Back from Hydro

[macylynn]

Good Morning Everyone,
We arrived at the hospital at 6am, they appreciated having all of my information typed up and ready to go! At 7:00 we walked to the surgery area, I got on the bed, they gave me an IV and a breathing mask and I don't remember anything until 9:30. Yes, I do have IC. It wasn't as bad as they expected, but it is on the lower half of my bladder where she said there are a lot of nerves. I cried because of the pain the first three times I went to the bathroom. I was shaking from it also. At 11:30 we went home. I am now on Elmiron, Elivel, and prosid. They did not give me anything else for pain, so I am taking Ibuprofen. I tried to get something else but they were reluctant. I am very very glad that I have today off! I can not imagine being at work right now. So, I am at home, I just took my Elmiron so will eat breakfast in an hour. My mom is here with me! She has been looking in the IC cookbook so I'm sure she will make me a wonderful lunch!
I do have another question....
What things should I avoid on food labels?

Thanks for all of the great advice everyone!!!!

[Sarojini]

Check out the section on diet in the Patient Handbook (http://www.ic-network.com/handbook ) for recommendations on food and additives to avoid. You may need to do an elimination diet where you start with the foods in the "okay" list for a while, and then start adding things from the other lists back. Remember, everyone is different with their food triggers, so it's going to be a bit of a hassle in the next few weeks as you figure out your own personal version of the IC diet.

I'm sorry you do have IC, but I'm glad you've started on treatments that can help you. Make sure you keep in touch with your doctor and let him/her know whether or not the various meds are working for you. There are many treatments available, and if one doesn't work you can always try another!

[ICNDonna]

I'm glad you are past this hurdle. You should feel better in a few days. If the IC cookbook you refer to is "A Taste of The Good Life" --- I suggest you read it. It has some really good information, as well as the recipes.

Warm healing thoughts,
Donna

[vm]

Awwww, that made me smile when you said your mom is there and leafing through an IC Cookbook. What a sweet mommy.

Glad you know what is going on in the bladder now and I hope you heal quickly. :kissing:

[macylynn]

Thanks everyone!
Yeah, my mom is the best. I am 27, married, and she is here for me whenever I need her! She looked up recipes on this website last night. She was here bright and early with a ton of groceries! She is right now making Slow cooked beef soup and she is also making fresh fruit crisp! She is so great. She took today off to spend with her favorite daughter! (I'm her only daughter!)
I will look in the handbook for preservatives that affect people with IC. I have been wondering about whey...
Thanks again! I love this message board and the people on it! :)

[Lynda]

Hi, so glad that procedure is over for you. I have so much pain with mine and my family doctor always says to me that he doesn't understand why I am crying after the procedure from pain. He makes me feel like a real baby. He reminds me every time I see him that he has patients that go back to work right after the procedure. Well, first of all with all that anesthesia I get I doubt anyone would be able to work after it. So I have avoided having any more of the hydrodistentions for the past year because he always makes me feel so bad. Not sure if they really help me that much anyway but with all this bladder pain you pretty much try anything. Good luck to you. You are so lucky to have your mom help you out.

[macylynn]

Lynda, I would find a new doctor. :mad: You do not have to put with that type of behavior from your physician!! I do not believe someone goes back to work the same day as having this procedure done. I'm sorry you don't have a supportive doctor. I was in so much pain afterwards, I put an ice pack in my underpants like a maxi-pad.
Please know that there is support on this board and we know how you feel.

[Portia17]

Lynda

Your doctor sounds like mine being an uncaring, insensitive son of a u know what

I have been looking for a new one.

Hope u do too

[vtorrey]

Hi...I have my first cysto with hydrodistention last Monday. I got very
sick from the anesethia and found out that I do indeed have IC. Monday
night I didn't sleep at all...lots of pain and very little peeing. By Tuesday
am I couldn't pee at all. Had to go to the urologist office to have a
cathetor put in. They told me I could take it out on Friday which I
did. I still couldn't pee...I went back on Friday to have it put back in.
The doctor said she has NEVER seen this before and hopes that it will
soon reverse itself. I am suspose to take it out on Tuesday and see if
I can pee. Has anyone ever not been able to pee after a cysto with
hydro and if so for how long? Thank so much, Vicky

[Debgail]

Macylynn, I am so glad things went well for you and that you have a diagnoses. As bad as it is to have ic...it is so validating to finally have proof of all the pain we go thru.
I am so glad your mom is there for you. Take care and rest!!!
Love, Debbie :)

[macylynn]

Thanks Debbie! I appreciate it! :)

[Amy-MarieC]

Hi Vicky...
When I had my first hydro in 1999, I had to go back to the ER and get a cath that stayed in for 6 days. I was diagnosed with IC. At first, my primary had never really heard of it and certainly didn't know how to treat. I saw a second, third and even fourth urologist and was told every time I had severe IC. I have severe Fibromyalgia and severe Endometriosis. My endo doc lives in Ca. He is a specialist in Endo and IC. I saw him in 2002 for my last endo surgery. He also did a hydro and sent me home with some really great pictures to give to the urologist of my choice to help with my treatment. I choose a really great urologist, actually, the first urologist who diagnosed me. He is the head of three area hospitals and I was his first patient with such severe IC. I have hydros every 4 mos with him. I also go to a pain clinic and see a pain specialist. It was only after seeing the specialist in Ca and bringing back these pictures, taken during my hydro there, as well as coordinating a team of docs to help me, that the nurses and anestesiologists and even the receptionists at all of my different drs offices give me the respect I deserve. It took me two years, every 4 mos telling them that I was in excruciating pain after the hydros. I now leave the cath in for a few days. I bleed soooo much that the clots actually block the cath and I have to take it out and start cathing myself. I now receive the pain med I need and my Dr is great...he tells all of the surgical staff to listen to me, because I know what I am talking about. It took 4 years of trying to get people to understand how I felt. I kept pain diaries and I kept searching for the right Dr. Then when I found him, it still took him 2 years until he finally grasped how much pain I was in after each hydro. I think having a pain specialist helps. I think so many Drs are unaware of how painful IC is, let alone the hydro.
I am in a severe flare right now. Even though I have a great team of docs and I am on meds and I know what is going on with my body, I am still in pain..a 9 out of 10..that severe!! All I am saying is that good drs are hard to come by. We need to find them and hopefully, like my doc now, they will educate themselves about IC pain. I have the most severe case he treats. It took him a few years to get to know me and my pain. I can finally have hydros without feeling like I am a pain med junkie looking for a fix. I know all the nurses and most of the surgical teams. Like I said, it took awhile, but it is important to find people who will help us to feel like people.
When I read these posts, it takes me back to that place where no one would listen to me and I felt so lonely. I am very blessed to have a good team.. Believe me, on days like today when I am in horrible pain, I feel like I just want to cry, but I have to remember that I have a good team and my next hydro is scheduled. I meditate and try to stay put.
I feel like my post is all over the place. My main point was, that even if you see every urologist in your area (I did!) you deserve a doc who will understand IC = pain and not just urgency and frequency. But we have to remember too, that even with all the meds and docs in the world, until they find something to help us all, we have to remember to take care of ourselves because we deserve to be happy too!

[vtorrey]

Amy-Maire, Thanks so much for your post. I feel so bad for all you have been
through. I am just at the beginning of all this. I am peeing fine but it hurts alot
still from the cath being in. Did you mean that you have to use a cath all the time
to pee now? My sister-in-law and her family lives in Holden, Ma...on Chapel Street!!
We visit alot for holidays to her house. Tomorrow I go to get my tests results from
the urologist from my bladder biopsy and to talk about meds. After that I am going
to see another doctor to get a second opinion. Come to find out this doctor has
IC!!! What meds are you on? I know it is a trial and error to see which ones work
for which people. I feel so bad for all the pain you are in now. Take Care, Vicky