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I'm done. I want this bladder OUT!

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  • Texas Baby
    replied
    Robin,
    My heart goes out to you! I have felt those feelings before! They stink Stink StinK! But as Judith stated getting your bladder out may not be the answer. I didn't seriously consider bladder removal until I had no options left and was completely bedridden for several months, mine was succesful and I feel blessed. But please please look into your other options. also I would definalty follow up on your depression you are doing the right thing by talking to your doc about it. feel free to PM me if you need to talk!
    Blessings & Hugs,
    Eva

    Leave a comment:


  • mom_in_ma
    replied
    Jill,
    Thanks so much for taking time to respond to my note. I'm doing a bit better emotionally but still having a rough time with the IC. Everything I've tried (atarax, elavil, paxil) causes retention which freaks out my pelvic muscles and makes things worse. Unfortunately, I can't take elmiron because it causes severe back pain in my kidney area. Wierd, I know!

    I can't take the antidepressants because they too cause retention. That, in and of itself, is making this worse.

    Anyway, I've got an appointment with my gyno this afternoon to check on VV and yeast issues (I would give anything to have him say, oh yea, you have yeast and that's what's been flaring you for months!) and another appointment with my uro next week to talk about other options. I'm thinking that intillations will be my next step and both Kadi and Sarojini have been kind enough to send me their recipies so that I can take them to the uro.

    So...I'm moving forward one step at a time. Geez, this is rough. My remission had been pretty blissful and it's really hard to feel like I'm back at the beginning of all of this again.

    Leave a comment:


  • icnmgrjill
    replied
    Sorry I missed this post earlier. It's kwazy here in my office and I started summer school to take a class in advanced web site management.

    Mom... I really do hope you are feeling better but, even more so, I hope you understand that there are many options worth trying before bladder removal. Yes, yes, we've all been there. I remember asking my doc to remove my bladder about a year after my IC started. Thank god he said no because I really did get better.

    The instillations can have fabulous results... as Kadi shared above. Please please talk with your doc about these.

    Also... if you'd like to brainstorm by phone... I'd be happy to talk with you personally! You can call me at the ICN office at: (707)538-9442.

    Do you know where is your pain coming from??? Bladder, muscle or both???

    Jill

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  • L. Thomas
    replied
    September 19, 1984

    I don't have a clue what you felt when you had your miscarriage but I know how I felt.

    Just let me know if you start instillations. That is what I do and for me it works.
    Last edited by Judith56; 06-25-2007, 10:58 AM.

    Leave a comment:


  • ABliske
    replied
    Lesa, I read your story. that is amazing. I can't believe all you've been through!!!! I feel like I've been through a lifetime of this and I've only had it for 1 year. I'm so happy for you that you found a solution. That's awful they held you for so long without food or drink. I do have a soft spot for UCLA though - I went there for a short time.
    I hope someday I can be painfree. Do you take any pain meds now?
    I am not ready to get my bladder removed. I'm 26, but I would really like to be rid of it someday. I love hearing how you can eat what you want and have pain free sex!!!!! Wonderful!

    Leave a comment:


  • ICNDonna
    replied
    The Patient Handbook lists many treatment options. I think it's important to try all possible treatments before considering bladder removal. You've had remissions in the past and hopefully will soon begin another one.

    Sending warm hugs,
    Donna

    Leave a comment:


  • Ginny
    replied
    Bladder removal

    As the others have said bladder removal may not end your pain. I don't think it is the answer for you right now.

    I would get on an antidepressent asap and tell your Uro how desperate you are. You need pain meds for times like this. Maybe see a Pain Specialist. Hopefully the Uro can give you pain meds to hold you off until you see a Pain Specialist.

    Good luck

    Ginny

    Leave a comment:


  • Kara29
    replied
    Dear Robin,

    My heart goes out to you as you struggle through this. I had my first cystectomy in Natick, MA in 2002. I hope some of the other treatments that you haven't yet tried will reduce your pain level to a livable level.

    Kara

    Leave a comment:


  • SharonA
    replied
    Just wanted to send you some (((hugs))). I do hope things get better.

    Leave a comment:


  • ABliske
    replied
    (((((((((hugs))))))))))) So sorry about your pain and the miscarriage!!! This is really tragic. I hope you find some relief soon.
    I myself have thought about gettting my bladder removed. I don't think I will -though anytime soon anyway. So many people still have phantom pain where the bladder was.
    Try to take some joy in the small things today and this weekend!!

    Leave a comment:


  • DebbieD
    replied
    Originally posted by Judith56 View Post
    Sorry that you are in such a flare right now. It is encouraging to hear that you do get remissions at times. Cystectomy/bladder removal is done as a last resort after ALL other methods have been tried, so most likely your uro will want to try other things before you go that route. I can certainly understand why you want the surgery, BUT if your main symptom is pain, there are no guarantees that surgery will cure that. I hope your uro will have some other ideas of things for you to try. Keep us posted as to what goes on, okay? Judith

    I agree with Judith. Some of us have it worse than Others. Take Me. I have gone through 18 surgies and I still have the IC and I had my Bladder removed 23 years ago as the Last resort. I also had my right Kidney removed in 2004. There are alot of nes things out there compared to when I had my first surgery. Please Look at all your Options. I am so sorry that you are having so many bad Days. Please Talk to your uro. There are Plenty of us on this Board that can tell you it is not always a bed of roses.

    I will pray for you. If I can help in any way Please let me know Okay.

    Hugs
    DebbieD

    Plenty of Cystos
    Hunners Ulcers
    S2 Nerve Block-Plus Self Cathing every 15 minuites
    2-cecum-cysto-palstic Bladders- Part Bowel and Part Bladder
    Ileo-conduit Plus 4 revisions Plus Ureatha removal
    Hysterectomy
    Right Kidney removed
    Now I have stents Placed in my Left Ureter cause of Blockage.Every 2 Months

    Leave a comment:


  • mom_in_ma
    replied
    Kadi and Jen,
    Thanks for being so reassuring. Both of you have been great sources of inspiration for me here on this board and I appreciate the time you took to respond.

    I've had a rough year and at first I was ok with the flare because I'd gotten through them before and was managing them well. But, now it's just getting worse and not better and I'm slowly losing it.

    I was in remission and I think my pregnancy last fall (which was a complete surprise and ended in a horrible second trimester miscarriage) was likely the catalist for this flare. I'm just MAD at the world right now. It's not fair that I had to go through that experience and now suffer with the pain of IC. It's just not fair. It's not fair for any of us to have to have this pain.

    Leave a comment:


  • Sarojini
    replied
    Robin --

    I'm so sorry you are in such a period of depression, but I am glad you have a good relationship with your doctor, so you can ask about meds for that -- as well as new options for IC.

    I know how frustrating it is. I swore I'd never try the InterStim, but after oral treatments (I couldn't take Elavil for other reasons, so that's the only one I never was able to try) only reduced my frequency/urgency from 45 times a day or so to 20-25, I changed my mind and went for the Stim despite earlier refusal. Since I had both frequency/urgency and pain, it has helped tremendously with the f/u, but I do still have pain -- maybe not as often, but I can have some pretty bad days. So, I think you are making a wise decision not to try this therapy for yourself if you have just pain -- even Medtronic states it is not for pain.

    As a person with a tough case of IC, I understand your frustrated thoughts. I have yelled, on bad days, that I just want my f-ing bladder out numerous times. Frustration and pain does that to all of us!!

    Just wanted to make sure you and your doc think long and hard about such a big decision before you make it... and I'd definitely try instill therapy before doing the surgery. I know heparin/bicarb/lidocaine ones done at home are part of my pain toolkit, and they do help! They ease both pain and urgency, so I can wake up and go to work more easily, just as Kadi has said.

    Personally, I did terribly with DMSO (and we think the chemical further damaged my already weak bladder, which had been suffering from undiagnosed IC for over 20 years, since 8 years old)... others have done well with this instill and despite my response, please don't rule it out.

    Just wanted to send lots of :grouphugs: to you... and if you want to chat, even if I am not on the boards I always answer PM's, okay?

    Leave a comment:


  • kadi
    replied
    Hi Robin,
    As someone who "failed" most IC treatments (I think there were 15 things we tried) before I got to the instillations, I understand the frustration. I do want to encourage you - there is still help out there. I also was told, "instillations, interstim, or clinical trial", so I know the desperation. I decided the instillations were the least risky & most affordable, so that's what I did first.

    And it has worked out well. The home instillations are what has made the most difference in my IC symptoms and in my sense of control over the illness. I use Heparin, Marcaine, Sodium Bicarbonate & sterile water. On weeks when I feel good, I do them about 3x. On weeks where I am flaring, every day. The best thing is that if I wake up in a flare, I can do a treatment at home & feel better & go about my day. I went from missing 12-17 days of work per year (out of 186 work days total) down to only 5 missed days due to IC this year.

    I really didn't want to do the instillations, was afraid of catheters, was worried about UTI's, but neither has been a problem & I am so grateful for the relief they provide. Physical therapy has also been a big help for me, even though I didn't have pelvic floor problems initially, after 4 years of IC, I now do & PT is a huge part of my feeling better.

    I just want you to know that there is hope. That you can feel better again, even if you are very sick right now. I was very sick for the first year of IC, pretty sick the second year, ok enough the third year (instillations helped), and this year with the instillations & PT, most days feel pretty good.

    Hang in there, sending a hug,

    Leave a comment:


  • ads
    replied
    Robin,
    It sounds like you have a list of medical options you might want to try before bladder removal, which you can't reverse. It has been a positive treatment for some people on this board. (The thought has crossed my mind before and recently more frequently despite the fact of no guarantees it will work.) Immunosuppression seems interesting to me and due to another health challenge, I know the immunosuppression meds are getting better. Perhaps, if you could try one of the new ones you would have less side effects. They are a very serious drug and you need to study and understand the risks. The side effects can be hard on you, but perhaps if you can tolerate them relief would come.

    Currently, I am in the L.A. area and have thought about going to visit Dr. Raz. I have a lot of respect for him and he is doing bladder removals.

    How many different opiods have you tried? Sometimes a combo of a few different meds can be a good option -- like a med soup, then you end up taking less of all the drugs vs. taking a lot of one med. The list of meds, I went thru in 1 1/2 years was two pages long and only a combo of two worked to partially alleviate the constant pain/urgency. I am still disabled, but happy to not be in a permanent path between the bed and the bathroom as before. There are people who take opiods and lead a normal life (i.e. work, go to the gym, raise their kids, etc. -- can't exactly remember what normal is but you know what I mean...) I take Provigal to help with the side effect of the pain killer -- it wakes me up and keeps me alert. It also seems to make me feel less down.

    The ocean is the most beautiful place! I love being on the beach. I hope the next time you near the ocean you will be able to enjoy it without pain.

    ads

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