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  • ICNDonna
    replied
    Bladder removal is rare. Only a very tiny percentage of IC patients are severe enough to consider this alternative. My IC was diagnosed in 1975 and if anything I am better than I was at diagnosis. My bladder is about the same size as it was then. I do have flares --- am in a severe one right now --- but I know the flare will end and I'll be back to feeling better.

    Donna

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  • GoldSeals
    replied
    Originally posted by jpwilkinson View Post
    I'm not a doctor, but couldn't you have a foley cathera put in with a bag? I've never heard of anyone quite as bad as you as far as frequency. There has to be a better solution to this.
    When I had the biopsy a few years ago I had to wear a catheter for a week.
    Anyone that has interstistial cystitis knows that a catheter is the worse thing in the world.The best thing would just have the bladder removed because I believe all roads lead to this eventually.Everyone that kids themself that there is a real remedy is going to have a rude awakening.Sure there maybe treatments that can get rid of the symptoms but what happens when the bladder shrinks to a size thats is almost none existent?I may sound harsh,but when you go through some of these people which see you that are claiming to be experts and all they do is pat you on the back and bill your insurance company and will see you again in 3 months to repeat the ritual again and again.Untill some one comes out with a real solution then its a real waste of time.Sure there are people who arent that bad and maybe a pill or two will get rid of their symptoms.But the real ones who are suffering end up having the bladder removed.
    There are experiments going with cloning bladders using stem cell technology.But it could be awhile before there is anything substantial to cure this dibilatating desease.
    Just my two cents.
    GoldSeals

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  • jpwilkinson
    replied
    I'm not a doctor, but couldn't you have a foley cathera put in with a bag? I've never heard of anyone quite as bad as you as far as frequency. There has to be a better solution to this.

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  • GoldSeals
    replied
    Hi Capricorn,
    I know what your going through.Im considering the interstem.I have to drive to work everyday which is less than a 10 minute drive.I have to stop twice along the way to go.Since im a male its a little easier for me to go next to the door of the car.But im afraid im going to get arrested some day.I keep alot of medical documentation in my wallet and in my car in case I get pulled over.If I dont go I get nausous and vomit from the pressure on my bladder.To make things worse I have to drive a truck a short distance on the job.Im so tired of having to explain to everyone my condition.And when I return from a doctors office visit I get the question Oh so your ok now.I have less then 10 months to go before I can retire on my job.Im gritting my teeth that I can make it.I dont want to go the disabilty thing because I wouldnt be getting my full retirement pay.Also the SS disabilty takes forever to get.So im desprate to find some relief.I can sit in chair sometimes for 30 minutes before going to the restroom.But as soon as I get in the car the bumps in the road trigger the urgency.
    So you see your not the only one thats suffering.Last year I was called for Jury Duty.I went to my doctor for a note stating my condition.The Jury court insisted I show up that they a accomadate disabled people with no problem.They wouldnt excuse me from jury duty!I finally used the city attorney where I work to fax a letter to the court telling them I had to relieve myself next to the car and I had to go every 5 minutes.Their answer was to wear depends.Which I actually do wear.Male Depends.I was finally excused when the attorney chewed out the person on the phone and faxed a letter to the courthouse.Can you imagine me trying to drive downtown which is about 10 miles in traffic in the rain?If I made it I was going to bring a cup with me.And if I couldnt make it in the courthouse I was going to use the cup right in front of the building.Im sure they wouldve told me that. OH We didnt know you were that bad and wouldnt have called you down here.Well guess what? Im That Bad!Im just keeping my fingers crossed that I dont get called again this year.The doctor couldnt believe they turned down his note.
    Ive still got more storys to tell about my encounters which I will tell later on .Still waiting for that magic cure.
    Regards,GoldSeals

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  • GriffsMommy
    replied
    I'm so happy that you found our site. There really is a lot of information here. It sounds like you've had a really rough time. I hope that starting the diet will make you feel better, a lot of people say that is one of the biggest things that bring them relief.

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  • L. Thomas
    replied

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  • **Angie**
    replied
    Hi~ I'm glad you found this sight. It's helped me a lot and I mean A LOT!!
    I try to whizz thru everyday--there might be something that is new or someone has found a miracle. Hey ya never know!! I was also diagnosed in 2004. I can not believe you were going to the bathrm so much. That is unreal. I hope they can adjust you so that you get better control. Everything you wrote I've either had happen to me or I've read about it happening to someone else--except for the unreal amount of time you spend in the bathrm--why did you even come out?? It's hard for anyone to understand something they've never been thru--that's what's so great about this sight. You'll never meet a more understanding group of people.
    Take care~angie
    p.s. You also might check to see if there is a support group in your area.

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  • Debgail
    replied
    AND

    I am so glad your'e here at the icn. I am sure you will find comfort and understanding here. I am so sorry that you have to live in so much pain.

    Keep on the docs so they will help you!

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  • leelee88
    replied
    Hello and
    I am so glad you have found us..I am so sorry you have been going through such a rough time we all know how you feel and our here to support you in any way we can.. So if you have any questions or just need to vent just post away...

    Ronda

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  • humpieumpumkin
    replied
    I am so sorry you have suffered so badly. Hopefully you can find support and encouragement on the boards!

    Erika

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  • capricorngirl
    started a topic new to site

    new to site

    Hello! I am new to the site and thought I would share a little of my story. I was diagnosed with IC in 2004, and as you all know went through the hydro, cysto, all the meds the standard stuff. I had an interstim implanted in 2005 which offered some relief. I have had problems with the interstim such as pain in the area of the implant and leads, being shocked, etc. I have had to have the sensations adjusted 3x and next week I am going in to have the box and leads surgically re-adjusted. I know that it seems like a lot of trouble but before I had the implant I was using the bathroom on average, 120 x per day and was up every couple of hours during the night. It was awful. I would get up to use the bathroom then be in pain from emptying so I could not get back to sleep. The interstim has cut my bathroom trips in half. I am actually able to go more than just a few miles in the car before having to stop. So even though I have issues with it, for me the issues are worth it. I guess right now my issue is the pain management. When I was diagnosed, the dr. told me the good news was I was already at the severe level so I would not get worse, the bad news was it was not going to get any better. She basically said that other than managing my pain there was not a lot that could be done. She gave me percocet for the pain wich sucks. It takes about one hour to take effect then only lasts for about two hours. I was recently diagnosed with uterine fibroids and ovarian cysts which seem to make the IC much worse. I have been in a bad flare now for about two months and of course my dr. is out on maternity leave and because my case is so complicated ( I also only have one kidney with hx of renal disease) I can not seem to find any other dr willing to take me on as a patient. so at this point i am very frusterated and getting a little depressed. My family has been great but I dont think that they fully understand who depressing it is to feel icky and be in pain every day. I was really glad to find this site. I was never, in all the years of having IC, told about the diet. I was told to avoid coffee, spicy foods, and soda. That was it. I have found a wealth of information on here and can not wait for my dr. to get back. I have already scheduled a visit with her when she returns to talk about some of the info that I have got from your web site. So, thanks everyone. The information was very useful and hopefully will be helpful in getting my IC a little better under control.
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