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WOW! Had my first bladder cocktail!

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  • summerboys
    replied
    Re: WOW! Had my first bladder cocktail!

    Yes, they did. They did get easier over time though. DMSO and Elmiron were the worst.

    Leave a comment:


  • prayingmommy
    replied
    Re: WOW! Had my first bladder cocktail!

    Hi! I was wondering if anyone else has had severe pain after an instill? I just had my first one and I am dying in pain.

    Leave a comment:


  • monie218
    replied
    I live in Southern, MD and I'm having the hardest time finding anyone to mix up my meds for home instills. The doctor that I go to is almost two hours away and it's getting very difficult to get to him to get my weekly instills...with work and all and plus the fact that I feel like cramp right after my instill, but I feel so much better the next day. If anyone has any more information on home instills....my doc suggested me mixing up the meds, but then said it wouldn't be sterile and didn't really want to take that chance...any information on home instills would be helpful as I'm at a lost on how I will continue my instills, which is adding to this already frustrating condition. Thanks!

    Leave a comment:


  • Tip and IBS
    replied
    Hi IC/IBS combo partner Amy

    PT:
    I did anal manip once but got even more irritated from it.
    It irritate more the tip of my penis

    As for Biofeedback,it was the balloon expulsion.
    I don't think i need defecation retraining.

    But i want to buy this balloon because i felt some interesting sensation in my sigmoid colon when she filled it with water.

    Leave a comment:


  • ihurttoo
    replied
    Originally posted by Tip and IBS View Post
    IHURTTOO,i guess you get relief from the instillation rigth?

    What about IBS,does the instills has an effect on that as well?

    This is why i'm here.I want to know if any IC treatment could reduce my IBS since i have permanent pubic burning.

    I think i have irritable bladder and irritable bowel and PFD.
    I do get alot of relief from the instills. I would do them several times a day if I could...they help me that much! But, I am only able to do them a few times a week....(when I do them more often, my urethra gets too irritated. )

    As for the IBS part, it hasnt bothered me there. Though, like all IC treatments/meds, I have heard of some that couldnt do them b/c it sent their IBS into a tailspin.

    I dont really have the pubic burning that you do. I dont know if the rescue instills would help with that or not, but I think it would be worth trying it to see. When I do the instills, it totally numbs my bladder, but not the pubic area, but (sorry to be so naive), I am not sure how it would work for a man. But, I think it would be worth a try.

    In your situation, I think I would try to find a URO in a Pelvic Pain center, one that is in a practice with a Gyno. (Obviously, you cant go to a Gyno, but in my experiance, a Gynos have alot of knowledge in this area.) That's why I am thinking if you went to a URO at a pelvic pain center, he/she would have the benefit of collaboration with his/her Gyn coworkers. I may be wrong, but I really think that is where you will get the most help.

    In the meantime, I would definately give the Instills a try. Also, if you havent done so already, you might want to try taking some Antacids or even a med such as Aciphex to reduce acid. I have GERD, and take Aciphex for that. Prior to being on Aciphex, I had occasional pubic burning, (though not to the degree yours is.) My IC symptoms were also worse then too. For most ICers, when the urine is acidic, it causes pain and burning. I think it would be worth a trying antacids, a r/x acid reducer, or even a glass of water with a few Tsps of baking soda and drinking it. (I'll warn ya, it is pretty nasty tasting, but if acid is the problem, it will nix it within minutes! )

    I hope you can find the cause and a solution to your suffering soon!

    Hugs,
    Amy

    P.S. Have you ever tried Pelvic Floor Therapy? If so, how many sessions did you try and did you see any improvement with any of your other symptoms?

    Leave a comment:


  • L. Thomas
    replied
    Originally posted by JlGirl76 View Post
    Jen,

    Thanks for the heads up on the rescue instillations! I thought the ER could help a person out, but maybe not. I didn't sleep at all last night, but I am feeling so much better right now. It's been about 6 hours....so, I made it through. I have been doing so great with no pain or flare/up's for months!! The next time I see my URO, I may discuss doing self cath treatments. It just sounds so strange to be doing that to yourself, but almost everyone on the message boards says it can be done and it's not that bad. I guess when you look at the pain a IC flare can cause or to self cath and feel better....yeah, self cathing, may not be that bad at all!!

    Thanks again for your advice!!

    Jen

    Belive me IF I can learn to do instills I know that if you are motivated you can too. If you decide to try I'll be glad to help. It really sounded frightening to me at first and I didn't think I could do it. Boy was I wrong. It took 3 visits and I felt very confident. If you plan to continue instills I would definately check into doing them at home.

    Leave a comment:


  • Tip and IBS
    replied
    Thanks Kadi but Heather fibers makes me WAY TOO MUCH bloated like every fibers supplement in general.I'm trying a steak diet tonigth with no starch like patatoes who seems to makes gas worst.

    As for physiotherapy,i don't want to comment for now.

    I hope someone with IC and IBS will answer my question wheither instillations improve both conditions.

    MAIN SYMPTOMS:INTESTINAL TRAPPED GAS/pubic pain
    Last edited by Tip and IBS; 04-22-2007, 02:47 PM.

    Leave a comment:


  • kadi
    replied
    My doctor had to submit a letter of "medical necessity" to my insurance company in addition to the prescription for me to get the home supplies & meds covered.

    About the IC/IBS connection, Tip&IBS, I discovered that pelvic floor physical therapy helped both issues. Also, look in this website for the Heather VanVorous guest lecture or look up her website. I've followed her tips on soluble/insolube fiber & am doing a lot better with my IBS issues.

    Leave a comment:


  • **Angie**
    replied
    I wizzed thru the posts but didn't notice if anyone mentioned how to find out quickly if your insurance will cover the install....I made sure my insurance pd for the installs before I had them because I coudn't afford it otherwise. I had to get the code the Dr uses to bill the insurance, then you call your insurance with the code. They should be able to tell you what they cover. My insurance covers the whole thing--no co-pay or anything, but to do them myself I have to pay for "everything". My insurance doesn't cover injectibles. I figure they cost me about $12 each install--that's not to bad. Now if I could get them to work we'd be in business. I'm happy they work for so many people.

    Leave a comment:


  • DaniBelle
    replied
    Try your hardest to get them to approve the home instills!

    Hey,

    I voted for you again (I think it was the 3rd time?). I hope you win. I used to do the landscaping, gardening, lawnmowing around here, but I can't anymore. If I even tried to do any of it for 30 minutes, I would end up in bed for a couple of days (my Fibro has gotten worse). I don't really care about it anymore anyway. Re: the instillations...I remember getting my first 'cocktails'. They were like heaven. It had been so long since I had felt relief...it was like a miracle. I still call my nurse 'my angel'. I have 2 to 3 instillations in the office and I get about 4 or 5 to take home. If I couldn't do the home instillations, I would be in the ER every other day. They have literally been lifesavers. If your insurance gives you a hard time about doing them at home, write a letter to someone 'high in the ranks' at your insurance company and tell him/her how important the instillations are to your everyday life. It makes a difference between you being in bed crying all day and night or being able to 'take the medicine' (as you would with any other prescribed tablet or capsule) and be able to function as well as you can. I don't think insurance people understand how vital this treatment is for IC sufferers!!! Most don't even know what IC is! So frustrating. I'll be praying for a positive outcome for you.

    Danita

    Leave a comment:


  • Tip and IBS
    replied
    IHURTTOO,i guess you get relief from the instillation rigth?

    What about IBS,does the instills has an effect on that as well?

    This is why i'm here.I want to know if any IC treatment could reduce my IBS since i have permanent pubic burning.

    I think i have irritable bladder and irritable bowel and PFD.

    Leave a comment:


  • kadi
    replied
    Yep, much easier & more comfortable to catheterize myself than have someone else do it. One thing that helped me also is that when I first started, the resident (I go to a research hospital to see my IC specialist) gave me a handful of catheters to try out (latex, nonlatex, different sizes from pediatric 8Fr to small adult 12Fr). Then when I knew what catheter was most comfortable for me, they wrote the prescription.

    I mix my medicines at home. Very easy. I use a urine specimen cup to put the sterile water in and a 30cc syringe to draw the medicines out of their bottles, then to put them into the cup. Next, a 60cc syringe to draw the medicine out of the cup for the instillation. When I'm done with the instillation, I rinse the cup & syringes with hot water, dry with paper towel & store them in an open brown paper bag in a drawer tub under my bathroom sink.

    My instillations also cost about $3-4 each time. I use the syringes for 3-4 treatments, then discard. Most people wash out the catheters & reuse. I however, use a fresh one each time just to be extra-careful. Since I am allergic to all oral antibiotics except one, it's a pretty nervewracking experience to get a UTI. If Macrobid doesn't work on the UTI, I'll have to be admitted to hospital for IV antibiotics. So far, this hasn't happened, but my doctors have let me know it's possible.

    That said, I've only had two UTI's in the 21 months I've been doing these treatments. And one happened the night after the one time I had internal pelvic floor physical therapy evaluation. Since the ER doc said it's possible that caused it, I refused further internal PT. The other one happened after I did an instillation the same day I'd had diarrhea. I'd thought I'd been super careful about cleaning up from it, but I still got e coli infection. So now, if I have my period or the runs, I don't do instills those days.

    These rescue instillations have been a total lifesaver for me. I am pain free a lot of the time. They've lowered the intensity of flares & have saved me many days I'd have lost work before.

    Hoping it works out well for you too!

    Leave a comment:


  • ihurttoo
    replied
    Mlch- :woohoo: I am so glad that the instills are helping you! I agree with the others....the home instills are awesome! I do them too. I like it because I can do it whenever I need to, even if it is on a weekend, holiday, the middle of the night or whatever and I am hurting. My instills are about $3 each (that is out of pocket since ins wouldnt cover mine.) But, they are well worth it! I also mix my own. I get my supplies from a "Mom and Pop" type pharmacy. Mine isnt a compound pharmacy, but I know that alot of ICers have to get theirs from one that is.

    Jen (JLGirl76)- I agree with Sarojeni, most ER's in my area wont do instills either. Before I started doing mine at home, I had to get my Dr. to leave standing orders for me at the Fast Track part of the ER so that they would do them when I was hurting bad and flaring. But, even then, the nurses had never heard of Instills before....(or usually even IC!) But, before I had my Dr. do that, whenever I'd go b/c I was in severe pain, they'd want to give me an antiinflammatory shot, (or occasionlly a decent pain shot...if I was lucky!), then, they'd try to throw an antibiotic at me (about 1/2 the time) and send me on my way. It took me 4 yrs to get my Dr. to let me do the home instills, but most havent had that problem. Most Drs. will let patients do them at home once they see that they are helped so much by them.

    I hope your flare ends soon!

    I agree with Donna, Kadi, Sarojini and the others....it is much more comfortable for most to self-cath than to have someone else do it. It was very easy to learn.

    Mlch, I hope that you get better and better with each instill! I am so thrilled that they gave you so much relief!!

    Hugs to all,
    Amy

    Leave a comment:


  • JlGirl76
    replied
    Wow

    Jen,

    Thanks for the heads up on the rescue instillations! I thought the ER could help a person out, but maybe not. I didn't sleep at all last night, but I am feeling so much better right now. It's been about 6 hours....so, I made it through. I have been doing so great with no pain or flare/up's for months!! The next time I see my URO, I may discuss doing self cath treatments. It just sounds so strange to be doing that to yourself, but almost everyone on the message boards says it can be done and it's not that bad. I guess when you look at the pain a IC flare can cause or to self cath and feel better....yeah, self cathing, may not be that bad at all!!

    Thanks again for your advice!!

    Jen

    Leave a comment:


  • ICNDonna
    replied
    I don't have anything to add other than to say that self cathing is much less painful --- and actually not difficult to learn.

    Sending encouraging hugs,
    Donna

    Leave a comment:

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