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  • #61
    Prelief doesn't give you the freedom to eat and drink everything --- it can, however, help avoid a flare if it's something that's slightly irritating. I take it if eating away from home or if I think something might irritate. When I'm at home I stick with things I know are safe for me, with few exceptions. Since you are still having a really hard time, I suggest that you stick with things you know are safe for you until you are doing better before adding anything questionable.

    I also suggest that you click on the diet link in my signature below and print out a copy of the diet list so you can consult the list when planning your meals and snacks. I find it easier if I plan food for at least a couple of days in advance.

    Are you keeping a diary to help track how you react to different things?\

    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


    • #62
      Of course I had already printed the list and I have been recording what I eat. Thank you for the clarification regarding Prelief.

      Today I spoke with a urologist. When he heard of the symptom of pressure and tension, he said that he believes I have IC (despite the other doctor doing a digital exam and giving me the diagnosis of prostatitis). He will do be doing a cystoscopy on Wednesday next week.

      He prescribed Amitriptyline, but I don't think I will take it as I am worried about it increasing the chance of developing dementia. I also don't want to take that IC drug that has a risk of making one blind. This urologist hasn't heard of the treatment of IC that involves stimulating nerves with electric current.

      This urologist will be doing a cystoscopy, but I don't believe he is planning to fill the bladder with water, and then fill it with a certain solution that irritates the bladder of IC patients, and that the healthy people can't tell apart from water. I believe I read you mention that you are glad this is no longer being used to diagnose IC.

      Should I ask for that test, and if not are there other tests I ought to ask the urologist about?

      Thank you, Donna!

      p.s. Another sleepless night...

      When I asked my urologist whether IC patients who stay away from their triggers are able to avoid flares, he replied that the flares occur at random, but of course those who don't follow IC diet get flares more often and the flares are more severe. Donna, is my urologist right, or is it the case that some people are able to mostly avoid flares and for them their IC is incurable in the sense that if they consume the trigger food, they will still get a flare, even if it was years since their last flare?
      Last edited by BillB; 02-13-2021, 12:56 AM.

      Comment


      • #63
        You might want to rethink amitriptyline at a low dose, at least temporarily, to see if it will help with sleep. Our doctor explained that it helps with pain by interfering with the pain receptors in the nerve system. My husband took 10 mg nightly for arthritis pain and it definitely helped him.

        When the bladder is empty, it collapses, much like a balloon, so when a cystoscopy is done, they do instill water so the bladder lining becomes visible. It may not diagnose IC, but will help with the ruling out other possibilities that is a part of an IC diagnosis. The procedure I mentioned would have been a hydrodistention, which requires anesthesia, and the bladder is stretched --- hydrodistention is almost always done in a hospital or surgery center. The procedure that is sometimes done during an office cystoscopy is a potassium sensitivity test --- they instill a water solution alternately with a potassium solution, without telling you which it is --- if the potassium causes pain, that can mean it's IC. It's immediately drained out and water instilled to get rid of the potassium and the pain lasts only a few minutes. There are some doctors who feel this is the way to diagnose, others don't. You might want to ask your doctor how he feels about the test.

        One thing I have seen happen too often is that someone with IC will religiously follow the diet for a long time and become symptom free --- then they get careless and go back to eating and drinking everything --- they are able get away with it for a while, but then are back in pain. I do well most of the time, and I should know better, but last week I veered from the diet and had a miserable day and night. I won't do that again --- at least for a while.

        There are things other than foods that can bring on a flare --- some examples are stress, over-exertion, tight clothing.

        I hope your urologist will be able to diagnose you soon. It sounds like he is at least suspecting interstitial cystitis.

        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


        • #64
          Donna - thank you so much for sharing what you know about IC with me.

          "One thing I have seen happen too often is that someone with IC will religiously follow the diet for a long time"

          How long are we talking about: 3-6 months? Longer?

          What fraction of IC sufferers, would you say, are able to get IC under control, and mostly get their life back?

          My urologist believes that I have IC (even before doing any tests).

          "last week I veered from the diet and had a miserable day and night"

          I am sorry that that has happened to you, but I am glad that the suffering didn't last longer than 24 hours. Would you say that these flares normally last 24 hours, or are there 3-months flares brought about by eating a tomato and an orange once?


          "There are things other than foods that can bring on a flare --- some examples are stress, over-exertion,"

          Does this mean that intense exercise is to be avoided?

          It is too bad that one gets feedback several hours after the action. In case of over-exertion, it will be difficult to know when to stop to avoid a flare...

          Has anyone tried drinking enough water to make urine look less yellowish and closer to water? The only reason I can think of to cause the damage to the bladder not heal is the presence of urine. If one drinks a lot and dilutes the urine, it there is a chance the bladder will be able to heal. Have you heard any IC patients experimenting with drinking something like 4 liters (a gallon) of water a day for several months?
          Last edited by BillB; 02-13-2021, 01:53 PM.

          Comment


          • #65
            At this time there is no cure for interstitial cystitis, but in most instances it can be controlled. Once control is achieved, I suggest sticking with the routine that got it under control. That can take weeks, or months, but most do get there. I wish I had percentages, but I don't, but I have been here over twenty years and have seen many come and go.

            For me, a diet-induced flare usually lasts less than two days. There have been instances when I felt something was worth it.

            In the case of diet, I suggest sticking with the items listed as "Usually bladder friendly" until you feel better. Then begin trying things on the "Foods worth trying" list, one at a time. When you try one of those, start with a small amount (I did 1/4 cup) and eat it every day for three or four days. If you still feel okay, try another, using the same time lines.

            For someone new to IC, I think it's always a good idea to keep a detailed diary, listing time of day, everything that goes in your mouth, activities, urinary frequency and about how much, how much sleep, and pain levels. That can help you track things that are a problem and sometimes things that help.

            Some ICers can tolerate intense exercise, some can't --- if you're doing intense exercise, I suggest slowing down a little at a time and see if that helps. I have some other health problems that don't allow me to do any strenuous exercise, but since my IC diagnosis I have not been able to do any exercise that strains my abdominal muscles.

            I think you are doing what you need to do --- the more you can learn about IC, the more you will be able to deal with it. I encourage you to scroll to the top of this page and click on ICN Front Page and have a look at other pages on this site. And, of course, I am here to attempt to answer your questions.

            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


            • #66
              Thank you, Donna!

              It is reassuring to know that the flares will likely not last weeks.

              I have been eating only the "bladder friendly foods".

              Today is a weird evening. Normally I know whether I am in for a sleepless night. But that's not the case today.

              Comment


              • #67
                I'll hope you sleep well tonight.

                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


                • #68
                  Despite how it felt in the evening, the night ended up being ok. If that wasn't the case, I would not know what to do, as there was nothing I ate that day that could have possibly caused a flare.

                  For the past 30 years I have been feeling great about eating healthy - mostly fruits and vegetables. I can still eat cauliflower and broccoli. But for now my diet has switched from the healthy stuff to meat and rice. Depressing. Then again, I never felt good about the increase in insulin due to eating sweet fruit. So there's that.

                  I am surprised that Daikon Raddish is on the list of IC-friendly foods. It is intense and bitter, so you would think that it would irritate the bladder.

                  Comment


                  • #69
                    Originally posted by BillB View Post
                    I am a man in my mid forties. For the past three weeks I have been feeling a persistent urge to urinate that doesn't go away after urination. There is no pain or blood. I've had an ultrasound of my bladder and prostate. It found that the prostate's "central zone is slightly prominent in size, and protrudes slightly into the bladder". The prostate wasn't found to be enlarged. Also "No significant postvoid bladder residual volume (15 cc)."

                    I've had a urine test done, and it hasn't revealed an infection.

                    I began taking Tamsulosin/Flomax two days ago. I began taking Aloe Vera gel pills at the same time. The past two nights my symptoms were noticeably better. Yesterday during the day my symptoms were a little better. In an attempt to figure out what it is that is reducing my symptoms, today I haven't taken Aloe Vera pills in the morning and it so happens that my symptoms during the day today are bad again. I am not sure whether my improvement at night was due to Flomax or due to Aloe Vera...

                    I read that to be diagnosed with IC, one needs to have the symptoms for at least 3-6 months. Is it the case that there is Still a chance that these horrible symptoms might go away? What else could it be besides IC? What tests should I ask my doctor to do next?

                    Several years ago I began experiencing ringing in my ears/Tinnitus. I have been active on tinnitus forums, making over a thousand posts, many of which helped the newbies to stop panicking. Tinnitus often fades and mostly goes away after 2-3 years. I realize that this is not the case for IC. Is there still hope for those whose symptoms have lasted for less than 6 months?

                    As you can imagine, I would be extremely grateful for any advice, information, or tips you might have for me.
                    If you are only having urgency it could be pelvic floor dysfunction. I was misdiagnosed with IC for years. Please read post under Success. The right physical therapist made all the difference.

                    Comment


                    • #70
                      Originally posted by BillB View Post
                      Despite how it felt in the evening, the night ended up being ok. If that wasn't the case, I would not know what to do, as there was nothing I ate that day that could have possibly caused a flare.

                      For the past 30 years I have been feeling great about eating healthy - mostly fruits and vegetables. I can still eat cauliflower and broccoli. But for now my diet has switched from the healthy stuff to meat and rice. Depressing. Then again, I never felt good about the increase in insulin due to eating sweet fruit. So there's that.

                      I am surprised that Daikon Raddish is on the list of IC-friendly foods. It is intense and bitter, so you would think that it would irritate the bladder.
                      The list just says radishes --- it doesn't specify white ones --- I don't really care for them so I honestly can't answer that.

                      I'm glad you had an okay night --- you might want to do the same things today that you did yesterday to see if you can have a second good night.

                      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


                      • #71
                        Thank you, Kristin.

                        I will definitely want to look into it. Unfortunately, abstaining from certain foods seems to be helping my symptoms, and this seems to be more consistent with IC. On the other hand, when I press on my lower abdomen (just to the right of my left hip and just to the left of my right hip), I feel pain. It seems to not be where the bladder is. It seems to be a muscle that's hurting. Then again, that's not where one's pelvic floor is...
                        Last edited by BillB; 02-16-2021, 06:34 PM.

                        Comment


                        • #72
                          Thank you for your response, Donna.

                          I was able to sleep during the past three nights. I still wake up every 80 minutes, but this is a big improvement over some of the nights I had had.

                          I noticed that after every urination, I experience a bit of a mini-flare for about 10-30 minutes. During these mini-flares my bladder feels full and tense. Is this a known symptom?

                          Comment


                          • #73
                            It used to be that I had more discomfort after urination than I did before. I'm glad you're getting some rest --- if you can go back to sleep quickly, that's a huge benefit. It's sounding like IC is a distinct possibility for you. I think you'll breathe a sigh of relief once you have a definite diagnosis. I know I did.

                            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


                            • #74
                              "It used to be that I had more discomfort after urination than I did before."

                              That's exactly my case. Do you know why this symptom might have gone away for you?

                              I am having second thoughts about doing a cystoscopy. I learned that a friend (who got diagnosed with Prostatitis 14 years ago) has had it done and his symptoms became worse for over a week.

                              For the past 4-5 nights I have been able to sleep. This might be the case due to me changing my diet. I am concerned about losing all of that progress as a result of that cystoscopy. Another thing that might go wrong a cystoscopy getting me infected with a fungi (now that I have been taking antibiotics for so many weeks).

                              Of course a cystoscopy might uncover a small tumor that wasn't visible on the ultrasound. But then again I had no blood in my urine.

                              Would you do this procedure, if you were me? How often do people get a serious flare following a cystoscopy?

                              If it is a good idea to go ahead with having a cystoscopy done, is it a good idea to eat tomatoes the day before the procedure to ensure that the procedure finds signs of IC? I am worried that if I stay on IC diet for about two weeks before my cystoscopy, the irritation will be harder to see...
                              Last edited by BillB; 02-17-2021, 11:16 AM.

                              Comment


                              • #75
                                Have you ever had a catheter inserted? If so, then you already know what a cystoscopy feels like. I'm going to assume that you have not. I have had several cystoscopies and have never had an infection from any of them. I have had many, many instillations via catheters with no problem.

                                One thing I have found out is that if I relax for a cysto, it isn't bad at all --- I put my hands one on top of the other at waist level and concentrate on breathing slowly and deeply and consciously relax my muscles --- it's something you can practice at home before the cystoscopy.

                                Yes, I would have the cystoscopy. It may not diagnose IC --- it didn't mine --- but it was a part of the ruling out process towards a diagnosis. It did diagnose trigonitis, which is irritation of the trigone area in the bladder --- and does suggest IC. Mine was diagnosed by a cystoscopy with hydrodistention with spinal anesthesia in a hospital operating room. Sometimes hydrodistention alleviates symptoms (it did mine) and there are some doctors who feel this is the only way to diagnose IC. However, more and more are diagnosing based on symptoms and ruling out other problems --- I hope that's what your doctor prefers.

                                Another thing to think about --- for each and every procedure, there will be horror stories.

                                I'm not sure why that after urination symptom went away --- I'm actually doing very well as long as I avoid anything that I've found is an irritant.

                                I'm glad you are getting more sleep --- sounds like you are finding ways to feel better.

                                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

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