Diagnosed and Frustrated

[Rachel W]

5 years ago at the age of 27 I had a complete Hysterectomy because of endometreosis. I have been diagnoned with IBS, have cronic kidney stones and I was diagnosed with IC several months ago by my gyno. Who then sent me to a urologist. He told me that he did not think it was IC that it was overactive bladder and took me off of the Elmiron. A month later the pain was back and worse. So back on the Elmiron I went. And again I am being told to give it time (up to 6 months) to work. I am also on Amitriptyline, Hydroxyzine and Gabapentin. All of which make me feel loopy. I am also on vicoden for the pain. I only take them at night but the lag over into the morning is driving me insane. The pain is so bad right now that I am missing work and am fearing that I will lose my job. I am at my wits end right now. I keep being told to watch what I eat but right now I am in pain all the time so I am to the point where I don't eat because I am afraid that whatever I eat will make it worse. I have been living on bread and water for a while now. I need help. I don't know what else to do. My doctor said to look up a support group online so...here I am. Any suggestions that you can provide would be GREATLY appreciated.

[maryla]

Rachel,

:welcome: You have come to the right place.

By all means do not starve yourself. There is a link somewhere here to the diet and also a great handbook for IC that you might want to print out. The diet is basically trial and error. Each person is different and what one can eat others cannot.
Give the Emiron time to see if indeed it will work. Also, I take hot baths to get things settled down and either a heating pad or ice. Depending on what you perfer.

And rest a lot. It all takes a huge toll on us, I know!

Hugs and blessings

[VickiB]

I am also on Amitriptyline, Hydroxyzine and Gabapentin. All of which make me feel loopy.
I'm wondering what dosage your doctor has you taking? My Uro wanted me to take 50mg of the amitriptyline and 75mg of hydroxyzine which made me a zombie. After talking with him we lowered it to 25mg each and I seemed to reap the benefits without near as much of the loopyness.

I'm sorry you're having such a rough time! In case you haven't found the diet page here's a link to it: http://www.ic-network.com/diet/ The "IC Diet at a Glance (Cheat Sheet)" has food & drink divided in to categories as to how well tolerated they tend to be. It can be confusing at first, not knowing what may be problematic, but it does get easier with time. You do have to eat!

I hope things get better for you soon!
Vicki

[Goldfinch]

Yes, bread and water is a pretty bad diet! You can eat a very healthy (albeit maybe borrring) elimination diet to get your bladder to calm down and see what your food tolerances are. Start with an inoffensive starch like white rice, add a protein like fresh fish or chicken, w/no additives, and add a couple of very easy veggies such as carrots and zukes perhaps. If you have a basic bread that works for you that's good. Use real butter and real olive oil. One of my staples while on a very restricted diet was turkey sandwiches: fresh good quality turkey w/out additives, lettuce and just butter instead of mayo. The trick is to find unadulterated turkey that doesn't taste like plastic, and then you won't miss the mayo! I lived for six weeks on nothing but home-made chicken broth with chicken, rice, carrots and zukes. The broth was a good alternative to plain water.

[Landish]

I am also on Amitriptyline, Hydroxyzine and Gabapentin. All of which make me feel loopy. I am also on vicoden for the pain. I only take them at night but the lag over into the morning is driving me insane. The pain is so bad right now that I am missing work and am fearing that I will lose my job. I am at my wits end right now. I keep being told to watch what I eat but right now I am in pain all the time so I am to the point where I don't eat because I am afraid that whatever I eat will make it worse. I have been living on bread and water for a while now. I need help. I don't know what else to do. My doctor said to look up a support group online so...here I am. Any suggestions that you can provide would be GREATLY appreciated.

I understand how you feel but eating only bread is not a solution. I also have problems with food but I try to survive with healthy food. I usually eat white fresh bread with scramble egg white with parsley in the morning, oven fish with parboiled rice and green salad for lunch and green salad with almonds (only with olive oil as a dressing) for dinner and lots of water. This diet helps me with pain.
I suggest you to try each medicine one by one because could be that one off them is bordering you.

You have to be strong.
Good luck!

[Rachel W]

Well I am on week 3 of not working, and praying I have a job to go back to. I just saw my uro today who is keeping me out of work for another 4 weeks. 3 weeks ago I was in so much pain I could not stand up straight. Before the pain would be bad but I could at least function some of the time. I have chronic kidney stones and I thought I has having one heck of an attack. Come to find out it was just the IC. So I went to my primary doc who started me on Neurontin (a nerve block). The good news is that it helps, the bad news is that it makes me very spacey. Which is why the doctor has taken me out of work. They have increased my dosage in hopes that my body will get used to it faster and the spacey feeling will ease up. I am down to taking a pain pill only once a day and somedays not at all. But my body still is not used to to the nerve block. So time will tell. Also the uro talked about doing another distention and treatment. Has anyone had any experience with nerve blocks and multiple distention treatments? I feel really lost right now. Guess being suck in the house for the last 3 weeks is taking its toll.