New to IC - So When Do I Get My Life Back?

[MommaWuzzi]

Yes, I went there!

My name is Lisa and I'm a struggling novelist/stay at home mom, recently remarried to a wonderful guy. His children are grown, but my ten-year-old son is still at home. Last fall I began getting sick, with symptoms that were worse with physical exertion. I was in pretty much chronic pain and would get physically ill when I would ignore it. I'm very much a "go-getter" - there's always a list that I'm going to get done on a given day, and it drives me crazy if I can't complete it.

In my "Before" life I helped lay hardwood floors throughout our house, did all the interior painting, finished the bathrooms, did 90% of the gardening... my husband works, I stay home, I believe the brunt of keeping the house going should fall on me, that way we both have free time together. By November I couldn't even keep my house as clean as I expect it to be, and my sister-in-law took over the wedding planning/shopping and on the day of the wedding it was all I could do to show up, taking hydrocodone as regularly as possible, to get through the ceremony without being ill.

The pain has been so bad and so CONSISTENT that we worried it was cancer. When the ultrasound results came back a few weeks ago and the doctor scheduled the laparoscopy/cystoscopy and told me that it was either adenomyosis and/or IC I went on line and read about IC... and I'll be honest. After I read about it I said, "I'd rather have cancer." I PRAYED for the adenomyosis answer and a hysterectomy, I really did. Getting the answer I got this past Monday was disappointing, to say the least.

My biggest fear is that this will take away so much of what I am. I'm the kind of woman who will go out and split wood with the guys without batting an eye, and am proud to be able to carry around the stuff we bring home from Home Depot. At this point cleaning my house leaves me sick - shaking, nauseous, pale and weak. Until I had the diagnosis I assured myself "maybe this is all in my head, and if I just try a little harder and ignore the pain I'll surprise myself and be halfway through my afternoon and just like normal again." - what can I say? I spend a lot of time in Egypt (they have that really nice river there!).

Since getting sick with this I haven't been able to travel more than twenty minutes without being sick from it, or clean my house in one try, or get out of BED for at least 24 hours after "being intimate." When I've complained to doctors (pre-diagnosis) that I needed the pain better managed so I could do those things I was told "if it makes you that sick you shouldn't be doing it."

I can't spend the rest of my life on my couch with a heating pad. I don't know how to live like that...

I've been a more "frequent pee-er" all my life - was going at least fourteen times a day even as a teenager, so I haven't noticed a really big change on that. The big thing that brought me to diagnosis was pain so severe it made me physically ill, and not being able to ignore it anymore.

This looks like a great place, and I'm glad to find so much advice and support. I look forward to getting to know a lot of you.

[kadi]

Hi Lisa,
Welcome to the ICN. I'm sorry to hear you have it too, but I want to let you know there is hope. Many treatments are available today and the vast majority of IC patients do get better!

When I first got IC, I was doubled over in pain, losing a pound a day from pain/nausea, and voiding 60x a day, completely unable to sleep more than 20 minutes at a time, drive more than 15 minutes, or really, do much of anything. Over time, by learning my dietary triggers, and trying different medications, I have regained most of what I lost. I work fulltime most days without difficulty, wear jeans, travel (last summer spent a month in Spain), exercise moderately, attend church & classes.

I'm attaching some links to helpful webpages. I can't stress enough the importance of finding your dietary triggers & removing as many bladder irritating foods as possible. My medicines are worth nothing if I inflame my bladder with the wrong foods.

Overview of the diet:
http://www.ic-network.com/diet/

Specific foods to try or avoid
http://www.ic-network.com/diet/dietcheatsheet.html

Self help strategies
http://www.ic-network.com/selfhelp/

Treatment options
http://www.ic-network.com/treatments/

Managing flares
http://www.ic-network.com/selfhelp/flares.html

Please remember as you read the messages on these boards, if you get overwhelmed, that while there are many patients sick with IC, there are many many more patients who are doing well with their treatments and are back to their active lives & aren't on the boards!

Wishing you better days soon,

[KarenAnne]

I'm so sorry that you have this too. I was married two months when this hit me. I was enjoying my new marriage, looking for a new job in my new state, & renovating a new house. Yes, this really stinks.

Keep trying to find a good treatment & soak up the info here. You will not be on the couch the rest of your life. You will get better, hang in there, Karen

[vm]

Kadi gave you great info - just wanted to add another welcome. :) Many of us DO get back to our old lives. I've been fortunate to completely get back to what I was doing pre-IC.

Don't give up hope! :)

[SharonA]

:welcome: to the ICN...

Kadi is right. There is hope.

When I was first diagnosed, I really thought my life was over. I was in such terrible pain that I spent my evenings on the couch writhing in pain. I scared my husband half to death. I scared myself, too. I thought I was going to live the rest of my life that way.

Not so...Once I found, thanks to the ICN, what became my miracle medication (Elavil 25mg) and learned about the connection between symptoms and diet, that all began to change. Today, I am able to do pretty much what I want to do when I want to do it. I no longer suffer with the constant pain. Oh...I do have a flare every once in a while, but they don't last long nor cause the pain that I had in the beginning.

There is no reason why this can not happen for you, also. It may take time (it did for me) to find the right doctor and the right meds/treatments that can help, but it can happen. Don't give up on yourself. Keep fighting.

The first step should be learning what diet triggers you have, if any. The only way to do that is to learn about the IC Diet and follow it. Kadi already gave you the link to find the information about the diet, but you can also find it in my signature below this post.

You also need to spend some time reading and learning what is out there as far as medications and treatments that can help. Again, Kadi gave you a head start by listing the links that she did. You can also read the Patient Handbook to learn a lot about IC. (That link is also in my signature.)

Then there are the posts that our Members have written asking questions and giving support. There is a wealth of information available from very wise and understanding people. I learned so much from this website. Actually, everything I know about IC, I learned here. I don't know what I would have done if it had not been for the ICN. Use it to full advantage. That is why Jill has worked so long and so hard providing this very special place where we can come and get the answers necessary to help become part of our own health team plus meet some pretty amazing people.

:):):)

[Briza]

:hi:
I am sorry for your diagnosis and believe me I have been exactly where you have been...but after diagnosis you get treatment, and learn about the diet, like Kadi mentioned, and the majority of us do get our lives back, even if it is a "new normal" life. I can attest to many of the same things that Kadi and the others posted...and I am MUCH better now than my first year before and after diagnosis. It may take some doctor juggling and searching for the right medical team to help you find the right combo of treatment options, but it can and will be done!! With your history of making lists and completing them that is in your favor because that means there is no question that you are going to do what you have to do until you find appropriate and adequate treatment. And yes, please take a very serious shot at the diet...I had ten month remission last year, no meds needed, by just avoiding my few (but major) food triggers. I am having symptoms again but they are very manageable now that I have a good dr on my side AND know my food triggers!! SO hang in there, you may be in for a ride that you wouldn't wish on anyone, but it is VERY possible to get your life back...it happens all the time around here. I hope you stick around for support and all the info you can find on this site that has helped so many of us!
Take care!:flower:

[MommaWuzzi]

The doctor sent me home with a prescription for Elmiron and another for Elavil. We couldn't afford the Elmiron ($362/month) and filled the Elavil. By the second dose it was really obvious I was allergic to it (it was the only thing that had changed in my life and I was red, itchy and having trouble catching my breath), so we've switched me to Vistaril. It has yet to be the wonder drug, either. Even hubby (I'm sleeping in a separate bedroom post laparoscopy, but that ends tonight - woohoo!) mentioned that I was up and down all night - and once the percocet wore off six hours after dosing there was no way I was getting back to sleep.

We've contacted the manufacturer and they're sending us their application for reduced/free medication, so I'm guessing I'll get to start Elmiron in a month or so. I was a little discouraged to not be able to start it and see if it works for me, though the side effect profile on it is a little daunting.

I have been following the IC diet without any real changes yet, and am already so frustrated I wonder if I should go onto nothing but the blandest food until the pain goes away and then add stuff back in one at a time for the rest of my life. I just want to be able to DO things again. That is the hardest part - I'm not a good patient, and not good at waiting.

And geez... do I WANT A GOOD SWEET, YUMMY DRINK today...

[kadi]

I'm so sorry about the Elavil allergy, that is really frustrating!
And about the delay in starting Elmiron. Hopefully, you will be able to start it soon.

Just a thought, with the diet, make sure you are reading labels - some things listed as "usually ok" are not if they have acidic preservatives or "natural flavors" in them.

What you mentioned, starting out with the blandest food is actually not a bad strategy (though not very fun). Have a week on the absolute basics: plain home cooked chicken, rice, vegetables. Then add in other foods one by one with several days in between "experiments". If your symptoms spike after a food, there's one to cross off the "safe" list.

I absolutely HATED the diet until Kim (vm) pointed out to me that
(a) there's no copay or insurance battle over it
(b) it has no side effects
(c) it is a way to positively work toward regaining health

I still don't love it, but it does get easier with time. And when you're feeling better (especially if the Elmiron works) you may not have to follow it quite so strictly.

And I'm really glad to see that you want your active life back and are willing to fight for it. It always makes me sad when I see someone disabled by IC sacrifice their whole life, relationships, productivity, in good part because they refuse to give up coffee. I've known several women who have, in essence, done exactly that!

So, as much as possible, stay positive--- it often takes a month on the IC diet for the bladder to calm down, especially if, like most of us, you drank a lot of cranberry juice to get rid of the "infection" it turned out not to be! Also, for some of us, diet helps, but we still need medicine, so do try to see if your symptoms or # of trips to the bathroom goes down any (even if it's not enough).

Hang in there, it will get better!!!

[BT2008]

Hey Wuzzi,

I am very much like you, in many ways. I have always been a person who "takes care of business"! I have led a full adult life of having to do whatever needs to be done and oftentimes without a lot of help. I have also been the "go to" person for other people in my life. So, I understand completely!

Since being hit with the severe pain of IC in June 2008, my active life came to a complete halt. For several months afterward, of course, I always assumed that there was a doctor 'out there', or a medication 'out there', that would make it all better! All I had to do was keep at it until all was back to normal again. Unfortunately, even after my diagnosis of IC in September, that has yet to be the case for me.

I too am unable to take Elavil, as well as Lyrica, two of the most successful drugs for many sufferers. I had no adverse reactions to the Elmiron, but after taking it for five months--without getting any pain relief--my urologist said it is obviously not going to work for me. Instead, I do bladder instills at home--twice a week--with Heparin (instead of Elmiron) and Kenalog (anti-inflammatory) as the primary ingredients. I am additionally on two different types of pain meds 24/7, and follow the IC diet very closely (I have only found a few things, so far, that are true problem foods for me, but I also haven't experimented much outside the "ok" and "usually ok" columns!)

In all aspects of my life I am "towing the line" so to speak! I gave up coffee even before my IC diagnosis, and I was a total coffee-junkie!! LOL But, I have no problem avoiding those things that may cause me more pain. I am also very limited in what I can and cannot do physically. If I find that my pain level is relatively low and I take a chance and do something more than just the basics, it usually skyrockets when I get up and do much of anything else! That is SO frustrating and VERY disappointing!! So, I understand completely your feelings on this as well: I want my life back too!!

When I went to my urologist last week, he looked at me and said that there wasn't anything else they could do for me except "make me as comfortable as possible with the pain meds"--which sounded like I was on my deathbed! So, like you I also wish I had cancer instead of IC--at least there would be other things they could try, and if those failed, then I would just pass-away at some point. So--once again--I understand your feelings on that one, completely!

For months now I have read posts by Kadi, Sharon, Kim, Donna and others who assure me that one day my life will be back to "normal" even if--like Briza said--it is a "new normal" way of life. I have absorbed their encouraging words over and over again! So far, I still do not like my "new normal" at all--but--it is SO much better than living with the horrible pain I had to endure before the 24 hour pain meds.

But, there are still so many physical things that I cannot do yet, even on the pain meds. But I try to push myself toward doing more every chance I get--in other words, whenever my pain level does manage to drop down below the moderate level. Then, if all is well--great! If not, I have my breakthrough pain meds to help me out until it is time for my regular pain med dose.

With all of these things said: I still have HOPE that I will one day be able to come on this forum and echo the words of Kadi, Sharon, Kim, Donna and Briza, and write my own "success-story" post in that section as well! But ... I am not 'there' yet!! And until then, you and I (and others who are not "there" yet) can HOPE together that we will one day reach that "heaven of normalcy" that so many of the wonderful people speak of here on this forum.

Toward that end, I am very blessed to have a husband who is very supportive and very understanding about my limitations! I also have a urologist who is willing to do whatever is necessary to ease my pain, and a wonderful Nurse Practitioner who oversees my bladder instills. Together, we are all doing everything we can to make me as well as--and as pain-free--as possible.

Feel free to PM me if you need to, and like everyone has said: The ICN is the most amazing place to be! So, you have definitely come to the right place!

Take care Wuzzi, be patient (I know this isn't one of your strong suits, but you will learn how!!!), and know that we are all here for you!

~Beth