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  • JDOOKIE
    replied
    Chlorpactin

    hi everyone,
    i dont onkw if i need to start a new thread or if anyone can help me(new at this). i just found out my doc. wants to use chlorpactin while i'm under for my hydro?? has anyone here had this done before or been treated with it? i have already read about it in the handbook, and old forms. just wanted some new updated thoughts on this. thank you, any help would be great seeing how my hydro is schedualed for friday the 11th.

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  • JDOOKIE
    replied
    hi,
    i'm glad you also as many has good results with the hydro!! the doc. also informed me i have a small uretha- he has to use a smaller cath when he did the 1st cysto. but just the cath alone are enough to drive you crazy.sorry to here about your pain.pressure is better than pain but yet so annoying-especially when it's constant. do they take a biospy every time they do the hydro to let you know if theres any changes? how long has yours lasted for? thank you again for sharing you experince.wishing you wellness

    Originally posted by plaedes View Post
    In my experience the cysto/hydro came much later as a 2nd opinon diagnosis. My main symptom is pain. I will say that right after the hydro the pain was much worse for a day or two. I think once I got over the initial irritation it got better. I also had to have my urethra enlarged, which made things ultra sensative. I had the cysto/hydro done about 2 or 3 years after my initial diagnosis and had tried the bladder instillations, Elmiron, Elevil, atarax, etc. I still think the one thing that has helped me most in the long run was the hydro/cysto though. I will mention this....I don't know if anyone else has experienced this or not. After the hydro my "urge" feeling changed. Right up until the procedure I had been have a lot of urgency and afterwards it just turned into more pain. It took me a good two weeks or more to realize just what was going on. I noticed that I would start to hurt and then all of sudden it went away after using the restroom. It was a different pain. My IC pain is more like hot lava in the bladder or spikes or something. This was more of a pressure thing. Like being really full feeling after a large meal, but lower. Almost like gas, but different. I don't really know how to explain it, just that after a while I learned that if I started to feel that pressure I had to go to the bathroom. Not at all like the normal urge to go to the bathroom. But all in all, I haven't had very many problems since the hydro/cysto. Since pain is not a symptom for you it might do you a world of good.

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  • JDOOKIE
    replied
    hey,
    thats good to hear!sorry to hear it's getting worse, hopefully something will help with that, good for now that your symptoms are better. i will take 3months- gosh b4 this i took things for granet, change my whole look on life. good luck on your next hydro, hope you see great results. thanks for the advice!take care

    Originally posted by Quinn24 View Post
    Hi JDOOKIE,
    No the pain I had experienced had nothing to do with the Hydro. If I get pain, I have a Hydro and it takes away all my pain. I do not know how long the Hydro works for and of course everyone is different. My Uro said that sometimes it takes a couple hydro's/stretching to get the optimal effect you are looking for. My first hydro helped me for 3 months solid, hopefully this time it will last longer as my bladder is bigger again. Now my problem is that my Uro said my bladder was in worse shape in April than it was in December so now I have to ask him why he thinks that is and what can we do about it. I am a firm believer in Hydros in resolving pain and frequency.......they don't work on everyone as you have read here but for me, I swear by them. You would need to try one to see if it helps you. Good luck! Quinn

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  • plaedes
    replied
    In my experience the cysto/hydro came much later as a 2nd opinon diagnosis. My main symptom is pain. I will say that right after the hydro the pain was much worse for a day or two. I think once I got over the initial irritation it got better. I also had to have my urethra enlarged, which made things ultra sensative. I had the cysto/hydro done about 2 or 3 years after my initial diagnosis and had tried the bladder instillations, Elmiron, Elevil, atarax, etc. I still think the one thing that has helped me most in the long run was the hydro/cysto though. I will mention this....I don't know if anyone else has experienced this or not. After the hydro my "urge" feeling changed. Right up until the procedure I had been have a lot of urgency and afterwards it just turned into more pain. It took me a good two weeks or more to realize just what was going on. I noticed that I would start to hurt and then all of sudden it went away after using the restroom. It was a different pain. My IC pain is more like hot lava in the bladder or spikes or something. This was more of a pressure thing. Like being really full feeling after a large meal, but lower. Almost like gas, but different. I don't really know how to explain it, just that after a while I learned that if I started to feel that pressure I had to go to the bathroom. Not at all like the normal urge to go to the bathroom. But all in all, I haven't had very many problems since the hydro/cysto. Since pain is not a symptom for you it might do you a world of good.

    Leave a comment:


  • Quinn24
    replied
    Hi JDOOKIE,
    No the pain I had experienced had nothing to do with the Hydro. If I get pain, I have a Hydro and it takes away all my pain. I do not know how long the Hydro works for and of course everyone is different. My Uro said that sometimes it takes a couple hydro's/stretching to get the optimal effect you are looking for. My first hydro helped me for 3 months solid, hopefully this time it will last longer as my bladder is bigger again. Now my problem is that my Uro said my bladder was in worse shape in April than it was in December so now I have to ask him why he thinks that is and what can we do about it. I am a firm believer in Hydros in resolving pain and frequency.......they don't work on everyone as you have read here but for me, I swear by them. You would need to try one to see if it helps you. Good luck! Quinn

    Leave a comment:


  • JDOOKIE
    replied
    HELLO,
    quinn24 do you think that the one bout of pain was from getting hydro done- and it was only that one time? i know you say overall it helped a great deal & i'm so glad to hear you got relief from it. that is what i hoping to achive as well. wow only going 2 times at work would be A BLESSING!

    jen74, yeah i'm getting it done in hopes of relief, he says he need to look for ulcers, so if he was to look more closly than as well i'm not gonna argue with that-rather be safe than sorry. thank you for your advice & i am deff. doing alot of research on this. i called the docs. office & they wernt that helpful, so i just have my list of q's to ask the doc. b4 the procedure.

    born2swim, i only had a leaking issue 1 time but other than that the same deal as you. i feel so sorry for people that have the pain as well.i've had this issue 2 yrs b4 being dx so hopefully that is early enough to prevent it from getting worse. i'm glad you found meds that help & your doing better!!

    thank you all again! like i said i didnt get the answers i needed over the phone so i'll just have to wait till the day of- but i will also have another set of ears this time(my mom) so i know that will help. i'm glad i'm not the only one who doesnt have pain- i was scared that i had been dx wrong- but i guess everyones diff. the only pain i ever which really made it worse was intercouse once but that was the last time me & my boyfriend have until i get this undercontrol- it deff. pushed me over the edge , SO PAINFUL & my stomach was spasing, now i'm so scared.it was my beaking point to really push me -my whole life is on hold.sorry about that it's easy to start looking at the bad side. i hope you all have a great day & always finding better ways to feel better.
    jessica

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  • born2swim
    replied
    Sorry to hear you were just diagnosed. I am 24 and just diagnosed. At my worst I was going around 40 times a day, but now its in the 20's and I finally slept for 7 hours with waking up only once. It was a relief for the last 3 nights. I wasn't offered the hydro... at least not yet. They want to put me on meds (Elmiron, Elavil, Atarax, then Ultram for 2 weeks). It's amazing how much the Ultram and Atarax helps. I too don't have pain (except for the first day of my period or when I run or am too active). So, the pain you hear about here... I'm not like that either. My guess is that they got to my IC diagnosis early and I'm hoping there isn't too much damage to my bladder. I had a strong positive response to the potassium test and my chief complaint is urgency and frequency. Like I said, no pain really and no incontinence.

    I hope this helped!

    Leave a comment:


  • jen74
    replied
    Hi JDOOKIE,
    Yes, your uro would have been able to see if there was any cancer during the in office cystoscopy. As far as IC, they say alot of times they cant see the IC through a regular cystoscopy, though the urogyne that I saw diagnosed me through a standard cystoscopy. If you were already Dx, then you dont need a hydro for that reason. Now if you are doing the hydro to see if you will get relief, then that is a different story. Though I would highly suggest to research it well before hand. It has been known to help some women, but be sure you discuss everything with your doc before you decide to do it. Ask him/her all the pro's and con's of having this procedure. What can go wrong, etc...Also, do your own research. Good luck and hope you get some relief.
    Jen

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  • Quinn24
    replied
    Hi JDOOKIE, I was like you when first diagnosed with IC. I had no pain, it was the frequency that got me into the Urologists office for the first time. I had my first cysto in his office which did nothing for me, guess he had a look, then did the Urodynamic testing and from that decided to take me to the OR and do a cysto/hydro....I used to pee 30-40 times a day and every hour during the night. About 4 days after the hydro I started sleeping through the nights and only going average during the day. My stomach hurt for about 3 days after the procedure because I think the first time they scope they look all around while you are under sedation and check for tumors and cysts etc. Then I developed bladder pain about 3 months later but the Uro said I needed another stretching as this gave me such good relief the first time and he wasn't able to stretch as far as he would have liked to (you have to be careful doing this procedure), so he stretched a bit further and this time is even better than the 1st time, I only pee 2 times a day at work and had NO PAIN WHATSOEVER after the procedure. I took the day off work of the procedure and the day after and was back to work good as gold. The other people on this list unfortunately have a lot of pain and differnt IC symptoms than just urgency and I feel very sorry for them and wish them the best of everything and that they can get help soon. I had that one bout of pain in March of this year and that was painful and if that is what the majority of the people on these posts go through on a daily basis, My hats off to everyone who is able to live a relatively normal life with bad IC symptoms. JDOOKIE, I think it is worth the try to have one hydro and see how you do with it, but remember the first one will hurt your tummy a bit but not your bladder or urethra (well it shouldn't that is).

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  • JDOOKIE
    replied
    hello,
    thank you all again for the supoort & feed back. i have made up my mind not to have the dmso done at the same time of procedure but i am gonna give the procedure a whirl 1 time. hoping to get some reliefe out of it. but he did say he wanted to look for ulcers? when he did the outpatient procedure-from my understanding he filled my bladder up to make sure it was normal size(which it is).and dont recall him streching it he stop when i said i felt full & then drained it? so would he of been able to see anything with my baldder normal? i am calling the doc. office to day & getting some answers(i hope). hope you as well keep getting the help you need to overcome this. thank you again!

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  • Kathy in Canada
    replied
    new with ic and lost

    Hi,

    If I were you, I would refuse the cystoscopy and hydrodistention in the OR. You have already been diagnosed by the PST. You had an out-patient cystoscopy already - so the dr has had a look at your bladder to rule out cancer, or Hunner's ulcers from IC.

    I had the same tests as you. My PST was strongly positive and I was diagnosed with IC. I was put on Elmiron and Elavil. I also have instillations of Elmiron (emptied out capsules) mixed with Lidocaine, Sodium Bicarbonate and sterile water. These are to help me until the oral Elmiron kicks in & for flares. It's working fine. My symptoms are improving. I'm also on the IC diet.

    I don't see why your dr wants to do the hydrodistension before seeing how you respond to oral meds for your IC.

    Take care,

    Kathy

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  • L. Thomas
    replied
    I have had only mild occasional pain. The pain I have had is like a UTI pain when peeing but the pain as I stop peeing.

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  • petrie86
    replied
    Kim took the words right out of my mouth. I always right a list of questions before I go to the uro. I have a tendency to forget everything lol. I'm sorry you have IC but at least your not alone. I'm 20 and was dxd in oct 06. It stinks being young and having this stupid disease. Remember that you are never alone and we are always here to answer any questions you might have. Were not dr's but sometimes dr's dont even know what we go through. to this ICN! Feel free to pm if you ever need to vent or talk to someone aroung your age! ((Hugs))

    Rachel

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  • vm
    replied
    You might make a small list of questions to ask your doctor before you go for the appointment. I have been notorious for forgetting what I wanted to ask during the appointment, but then remembering on the drive home. Now I make a short list of my questions to bring with me and any the doctor doesn't cover during the exam I ask at the end.

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  • jen74
    replied
    If you decide to have the DMSO instill, I would not have it done right after the hydrodistention. You should wait at least 4 to 6 weeks after a hydro before you do any instillation. At least that is what I read on the ICA.
    Jen

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