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Urologist told me Interstim or Bladder Removal...I have questions please...

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  • ICNDonna
    replied
    Re: Urologist told me Interstim or Bladder Removal...I have questions please...

    Originally posted by acheter View Post
    If I am doing well on pain meds, does it make sense to take a chance on Interstim?
    The interstim is not usually considered until all other treatment options have been tried and failed. There's a link in my signature below to the American Urology Association Guidelines for Treatment --- I suggest you have a look at their recommendations to see if there may be some treatment options listed there that you haven't tried.

    Sending healing thoughts,
    Donna

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  • acheter
    replied
    Re: Urologist told me Interstim or Bladder Removal...I have questions please...

    If I am doing well on pain meds, does it make sense to take a chance on Interstim?

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  • Lorib66
    replied
    Re: Urologist told me Interstim or Bladder Removal...I have questions please...

    I don't know if this is helpful or not, but I have had my interstim in for 6 years and it is still working. The doctor tested the battery and told me it has to be replaced by October of this year or it will go dead. It has helped me a lot, but the pain at the implant site is unbearable and I am considering having it removed instead of replaced. I understand removing the leads is the tricky part, if they break and a piece gets left in it can cause serious health consequences because the lead is made of tined lead and if broken off in your body it is really a bad thing. Why don't they tell you this when they put the thing in? I know I will need to take medication, Vesicare, or whatever is on the market now, but I'm willing to do that to be free of the pain at the implant site. Good luck to you.

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  • Pain
    replied
    Oh yeah

    Yeah..I got several boils all at once that got HUGE. Turns out I had MRSA infection which of course can be deadly if it gets in your bloodstream. The lingering effects may be HS - another very rare disease but NONE OF THAT PAIN compares to the 24/7 bladder pain. There are days I want to take a hammer to my toe I swear...just for a change of pain signals. I DO have a broken little toe that dislocates when I re-stub it, hurts like hell but I celebrate the mini diversion.

    I had the lap exploratory surgery and "loved" the pain from that too for a few days BUT not the urethra pain. Even though I requested and they used the smallest catheter available (small child)..I still ended up having severe bleeding from my BLADDER after that short surgery due to the catheter. My urethra is so shot that it is virtually unable to be cath'd. Which of course prevents the invasive treatments..as so many docs found out. It is literally "shredded" insides. bleeds often and is solid hard scar tissue due to a "lovely" surgery I had on my bladder trigone and urethra back in the 70's. They have to use a small child catheter on me and often times it takes 2 people and a lot of drugs to even attempt it. Only agree to that now when a clean catch urine sample is absolutely necessary or when I am knocked out. But it is so damaged that even then...I suffer badly from it. To be honest, the catheter situation is what is stopping me from having a hysterectomy to remove the NINE LARGE fibroids I have, the as they called them "worthless dried up ovaries that look diseased" and deal with the endo that has likely built up again. I hate when folks refer to this pain as pelvic pain. Again...does not compare at all. I have the huge fibroids, endo, etc. and all of the pain from that doesn't compare to the unrelenting bladder pain. It is like no other.

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  • MegFezziwig
    replied
    Pain, Hi, wow, I was thinking of getting a TENS but it really doesn't help your bladder pain? Hey, you are not so different than I am. 4 years ago when I had a hysterectomy, I was thrilled to have the pain of that surgery to take my mind of my bladder pain. I almost laughed at how easy that pain was compared to bladder spasms and pain. I didn't even take anything except for Advil to deal with the surgery pain. A couple months ago I had a huge boil (I know, I am really falling apart) and it was so gross and very painful but again, I welcomed it as it was so much easier to deal with than this crummy bladder pain. It sort of put things into perspective for me. It made me realize that IC is simply one of the most painful things one can have. I wish people could be more undestanding of us. I know some are but dang, this is such a complicated condition. Thanks for your input, Meg

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  • Pain
    replied
    Tens

    LOL..and I am NOT recommending this but I use my TENS to literally "divert" my pain to a new area. I crank it up and have it on somewhere else on my body all together until it "hurts" and then at least I feel a DIFFERENT pain for that time frame. Heck when I get a severe 3-day hormone migraine...a small sick part of me is "happy" because another pain is trying to compete/distract from my normal severe bladder pain. NOT the prescribed use of a TENS unit but thought I'd share my own use of it on the rare occasions I break it out. Other than that it does absolutely NOTHING for my bladder related pain. That is why it is hard to go to pain support groups that are primarily skeletal/muscle pain as that type of pain is often able to get relief via various stimulations...heat, cold, massage, TENS, movement, therapy, etc. Visceral pain is so much different and well you can't "reach" it. I have found very strange odd things to try and do to get some relief that if people looked in my window and saw what I was doing would probably have me committed. In the end...nothing does it really. Sucks to have this 24/7 pain for sure!

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  • MegFezziwig
    replied
    Happy Saturday, Lori,

    Man, it does sound like you have tried everything. I have not tried all the natural remedies myself, I do some self help stuff and meditate a lot, do distraction stuff, visualization techniques, etc. I am not afraid of having my bladder removed; indeed, the thought of having a bag does not bother me in the least. I am used to the gross stuff of diapers and pee and all the rest as I also have terrible incontinence. What I am worried about is that the pain does not always go away when the bladder is removed. I even heard of someone who then had the symptoms move to her liver once the bladder was removed. I don't have the specifics on that case, I just recently read it on one of the message boards I somewhere. I just have my own beliefs that this disease is much broader than the bladder and the bladder is the end organ where the symptoms appear, so in my mind, removing the bladder is only a temporary fix. I would love to not have the urgency and pressure stuff so removing the bladder would take care of that, huh?!!! There is no easy answer to any of this. I might have to do the same thing someday. I am not going to do any implants at this time as I don't know enough about it yet but I am gonna keep on reading. This house is full of IC literarture, boxes and boxes of the stuff!! I am on disability but one of my policies terminated me one year ago and I am still fighting to get that back. What a drag. I still have my Social Security Disabilty and state disability though so I am more fortunate than many, I guess. I void many times during the day and night but it varies and sometimes it is not too bad. I actually handle all of this better than I used to when I was younger. Still, the thought of living like this the rest of my life is overwhelming so I have to plot my course, I guess, and educate myself as much as possible. Hey Lori, do you have pictures of your bladder? I have three, from different hydrodistentions through the years. I had one uro say it was "mild" while my other docs all say it is a very "severe" case of IC. I would like to compare my bladder pics to others who have this disease in a very bad way. Do you know of anyone who could scan their bladder photos to share? LOL, what a weird request, huh? Or, I could send mine and someone could give me an opinion? I am getting pretty desperate here. Thanks again, Lori, for writing back as you still the only person I have found who is as medicine sensitive as I am. Have a good day!!! :-)

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  • ICLori
    replied
    Hi, Meg, yeah I'm scared too. My first uro told me to "live with it" four years ago and that's when I got that book you talk about and read it from cover to cover. Went the "natural" route and spent thousands (or at least one thousand) dollars on a bunch of "natural" therapies that didn't do anything for me but drain my pocketbook.

    Yeah, they were non-invasive...but didn't work. Also, I'm not showing any signs of having pelvic floor dysfunction - just a very inflammed, horrible bladder that is one of the worst my urologist has ever seen in his career - so not sure that will help either, the physical therapy. I am hoping the TENS unit will help and interfere with pain signals.

    You know it's funny - everyone here reacts in horror when I talk about bladder removal. I am on an ostomy support group where there are a bunch of IC'ers who decided to get their bladders removed to have their lives back - and they are really singing the praises of having bladder removal done. Not one of them would go back to living with IC - they say having the bladder removed gave them their lives back. I am encouraged by that.

    I'm 43.....

    Only 200cc...how many times a day/night do you void, are you able to work or have a regular life? If not, maybe Interstim would be worth trying....

    Blessings, Lori

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  • MegFezziwig
    replied
    Hi Lori, It just scares me when a doctor says Interstim and bladder removal are your only options. My capacity is usually below 200 CC and as I have gotten older my IC has not improved and certainly not gone away. I have head that it does for some people. Have you read the book, "To Wake In Tears"? It is quite good about IC about a woman who got over it by using non invasive therapies. I use some of her ideas and it helps a bit. I also do pelvic floor exercises which are great and which you will probably learn in physical therapy. I just shutter to think about taking out a bladder which is still able to urinate, if only a little. I am not trying to talk you out of Interstim. Heck, I might have to go that route someday myself but it is not likely. I just am on Information OverLoad at this point and it is darn confusing! By the way, I have never had a doc call me a liar cause I said that meds seem to make my condition worse. They have called me odd, though...LOL....I sure do present a challenge to them. How old are you, Lori?

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  • ICLori
    replied
    Hi, Meg, my capacity is now about 450cc under anesthesia and when I am flaring that translates into 1/4 cup or less per void. Right now I have good capacity, closer to a cup I would bet, because I am in remission.

    My uro told me the only options available to me now are Interstim or bladder removal because every other pill and therapy I've tried over the past 4 years has not worked.

    You know doctors I talk with are wildly enthusiastic about the Interstim, this one doc I am going to now says it helps almost all his patients, they do great on it. But so many IC'ers say it's awful, they've heard awful things about it, etc. Hard to know what to think.

    I do know that I don't want to spend the rest of my life in an IC flare. One thing I know for sure is that the symptoms will come back - my remissions never last very long.

    I haven't tried biofeedback but I have an appointment with a physical therapist to try different things including TENS so maybe I will learn something there....

    It just seems to me that we ought to have more effective remedies than hot and cold for this condition - I sure hope research leads the way soon to a much more effective treatment for all of us. I'm sorry the hydrodistentions made you worse - how awful! I wish there was some treatment that could take these symptoms away from you.

    I hope that you will have less and less pain each day. My urologist told me that in his opinion, people get better as they get older, with this disease - in some it goes away completely he said. I don't know whether to believe it or not...

    Blessings, Lori

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  • MegFezziwig
    replied
    Hi Lori. I am so glad to hear you are presently in a remission. When I have a hydrodistention done I only get worse but I did not realize this for many years and I have had plenty of those awaful things. No, I never have remissions but I do have days which are not as painful as others. I try very conservative methods since pain pills don't do the trick. I watch my diet very carefully (how very dull!) and I live in the bathtub with very hot baths followed by very cold compresses applied directly to the bladder and pelvic area. I also do biofeedback and have learned some great relaxation techniques. I guess I have lived with this so long that I am used to it. Yes, it is not a pleasant way to live and I am always peeing but I still am very reluctant to try Interstim. You sound like you have done a lot of research on it though, and I am only beginning my research into it. What is your bladder capacity? Who told you that you might need to have your bladder removed? I am still able to urinate most of the time but I do have retention and a lot of pain. I have heard that of the people who do have their bladders removed, taht some of them still experience pain. what a bummer. Still, you are in remission now so you are able to think more clearly probably and you can decide what is best for you. I sure hope whatever you decide helps you. Heck, I hope your remission never ends so that you don't have to do any drastic procedures! Did you ever try biofeedback? That is probably the best thing I have ever done for my poor old messed up bladder! Thanks for replying and stay pain free! Meg

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  • ICLori
    replied
    Hi, Meg, I'm sorry you have had the bad experience too of medications bothering your bladder. Have you had problems with doctors not believing you? Today was the first time I ever had a doctor (my new urogyn who seems very professional and nice) tell me that he's heard of this before and understands that some IC patients do have problems like this and it's not in our heads and we are not liars. (The other docs basically told me I was lying.)

    I am currently in a semi-remission perhaps because of hydrodistention/cystoscopy I had a month ago (first I didn't get a remission because I got a UTI but now that the UTI is cleared up my bladder is feeling so much better, and is well enough that I can't do Interstim or anything because it's not bad enough to note improvement...).

    So anyway we are doing nothing until my symptoms return. But he is very enthusiastic about this Interstim, says that he's had great results for his patients who were just like me including many who could not tolerate meds.

    I too have heard horror stories and am afraid but I am slightly less afraid of Interstim than I am of bladder removal so I guess Interstim it is. I know that when I am flaring (and my flares last many months, not just weeks or days) life is just impossible. I go from 30-60 times per day and go all night long, spend all my life on the toilet when I'm symptomatic, and have pain as my bladder fills (even a few drops hurt bad). That's no way to live, especially when meds end up hurting instead of helping, and there is nothing I can do.

    So...what is a person to do when faced with either bladder removal or Interstim? Interstim seems somewhat more reversible at least than bladder removal....both scare me to be honest. I wish so much there would be a magic pill I could take to make it go away. I am so envious of those who are helped by medications, are you, too? Do you find yourself a bit wistful when reading that meds help most IC patients, too?

    I heard once that success or failure with Interstim can sometimes depend on the abilities and experience of the surgeon involved. I know that is true of most surgeries - the best results are by the best surgeons. Perhaps it is true of Interstim too. I would be having my Interstim done by one of the leading surgeons for this in the country, so at least that would be in my favor.

    I did meet with the doctor today and asked if I could also look into two experimental therapies when my symptoms come back - cyclosporin and BCG. Basically I want to try everything and anything before I commit to surgery.

    But if it's a choice between surgery and living my life peeing 40 or more times a day...I guess I will choose the surgery even though it's a big risk.

    I don't know how long this remission will last but I sure am enjoying it for now.

    Do you get remissions sometimes?

    Thank you for this post.

    Blessings, Lori

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  • MegFezziwig
    replied
    Lori, I am new to this group and am not exactly sure how I am supoosed to do this or if this message will even show up. I cannot find a message from you dated any later than August 17, 2004 and I am writing this message on August 27, 2004. I want you to know that I too, am super sensitive to any and all drugs and all the pain meds I have tried have made my bladder symptoms worse. The urgency/freqency and pain always get worse and I simply will not take that crap anymore. I too have been asked by my pain management specilist to try Interstim or a procedure called Spinal Cord Stimulation. I have only started my research and I think they are too risky but certainly better than having your bladder removed. I have had IC all my life but was not properly diagnosed until I was 35. I am 47 now. I am going to think very long and hard before I let anyone put those implants into me. I know of one lady in my other support group who has had Interstim and had very bad experiences with it. Did your doctor mention Spinal Cord Stimulation? That sounds horrible to me but I don't know what we are supposed to do if we can't take pain meds. Anyway, I hope you find some relief and I will be thinking positive thoughts for you and for all of us with this dreadful disease. Thanks, Meg

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  • Peggy Anne
    replied
    has anyone tried the interstim that ONLY has frequency and urgency? and if so, has it helped? did it cause more pain? and more importantly - why is the surgery so hard to recover from?? Thanks!!

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  • ICLori
    replied
    Hi, sweetie, I'm willing to try anything....right now I am trying Algonot 5-1 which I think is supposed to have aloe vera in it....

    Went to my pain management appointment today. I know the time and date were right on the mark because I took the info over the phone and wrote it down - 14 August 0730 - well it's a Saturday so the clinic is closed of course. They will probably say "oh no we didn't tell you that time..." I think they think I am a problem patient because I keep reporting adverse reactions (bladder pain) to meds and I think they think I am lying.

    Blessings, Lori

    Leave a comment:

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