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  • Newlyweds...my wife is now officially diagnosed.

    Hello everyone...I hope you are all feeling good today! Well, I posted our story a few weeks back and finally yesterday my wife had her appt with Dr. Hanno. We brought everything that we had gathered on IC...including her voiding diary, symptom history/timeline, and lists of medicines and procedures that she has gone thru...they copied all of this stuff and put it in her file. All of your tips and stories on what to bring were very helpful...thank you! My wife had to fill out an IC type questionaire (which she scored highly on) and than he asked her a bunch of questions about her symptoms etc. He reviewed everything we brought and was able to pull up most of her surgical history on the computer since we started having everything done at his hospital (HUP). Next, he gave her a brief physical examination and than said that he would review everything and be right back...well...when he came back he officially diagnosed my wife with IC. He basically said that thru her symptoms, his exam, and exclusion due to her many, many procedures and dr's appts that she had IC. He didn't feel that it was necessary to put her through the cysto/hydro or the PST test. When he examined her and he touched her bladder...I thought she might faint...it hurt her really badly...which he promptly apologized for...her face was so red I couldn't believe it.

    He than asked her if she had been treated for this with any medications and she said no...she had been prescribed a couple of things by the OB/GYN at Penn but wasn't real comfortable with taking them without more info and a diagnosis...one was pyridium and she wears contacts and doesn't have glasses so she was worried about ruining her contacts...the other was elavil and the OB/GYN kind of made it seem like it was in her head so that made her uncomfortable about that one. She also gets some pain medication from our PCP but not really enough to help everyday...her main symptoms are pain and spasming. So he said that she was a perfect candidate for a new NIH research study since she is what they call a "naive" IC patient meaning that she hasn't been treated with any of the medicines for IC. The research dr than came in and explained the study to us...it is a study that compares treatment with elavil and training with just training. I think by training she meant breathing exercises, bladder training, etc...anyway, my wife has decided to participate and she will need to report once a week, keep a medicine and voiding diary, and do a couple other things. She gets free medicine, I believe, and a small stipend periodically...the whole study will last 12 weeks and she starts in a week. I think they start you out at 10mg and gradually increase it to no higher than 50mg and you are supposed to record all of your symptoms and how they change with the different doses and what works best for you. She also gave us her card and cell# to reach her whenever we needed. The dr explained how the elavil is used to treat IC and talked to her about the side effects and I think that made her much more comfortable with giving the elavil a try...hopefully it helps her...I know it has helped alot of you.

    He talked to her about elmiron but he said that they generally don't use it very often at this practice because of the expense, side effects, and the 30%success rate...but he did say that if she wanted it he would have no problem prescribing it for her. She tends to be pretty sensitive when it comes to medicine and side effects...she almost always gets them...especially antibiotics. She asked the research dr what she should do about pain in the meantime and she said to continue what you are doing now...what...struggling in pain basically everyday since her pain meds have run out. So hopefully our PCP will refill her prescription when she goes to see him FYI - they also mentioned another study where they basically take a urine sample and than store it to be compared with others...what this study is looking for is biomarkers in the urine that may be IC specific in the hopes of finding something that may allow them to identify IC in people when they are infants...so she said she would give them a sample...strangely the dr said, "You will be unable to get your samples back." Huh, we were like who wants their pee back?!? She said that she has to say that because apparently they have had people ask for it back...gross.

    Anyway, sorry this is so long. I just wanted to let everyone know how things turned out. It is now official that my wife has IC. Now we can focus completely on beating this painful condition. Hopefully, in the weeks to come she will log on to this site and talk with you guys herself...when she is ready. Thanks again for all of your support...it is greatly appreciated!!! I did mention the website to Dr. Hanno when he asked us if we have been doing any research and I told him how helpful it has been...thanks!

    Joe

  • #2
    Wow - that is great that she is participating in the study. It is people like her who will help us all someday! I sure hope the elavil works for her and she starts feeling better really soon. Sorry they didn't give her any pain meds, but I know Elavil helps a lot of people for pain so maybe it will help her too.
    As one of the 30 percent who was helped a lot with elmiron and who has had few side effects from it I was surprised that they didn't give elmiron a try but of course they can't do that if she is in the study for Elavil.
    Good luck and keep us posted.
    hugs,
    Janie

    Comment


    • #3
      Joe,
      Sounds like you have a great dr!!! I'm very jealous, lol free meds?? wow that sounds like a deal to me. SOLD. haha your wife is very lucky to have such a supportive husband like yourself. She needs all the support she can get. Thanks for the update and good luck.

      Rach
      ***Rachel***

      Dance like no one is watching
      Love like you've never been hurt
      Live today like it's your last

      Dxd with IC in June '06

      Comment


      • #4
        Well I am so happy yall have an Dg.. But am sorry it is IC..Now though maybe she can get on the right meds to start making her feel better.. I hope both of you the best! And she is very lucky to have a good supporting husband..If you have any more questions, Just ask
        Hugs
        Ronda

        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:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        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.

        Comment


        • #5
          I'm really sorry your wife was officially diagnosed -- but I am glad she's got a great doc and is beginning treatment. I really hope the Elavil helps her!
          ****
          Jen

          *Diagnosed with severe IC in 2004
          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

          **I am not a medical authority nor do I offer definitive medical advice. 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.

          Comment


          • #6
            I bet now at the very least you both are relieved to have a concrete diagnosis. It is awesome that your wife is taking part in a study, and for that I'm sure we all can't thank her enough. Keep us updated on your situation - and it can't be said enough how awesome you are for being this supportive. Kudos, Joe!

            Comment


            • #7
              I am so sorry that she was diagnosed with IC. It is never good news to hear someone else has it. I am glad that she has such a good doctor and I also hope that the Elavil works for her.
              Sharon

              Shopping??? Did someone mention shopping? I'll get my hat... ;-)

              Where I can be found most days.



              Link to the ICN Patient Handbook:
              http://www.ic-network.com/handbook/

              Link to the IC Diet:
              http://www.ic-network.com/diet/


              IC 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.

              Comment


              • #8
                Joe!
                I am so glad to see that there are supportive husbands out there.I am lucky to have one as well and I know I will be able to make it through this because of him....and your wife will too...because of YOU!
                Take care....
                Lori

                Comment


                • #9
                  I too am glad to hear it sounds like she has a wonderful doctor! I sure do hope the Elavil trial works well for her!! I too am one, like JanieMiranda, that was greatly helped by Elmiron and I too am one who if there's a side-effect to a med, I'll get it, hee hee. But I did pretty well with it and am glad I tried it. But like Janie said, she can't really give it a go now, since she's in the study - and here's to her finding relief!!! Keep up the good work!!!
                  Hugs,
                  Tracey
                  How do you eat an elephant? One bite at a time...

                  Harry arrived 2/23/09!



                  *IC 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.

                  IC Diet Cheat Sheet:
                  http://www.ic-network.com/diet/2009icdietlist.pdf



                  Dx's:
                  IC dx'd Nov 2004
                  Lymphocytic Colitis dx'd July 2005
                  Possible IBS
                  Current IC Meds
                  Vistaril 25mg in the evening
                  Previous IC Meds taken:
                  Cystoprotek - 2 caps 2x's a day
                  Elmiron, 100mg 3x's a day
                  Ditropan, 5 mg 3x's a day
                  Others:
                  Wellbutrin 150mg 2x's a day for Anxiety/IBS
                  Pepcid 40mg a day for GERD
                  Zytrec for Nasal Allergies
                  Align Probiotic daily for IBS

                  Comment


                  • #10
                    Like everyone else, I'm sorry your wife has IC, but pleased to hear that she has found a good doctor. It sounds like you and your wife are lucky to have each other -- a good support system as home is SO important for anyone with a chronic illness.

                    If her PCP prescribes pain meds, it might mask the effects, or lack thereof, of the elavil. You should probably check back with the research doctor about whether this is okay before she does it. I know, the pain can be unbearable in the meanwhile, but she did agree to be in this trial (for which we are all grateful -- the more that is learned about IC, the better off we all are!). Self-help for pain can include heat or ice (whichever she responds to better), diet, diet, diet (I'm sure you've looked at the Patient Handbook by now), rest, hot baths, and relaxation techniques. I don't know, maybe it's fine for her to have pain meds, but I just think you should check with this research doctor first.

                    I wish all the best for both of you, and hope that your wife will feel ready to join our community soon.
                    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                    Wishing you happiness and good health, and all the best out of life.

                    Peace, Carolyn
                    ___________________________________________________

                    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                    On the Beach with IC

                    Comment


                    • #11
                      I'm so happy that your wife is getting the treatment she deserves. Sounds like a very interetsing research study as well...wish I lived closer!

                      She's very lucky to have such a great doctor and great husband by her side. Keep us updated on how she's doing in the study!

                      Sandy
                      *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.

                      Comment


                      • #12
                        I wondered, too, about her taking the pain meds in terms of the Elavil study. Is she just taking them until the study starts?

                        How very fortunate she is to have found a doctor you both feel so good about. That alone can help so much in coping with this disease. I swear half of my suffering with Ic was relieved by feeling like I could absolutely trust my uro and feel safe with him. He listened to me and believed in me. It sounds like your wife has found someone like that, too.
                        Kim

                        Diagnosed August 2001

                        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                        *****************************

                        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                        Comment


                        • #13
                          Thank you all so much for your responses! I thought the same thing myself about her taking pain meds while on the study...unfortunately I didn't really think of it until we had left already. However, the doc leading the study gave us her cell# and card so we can always ask her before the study starts...but it actually, legally can't start until at least one week after she signs the form...which she did yesterday...so as soon as the research doc sends them out than the one week starts. In the meantime, I am really worried about her for the next 1-2 weeks waiting for the study to start and than waiting for the treatment to begin working...once the study begins we are really hoping that the elavil will help with the pain and she won't necessarily need the pain meds...although I do believe there is a small chance that she could get a placebo...we have to clarify that with the research doc. Just so everyone knows how helpful they are...when we finally got the diagnosis and they began explaining what it actually is, etc...the doc began explaining as if we had no idea but we let her know what we already knew and had an intuitive discussion with her about it...this website is such a wealth of great info...you could tell that most of the patients they get haven't even heard of IC before...so I spread the word as much as I could about the site. We actually went to the Sixers game last Sat. and we brought the Survival Guide with us to help explain that my wife needed seats, if possible, that required less steps and were a little closer to a bathroom...to our surprise, a woman came from behind the Courtesy Desk and asked me where I had gotten that book...it turns out that her mother has IC and they hardly knew anything at all about it...so I told them I got the book online and to go to the ICN for great information and support...she thanked us and they moved us to seats right near the handicapped/disabled seating where there were less steps to get there (she gets fatigued pretty easily) and easier access to the bathroom...it's a small world and it was nice to have someone who had actually heard of it there so we didn't have to try and convince them that it is real. Thanks again...I will definitely let you know how the study is going!

                          Comment


                          • #14
                            Like everyone else, so sorry that your wife has IC, but real happy that she now has a dx! Happy also that she has a husband that she can lean on, which is important. (I'm lucky in that way, too as my husband has been my sole support for over 20 years). I've been taking Elmiron since 1997, never had any side effects, been doing pretty good on it. Glad she is in the study, hopefully, it will help us all in the future.

                            Comment


                            • #15
                              I'm curious - will your wife know whether she is receiving the Elavil or not? Just wondered if it is a blind or double blind type of study or if the participants will know if they are the ones receiving the Elavil or are the ones who are not.
                              Kim

                              Diagnosed August 2001

                              Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                              Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                              I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                              *****************************

                              “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                              “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                              Comment

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