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Having success and tips for new IC patients

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  • Having success and tips for new IC patients

    Dear All:

    Here are some things I have learned from personal experience, medical professional's help and my personal research of information, that may help some people experiencing their first IC troubles. Although not fun to re-live this experience by writing this, I really want to offer hope and help to anyone going through the IC ordeal. As I write this I realize how terrible a situation it was and am relieved at how much better it is. The difference is night and day. So hang in there.

    If I knew then what I knew now, here is what I would do: If you have symptoms that feel like a UTI or bladder infection but the urinalysis can not determine any bacteria, don't wait months before you get treated for IC. If your doctor thinks that you need to wait months or a year to be "properly" diagnosed with IC, leave and find other help. Go to a Urologist who specializes in IC. And if you are in a small town go to a bigger town or city if necessary to find more sophisticated medical help. Don't be offended if you are in a small town. I am too and this is what I had to do. The fact is that there are just better opportunities for highly specialized medical professionals in larger cities. This is your health and your life and not the time to worry about offending a local doctor or any other medical professional, no matter what their pedigree. If you can't get the help you need, thank them for their time and get out of there.

    I finally found some competent and well informed help in the form of a PA at a Urology Clinic and a Physical Therapist. The PA's school dissertation was on IC and has the ability to think and problem solve. The Physical Therapist specializes in women patients with IC, other bladder problems and works closely with the previously mentioned PA. Damage, that is worsening symptoms and problems, continue to occur if not treated. So get the treatment started ASAP.

    What helped right away (things to ask your doctor about): The "first generation type" anti-histamine Hydroxyz Pam. I started with 25 mg. At first it made me sleepy, but after a week my body adjusted. We increased the dosage to 50mg. This immediately helped to eliminate my most irritating symptom of urethra "tingling" making me feel like I had to urinate even after just voiding. I take it in the evening before bed because it can cause drowsiness. One thing is that if the anti-histamine works, it tells you something about the problem.

    The PA prescribed Prosed/DS. It worked much better than the Urised or the Pyridium. Also a benefit is that the blue pills are less staining than the yellow pills. (Humor: I felt bad about leaving little yellow spots in all the toilets all over town.) The other thing that was wonderful instant relief was the use of Lidoderm 5% patches. They help with the bladder and abdominal pain without taking more sedating pain relievers. My PA also wanted to give me some control over the symptoms. This and some Lidocain gel for direct application to the urethra helped me to be able to contain the symptoms so I could at least leave the house and function. Unfortunately I developed a reaction to the adhesive in the patch and couldn't use them any more. So you may want to start with just a few and see if you can use them. Also, you can cut them in half and just use a half of one placed directly over your bladder. But when I first used the patches, I felt like they were a God send.

    My PA also started me on Elmiron 100mg twice a day. Later increased to 100mg 2 capsules two times a day (you might ask your doctor why not be on the highest dosage?). These things will help but take a long time, so get started ASAP.

    While the other things help with the symptoms, the items that are helping "fix" the problem are: the Elmiron, Hydroxyz Pam anti-histamine(actually helps with both), Glucosamine type supplements.

    If you can't find competent medical help, you may try some anti-histamine over the counter like Diphenydramine (recommended by my pharmacist as an alternative to Hydroxyz Pam). Obviously the best situation is to be under the direction of a competent medical professional. But if you can't, I would consider this alternative on a short term basis. It will make you tired so take it at night. It might help you sleep through the night. Do not overdose! And if it works this would be something to discuss with the new medical professional your found.

    Supplements I think are working: (My PA has agreed that these make sense. Most have to do with epithelial glycosaminoglycan (GAG) synthesis. Helping to rebuild the bladder lining.) CystoProtek as directed on package, N-Acetyl Glucosamine 500mg 1 to 3 times a day, Magnesium Glycinate 400mg 1 or 2 times a day, Omega 3 fatty acid oil like fish oil. Discuss all supplements with your medical professional.

    Things to final recovery: It may seem strange but Physical Therapy is probably needed for anyone who has had IC problems for even just a month. My PA prescribed it and it has made the final difference between symptom control and restoring health. The muscles definitely get affected by the bladder and urethra pain and discomfort. Just be careful not to get a physical therapist who doesn't understand IC and wants to treat you as if you just need to strengthen your abdominal and pelvic floor muscles. This could cause more harm. Instead, find a Physical Therapist that perhaps works with IC referrals from Urologists and focuses first on calming the muscles and getting the knots and trigger points to release. This requires some direct trigger point therapy including putting a finger on the trigger points on the urethra in the vagina. So find some one you are comfortable with and trust and listens to you. My PT is a woman and I don't think I would feel comfortable with a man for this treatment. The progress started out slow but it has brought me back much closer to "normal". I can go three or more hours without having to urinate. And the abdominal pain has subsided to minimal and to sometimes none at all. After the muscles eased up, I was given some exercises to strengthen muscles and exercises to help me to control any symptoms if they recur. It has taken me 6 weeks at two times a week. I got significant results in abut 4 weeks. (At first it was once a week but increased to two times a week for faster progress.) I'm at week seven and down to once a week. I also use less Prosed/DS bladder pain pills.

    Things I wouldn't do: Don't wait too long for treatment to begin. Much damage was done by not getting started on IC treatments early on. Like most folks, I was on several anti-biotics including Sulfa which seemed to exacerbate the situation. And then the histamines kept causing more inflammation and the muscles kept tightening with the pain. This went on for more than two months and getting worse before diagnosing and treating IC. Although that is a shorter time than a lot of folks so I remind myself to be thankful. But it does get worse with time and a milder case is easier to treat than a worse one. That is why getting help that will get you started on treatment is so important. Don't let them send you home to suffer for weeks alone. Get back in their office and if they still do nothing then go someplace else.

    The worst thing I went through while looking for a diagnosis was an ultrasound look for ovarian cancer. Even though they thought that the chance for ovarian cancer was minimal, and would not have ordered the test expect for the fact that I had bad symptoms and they had no other tools to deal with my symptoms. I thought that an ultrasound was non-invasive so that even though I was having bad symptoms, how could it hurt? They did not tell me about putting a probe in my vagina until I was on the table and had completed a "normal" ultrasound on the outside abdomen. The process made all the muscles even more tight and knotted and has slowed my recovery. You could have the part of the ultrasound where the device is on the outside of your abdomen but unless you think ovarian cancer is a real possibility, I wouldn't do it. Had I known in advance about the probe, even at the time of no diagnosis I would not have done it because I knew my symptoms were bad. The probe exam created IC type of symptoms in my vagina. We women tend to go to Gynecologists for female problems. They were good intentioned but didn't know what it was and they had no appropriate tools. It is unfortunate that this group does not seem to be very informed about IC. We will have to work on that.

    Comming to terms of Explanation of the mysterious symptoms: One most troubling aspect of IC for me is that I could not understand why and what was causing the symptoms and this caused anxiety for me. I needed a logical explanation in order to deal with it. I have spent hours on the internet reading studies and reports along with discussing them with my PA and PT. I think a good way to look at IC is that " a final straw broke the camel's back" Many factors have created a situation where mast cells are degranulating and releasing anti-histamines that inflame and damage the bladder lining. This causes a domino effect on the pelvic floor muscles by tightening up and creating small knots known as trigger points in those muscles. All this pain causes a rapid firing of synapses making the pain messages trigger even easier. The pain is referred and felt in many areas and with different types of "feelings". (This helps explain why people have so many different types of symptoms) It is a cycle that perpetuates itself. We have to intervene and interrupt this cycle and support the body to rebalance and heal itself.

    It still leaves some questions as to what "straws" are contributing. I believe they include stress from illness, improper nutrition or malnutrition, emotional stressful lives and how we cope with it, physical stress from exertion and/or injury. Basically anything that would use and stress our bodies energy and things that trigger the immune system. It is however for many not a matter of abusing ourselves or causing the problem. (I think this only leads to negative emotions that cause more poor health.) Rather there is a combination of events and situations that have happened and our bodies are on overload. The mainstream diet and lifestyle may work for most of the people, most of the time, but for IC folks your body is trying to tell you it is on overload. We have to have some compassion for our bodies that are not coping very well with our situations and find a way to help this body that needs some extra care in order to be healthy.

    Nutrition: After all the anti-biotics I took at the beginning, I did have some serious digestion problems. And maybe I had a malabsorption, leaky gut problem developing along with the IC leaky bladder lining. I had to re-start my digestion system by drinking whey protein, digestive enzymes and pro-biotics like acidophilus. I think this also helped my immune system because we now know that a large part of our immune system is in our guts. Good flora is vital. The Physical Therapy also helped me regain control of those tightened muscles so I could get the whole system working again. From the very beginning I believed that nutrition and digestion was the key. I believe that my gut lining was "leaking" just as my bladder lining was "leaking" and causing irritation to the bladder muscle. Vital nutrients are needed to help build those linings, but you have to have a gut that can absorb those nutrients. So getting the digestion system up and working was vital.

    Where to from here: I plan on becoming more healthy than when this whole IC thing started. I have a new healthy diet that is much different from the mainstream. I'm only putting premium fuel into this body. As a result, I have lost weight and am much happier for it. I'm not a person that really looked fat but was a "normal" American. I lost 25 pounds. (Hard truth is that most Americans are 20 to 30 pounds overweight.) And yet we may be malnourished (using the malnourished definition of missing vital nutrients.) Probably missing the vital nutrients needed to keep a healthy gut and bladder lining. As a result of my diet change, I really no longer care about chocolate (amazing for me) or any other sugar treat. I now believe that I was addicted to sugar. I'm afraid all those whole wheat "hippies" were right about whole foods and the "bad" sugar But now I don't have cravings. So really it is easy. It is funny how fear can be a great motivator. I really am afraid of those symptoms and will do anything or give up anything in order not to have them. P.S. Sweet Alternative: A good alternative sweetener is Xylitol. It is not as sweet as sugar but no aftertaste and healthy. And it does not need insulin to process in our bodies so it does not raise sugar and insulin levels. It has the added benefit of killing bacteria that cause cavities. (However, it is dangerous for dogs because they can not process it.)

    Best Advice: Listen to yourself when dealing with medical professionals. You know your body better than anyone. So listen to their advice and use their knowledge, but think and choose for yourself. Protect yourself from further injury from procedures, medications, and non action. Be prepared for some angry reactions. A suggestion is to take a spouse or friend who is able and willing to tell the medical person thanks but no thanks we are leaving now, goodbye. You can have a secret sign that tells this person you want to leave and have them step in and do that for you. Physician's first rule to follow is to "do no harm". Follow that advice for yourself. The last thing we need is handling more stressful situations and confrontations when we are seeking help. But unfortunately I encountered just that before I found the help I needed.
    Persevere, it's your life!

    I am sending the best positive energy and prayers your way!
    Last edited by ICNDonna; 06-01-2007, 12:33 PM. Reason: Removed sales site.

  • #2

    thanx that was so helpful!!!!
    one question though, I looked up Prosed/DS and the info on it said that it was very important to keep your urine acidic while on it, or else it would not be as effective. I know for me when I have acidic urine (I test my urine with ph strips daily) I am in much more pain as if I were to have alkaline urine. I really want to try it though because Pyridium does not work for me, any suggestions?
    many mahalozzzzzzzz

    Diagnosed December 2004
    Cytoscopy April 2007: 1000cc's capacity, no visible "IC", looked perfectly normal. Hydrodistention August 2007: again appearance of “normal looking” bladder. Surgery for bladder reflux in 1990, chronic bladder infections before that.

    Medications: Oxycodone, Amitriptyline, Tizanadine, Lyrica, Ambien, Prilosec, Zantac, Zyrtec, low does Aspirin, (In the past I tried all the typical natural therapies out there without successL)

    I don’t have “typical” IC symptoms,… I have a very large bladder (my Dr.’s eyes almost jumped out of his head when he saw my CT scan!) It seems to feel better the fuller it gets & the more I go to the bathroom, the more it hurts. My pain intensity doesn’t seem to be affected by diet or alcohol, that being said pain is my main issue, MAJOR PAIN!!! It sux!!


    • #3
      Thanks for your very informative post. I have to know what diet you are on. I am lost as to what to eat most of the time. Maybe you can help me or point me where I can find help with a diet that is healthy. I try to stick to the OK IC diet but it seems boring to me. Ziggy


      • #4
        GREAT GREAT POST!!!!!!

        Very well written, and very interesting


        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

        Link to Patient Handbook:

        Diet Reference Sheet:

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


        • #5
          I had not heard about the acidic urine for Presed/DS and the doctor said I really didn't have acidic urine and I have stayed away from any acidic food, etc. But the medication worked well for me. I would suggest give it a try and don't worry about that acidic info. Who knows, that info may not be true for all people?!

          Best wishes!


          • #6
            I hear you on the short list of foods to eat. In addition to no foods that may upset IC as on the IC lists, I have taken myself off of dairy because of possible sensitivity to dairy.

            I eat bonless, skinless hormone free chicken breast, salmon once a week, and lamb occasionally. All meat that is easy to digest. At first though I had "home made" chicken soup and plan on making it again. (Add chicken meat to organic chicken broth with some rice or vegatable.) I also used and still do use whey protein. My digestion system was shot and this was an easily digestable protein. I now understand why the whey helped so much, it also is a good source of glutamine. So is chicken and salmon. Of course the salmon has omega 3 as well. Typical dinner is one of the three meats, steamed vegatable, whole wheat cous couse or brown rice. All can be eaten with SmartBalance "butter" and seasoned with sea salt. I eat whole wheat bread with no sugar, corn syrup, etc. I now make my own in a bread machine. Delicious and cheaper than quality store bought bread. And my husband and I came up with an oatmeal "cookie" recipe. I needed the fiber and something "sweet". It does contain carob chips that are seetened with sugar can juice. I wish I could by carob chips sweetened with xylitol. Then there would be no sugar at all.

            Lunch might be chicken pieces on a piece of whole wheat bread with a small spread of Canola oil mayo. Maybe I will only eat half a sandwich at a time and finish the other half later. Eating more smaller meals thoughout the day. It seems very boring and bland to most but avoiding the pain and discomfort is way more important to me than the food now. I would take a food pill if they had one. Besides who says it will be forever. Just think of it as being just for now.

            Actually a good nutritious diet. Lean protein, complex carbohydrate, and vegatables for meals. This is how I think about it. It is fuel needed to feel well. Being off sugar has helped eliminate food craving. Whey protein is a good in between meal filler with not a lot of calories. My body seems to need protien to feel well. The oatmeal cookies are also a quick snack and provide needed fiber.

            Hope this helps.


            • #7
              This was such a great post! There are so many things that you listed that I have found to be so true. I am not as good as you with the diet, but I think that you are probably correct. Is xylitol a natural sugar or an artificial sweetener? I am not familar with it. Please post your cookie recipe on the boards or in the cookbook.




              • #8
                Here is tonight's dinner: Roasted (400 degree oven) chicken breasts in olive oil and sea salt (if the chicken breast is large I will have a half), roasted whole baby carrots in extra virgin olive oil and sea salt (in seperate glass baking dish from chicken), and whole wheat cous cous made with 1 1/2 cup organic chicken broth and 1 cup cous cous (leftovers cous cous for tomorrow nights dinner). I will have three chicken breasts left over for lunch, sandwich, or soup.

                Yummy! And a warm cookie later for dessert.


                • #9
                  I am so glad you posted this information. It is so important to get help as soon as possible to get better result. Unfortunately I did not know this at the time I needed it, but I thank God that there are post like these that will get the word out to get help ASAP, that it may help others to be able to get better results. You did a wonderful job in writing this in words that I did not know how to write.
                  But I believe now someone will read this and realize at the beginning of IC don't wait to get the help, it is time now to get treated for it.

                  Take care, Trishann


                  • #10
                    Thanks for your post. The only reason I relived my unpleasant history of the IC experience was the intention of helping some one. I'm glad to hear that you think it gets out a helpful message. This IC site cetainly helped point me in the right direction. I found very helpful information in the success story section. As we all know, we wouldn't wish IC on anyone. We can only feel empathy.


                    • #11
                      Thank you so much for your story. It's so informative.


                      • #12
                        Thanks so much for that post. It was very informative.

                        How do the lidocaine patches work? Do you place them right over the bladder or just anywhere on your skin like pain patches?


                        • #13
                          Loved the post

                          Really loved your post and in particular a couple of points you made that I too, think are important; If your doctor isnt getting it--find another one and drive to find one if you have too. Pelvic floor dysfunction plays a major part in IC symptoms, and the bladder is just a resivour for the chemical stew that makes up most American diets. After time, the body rebels. Lots of good common sense.
                          Last, can I come to dinnner?


                          Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                          Diagnosis: IC, PFD (both in remission)


                          • #14
                            Good post, but I wanted to make one comment. Most people with IC get no bladder relief from the Lidoderm patches. They simply don't reach deep enough to get into the internal organs. However, they DO help with that referred bladder pain in the back. I'm sure some people could possibly get a little help from these patches, but it's the exception, not the rule.

                            I've read that they're GREAT for VV...cut them into strips, and place them like a panty shield over the irritated area.

                            Hope this helps.
                            *IC-- Summer 2004; PFD--October 2005
                            *Fibro--Fall 2000; CFS-- Fall 2000
                            *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                            Total Abdominal Hysterectomy--adenomyosis--9\08

                            04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


                            • #15
                              Absolutely fabulous post! Yes please contribute to the cookbook! Please PM me for my private email address. That would be lovely!

                              Someone mentioned acidic urine? Unfortunately meat is highly acidic. It's one of the most acidic foods out there with red meat being about the most acidic. So I can't remember how it factored into the IC diet, but logically, it should be a big no no in the diet if we are going strictly by PH value only.

                              I know many things in her post made an impression on me. I have survived two highly abusive marriages and I am almost positive this is the cause of my IC. My Uro initially asked me if I was abused and I guess now I know why. Sexually when I was a child, and the two marriages, the second being so highly traumatic many different times, abuse early on through the pregnancy, early in my daughter's life, the motorcycle accident, the second time my husband tried to murder me, the molestation of my daughter, our eviction from our home twice in one year, finding out my husband was brain damaged and having him "healed" of that and having to learn to forgive all that and deal with him again.....

                              My body and my bladder just "gave up". I don't blame it a bit. And I know I'm malnourished as well. So all of that post applies to me, and I can take so much with me to help to heal, even though I'm having so much success, I still flare, and have bad days, so if I could have a complete remission that would truly be a miracle.

                              Thanks again so much!