what do i have to look forward to?

[hisjenn]

i have already been all over the boards, and realized that i haven't introduced myself. and now that i have some questions, i thought it might be a good time to do so.

i am 33 years old... married for almost 12 years... i have 2 children, dd is 10 and ds is 7... i feel extrodinarily fortunate, especially now with my diagnosis, that i do not work outside the home and stay home with my kiddos... i went a year and a half of severe pain without a diagnosis

i had a cystoscopy and hydrodistention on March 22, 2005. i haven't been back for my follow up yet, it was supposed to be today, but my Dr. had to reschedule, so i will go for that next Wed. i am very anxious to learn of my treatment plan and get things underway. i even went to a support group meeting last night that my Dr.'s office just began.

as of right now, i am on no medicines at all. i have been taking Vicodan or Darvocet for the pain for the last 6 months, and now that i finally have a diagnosis, it's the one thing i look forward to... finally being able to not take narcotics.

right now, i simply cannot function. i am tired all the time because i am in so much pain, that i cannot sleep and finally do so only out of exhaustion. ( usually around 5am in the morning, and i am up by (9:00 or 10:00 in the am)... when i am awake, i either sit on the computer or in bed with the heating pad... i have no energy and it literally takes my breath away to walk to the bathroom. Pain meds help the pain be bearable, but i am never pain free. and my pain extends up into my left side, just at the base of my rib cage, in the front and in my back, as well as the pelvic pain that goes from hip to hip and the knife stabbing feeling in my urethra all the time... then the pain with the full bladder, or the spasms with the emptied one...

if i do have a "feel good day" and i try to get something done around the house, i spend the next 2 or 3 days paying for it, becuase any activity at all right now intensifies the pain.

so, here are my quesitons:

what was it like for you before you started treatments? and how have the treatments brought that under control for you? what could you not do before, that you can now do and enjoy with the help of the medicines? what is a normal day like? and then what is a flare like? (( i kinda assume that what i am feeling is just like having a constant flare, but i dont' know for sure)). does the medicine help the burning with urination, the urgency and the frequency? now that you are on the medicines, do you still have to watch your diet? and does anyone use prelief to help with the diet "cheats"?

i know this is alot of questions, but i am so anxious to know what i could possibly have in store for myself. and i know everyone is different and everyone will respond in different ways but i can dream, right? *grins* thank you all ahead of time for taking the time to read and respond.

~jenn~

[Betsie]

Welcome!

I have posted to you already I believe. I am curious about a comment you made and am choosing to keep it there or you will be snoozing through a novel. :rolleyes:

as of right now, i am on no medicines at all. i have been taking Vicodan or Darvocet for the pain for the last 6 months, and now that i finally have a diagnosis, it's the one thing i look forward to... finally being able to not take narcotics.

I am not so sure that "stopping" your pain meds due to the fact you have an official Dx is a greart idea...unless I am misunderstanding this, you still suffer from pain. but it sounds like you are letting it get ahead of you. I am not quite sure where the two trains of though combine....with a dx, it is still probably a good idea to deal with the pain.

As a mother of young children I know this is soooooooo difficult. I used to even with grown kids, wait until evening...having a back up driver helps...anyway, I took my pain meds at night....but there were many days I suffered...I am now trying long acting meds. I love the concept, but am not sure if I like the drug itself and the long-term Rx schedule....I guess I do like treating pain as needed..so we'll see. :help:

I am not pushing pain meds, I hate them myself and have struggled for 3 years with the emotional aspect of taking them....but what I think I am hearing is you remain in pain, but don't take available meds due to having a Dx....please feel free to correct me, as I am pretty confused. :hmm:

Don't be in pain unneccesarily....or let me know what part I mixed up. Again, welcome. :welcome:

[ICNDonna]

I'd have to admit that before I started treatments, my life was pretty much like yours. And I absolutely have to watch my diet. I do sometimes cheat, but not often --- I have learned it just isn't worth it.

Warm hugs,
Donna

[Katrina]

You have good questions! I like them a lot!
what was it like for you before you started treatments? I was in constant severe pain...moving at all hurt...especially car rides....major pressure from even a very short time after urinating.....major major feeling of having to go all of the time....that intesified the more I had to go to a point where I had tears. I don't know how high my frequency was but I felt like I was going nuts with the frequent trips....never ever sleeping through the night...getting up frequently...and struggling to fall asleep even though I felt more tired than I had ever felt before. Misserable as well...I mean the stress from the pain and how it effected my life was unbearable at first.
what could you not do before, that you can now do and enjoy with the help of the medicines? I couldn't take car rides beyond 10 minutes without needing a stop. I am able to spend a full hour in a car now on good days with no problem. I couldn't lay on my stomach even for short periods of time...I still can't spend a whole night that way but I can at least spend short amounts of time like that. I couldn't even take walks which I can happily enjoy now. I couldn't wear jeans or even anything with ellastic...I was practically overhalls only. Now as long as it isn't too tight I can usually handle it for a few hours...although I have shrunk a lot so my clothes are looser fitting. I couldn't have sex at all ...and if I tried I flared for such a long time after that had regret and odd feelings about the whole thing. Now although sex is far from perfect I can do it and have a lot of things I do to prevent a long terrible flare...I am usually successful.
what is a normal day like? Not really sure how to answer this question since I am multi diseased and although my health effects everyday...not sure how IC alone does. A normal day is TV, computer use, small amount of house work, and making sure I eat. Ofcourse bathroom trips and strict diet are a part of each day too.
[/QUOTE]and then what is a flare like? Ice, heat, flare meds and herbs, lots of bathroom trips including wearing a diaper for those not really needed trips, stricter diet, more calcium, and when not at the bathroom probably in bed watching TV and not much computer time.
do you still have to watch your diet? Yes I do but I had symptoms for 10 years before diagnosis...and just because I still follow my diet doesn't mean I don't cheat more...and ofcourse since I have usually responded to treatment for a while...I keep working on finding the right combination of treatments...there is a lot I haven't tried...but each thing needs to be given a chance.
and does anyone use prelief to help with the diet "cheats"?
[QUOTE] Most definatly!

Like you I know well what it is like to actually feel like just a trip to the bathroom is very exhausting. Since I deal with dizziness as a side effect of some of my meds I sometimes feel it isn't worth it since pain is normally under control with IC. Enjoy your children...and thank the Lord for them and your possitive attitude!

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.
__________________
:grouphug:

[hisjenn]

thank you for your reply Betsie!!

sorry that i was so confusing LOL... i tend to know what i want to say, but it doesn't get out of my fingers *grins*

when i said i was on no meds at all, i meant that i was not on anything for the treatment of my IC. i haven't started on elmiron or the DMSO yet, and not really sure exactly what medicines my Dr. will do.

i have not stopped my Darvocet or Vicodan... no way! LOL i couldn't function at all if i did... unfortunately, those are my best friends right now, and it's my goal for the elmiron, instillations, whatever the treatment is my Dr. has in store for me, will work and i can eventually not need those... but i see that as something that is still months away... 3 to 6 anyway, from what i am reading, and if it happens earlier, great and good for me, but i will not expect it.

but that is actually what made me ask all these questions in the original post... wanting to find out... will there actually be a time that Darvocet or Vicodan will only be needed for flares and not on a daily basis?

i agree, psychologically, having to take pain meds has probably been one of the worst things i have had to deal with

Donna.. thank you... it helps to know that i may be able to cheat one day tooooooo! i miss so many foods, but it is getting easier. i am still in the beginning stages of the elimination diet... still not really adding anythign back yet. waiting to get treatment going for the IC first. if this is medicine i will always be on, better to find out what foods i can have once ON the medicine. thanks for giving me that to look forward to!

Katrina, thank you for your post... it's inspiring! i can't wait to be able to make the trip to my mom's that is 2 hours from me! it gives me hope!

[Portia17]

Well before i got my official diagnosis of i.c. i had 24-7 of pain and i mean pain.

I have been taking all my meds my diet and had my dmso treatment. I am sorry to say but I am still the same pain I am in.

So now tomorrow my pain mgmt doctor is of course going to give me stronger meds than percocet, prob start massage therapy and my urologist nurse is going to change the bladder treatments to something else.

I do hope everything works out for you but if it does not I guess like me there is something else to try.

As for pain meds, there is no reason why you should not take them. If you were diabetic you would take medicine for that as an example.

Hope it works better for you the 1st time

Hugs
Mary

[kadi]

Hi there,
(Katrina, I liked how you did your post so much - I'm giving my version of the same....:) )

What was it like for you before you started treatments?
I was completely miserable. I felt like I had to void all the time. I was completely unable to sleep due to having to go to the bathroom every 10 minutes. I was probably voiding 50+ times a day. I was doubled over with pain daily, could not drive, eat (nauseated due to constant pain & fatigue), work, wear pants (any pressure on my abdomen made everything worse), even read a book (couldn't concentrate, my bladder spasmed so badly).

What could you not do before, that you can now do and enjoy with the help of the medicines?
I can now work, drive-- for several hours if I want, eat, wear pants, read, exercise moderately (yoga, walks, elliptical trainer, rowing machine), travel (took trips to North Carolina & Houston recently).

What is a normal day like?
I get up around 6:00, go to Starbucks & get a steamed milk which I have with a homemade scone, when I get to work. I am a high school teacher. I teach 2 morning classes-90 min each, have a lunch I packed from home, then teach one more class. I work in my classroom, grading papers, writing lessons, calling parents, etc til 3:30 or 4:00. I drive home, have a snack, take a walk or go to the gym or yoga class. I have dinner, pack a lunch, talk on the phone, read or do crafts projects & watch far too many Law & Order reruns... Most days are like this.

What are flares like?
I do have occasional "flare days", but those are what my "good days" were like a year ago. On those days, generally related to my period, I do stay home, rest under the electric blanket, take Pyridium & pain meds, with an ice pack on my abdomen... I'm usually very pessimistic those days and inconsolable. I get panicked that the flare will never end & I'm not very reasonable, though I'm working on learning to take it one day at a time... I've missed 10 days of work since Sept due to flareups... Considering this is April, I think it's okay. (Last year I missed around 30 days of work...)

Do you have to follow the diet?
Yes, I have to be very careful with the diet, but I consider it worth it for how it helps me feel good. And, as a dear friend on this website told me, it doesn't have side effects & isn't expensive...

Use prelief?
Yep, I use prelief whenever I eat in a restaurant. I use prelief to have a 1/2 tsp of ketchup with my fries or 1/2T Ranch dressing on my salad. I also use prelief when I drink my low acid coffee with milk.

Hope these answers are helpful to you and really hoping you have better days soon! :kissing:

[vm]

Before I found a treatment regimine that helps me, I was miserable. I always felt like I had to pee - and nothing seemed to relive that feeling. On many days I had to pee every 15 minutes and I ALWAYS had an awareness of my bladder. It always felt inflamed or something. I couldn't imagine living the rest of my life like that. I had a newborn baby and a 3 year old when my symptoms started...

After about a year of experimenting with meds I had real, real relief. That got better and better the longer I was on all those meds.

Today I rarely flare. Rarely and when I do it is mild. I pee about every 2 or 3 hours, many times longer in between. I am prone to UTIs so I tend to go often still b/c I don't want the urine sitting in there too long. But I have gone 5 or so hours and been fine.

So, most often for me a typical day is no symptoms. I can now eat whatever I want to, but in the beginning I was very diet sensitive and watched what I ate like a HAWK. I was very, very strict with myself. After being on Elmiron, in particular, for a number of months I was able to add back in more and more foods.

Life when my symptoms were bad was pretty rotten, but even before the symptoms got better I was getting to a place of being able to accept it most days. I tried to think of people who live/lived in horrible circumstances and somehow rose above - people in the Holocaust - just people who somehow kept their chin up in what seemed to be intolerable situations. I prayed to be like that and to be able to accept the IC, but still prayed for the wisdom to find ways to alleviate the symptoms.

[Betsie]

Hi Jenn,

Please don't apologize...

sorry that i was so confusing LOL... i tend to know what i want to say, but it doesn't get out of my fingers *grins*
This from someone who can start in the middle and try to make her point from there in 10 different directions...LOL. I had a feeling I had misunderstood you.

To answer another question and respond as well....I too survived with my pain meds pre-Dx. I survived after as well....but slowly that all changed and the answer for me at least was YES...I was able to make them less of a focus.

I am likely in peri/menopause...having periods is the worst and I had 3 this month...so not only did I become hormonally challenged, my pain just refused to go away-in order to take less Percocet (loaded with acetometiphin) we are trying long acting pain relief. The jury is still out for me...it is so easy to take, but I am not sure it hits the pain that I experience...so maybe we are dealing with more of a neuropathic pain. who knows....giving it a fair trial.

My Dr is wonderful (primary) so he is willing to play around to find the right combo-right now hois hope is this will take me into menopause, which should on it's own at least get rid of menstrual flares...my worst!

I am fortunate...I only take Elmiron, and without having tried any other in the combo, I am able to know it is the elmiron for sure....just be ready for being patient...it does take sometime to kick in.

Hope you get workable solutions and soon. I would be happy to just leave it at elmiron and throw out everything else...but, that is me 3 years later, not me when I was where you are at the moment.....Good luck! :)

[Sarojini]

I know that I was miserable before I began an effective treatment plan -- much like what the others have described. However, I still use pain medication to keep my pain under control, and you might too. It all depends on how you respond to other treatments for IC, and I hope you do well with them. I can tell you that my IC symptoms are MUCH better right now than they were before diagnosis, and there is plenty of hope for you too. Good luck :grouphug:

[traceann]

Yep, Katrina great post style, I too am going to be a copy cat!! (of sorts)

1) What was it like for you before you started treatments?
Miserable, and the misery came on gradually...started with just urethral troubles, and blossomed into full blown IC "party" all at once -- weird, lol. I believe it was my intial big flare, whew, it was hard to get it under control at that point! I am not a patient person for this kind of stuff (I am now though, I've learned I have to be!). I didn't realize it, as I wasn't keeping track like I am now, that I was peeing 20-30+ times a day! Ugh! :toilet: I was in some kind of pain 24/7, had panic attacks - especially when I'd wake up STILL in pain. Yeesh, dark days indeed!

2) What could you not do then, that you can do and enjoy now with the help of medicines?
I can now sit comfortably, lol, not have to many car-trip troubles, go for a few hours some days with out having to pee, sex life is back to normal - whew! There's probably more, but I am pretty lazy in the winter, lol!

3) What is a normal day like?
Pretty good nowadays, honestly. Start the day out with my breakfast of champions, Elmiron and Ditropan, lol. Drink my Postum (coffee-like beverage, have really grown to like it with sugar and half and half!) Get ready for work, and hit the road. I come home for lunch (cheaper and easier to make my own food, no worries that way!) back to work. Then home for the evening , have my Elmrion and Ditropan "snack", lmao. Think about dinner, :biglaugh: I try to get to bed at a reasonable time, but never seems to happen that way, always 12:30 before I get to sleep, love to read in bed and write in my journal, if I am feeling iffy, I have my trusty heating pad draped across my bladder! Finally down to an average of 12 pees a day, :woohoo: Way better than the 30+ last November!

4) What are flares like?
I have to agree with Kadi, my flares now are what my "good days" were just last fall, crazy eh? When mine is aggrivated (usually from food or hormones, lol) my frequency goes up, and the "pressure" shows up, a kind of painful pressure -- feel like I have to go all the time regardless of when I last went, and I also get some pretty strong urethral/bladder spasms, enough to catch my breath sometimes, yikes. Sneaky little devils, feels like someone is pinching my urethra and it kind of stings. Nothing I haven't been able to deal with so far though, if they won't quit, sometimes drinking a tsp of baking soda in big glass of water helps, or sitting down for a bit. I have come to be able to determine ovulation and where I am in my cycle by how my bladder is acting! :biglaugh:

5) Do you have to follow the diet?
Yep, for me it's a huge tool in keeping me feeling pretty good. I started with the elimination diet, following the list/chart on this site here. I am still adding in and trying new foods all the time, it's slow going -- but has been worth it!

6) Do you use Prelief for cheats?
Yep again. I use it whenever I eat an "unknown" to me (as in how my bladder will tolerate it) and I use it to cheat to have a tbsp or 2 of tomato sauce on my pasta once a week. Usually I have been strict all week, so I could live it up and have a small amount of sauce! I use it to enjoy some low acid OJ (I still dilute it down), and on Friday nights when I go out with the girls for a cocktail, I let myself have one Jim Beam on the rocks, and that's it. I can make that drink last me 4 hours, lol!!!

Hope my experiences help you out a bit! I started the Elmiron in mid-November of last year, and the Vistaril (antihistamine hydroxyzine) in December of last year. So, all in all I have come MILES from where I was feeling last November it's amazing. Although, my sweetie still says he thought we'd see more positive results by now, and I looked at him like he lost his flipping mind, I have come soooo far! I suppose it's hard for him to see me in any sort of discomfort at all, so that's where his comment came from, but let me tell you, I will take this any day over what I had to deal with last fall!!!!

Hugs,
Tracey :)

[melanie626]

Hi and welcome-
I never had pain until my recent flare, but it for me was like starting over. I have found that prelief hasn't worked well in the past, but I am going to try it agian now....I have also used Tums to help post cheating food. I have found the diet really helps.

Talk with your MD and get a plan....a plan for how your going to approach this...it is so true everyone is different-

GOod luck and welcome'

Melanie

[DanaW]

Hi! :)
My IC was gradual for many years until the summer of 03'. In Jan. 03' I lost my Dad to a car accident. I believe the stress and grieving took a tole (sp?) on me. I remember taking a multi-vitamin (liquid) and bam! The pain was there and it hasn't left....I was dx'd in Sept. 03'. During my Hydro-Distention my bladder also tore. That may be why I got steadily worse? Who knows. I started on Elmiron. I had to stop after 3 weeks bc of headaches. (but, most people can tolerate it) Then, DMSO. I had 3 treatments and my pain increased. Since my ER visit, that first time, I was given a prescription for Percocet. I was still working at that time, so, I only took it in the late afternoon and evening. But, when my pain increased so did my pain meds. But, I knew that I would not have any kind of life if I didn't have them, thank god. Anyways, luckily, my Uro. has been treating my pain. Recently, I was started on OxyContin. Which was fine for abour 10 days, then, I got another long flare. My flares usually last 2-3 weeks with a small break in between. So now I am in the process of getting help with a Pain Specialist. (long story! lol) When I flare I have the urgency, frequency, and pain. Pain is 24/7 for me. But, I don't think I am the norm. For most people, the different treatments really help. I hope you are one of them. Have you ever tried Pyridium?? I take a prescription Pyridium when I have the urgency/frequency, especially at night. If you are having trouble sleeping and staying asleep you may want to ask your Uro. for Hydroxyzine. I take 2-25mgs. at bedtime. It will make you drowsy enough to sleep. Best advice I can give you is to have hope! Most people do respond to treatment. You just have to be patient. And, take your pain meds,,,,if you need them!! Take Care,

Dana W.

[hisjenn]

thank you, everyone, so much for sharing so freely!! this helps so much and thank you for the wonderful words of encouragement!