Newly diagnosed with IC on the Central Coast of California

[laurina]

I am married to a wonderful man who is a Pediatric Denist and have 3 beautiful children, only one who is under 18. And twin Step daughters.

The last few months have been a nightmare and thankfully I have a wonderful family doctor here in Templeton who moved quickly to send me to Santa Barbara where I was diagnosed. My family doctor was actually responsible for saving my life 3 1/2 years ago when a hospital in LA botched a kidney removal and sent me home where I nearly hemoraged to death. If it wasn't for her I woul have died in just a few short day's....so I trust her implicitly.

I think I have had IC for yrs because after my botched surgery I would run to the bathroom 3-4 times an hour. Thinking it had something to do with only having one kidney I wasn't alarmed. It wasn't until frequent UTI's after my marraige to "MY HERO" that I began to experience constant bladder aches. And then in December 08 the pain came in full force and hasn't left except 3or 4 dys. Thankfully I was diagnosed 3 weeks ago and put on Elmiron which is giving me stomach aches and a wierd rash(I think) on the back of my neck. Here's the kicker...I am only 41 and my hormone levels just dropped over the last 6 months and it seems I am going through early menepause, I am suffering, and even meds only bring my 1/2 the relief I need. On a pain scale down to a 4 from an 8 for 3 hrs and then gradually up until I take the next dose. I am learning so much here on your site that I am figuring out the do's and don'ts...however whith no sleep and constant pain my quality of life is diminishing every day.

Please reach out with any idea's. And how do I get the pain under control so I can concentrate on learning all that I need to know to get better.

Thank you for being here.....

Warm Regards

Laurina

Ps my husband and 9 year old daughter are really feeling the effects of this disease on our home...any ideas?

[c2miracle]

Hello Laurina! :welcome: So happy you have found this wonderful and very supportive site. I was diagnosed almost a year ago so I am still going thru "the process". Figuring out what meds work, what are my trigger foods etc. To have the support of your family, especially your husband is great and it does help you tremendously. My husband has been wonderful and my two girls 16 & 6 are supportive in there own little way.
When IC came into my life, it was after my hysterectomy. I thought the pain I was having and going to the bathroom :toilet: ALOT was normal after the hysterectomy. When it didn't go away and continued to get worse I knew there was something else going on.
I currently go every other week for Elmiron instillations and take Prosed when needed. I also take 20mg of Elavil every night, watch what I eat and follow the IC diet, and drink lots of WATER ! Like I said I am still in the "discover phase" but I tell you what, you have come to the right place. There are many supportive and knowledgable ICers here and they understand and share there stories, so you don't feel alone in this journey. Once again welcome and Think Positive! :smile tee

[c2miracle]

Oops! I forgot to add I also take Tramadol and have oxycodone when I'm really in a horrible flare. I will be starting accupuncture soon because when I take the oxycodone I get constipation and it makes me feel worse. Think Positive!

[mnb]

:angel: Look I had this for a few years now and I have my moments with bad days and good days. I also took every medicine possible from Elmirion,elavil detrol, vesicare, xanax, now I take Sanctura and for sleep I take Ambien CR or 10. Plus when that stops working I take Lunesta. I also cannot have dairy and fruits and veggies are not my friends at all. Cause of the dairy I take Fibercon two pills in the morning and nexium in the morning, 2 colace in the morning plus Flora-Q in the morning. I had a Hysterectomy on Nov 20,2008 and I am still healing from it. Thank god for my stimulator inplanted in my butt. It has helpped me alot it could be more but I will except alot for now. Be patient and try different foods and drinks and meds you never know how they will effect you. If I drink green tea I am fine. for some reason water makes me go all the time. Bad enough I go 3 to 4 times an hour now. listen to your doctor get a second opinion if you need to. let us know what happens we are all here for u!!!!:welcome::woohoo::smile tee

[VickiB]

Hi Laurina, and :welcome: to the ICN! Glad you found us!

Some people do have trouble taking Elmiron and have found it to be the capsule rather than the med. I've heard that emptying it into a glass of water to take it helps.

If you haven't already been there the handbook is a great place to start. http://www.ic-network.com/handbook/ Learn what you can about IC and you'll be way ahead in dealing with it. You'll also find diet info in there. The diet was the one step that probably helped to control my symptoms the most, and I really recommend it.

It is tough in the beginning. But for most of us it gets much better than when we were first diagnosed, so hang in there!

Vicki

[laurina]

Thank you so much for getting back to me and leting me know that there are people out there who can be supportive to me during this time of change and challenge.

I am trying not to get discouraged and guilty that my family who had a "Super-Mom/ Super Wife" is no longer there for them in full capacity.
I am overwhelmed and scared to death. I think about the pain every minute of the day because it never goes away. Although my new Uro says it will get better with the Elmiron, Oxytrol, and Antihystamine at night in 6 mos. He is anti Pain meds I think though. I don't think he understands. I have Percocet for pain every 4 hrs but that really doesn't work completley, it only takes it down to a 4 or 5 on a scale of 1-10, and only last a couple of hours. It doesn't make me constipated beause I take herbs that have always keep me regular. And the Elmiron is giving me diariaha, and severe stomach aches that feel like I'm getting an ulcer ( which I know is not the case)....feels like I have lost all control of my body. 24/7 pain is ruining my life. And because I only have 1 kidney now I don't think I can become part of a Clinical trial study which I was hoping to do.

I also have 2 crushed disc in my back, a torn muscle and perminate nerve damage from a car accident 4 1/2 years ago..not to mention the perminate nerve damage from the botched surgery 3 years ago..... I am no stranger to pain and live with it through excercise, yoga and occasional meds. But the pain meds work great for my back which usually hurts everyday, so I know they work for something. Why arent they working for my bladder? And I can't sleep, I am in pain all night...and running to the bathroom 5-6 times easy per night. The Aterax makes me drowsy but doesn't work for the pain...??? Uro says to take 2. He doesn't get how much this disease is effecting my life...my poor husband who is in the medical field hasn't had a decent night sleep in months either. He has tried to be supportive....and I had to tell him last night that the intmacy is painful as well. I feel sorry for him, it's like he has lost his wife in some ways.

I have changed my diet and gave up coffee and cranberry juice which I use to avoid the frequent UTI's I get from only having one kidney and a ureter that is kinked.

Also my hormones took a huge dive about 6 months ago and I'm wondering if going through early menepause set this off. When will this "Flare" end.....why has it lasted continually since December????

Thanks so much for being here for me...

Warm Regards,

Laurina

[laurina]

Thank you so much for being here for me.....

Also I noticed that a lot of people had other medical issues that were affecting their lives. Is there a pattern there. Or what about the car accident I was in? Could the trauma of the seat belt against my lower abdomen have started this? Or the trauma of the botched kidney surgery? I'm not sure if there is a link to these things.

I also noticed that a lot of patients were newly weds as well when they realized they had this. Could all of a sudden being intimate have brought of the flares? I don't know I'm just grasping at everything trying to find rhyme or reason.

Also I checked out the patient handbook it has a lot of info and I am grateful for this new information.

You all have been great, please keep in touch..I feel lost right now.

Warm Regards,

Laurina

[mnb]

:smile teeI'm sorry for all the issues your having. I go to the bathroom 5 to 6 times per night and never get sleep. If I sleep for an hour and a half at one time I'm thrilled. Don't give up I wanted to, but I found a doctor that understood what I am going through and I bought some books from this website including the cookbook and it has helped me because I had my husband read some of the book. He understands alot now and now we eat alot of the same foods because there is so much I can't eat also due to me not being able to have dairy and I have Acid reflux so my food choices had to change. I hope to hear from you soon. Please keep in touch.

[laurina]

Thank you for being so supportive and letting me know I am not alone.
I am going to take your advice and get the cookbooks, I love to cook. But lately I just don't have any energy. It seems like the last week the things I love to do the most take so much effort. It's everything I can do to get through the day and hope that I can sleep at night...which as you know is a struggle.

I am going to get some of the other helpful materials on the site as well....thank the lord that we have this site!!

Good luck on your private email.....I wish you all the best.

Laurina