Newly diagnosed and feeling overwhelmed

[missy_blue7 IC Friend Find all posts View Profile Close missy_blue7]

Hi,

I am new here. I was just diagnosed with IC on Thursday and am feeling completely overwhelmed. I have been feeling bad for over a month and my uro came to the conclusion Thursday that I have IC. Right now I am on Enablex and it helps a little, but right now I am having some really bad spasms and burning. I use a heating pad alot and thermacare pads at work. I have been hanging in there, but don't feel like I have been doing a very good job at it.

How did everybody get by at first? I people tell me that "well at least it isn't cancer" and "that isn't that bad of news". It isn't great news, its good to know what is wrong, but to be told your going to have this forever doesn't exactly make me want to get up and dance. I guess I just need advice, encouragment, wisdom from you more experienced people cause right now I just feel bummed about the whole thing.

Thanks

[GriffsMommy ICN Member Find all posts View Profile Close GriffsMommy]

Oh Missy I'm so sorry that you have to go through this. I know that I was really depressed when my gyn first brought up IC. I was so upset to think that I had another chronic problem that had no cure (I also have endo). It took me some time to adjust but I came to terms with it and I'm sure you will too.
Did your uron prescribe anything else for you. If he didn't give you anything for the burning I would suggest that you get some AZO. It's an over the counter med that you can get to help with bladder pain. It turns your urine orange and it does help with that burning feeling. You're not supposed to take it long term though so I would check with your uro if you have burning alot to see if he wants to prescribe something for you that will help and is safer to take long term.
I would also suggest that you up your water intake if you're not taking at least the 8-10 glasses a day that you should be then start there, alot of us drink more than that. I find if I'm burning, drinking lots and lots of water helps to dilute my urine so it burns less. I probably drink at least 100 oz a day but probably more.
I would also suggest that you check out the IC diet which is available in the patient handbook http://www.ic-network.com/handbook/diet.html
A lot of people find they get their symptoms under control a lot by figuring out what their triggers are and food is a trigger for most as well as stress.
Anyway, I think I gave you enough info for your first post. to the IC network, you'll find a lot of help and support here.

[meme IC Friend Find all posts View Profile Close meme]

Hey! Welcome to the club. IC is really tough to deal with a lot of the time, especially when you have people around you down playing it. No, its not cancer and you aren't going to die from it, but it is really hard to live with a rare disorder that no one but those of us who have it understand. I got so tired of people telling me to drink less or to hold it. Yeah, like that'll really help. At least here we all understand exactly what you're going through. For me, the diet really helped my symptoms, also I became very proactive about my health and just keep trucking from uro to uro to find something that would work. My uro put me on Elavil and Elmiron last year and it helped tremendously. I have very few flares now. Last year the pain and frequency was almost unbearable. I don't think I had a single day where I felt "normal". Just remember that there is hope and you will get better, it just may take a little (or a lot) of trial and error. Coming on here helps too. We're always here to listen and try to help.

[L. Thomas Support Volunteer Find all posts View Profile Close L. Thomas]

Living with IC is not so bad if you don't have pain. I hope you find treatment that helps.

[LeeAnn ICN Member Find all posts View Profile Close LeeAnn]

antihistamines

Missy Blue,

Antihistamines have been my greatest fix. My bladder flares up every spring with all the pollen and stuff in the air. The antihistamines help reduce the amount of inflammation inside of the bladder. If you know for sure you have allergies, you will most likely benefit from antihistamines. I take 4 different ones during the spring! Each one targets a different aspect of the inflammation process.

Recently I started taking the Neurontin for the "nerve pain" element of IC. Omgsh! It has helped soooo much, I wish I would have started it sooner.

Another recent discovery is Lidocaine patches---12 hours on, 12 hours off.

If you are in a lot of pain, ask your doctor for pain relief---i mean narcotics----such as vicodin, percocet, etc. This is another thing I wish I had done sooner. I didn't want to look like a "drug seeker" so I didn't ask until a few months ago. I only use them when it REALLY hurts though, as I don't want to become addicted. Vicodin works for me at a pretty low dose. It doesn't make me spacey or loopy or anything. It just helps with the pain.

If the pain is such that I can't sleep, I find that Temazepam (a sleeping pill) helps me get there.

Up until about 6 months ago I had myself convinced that I wasn't "diet sensitive." Unfortunately though I am. Once I cut out coffee, tea, & soda ENTIRELY I felt better. I wasn't even having much of them. Usually one of the three per day. But I've realized even a little wasn't okay. If you keep detailed records you will be able to figure out what foods irritate your bladder. Start with the list on the ICN.

I miss coffee SOOOO much and unfortunately the herbal coffees and stuff like Cafix give me a flare too.

A lot of people say that once you know it's a trigger you won't want it anymore-------ummmm NOT ME!!! I desperately miss coffee, yogurt, spices, edemame, FRUIT, FRUIT, FRUIT, sigh..........

There are so many medications and therapies that can help you. I hope you find a good doctor who takes you and your pain seriously. If they don't---then don't go back to them. Find someone who will listen.

Before I was diagnosed with IC I secretly wished and prayed for cancer. I was at my wit's end. I though, "Please God, either cure it or let me die." I kinda felt like cancer was either curable or fatal, and that's what I wanted---one or the other. IC to me was the worst diagnosis possible. But I have learned that it can be managed. And now I have a lot more good days than bad.

[KristiV ICN Member Find all posts View Profile Close KristiV]

Lee Ann

That is exactly how I have been feeling. I have pretty much gotten over my daily depression pity parties I was throwing myself. I have also found that it helps to talk with those closest to you. I had a blow up with my husband the other day, but it could have been prevented if I would have just communicated better with him about how I was feeling and what my concerns are. I am still struggling with feeling better, but I at least have some days where I do not think it is that bad. My main problem is burning. It is driving me crazy. I am considering calling my uro and asking for something that could help that.

[leelee88 Support Volunteer Find all posts View Profile Close leelee88]

Well it sounds like these girls gave some great advise so I will just say welcome and if you need anything just let us know

[sandramac ICN Member Find all posts View Profile Close sandramac]

Sorry you have Ic but glad you found this site.You were very lucky to get such a quick Dio ! It took me 2 years in ER's & Doc appt. Same as alot of the other's here.I find it good new's that you got Dio so quick. Hope you will find some relief soon, keep a journal on your pain day's and cycle, Also what foods you eat as well.Have you gone into the IC hand book yet!
We are all here together !
Hugs Sandra

[L. Thomas Support Volunteer Find all posts View Profile Close L. Thomas]

It is driving me crazy. I am considering calling my uro and asking for something that could help that.

Please call. If he cares he will help. If you don't call he won't know. My urogynecologist told me to call about everything. I do.

[kjd ICN Member Find all posts View Profile Close kjd]

Hi WELCOME!!!!

Well I wont lie to you its really hard at first because its the shock and anger of been told you have IC with is overwhelming! I was diagnosed two years ago and I still get upset now but I learn to live with it in time as you become stronger!

I would recommned getting the welcome pack on here to help you and doing a bit of research on IC. I think its important to know that this will not rule your life you will just have to learn to control it but you are still the same person!

dont be frightened and ask any questions you need to

katex

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

to the IC Network.

I absolutely agree that the diet is the first thing you should try. It can be a challenge at first, but it's the single thing that helps more ICers than any other thing I know of.

My IC was diagnosed 32 years ago and, if there's only one thing I can share it is to tell you that there is life with IC. It may take a while to find exactly which treatment options work best for you and which foods and drinks are a problem, but most of us do get there.

Sending well wishes,
Donna

[KristiV ICN Member Find all posts View Profile Close KristiV]

Thanks, L. Thomas. I actually did call and leave a message today to see if I can get him to write me a script for Elavil and I was also going to ask about MSM gel.

[mary124 ICN Member Find all posts View Profile Close mary124]

I will just add my to everyone else's. You were lucky that you received a quick dx. It took me around 5 years and 4 doctors (and LOTS OF tests of procedures) to figure out what was wrong with me. It now has been over 15 years and I do pretty well, I'm not as diet sensitive as a lot of people, (I do watch what I eat though) take my medications, Elmiron, which I've been on it since 1997- no side effects!! Effexor (originally started it for hot flashes but found out it helps with bladder pain), pyridium as needed and pain medicine as needed. I also have hydro's done every 6 months or so when the pain gets really bad. I have raised 2 children to be really great young men. I work full time, haven't had to miss too much work, except for when kids were ill; and for doctors appointments.
Anyway, good luck, if you need anything, we're always here to help.

[missy_blue7 IC Friend Find all posts View Profile Close missy_blue7]

Thanks to everybody!

Thank you for being so supportive and friendly. I was so upset the other day I really didn't properly introduce myself.

My name is Melissa, I am 28, married and have a 5 year old son. We live just outside of Memphis so I have alot choices for doctors if I need to switch. I think one of my biggest upsets is that I am so busy, I don't have time to be sick. I work full time and am starting my master's program. It is tough to try and clean the house and do everything else when you feel good let alone feeling crappy. My husband tries to help out as much as he can, he did before so he is okay with helping a little extra. I feel bad for him because he wants to try to fix things and he can't fix this, it makes him feel bad to see me in pain. Since this is new for me, I still feel really guilty of just being sick. I know it is not my fault, but how are you suppose to be a good wife and mom if you are sick and in pain.

Like I said before right now I am on Enablex (15mg) a day and they put me on UAP- it is like pyridium, but makes your pee kinda blue. I had this problem about 3 years ago, but I went on Detrol and felt great, so the doctor thought I had OAB. I went off the Detrol after about a year and had a few times when my bladder freaked, but didn't think much of it. They were really short lived and I didn't feel that bad, just had to pee alot. So when I started to feel bad a month ago, I figured OAB. Went in and got Detrol and had a really bad reaction to it. I was crying at work and doubled over it hurt so bad. Went back to the dr and he tried Enablex and said come back in 2 weeks. When I told him that I felt a little better, but still had pain, frequency, he was pretty much convinced that I have IC. He said he really didn't need to do the cysto thing to confirm, he figured I was hurting enough. He just said I had all the criteria for it and we would work through it. I can't take the pyridium that makes your pee turn orange cause it makes my bladder feel worse, like ten times on fire. I have kidney stones too, so that makes things worse as well. I already knew my uro pretty good because I have been in and out of there a bunch with kidney stone problems. Right now I don't have any insurance so I am worried about that too. I don't want to put us in the poor house by me being ill. Sigh...

Anyways, thank you all for being so friendly. I have had trouble with this whole diagnosis b/c I am such a private person I don't have alot of support. I haven't told anyone at work, just a few family members (some that were the at least you don't have cancer responders). Well I am sure I will have questions and fears , but I am glad to know I have support.

[born2swim Angel watching over us Find all posts View Profile Close born2swim]

missy_blue7,

I'm sorry you have IC. If you look through Newly Diagnosed, I posted about "how do you cope". The responses were outstanding! I was diagnosed about 6 weeks ago. I am having a very hard time with the diet. I can't cook anything but eggs or cookies. I have a friend that is going to give me some cooking tips and when my dad comes to visit me he'll give me some more cooking lessons! I don't have a big support system here because my family is in a different state, but I'm trying to reach out online and to my friends here. When I'm alone, I'm trying to cry to let it all out. It's hard. The hardest part is that I am house bound most days. I am either too tired, feel terrible, or the urgency/frequency is so bad I can't go anywhere. I was asked how I'm not depressed (my family understands just how bad this disease thankfully). I said I'm more frustrated and angry... but I'm moving from that stage to the mourning, cry, depressed stage. I know if I can just get out more. Exercise. Visit with friends, I will feel better emotionally. I just have to pray that I improve enough that I can start to live again. Being bound to my bed or recliner or toilet is tearing me apart.

I just wanted to say all that so you know that you're not alone. I have moved on from the anger stage to a sad stage (while I was in shock/mixed feelings for the first week or two). I think it is normal to mourn the normal we once had. I am hoping they caught my IC early so that treatment is effective. I will do everything I can to go into remission!