need help

[Sarah Proctor]

My name is Sarah. I was diagnosed with IC yesterday. My story is long and complicated. I have had irritable bowel since childhood. In 1998, I donated bone marrow for my brother who had leukemia. He died six months later. I'm not sure what set me off the donation or his death. Sometime after that I began having problems with my colon. I was hospitalized several times with diverticulitis. In 2001, my blood presssure skyrocketed. I started having vasculitis which was directly related to some of the medication I was taking. In 2002, I was diagnosed with nephrotic syndrome (a kidney disease). I began taking prednisone and lasix. The nephrotic Syndrome kept coming back, so the doctors added a chemo drug. I gained lots of weight and my hair thinned dramatically. In the meantime, I had to have gallbladder surgery and a knee replacement. I also had to be treated for diabetes. Things settled down for a short time. Last summer the diverticulitis problems worsened and I ended up having my colon resectioned. I developed a leak and spent about three weeks in the hospital on a direct line. I haven't felt well since. In the fall of 2005 I began having terrible pain in my rectum. The hemorrids were awful and it felt like someone was trying to push out of my bottom. The pain was severe. I saw several specialists, had more scans and was basically told there was nothing more that could be done. Several months ago, I started having severe cramps in my belly. I though it was still my colon, or possible my uterus. I scheduled an appointment with my GP, but can't get in for a complete physical until Sept. 12th. Last week I saw my GYN. I took the PUF test and he was pretty sure that with those results and my pain that I had IC. Yesterday I did some sort of potassium tests. I began Elmiron last night. I started watching my foods today. Oh, I forgot to mention that I am also being treated with depression and anxiety. Go firgure. I take Zanax and Cymbalta for those. As you can see I'm a mess. My family tries, but they don't understand my constant pain. Is there anyone out there who can relate? Help!!:

[Pac168r]

Hi Sarah,

I have no medical answers for you unfortunatley, however you have found a great support system here at the ICN. I have diagnosed over a year and don't know where I would have been without the support and information that I received on this board. Diet is huge for me. I grew some acid free tomatoes and one slice sent me back into a flare this week. However last year it would have been worse, I have learned to watch for symptoms and start medicating early.

Take care,
Paula:pray:

[Zygala87]

Hi Sarah
My goodness you have been through a terrible amount of physical and emotional pain. No wonder you are depressed! Sharing on this forum is a great first step. Very supportive. When I'm in awful pain, I don't except a Doctor telling me there is nothing that can be done. Find another Doctor. Pain is telling you something is wrong. The IC can be a long fight to find relief but if you keep reading here you will see there is much hope and success. Diet, I find, is most important. Send for the books, stay on the diet and work with your Doctor. As far as your other problems go. I'd seek help with a different specialist. If there is a support group in your area, consider joining in. It should help with your depression. You are not alone. People care. Hugs, Carol

[ICNDonna]

I'm glad you found the IC Network. :welcome:

You'll want to learn as much as you can about IC. The Patient Handbook at http://www.ic-network.com/handbook is a good place to begin.

Warm hugs,
Donna

[hilde45]

May I ask you what kind of meds are you taking?
I have been put on Elmiron Friday after having a
cystoscope.
I am wondering if there is some other meds added on to deal with the pain for these flairups.
Hope to hear.

[Sarah Proctor]

I don't really know about that. I have been taking Cymbalta which is an antidepresent with pain reliever. I also take Xanax to calm anxiousness. I take Fiorinal with Cod #3 for headaches, but they don't do a thing for the pain in my abdomen or the pressure in my rectum. I started Elmiron Thursday night. The other night I was in so much pain, I took some Vicodin that my husband had left over. I know you aren't supposed to do that, but nothing else (Tylonel and Advil) worked and I was desperate for sleep. I'm going back to the doctor on the 8th. I'll ask him about pain relievers. Let me know if you get any suggestions from other members.

I'm a bit apprehensive about Elmiron because some patients have had hair loss. I experienced hair loss while on Chemo. What do you know about this?
Sarah

[hilde45]

Hi Sarah: I have no idea about the Elmiron yet.
I have gotten the perscription Friday. Have yet to take it
because I take blood thinners so Elmiron is a weak blood thinner. So need to find out. I dont like hair loss either .
I have not done chemo as of yet. But Oct. I do another cat scan for the lymphoma. So who knows what is in my future with that yet. Do you have terrible back aches with this.
I seem to have terrible back aches and wonder what it is.
It isnt good when you have more then one problem.
But such is it.
Thanks Sahra for answering my post and if I find anything out will let you know.
Hilde

[Sarah Proctor]

My back doesn't hurt. Sorry that yours does. Sounds like you and I have a lot in common with multiple problems to work with. It sure isn't fun. Keep in touch and let me know how things go with you. Sarah

[hilde45]

It feels nice to be able to relate with someone that understands that you are not imagining all of this stuff.
My family do not understand very much.
They did not even understand my diagnosis of my non-hodgkins lymphoma.
They personally never speak about it period.
I suppose they dont even think that I have it all in the back of my mind.
You dont want to think about it but you do.
Well I would love to keep in touch and thank you so much
Sahra and I wish you well.
Hilde