Announcement

Collapse
No announcement yet.

IC is back after bladder removal

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • IC is back after bladder removal

    Situation has changed for me. I was initially doing better but now I'm now 8 months out of surgery. Things went downhill after I healed, and it just kept getting worse from there.

    Before I go any further, my User ID was changed for privacy purposes, as everything shows up in the search engines, etc. You get the idea. Feel free to message me.

    The burning is back--and this is no simple burning either.
    The pressure is back (though not as bad, but bad enough that can't concentrate on anything). So for example, it used to be a level 10 pain. It's now a level 7.

    I'm on the same medications I was on before my surgery. And I don't even have a bladder or urethra anymore. That's the thing that boggles my mind. The pain is not where it used to be. It now feels like my bladder is sitting on top of my pubic bone. And the burning is now in the muscles around the area where my urethra used to be. So it's still "down there", but moved to other areas in my pelvis.

    I have stoma complications that cannot be fixed. After several appointments, I'm still back to square one. The end result is that I am left spending a lot of money on stoma pouches/supplies.

    The worst part about this whole thing is that there are people who have IC who think I am lying, just because the surgery worked for their friends. Well I am glad it did for them. I know nothing about their medical history so I can only speak for myself. I had 8 abdominal surgeries with severe scar tissue. One persons medical history is different from the next. That doesn't give them the qualified right to judge me.

    The other worst part is that medical professionals who are qualified to judge me think bladder removal is a cure for IC. They give me the impression that my phantom pain is no big deal and brush it off as a simple bug bite. I get told I need to get outside and exercise more when I am in severe pain.

    My last crying complaint is that I fear I will loose my Social Security soon. It's the medicare that scares me the most, because my medical supplies are hundreds per month due to my stoma complications.

    But what I really need is advice at this point. My urologist practice is made up of about 20 doctors. Their policy, which includes my urologist and my surgeon, is that they do not write up letters for social security. My original urologist who got me on SS left the country. So I can't go back to her. I have asked my primary care doctor who also said the same thing in that they do not write up letters. They just give them my file. This seems to be the new "brush off" statement that physicians are giving. Does anyone know how I can get around this? I will also post this question in the social security section.

    Thank you <3
    Last edited by Trei6y1952; 10-18-2015, 11:00 AM. Reason: location was updated

  • #2
    Re: IC is back after bladder removal

    Thanks. I've tried that. No one wants to deal with me yet, because as of right now I have SS. The attorney's don't seem to understand that I'm trying to prevent that from happening on my review. I guess I have to wait to fall flat on my face, loose my house and car first before calling them.

    Comment


    • #3
      Re: IC is back after bladder removal

      do you have a mental health therapist? that would be a good resource as far as getting a letter for social security.

      Comment


      • #4
        Re: IC is back after bladder removal

        I do and I just fired her -many reasons. Good idea though.

        Comment


        • #5
          Re: IC is back after bladder removal

          Do you live in the UK or the United States?

          You should write a letter to SS yourself explaining how sick you are and how debilitated you are. It might help, and it sure wont hurt. Give lots of details on what a day in your life is like. I am sorry you are not well again after surgery. I have heard about people getting nerve pain and damage from surgery. I cannot believe your doctors are being such A-holes. I hope you can get some relief soon .

          Comment


          • #6
            Re: IC is back after bladder removal

            Thank you Jen74 , US

            Comment


            • #7
              Re: IC is back after bladder removal

              Hi Trei6y1952,

              This thread is old but I wanted to check in and see how you're doing these days? Did your recurring IC pain ever resolve after bladder removal, and were you able to keep your social security going?

              I sure hope things are turning out ok for you after your bladder removal.
              Jeannie
              "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

              IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

              Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

              Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

              Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
              As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

              Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

              Comment


              • #8
                Re: IC is back after bladder removal

                Hi jeaniebug,

                Thanks for checking in on me. My phantom pain got worse as time went on. I'm currently taking 1600 mg of gabapentin, Flexeril and valium suppositories combined. Some days the only thing that helps is laying down. Also, I am still going through 80 pouches per month. I have been to the Cleveland clinic for a second opinion and 13 stoma nurses throughout the state. Currently no one can help me. My social security review is coming up soon. I'm pretty sure I will get let go from the system because none of my doctors are willing to write a letter for me. I have found an attorney should that happen. Will keep you posted.

                Trei6y1952

                Comment


                • #9
                  Re: IC is back after bladder removal

                  Hi Trei6y1952,

                  Big DRATS, I am SO sorry to hear your pain is actually worse. 80 pouches a month, yowza! That sounds expensive, too. Ugh. Are you on pain medicine or ANY pain control at this point? It seems you would need that now, more than ever.

                  Looking back, if you could have a do-over, would you have kept your bladder and the symptoms you were dealing with? Or would you say, bladder removal was the way to go despite the problems?

                  I'm only asking because I've had IC for 15 years. My bladder has not shrunk at all which is normally a requirement for bladder removal, if I understood my doctors correctly. My main issues are debilitating pain, bladder/urethra/vaginal spasms and of course frequency/urgency. Every Specialist I've seen has told me, bladder removal will NOT solve my issues and there is a high chance it could make my quality of life much, much worse. Including worse pain, which I am totally not interested in.

                  The doctors have warned me of "phantom pain" after bladder removal. So you have that and severely? Dear God, you've been through so much. IC can be like navigating through a haunted house, I know!

                  I know you're not well lately and so I appreciate very much your taking the time to answer questions.

                  Also, I'm disgusted at the limited resources/options for those of us who have had long-term, severe, refractory IC. Treatments are lacking. In my experience, alot of doctors have literally thrown me away because they cannot help me. I've even been told by one Urologist (who I never went to see again, obviously!) "You just need to accept after this many years that this is a life sentence." What? Eek.

                  It is a horrible, isolating feeling, and I know you are probably all too aware of this phenomenon as well. Also, I notice alot of us "old timers" on the ICN boards seem to stop communicating and disappear over time. That is hard because I think we need support more than ever, having suffered this illness for so many years.

                  Anyway, I'm on Disability for the 2nd time in 15 years due to this illness. I've lost alot including having to sell my home, put all my stuff in storage and live in a relative's basement for cheap rent lately. Just livin' the glamous life, NOT! LOL!

                  I'm hoping upon hope that Disability will not drop you. You do not need that stress or drama right now. It's VERY good news you've located a lawyer, just in case. You might spend a few days perfecting a letter to Disability describing all you've been through (with symptoms and doctors and expenses) since your bladder came out, even if they haven't asked for a letter. And mail it anyway. It would not hurt your case.

                  Sending light and love your way girl. Hang in there.
                  Jeannie
                  "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

                  IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

                  Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

                  Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

                  Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
                  As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

                  Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

                  Comment


                  • #10
                    Re: IC is back after bladder removal

                    Trei6y1952, I am also interested in your case, and also very sorry you've had to go through such an ordeal.

                    Since you describe a burning in the muscles around the area where your urethra used to be, I'm curious as to whether you've tried pelvic floor therapy, and if so, how it went for you.

                    I'm hoping for the best for you

                    Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
                    Current IC treatments: menstrual suppression
                    Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
                    As-needed treatments for other conditions: Klonopin, Ambien

                    Comment


                    • #11
                      Re: IC is back after bladder removal

                      Jeanniebug,

                      Yes, the 80 pouches per month is expensive but it isn't just because of the pouches. There is other medical products that are necessary such as adhesive removers, night jug and cleaners, and barrier rings to help stop the leakage. All of this comes to close to $2,000 per month. I have two insurances. One is medicare and another is a commercial insurance through my husbands employer, so I don't have to pay anything currently. For anyone who has this surgery, I highly recommend getting a gap coverage to help cover the costs.

                      To answer your question about this surgery. For me it wasn't a choice because I had IC for 41 years. The IC had eaten my bladder away to the size of a walnut. My surgeon said it was the smallest he had ever seen. I was in severe pain at only 25 cc's and I had scar tissue in my urethra from a botched surgery. I was pushing to pee for 21 years, despite the fact that I had went through so much pelvic floor therapy.

                      The reasons I am grateful I had the surgery;

                      1) I no longer have to push to pee. That part is nice.
                      2) I no longer have the feeling that a house is pushing down on my pelvis.
                      3) I no longer have that burning feeling or worms crawling in my bladder. That part is nice too.
                      4) I am no longer woken up at night to pee, and I actually now get a full nights sleep (except when my fibromylagia is hurting)
                      5) I no longer have to wear a foley catheter to leave the house.
                      6) I no longer have to use a catheter to pee or worry about a very sore urethra.
                      7) I can sit through an entire movie now without having to get up to pee. I hook up to a urine bag.

                      The reasons I regret the surgery are;

                      1) I'm tired of changing 2x per day or more, which takes me sometimes 20-40 minutes because it takes a long time to get the glue off.
                      2) I'm tired of feeling a heavy pouch when it's full in my pants. I sometimes wish I "just had my stomach" back.
                      3) I sometimes regret that I got the outside bag, but my urologist said that having an internal bladder (known as the Indiana Pouch) causes more phantom pain, and they therefore now recommend to all IC patients to get the outside urostomy bag instead. Sigh.
                      4) I'm tired of changing my bed sheets at night when I have an accidental leak (which happens to everyone at some point).
                      5) I'm tired of the medical costs and the "certain things" that medicare refuses to cover.
                      6) I'm tired of always being on the phone with my medical supplier, telling them they sent me the wrong item, etc...
                      7) I'm tired of washing wash clothes (I used them to catch the urine during changes). I actually bought a baby diaper staker to hold all my clean wash clothes!! (Note: I have found this method to be cheaper than buying napkins or paper towels). Some people use tampons to catch the urine which is costly.
                      8) I'm tired of carrying a backpack of medical supplies every time I leave the house in case I have a leak. I miss having a purse.
                      9) I'm tired of the phantom pain associated with it.
                      10) I'm tired of cleaning urine bags and night jugs, and I'm tired of wearing a urine bag extension when I need to.

                      So as you can see, it's a 50/50 thing. I sometimes have to remind myself that it wasn't a choice. I'm glad I don't have the IC pain anymore but I don't like the phantom pain. It's hard to say. I wish I never had IC to begin with.

                      As for the phantom pain, I need to describe more in detail about that. Because alot of people don't understand how exactly it relates. I know I didn't. My surgeon cut some of my bladder nerves. So I don't have any feeling in the middle of my pelvis where my bladder used to sit. However, there are hundreds, if not thousands of nerves around the bladder. He could not cut every single one. This is why organ donation of a bladder is not possible. He didn't touch any of the nerves in the front of my pelvis. So guess what? Now I feel like I have a full bladder sitting right on top of my pubic bone. URGH!!! I don't even want to have an orgasm or sex, as the clitoris nerves are all in the same are of the front pelvis and aggravates my phantom pain to high heaven. I take Gabapentin for it, as well as Valium suppositories and Flexeril. Sometimes all of that doesn't take away the "full bladder on my front pelvis bone". It's not like urges. It's different, yet nerve wraking. No doctor will give me anything stronger for the phantom pain. I have tried several pain clinics and not had any luck. The FDA has really cracked down on doctors prescribing stronger pain relief and most doctors now are very reluctant to prescribe anything other than gabapentin and tremadol. At least this is what I have found in Indiana. I have heard that Tennessee is not as strict with pain medication, though I really don't want to travel out of state every 3 months. The pain doctors are like that with me too. They don't believe my pain.

                      Also, changing pouches 80 times per month is not normal. Normal is anywhere from 10-20 times per month. I have been to several stoma nurses around the state. 15 times to be exact. No one has ever been able to get it to stop leaking. I'm a complicated and rare case.

                      That being said, if your bladder has not shrunk, that is good news. But that doesn't mean the IC won't shrink it down in the years to come. Only you can decide when enough is enough. Every person is different and their are many who have no complications at all with their urostomies. Most say it is a positive experience. God always seems to give me the most difficult challenges in life. I've already done the pity party "why me?" plenty of times.
                      Last edited by Trei6y1952; 04-06-2017, 10:19 AM. Reason: typo

                      Comment


                      • #12
                        Re: IC is back after bladder removal

                        Green_the_fish,

                        Yes, I've tried pelvic floor therapy again after my surgery with no success.

                        Thanks,
                        Trey


                        Originally posted by green_the_fish View Post
                        Trei6y1952, I am also interested in your case, and also very sorry you've had to go through such an ordeal.

                        Since you describe a burning in the muscles around the area where your urethra used to be, I'm curious as to whether you've tried pelvic floor therapy, and if so, how it went for you.

                        I'm hoping for the best for you
                        Last edited by Trei6y1952; 04-06-2017, 10:13 AM. Reason: Correction

                        Comment


                        • #13
                          Re: IC is back after bladder removal

                          Trei6y1952..how are things go on for you now?

                          Comment


                          • #14
                            Re: IC is back after bladder removal

                            I had a urostomy (ileal conduit) in March 2015 and have done very well with it. I change my bag every 6-7 days so am only using 5-6 bags a month. It takes me 3-4 minutes to change my bag. I've never had a leak at night, or soiled my sheets or had an accident in public. Although I carry an "emergency kit" in my purse, I've never had to use it. The only supplies I use are a Hollister one-piece pouch, Coloplast night bag and adhesive wipes.

                            I was curious as to whether or not your leaking problems might be resolved with convex pouches? After my stoma shrank, I did experience some leaking (I was at home each time, thank goodness) and after ordering various samples from different companies, I realized I needed to switch to a convex pouch. That took care of that issue. Have you ever tried those? Also, do you use pre-cut or do you cut the hole for your stoma yourself? I had a lot more success with the pre-cut because the hole is precise and you can't mess it up... so that's what I get.

                            "When you gotta go, you gotta go!"

                            Comment


                            • #15
                              Re: IC is back after bladder removal

                              Trei6y1952 I just read this thread and am curious how you are doing with your SS. I also had to change my user ID as my whole bladder/vaginal history was obtainable on any search engine. Kind of embarrasing. I am just curious why you have to get a letter from a doctor for SS? Dont they get your medical records and make a decison from there? I hired an attorney for my inital filing, but the man who reviewed my case said I didnt need the attorney because I had the largest medical record he had ever received, over 1000 pages. I was approved on the first try for 3 years. My reeval is coming up in Oct and I am very nervous about it as I still cant work and live a life of misery and hell. I just started Medicare and also have private Blue Cross thru my husband. I have not had any claims paid for yet from Medicare, and they told me that if you have commercial insurance Medicare does not pay anything towards your copayments, deductibles, or coinsurance. I wonder why even bother paying the extra $136 a month for it?
                              Also, I lived in TN when my IC first came out of remission. The pain clinics there make you go every month if you need long-term treatment. The one I went to was very good with me, but the wait times were horrible, several hours in a waiting room full of smokers who stunk and pill addicts. I had to bring food, water, and my IC meds just to make it through.
                              I hope things are looking better for you. I am considering a cystectomy also but no one will do it. They tell me I need to do a hysterectomy first to eliminate the hormonal complications that I am having. I am going to post the story in a different thread.
                              I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

                              Comment

                              Working...
                              X