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Newlyweds...my wife appears to have IC...wanted to say Hello!

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  • Newlyweds...my wife appears to have IC...wanted to say Hello!

    Hello everyone,

    I have been lurking for a little while trying to find out as much as I can...this is my first post. Here goes...my name is Joe and I married the love of my life on Oct. 7, 2006. Wait, first I just want to say thank you to all of you on this site...it has been very helpful and you all do a great job! Since last July and maybe sooner my wife has been experiencing what now appear to be IC symptoms. It started out as what seemed to be pretty bad abdominal pain (i.e. - stabbing and spasms). She was taken to the ER (er docs!?!?!) back in July for what we think was an allergic reaction to strong antibiotics. Since then we have been to doctor after doctor and hospital after hospital. I must admit that this process has been terribly frustrating with the insinuations that it's all in your head when I know that my wife is in horrible REAL pain...I can not lie, it was putting a bit of a strain on our relationship. Finally, we decided to go to the Univ. of Pennsylvania Hospital to try to get some answers, something. She started out in Gastro (endoscopy - normal, ultra's/x-rays/cats - normal, colonoscopy - couldn't handle the prep, & sigmoidoscopy - normal), next it was on to OB/GYN (Laparascopy - normal, no infections, etc.), until finally at her last ER visit the triage nurse said, "I'm not a doctor but this really, really sounds like IC, you should see urology". Now, of course we had heard before that it really sounds like (insert condition here) but when I began to research IC and speak to her about it, she was convinced that her condition was bladder related (some urgency, frequency, & burning along with the stabbing and terrible spasms). I don't want to get to far ahead but this really seems like it could be it. Even though she has not been officially diagnosed, can I just tell you the relief after hearing about IC and reading your comments describing symptoms exactly as she does...just to have a name for it and know she's not the only one you know? Since then I have done as much research on the subject as possible, printing out everything and starting a folder for her, ordering the survival guide, helping as much as I can...just trying to be as supportive as possible. I probably could have been more supportive from the beginning (upset, not knowing, worrying) but I am learning and we are learning together. She already knew whatever it was was food and stress related (flares) and she has begun diet changes and void/symptom diary. I don't think she is ready to be on this site yet (upset, not official) but I want to be able to do all that I can if she is diagnosed...that is why I am here and writing this. Luckily, my wife has an appointment in April at Penn with Dr. Hanno...so we know that if this is it than we will have a sympathetic dr and a good one at that. Thanks again for all the support...we are beginning to see that there may in fact be a light at the end of the tunnel and I am trying to be the most supportive husband that I can be and I apologize to her for not being as supportive as I could be from the start. Thanks, Joe...will let you know how dr appt turns out...good luck to everyone!

  • #2
    Joe,
    You sound like a wonderful, kind and supportive hubby. Glad you found your way to this site and I hope your wife gets a diagnosis soon and some treatment that will help her condition . . . no matter what it turns out to be. Good luck to you both.
    hugs,
    Janie

    Comment


    • #3
      Joe Welcome.

      I want to applaud you for being there for your wife..
      This is a great site and you will find alot of helpful information on here..
      I am going to give you a link below to the patient handbook, there is alot of things in there that you might find helpful..And if you need anything or confused about something just ask

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


      • #4
        Hello Joe and . I am so happy that your wife has such a supportive husband. Good for you. Support is very important. Don't put yourself down for being upset and for worrying about her when this began. I am glad that you felt that way. That means that she is important to you. What matters now is that you are here trying to get as much information as you can.

        Please tell your wife that I am very sorry that she has been through the doctor whril. Many of us here have. Also tell her that we are here to help answer her questions and to lend as much support as we can.

        We are also here to give you support. Being the spouce of a person with IC is hard, also. My husband says that he felt so helpless when I began symptoms. He says that it was hard to watch me be in so much pain and know that there was nothing he could do for me.

        I do want to tell both you and your wife that, if indeed IC is what is causing her symptoms, it is not the end. There are so many treatments/meds available to us. It may take time to discover which ones are the right ones for her, but it is possible that, with them, she will be able to live a pretty normal life despite having IC. Another thing to remember is that research is ongoing. People are working to find out the cause and, when that is discovered, possibly are cure or at least a common med/treatment that will help us all.

        Last edited by SharonA; 03-19-2007, 10:54 AM.
        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


        • #5
          It's good to see a supportive husband. The best advice I can give you is to have lots of patience. IC is not an easy diagnosis to accept and it may take some time for her to deal with it. You need to know that she will have to make decisions about treatments --- and it's your job to support those decisions, even if you don't agree.

          Sending warm hugs,
          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


          • #6
            SharonA,

            Thank you so much for your kind words. I know exactly how your husband felt...I felt the same way and the helplessness would sometimes lead to anger. While the anger was not meant to be directed towards my wife but towards the illness, I know now that it was hurtful and may have been contributing to symptoms...so I am indeed trying to control my feelings about this terrible disease...no argument is worth making my wife feel that way both emotionally and physically (flares) and for that I am truly sorry. I do not have any symptoms or anything like that myself so I can't possible know how she feels...thanks again, this site really helps to dispell the feeling of isolation.

            Comment


            • #7


              Joe, it's great to have you here. I'm so sorry to hear that an IC diagnosis may be in your future... but you are doing all the right things. Gathering information, helping your wife find a great doc like Dr. Hanno, and just being supportive to your wife are the perfect things to be doing!!

              I was diagnosed about 6-8 months after marrying my husband, so I know it's tough to have to deal with a chronic illness during a time when you are supposed to be having the time of your lives... enjoying each other, having fun, going out, exploring life. I know it has been hard on my own relationship too at times. Unfortunately, the stress tends to get to both of us and, well, I guess we aren't always the nicest to each other sometimes... but we get through it eventually. I think if you guys can find your communication style and learn to communicate effectively about this issue, it will help a lot.

              Also, when your wife is ready, please encourage her to come here. We have more than enough love and support for the two of you
              ****
              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


              • #8
                HI Joe! Welcome and nice to hear that you are SO supportive of your new wife. I know it's difficult for the spouse of an IC'er (if that's what your wife has). I too have a great husband (of 3 yrs) who's very supportive of me. Your wife is very lucky to have you and I wish you both the best with the diagnosis, whatever it is. Roxie

                Double Spinal Cord Stimulator surgery 8/09
                Unsuccessful MiniArc sling surgery 12/07
                Dx'd Hypothyroid
                Dx'd Chronic Axonal Neuropathy & Myopathy
                June 2007
                Dx'd IC May 2006 (after suffering for 25+ yrs!)
                First Cysto 1979
                First Hydro 1981 (Many treatments since then!)
                Collagin"Durasphere" injections for urethra
                Gall bladder surgery Aug. 2004
                Gastric Bypass Dec. 2004
                Dx'd: Barrett's Esphogus July 2004
                Dx'd: Vaginal Atrophy 2005
                Bladder surgery 2000
                Dx'd: IBS 2000
                Hysterectomy (fibroids) 1999
                Laminectomy 1989
                Dx'd: Degerative Disk Disorder 1989

                For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                Comment


                • #9
                  Hi, Joe, welcome! It's wonderful that you are so supportive and concerned about your wife, and that you believe she really is in pain, despite what the doctors say.

                  You will find that it will be very difficult for her to find doctors to treat the pain and to take IC seriously. You might have to go to many doctors before finding one that seems to exhibit some human compassion.

                  It also may take time for her to find the right combinations of medicines to help her symptoms, but the vast majority of IC'ers feel good the vast majority of the time, once they've found what meds work best for them.

                  Please help her to get a referral to a urologist or a urogyn (I like the urogyns, they seem more knowledgeable and caring to me) so she can be diagnosed and started on a course of treatment that hopefully will soon have her back to her old self.

                  Blessings,
                  Lori

                  Comment


                  • #10
                    Just wanted to add my welcome as well.It's nice to see such a supportive husband here.

                    Hugs Sandra
                    "Never Give Up."

                    To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                    My Photobucket Link:
                    http://s237.photobucket.com/albums/f...ramack_photos/

                    Comment


                    • #11
                      Hi Joe! Welcome to the ICN! I'm glad you found us. Your wife is lucky to have you. Thanks for sharing your story and being so honest with us. It sounds like you had some difficulty in the beginning yet you have been really supportive and trying to be as helpful as possible which is really nice. It's great that you can acknowledge all of that.

                      I hope that your wife starts to get answers soon and relief from her symptoms. Keep us posted on your wife's progress and you can also let us know how you are doing with everything. It's a lot to take in. There are a lot of great people here who can offer their support.

                      Take care,
                      Jennifer
                      I speak of my personal experience only to provide support to others who have IC. I am not offering professional advice in any way. All patients are different and may respond differently to various remedies and medical treatments. These posts are based on my personal experience and are not meant to be viewed as medical advice nor do they replace the proper evaluation and treatment by a medical professional or healthcare provider. Please seek out treatment and medical advice from your doctor and medical team.

                      Comment


                      • #12
                        Just wanted to you to the board and to tell you what a great guy/hubby you are for being so concerned for your wife. Wish you would come on more and educate a lot more husbands/sig. others!!! Your wife is a lucky lady to have you by her side. When she's ready, tell her to come on and join us. This is a great bunch of people!

                        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


                        • #13
                          Hi Joe,
                          I'm so sorry for your wife and you also. My IC symptoms started shortly after I got married 2 years ago and I was diagnosed 7 months later. I didn't know what was wrong with me and it was a very difficult time. I hope that your wife can soon get some answers to why she has been experiencing such pain. I really applaud your efforts to help her. You seen like a very understanding husband.
                          Annie

                          Comment


                          • #14
                            Thanks again to everyone for all of the support. Since, the triage nurse mentioned IC, I have been on this site everyday and while sometimes it can be upsetting I find that in the end it always makes me feel better. Also, as I get more comfortable and familiar with the site I will be posting more and in other areas (Spouses/relationships for one) and when my wife is ready I will take her around the site and encourage her to talk to all you kind, supportive people. I think that she will love the site. It is wonderful to be welcomed with such open arms...thank you so much.

                            Comment


                            • #15
                              Joe, I am so glad you found this site. As having IC and sometimes difficult to deal with it, I realize my husband is going through a hard time too. He just wants to be able to fix me and make everything better. I applause you that you are trying to find answers for her. My husband did the same thing and I love him for it. But sometimes you won't be able to fix it but just understand she is not feeling well at times makes all the difference. Hope you find out what is going on and that she can get some relief.

                              Sending blessings, Trishann

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