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  • Bladderella...how are you?

    I was wondering how you're feeling since your Botox? I know you said it usually takes up to 5 days, so I was wondering how you're doing??
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

  • #2
    Re: Bladderella...how are you?

    Thanks for asking, my2boys. Since the botox injections last Thursday, I have had what I can only describe as an itchy, stinging bladder cramping almost daily. I don't know if that's my bladder healing from the injections or if it's the injections actually working or what. I'm going to assume it's one or the other. It's a bit uncomfortable. I tried like heck not to take the Norco unless I really, really had to and ended up taking it 3x a day through the weekend. I haven't taken any since then, though. I'm treating that stuff like gold.

    Last night the crazy itchy stabbing hit me about 1:00 am and lasted till about 4:00 am. I was pretty miserable especially since I couldn't take anything. Ice packs seemed to aggravate it, so did a heating pad on Low. So, I just suffered through it. I couldn't take anything because I am having fasting blood work today (as part of my annual physical with my primary doctor) and couldn't eat or drink anything after 10 pm last night. To me, that meant no meds either. I didn't want it to skew the results of the blood work from any medication in my system. Thank goodness my appointment for the blood work is in an hour. I can't wait till it's over so I can just take my meds, drink a big glass of water and have some breakfast. Maybe that will help. I have not veered off the IC diet at all so I don't think this is a flare.

    The botox does seem to be working a little. There are times during the day when I can hold it for 2-3 1/2 hours. Before the botox, it was more like 1-1 1/2 hr tops. Also, when I have urgency now, I still have leaking sometimes, but not as bad as before the botox. I've been going 4-5 times during the night. My frequency always increases for about 4 hours after I take my blood pressure medicine and I don't know that even botox can do anything about that. My void totals since the injections are as follows:

    Sat 24
    Sun 28
    Mon 15 <-- for me, this is incredible
    Tue 22

    Is this as good as it gets? I have no idea. The jury is still out. Maybe I have a bladder that's just slow to respond. I'm willing to give it some time before I can say it was a success or a bust since it's only been a week. My urologist's office hasn't called me yet to set up a follow-up appointment, but should be doing so sometime this week.
    Last edited by Bladderella; 11-12-2014, 03:15 AM.

    "When you gotta go, you gotta go!"

    Comment


    • #3
      Re: Bladderella...how are you?

      Well it looks like you had a good day there with only voiding 15 times. I have heard it takes some time to be effective, so it will be interesting to see if you continue to improve.

      Hopefully, you've gotten some water and food in you now, because I know if I can't drink water, my bladder gets very unhappy. I remember my hydro was at 2pm at the hospital and of course, nothing by mouth after midnight. By the time they took me, my bladder was freaking out!

      I do the same thing with narcotics, take them only if I have to. But remember, you need to take care of yourself, and if you need pain relief from the procedure, take your meds. Did they inject botox directly in or on your bladder? My neurologist wanted me to have 35 botox injections around my head last year (for migraines). I was going to do it, but my insurance was not cooperating, so I forgot about it.

      Well, am hopeful for you! Please keep us posted. 😊
      Jane
      Diagnosed 1/7/14 via cysto/hydro

      Current Treatment:
      10 mg amitriptyline, DH Aloe Vera

      Used During Flares:
      Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

      Practicing bladder training and stress control (hot baths, pelvic stretching)
      Recently tried PT, do not appear to have PFD

      Things that have not helped in the past:
      Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

      Also have migraines and IBS

      Comment


      • #4
        Re: Bladderella...how are you?

        So I get to the doctor's office for the nurse to draw blood and when she asks "how are you doing today?", I replied, "I am hungry and thirsty since I haven't had anything to eat or drink in the past 12 hours but that's ok, I've got a big jug of ice water waiting for me in the car when we're done here". She says, "What? You haven't had food or water? It was ok for you to have water and black coffee, just nothing else. " DUH!!!!! I totally misunderstood the instructions. So I caused my own self some of that grief last night because I could have at least had water and I didn't. Ohboy.

        The urologist wants to see me 6 weeks following the botox injections so my next appointment is the week before Christmas. Since he doesn't want to see me till then, I figure I should at least give my bladder 6 weeks to adjust to the injections. That seems reasonable to me so we'll see how everything looks and feels then.

        I got the injections inside the bladder, into the lining of the bladder, all the way around the inside.

        "When you gotta go, you gotta go!"

        Comment


        • #5
          Re: Bladderella...how are you?

          Oh geez, well you survived without the water, so that's good.

          Yeah, I would imagine you have to give it time to work. Similar to a hydrodistension. I noticed a big improvement around week 4 (and my uro agreed that's about average for most people who are going to benefit from it). Botox may be similar. I'll be looking for your updates!!
          Jane
          Diagnosed 1/7/14 via cysto/hydro

          Current Treatment:
          10 mg amitriptyline, DH Aloe Vera

          Used During Flares:
          Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

          Practicing bladder training and stress control (hot baths, pelvic stretching)
          Recently tried PT, do not appear to have PFD

          Things that have not helped in the past:
          Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

          Also have migraines and IBS

          Comment


          • #6
            Re: Bladderella...how are you?

            I hope all goes well and that you see some improvement soon! Keep us posted.

            Comment


            • #7
              Re: Bladderella...how are you?

              Bladderella, can you update us again? Hope you are well.

              Comment


              • #8
                Re: Bladderella...how are you?

                It's been a month since I got the botox injections. Here are some things that have happened and that I've noticed so far:

                1. My sense of urgency has definitely improved. I haven't had one incident of leakage since the botox and this was a real problem for me before. I'd be sitting in a chair, feel the urge to go, stand up to head for the bathroom, and as soon as I stood up, I started leaking. Between me and my puppy, we were doing a number on the carpet. I very rarely need to use incontinence aids now.
                2. Frequency has improved. It's not great, but it's better. I was going on avg 25x a day (5-7 times at night) before the botox. Now it's about 15-18x a day (2-4 times at night).
                3. My bladder seems to be more sensitive since the botox. I have a raw-like stinging sensation every day, usually all day from the moment I wake up. Sometimes I'll take some AZO and sometimes I'll take a couple of extended release acetaminophen (650mg) which seems to help. It also seems to calm down some after I eat a meal and drink water. The good news is, I have not needed to take any Norco for the past couple of weeks.
                4. I have not decreased my water intake and have NOT strayed from the IC food list. I have stuck to the IC diet like a horsefly to flypaper. I have not had a flare since the botox!
                5. I had a problem with constipation before the botox but recently I started taking the stool softener, Miralax. It has really helped. When I get backed up it's like the nerves in my bladder are stressed and the stinging worsens. It does subside some after I've had a bm, but it never completely goes away.
                6. My heating pad no longer gives my bladder comfort. It seems to make things worse. I put the heating pad on my belly and my bladder does NOT like it. I get more relief now from ice packs that I put between my legs and up over my pubic bone.
                7. I continue to take 3 hydroxyzine a day per my urologist. Even though I'm getting a little more sleep at night now, the meds make me very sleepy during the day. I was driving with my adult son the other day and we were at a stop light about a mile from home. All of a sudden I heard him shout "MOM!". I didn't realize that I'd nodded off while waiting for the light to turn green! Not good. I'll be bringing this up to the urologist when I see him in 2 weeks for my botox follow-up. It may be that I need to go back to taking only 2 hydroxyzine a day instead of 3.
                8. I stopped taking the Renew Life probiotic for a while. It seemed like when I took it, the stinging feeling in my bladder worsened.
                9. As my bladder is filling, the stinging is more pronounced. The good news is that now when I pee, I can count to 6-one thousand, sometimes 7. It used to be that I couldn't get past 4-one thousand so I'd say that my bladder is holding a little more urine these days.

                So.... would I do it again? I don't know yet. I'd like to give it at least 3-6 months before I feel I could honestly answer that question. My urologist and I believe that I have both Interstitial Cystitis and Overactive Bladder. The botox injections only address the Overactive Bladder part so there is still the IC part to deal with.
                Last edited by Bladderella; 12-06-2014, 10:09 AM.

                "When you gotta go, you gotta go!"

                Comment


                • #9
                  Re: Bladderella...how are you?

                  I'm glad you've seen some improvement in your OAB symptoms. Decreasing the amount of times you get up during the night is huge. Did the doctor indicate when the stinging might subside?

                  How scary about the nodding off while driving. I hate any medication that makes me drowsy (unless, of course, I'm planning on sleeping). I think there's a warning with the hydroxyzine not to drive or operate heavy machinery. You probably shouldn't be driving just taking 2. I must be really susceptible because half a dose put me out for 13 hours.

                  It's interesting that the heating pad no longer is soothing. But glad the cold packs help.

                  I hope with every day you notice more and more improvement.
                  **************************************************************

                  Experienced first symptoms in 2007
                  Diagnosed with IC 6/13

                  Diagnosed with PFD (Pelvic Floor Dysfunction) 8/13

                  Medications: .5 mg. Ativan, occasionally for spasms

                  Supplements: DH Aloe Vera capsules, 3 per day for maintenance and 6-12 per day during flares


                  Following Strict IC Diet

                  Comment


                  • #10
                    Re: Bladderella...how are you?

                    LoriSue- the urologist didn't really tell me what to expect immediately following the procedure.... only that I should see improvement in about 5 days, so I have no idea if this stinging thing is normal or not. I haven't seen or talked to the doc since right before I was wheeled into the operating room. If I saw him in post-op, I don't remember. I'm pretty sure he got a good look at the inside of my bladder during the procedure so I am anxious to ask him what he saw and how things looked in there. They scheduled a follow-up appointment for me on Dec. 18 (6 weeks post-op), so I won't see him till then. Also, since we've tackled the OAB with the botox procedure, I'd like to know if he has a plan for tackling the IC or just what's next in general.

                    "When you gotta go, you gotta go!"

                    Comment


                    • #11
                      Re: Bladderella...how are you?

                      Thanks for the update. Sounds like it's been a mixed bag for you. Hopefully you will continue to feel better and the pain will go away.

                      I am scheduled for next Wednesday. Like you I also have a very overactive bladder that I would call Twitchy if I were into naming body parts. So I'm hoping it will improve the u/f. In my bladder study, it contracted with just a few ounces in there. I figure I will give it a shot. Maybe some of us can at last be success stories.
                      Last edited by cjs; 12-06-2014, 10:04 AM. Reason: Grammar

                      Comment


                      • #12
                        Re: Bladderella...how are you?

                        Originally posted by cjs View Post
                        Thanks for the update. Sounds like it's been a mixed bag for you. Hopefully you will continue to feel better and the pain will go away.

                        I am scheduled for next Wednesday. Like you I also have a very overactive bladder that I would call Twitchy if I were into naming body parts. So I'm hoping it will improve the u/f. In my bladder study, it contracted with just a few ounces in there. I figure I will give it a shot. Maybe some of us can at last be success stories.
                        Is this your first botox treatment? Mine was my first, too. Please come back as I have and give us updates as to how you're doing. It'd be nice to compare notes.
                        Last edited by Bladderella; 12-06-2014, 01:42 PM.

                        "When you gotta go, you gotta go!"

                        Comment


                        • #13
                          Re: Bladderella...how are you?

                          Yes it will be my first. I've tried OAB meds, and ditropan helps a little, but not enough, play dry mouth is awful. Even with it I go 20ish times a day and generally feel like I have to go all the time.

                          I will check back in next Wednesday afternoon. Doc is doing this in the office.

                          Comment


                          • #14
                            Re: Bladderella...how are you?

                            It sounds like you have seen some improvement. That's wonderful.


                            Donna
                            Stay safe


                            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                            Have you checked the ICN Shop?
                            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                            Patient Help: http://www.ic-network.com/patientlinks.html

                            Sub-types https://www.ic-network.com/five-pote...markably-well/

                            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                            [3MG]

                            Anyone who says something is foolproof hasn't met a determined fool

                            Comment


                            • #15
                              Re: Bladderella...how are you?

                              That's great that you seem to have solved the OAB urgency and leaking. Maybe the burning is part of the recovery. It sure would be nice if that disappeared too. It sure is nice to hear that the Botox did help you some.
                              Jane
                              Diagnosed 1/7/14 via cysto/hydro

                              Current Treatment:
                              10 mg amitriptyline, DH Aloe Vera

                              Used During Flares:
                              Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

                              Practicing bladder training and stress control (hot baths, pelvic stretching)
                              Recently tried PT, do not appear to have PFD

                              Things that have not helped in the past:
                              Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

                              Also have migraines and IBS

                              Comment

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