I think in my case, my non flare days nowadays are like my flares were last year so kind of feel like I'm flaring all the time but sometimes symptoms can be so bad that can't sit still for 10mins and just that increase in urgency from 10-15x a day to every 10 mins to half an hour can be depressing.
Also after having a little relief for a few days...

hoping elmiron and elavil start working again soon!

I think it could have been the dyes then, as recently have become sensitive to sanitrary towels etc as well and tighter clothes etc whereas up untill last year could wear my skinny jeans etc but lately even joggers have to be loose!


yes a hot bath helps me for that amount of time and my heat pad is the only thing that keeps me sane by dulling urgency and pain.

Wish I could take ultram -I take it when in dire need of it only but gives me the most awful migraine as it wears off.