Other Interstitial cystitis

[Moonshadow]

A week ago, I underwent a cystoscopy, under general anesthesia. They took a biopsy of my bladder, and I was diagnosed with Interstitial Cystitis.

I'm still in a lot of pain, and I've been told that this is not normal, a week after the procedure.

I'm so frustrated with the fact that I've got yet another incurable, stress-related, painful malady to add to the list (PTSD, Fibromyalgia, TMJ, IBS and now, IC).

Actually, these things are all PTSD-related, and that's what pisses me off so much.

I've been having a lot of flashbacks, lately. Everything triggers me, I feel like crap, and I know I've been a bitch.

I've been taking Oxycodone, for the pain, which was very effective in the beginning, but not as much, now. The medication has been giving me really strange, vivid dreams.

I hope I don't sound whiny. I'm not looking for sympathy, I know we're all struggling. I just really needed to vent. I want to feel normal, whatever that is.

 

[Deleted member 541]

Hey, vent away......I have Fibro, C.O.P.D. Interstitial Nephritis of the kidneys, IBS (although pretty much under control through diet) and just took a huge hit in finances......So be my guest and bitch as much as you want. Right now I am a little bitchy with things too.

Hope you feel better soon.

 

[2quilt]

Is the bladder pain from not drinkning enough water? Your bladder may be screaming because you are dehydrated. Can you ask the surgeon to give you a different pain killer? I take Benadryl just to knock my ass out when the pain is too bad.

 

[Moonshadow]

I've been drinking a ton of water. I've been doing everything they said to do, I think my body is having a hard time bouncing back from the surgery. I feel weak and tired.

I've taken Benadryl for allergies before, and it makes me a little sleepy, but doesn't knock me out. Vicodin usually does that, but isn't very effective for the pain. The nurse told me that Oxycodone (Percoset) is the strongest medication they can give me. It's worked really well, until today.

It probably doesn't help, that I feel like I'm on the verge of major depression. I'm also trying to quit caffeine, since that's supposed to be a major bladder irritant.

I'm getting very little support, and I'm having a lot of trouble keeping up on my household chores. There I go, bitching again.

 

[2quilt]

If you have a healthfood store around you, Wholefoods comes to mind, they sell this stuff called Electromix in a green box, for about $11.00 for 36 packets. i put some of that in my water because i really can feel the difference in how tired I am. Drinking just water in this heat drains all the electrolytes out of my body. The same company also sells Emergen-C, which has LOTS of vitamin C, what you need to heal after surgery.

 

[Moonshadow]

Thanks, 2quilt, I'll look for the Electromix. I used to use Emergen-C all the time, but I don't think I could use it anymore.

With Interstitial Cystitis, I can't eat anything acidic. I'm not even supposed to eat soy anymore, and I'm vegan, so soy has been a major part of my diet.

I'm having a hard time coming to terms with the fact that I can't eat many of my favorite foods anymore.

 

[2quilt]

What do you think of rice milk instead? Almond milk? I understand what you mean by vitamin C and citrus of any kind. I cant eat tomatoes because the acid makes sores on the inside of my mouth.
I live on rice milk.

Do they know what caused your illness? Will it go away?

 

[Moonshadow]

Rice milk is pretty good. I haven't tried almond milk, but I think now would be the time.

The illness will not go away. Basically, it's a thinning of the lining of the bladder, causing irritation to the bladder wall. It is associated with stress, Fibromyalgia and PTSD. From what I understand, there will be flare-ups and remissions, based on what I eat, and stress levels. It's quite painful, when the bladder constantly burns.

 

[fin]

I am finding it strange that the threads I am reading of yours are almost a conversation with me now Moonshadow. I know we are far apart and I am reading along and after the fact, because we have just met, and it is in relation to your communication thread...but know you aren't alone Moonshadow. I am catching up to you ok.

There are many here that will support and help you along the way, even as you will have seen up untill now. Please read as much as you can here, and know I am feeling for you right now. I know as I have shared with you already constant pain gets you down, so learning all the time how to counter it and work through not just with medicinal pain relief may help you.

Still going Moonshadow, and maybe more people will be reading you now; as I am bringing many of your threads forward as I catch up to you reading your story. You may well find all kinds of advice coming back to you now. Read and believe this you can work through ok. We are all here for you, and this will work out also. Please believe that.


take care babe
~fin

 

[Nicolette]

I know I'm late in on the conversation but I thought I would share my story with you Moonshadow.

I was sick for 12 months being diagnosed as having Interstitial Cystitis, to possible diverticulitis to endometriosis to something else and no matter what I still kept getting sick, somewhat regularly, yet they could never grow any bacteria yet my white blood cell count was x100 over normal! It took 11 months of seeing every single specialist and questioning myself to find out I had pyelonephritis which was not treated properly so I ended up with a serious infection in my bladder wall. I was so sick so often I was sick of being sick :rolleyes:

The reason I share this is that if you still fill sick and it is not normal do not stop there and go and get another opinion. I ended up with 4 or 5 diagnosis with the treatment of only one stopping me from a cycle of being sick.

Take care and listen to your body.

 

[Tom S. in Tn.]

I am new to this site and just reading some of the posts, but if no one minds I would like to add;
As an RN, it has been my experience with the health care system in this country (and I won't start with mental health), that an individual absolutely must have an advocate with the ability to stand firm against this system when one is sick and can't.
Sorry to be so negative but this egotistical greed driven system will let you die if you don't have a voice. And I'm unsure if Barak Obama can change it either.

Don't mean to offend, but I need every opportunity to vocalize; Tom S. in Tn.

 

[2notbedefeated]

Hey Moonshadow,

My heart cries out with you in your suffering. As one who also has been suffering from chronic pain for over 13 years and bladder disease for 16 years, I want to send you a hug of comfort is I can. I hear you!

I have fibro, tinnitus, bladder disease (with no clear diagnosis), hurting jaws, can't sleep well, blind spots in my vision (that no doctor can even verify I have then, or why), and have visual migraines and headaches. I had to have Gamma knife surgery on an AVM that I had in my brain.

I'm so aggravated with the medical field myself. You would think with all the advance knowledge, research out there someone would have an answer and be able to help.

I had one of those cystoscopy things, but had no anthesia I hurt for 2 weeks after. No doctor can figure out exactly what is wrong with my bladder and can't seem to give me an accurate diagnosis. According to them I have something that is rare.

I have a friend who has intersitial cystisus and she lived with me for over two years so I have alittle bit of understanding as to how it effects people, how painful it is, and how hindering it can be.

My heart goes out to you. She takes Lyrica and says that it helps alittle. She has been learning what she can and can not drink or eat as well. I know that must be frustrating and limiting. She is also on Cymbalta and say it helps. I don't want to be quick to give solutions because I don't know your situation fully and what you have or have not tried.

I am just so sorry that you have to endure all that you do. I pray you will find some means to reduce your suffering. If I can get a "breather" from pain once in a while it helps.

I should probable act on what Nicolette and others have suggested to you as far as to keep on searching and seeing specialists, doctors until you get an accurate DX and relief.

Hugs to you.