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  • Husband Needing Advice!

    Hello My name is Adam,
    My wife is 21 and has IC. We have had many complications and have tried many things with no sucess. I don't really understand exactly what IC is or does, or how to deal with it. I wish to help my wife and understand more so I can help. Most doctors have give up on us or wanting us to try things we've already tried that didn't work. My wife is losing her job and our marriage is struggling. I wish to be a help so any and all advice would be much appreciated.
    Please Help.

  • #2
    Re: Husband Needing Advice!

    to the IC Network. You've already taken a helpful step in wanting to learn more about interstitial cystitis. First of all, I'm certain you already know that it can be extremely painful at times and that it can make sex very difficult. If you can get past that, you've already taken a huge step. She needs to know that you love her in spite of the IC. It can help to let her be the guide in intimate situations. I think the thing my husband has done throughout our 39 years with IC that has helped most is that he will just hold me when I'm miserable and I know he loves me.

    If your marriage is in trouble, I encourage you to seek out a professional counselor for both of you. Adversity can either make or break a marriage. I sincerely hope yours will be one of the "makes."

    Sending encouragement,
    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


    • #3
      Re: Husband Needing Advice!

      Hi Adam, what a wonderful husband to take the time to try and find some answers! In April my husband and I will be married 36 years. I was fortunate that he has stuck by me through all we have been through with this disease. I have had it all my life and trust me things have not always been easy. I agree with Donna about seeking some marriage counseling. My best advice would be to let her know that you love her, not just by saying it, but by doing things that make her feel loved. My IC got so bad that I had to have ultimate in treatments that very few face. I had surgery when I was 30 and my bladder was removed. I know that my husband truly loves me because he stood by me through everything. All marriages go through hard times, you will have ups and downs in every marriage. You need to focus on the original love that brought you both together, reclaim it and move forward.

      Comment


      • #4
        Re: Husband Needing Advice!

        Have you tried out all good advices given in this page? Take a time and read, for instance all success stories, to see some good points. Some my advices, based on what I have read here... Find out, if she has gluten or lactose intolerance, any other food allergy. Maybe she can try, after of course starting with IC diet, also some yeast-cleaning diet (no sweets and so on, I did not read much about yet, but I plan to.) If she has very miserable day, has she tried to stir half teaspoon soda in a glass of water? It is temporary solution, but can give once in a while a good night sleep.
        If she is not taking any medication or doing instills yet, maybe it is time to find out those opportunities? Just read a forum, definitely some stories are helping you both!

        Comment


        • #5
          Re: Husband Needing Advice!

          I think the fact that you are here shows a huge amount of support and she is a lucky girl. is she a member of the discussion forum too? I'm sorry you guys are going through all of this, and I'm sorry she's been diagnosed. the first part is the hardest, but it does get better. I've had IC for a year and I can't believe how much different my life is now than it was when I first was diagnosed. now that my medication has kicked in, I am so much improved over before. so it will get better.

          I would suggest the diet first and foremost. My husband and I both printed it out and we downloaded the ICN app (it is searchable too) for our phones and iPad. we've experimented with foods too, and he is very patient with me. another thing is water...get on a high PH water (the high ones usually put their ph on the bottle...you want above a 7) some people do ok with tap, but stay away from dasani and aquafina. those are killers.

          a heating pad helps me a lot too...I rest. wear comfy clothes (no tight things) and usually I come home and just put on jammies and rest a bit. hubby and I cook together, and that helps. we went through marriage counseling a few years ago and that helped us a lot. you guys might want to try it if you aren't already there. I still stay in therapy myself and that helps with me dealing with IC and stress. stress can really get us ICers sometimes, and I flare with high stress things.

          once you guys find a doctor that she likes and feels comfortable with, that will help tons too. she will be able to get the medications she needs and the instills are a huge help too. I do mine 3x/week.

          you've come to the right place. this forum is full of love and support and super nice people.
          HUGS to you both!
          ----------------------------------------------------
          My blog on IC, adoption, and academia: the garlic whisperer

          Diagnosed Jan 2013. Currently taking:

          200mg Elmiron morning and night
          25mg Elavil at night (no drowsiness or weight gain)
          culturelle in the morning
          SLIT drops for allergies (environmental) 3 drops/night under the tongue
          zyrtec 24 hour nightly (recommended by uro)
          Instillations 3x/week: Parson's Solution
          uribel and prelief as needed

          Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
          No longer need them, so I only take them during flares.

          Comment


          • #6
            Re: Husband Needing Advice!

            I don't think that everyone understood my question. We have tried all the Doctors treatments, diets, and medications. She is not new to IC at all. I am not looking for help on treatments. We are doing a therapy program also for our marriage. My question is : What is IC like? How does it make her feel? How can I make her feel better when she is curled up in a ball crying? How can I understand this disease and know what she is up against? She says she feels like less of a woman, inadequate and that it is part of the disease. That IC emotionally wears on you. I don't understand and this is where I need advice.

            Comment


            • #7
              Re: Husband Needing Advice!

              Ok. I see your question now more clearly. It makes you feel you want to die. Every day. IC makes you sad, depressed and miserable. I feel sad and yes, I do not feel much like a woman, because sex is not painful for me, yet, but every time I suffer because I feel constantly I need to pee and definitely do not enjoy it as much as we used to with my husband. I feel unhappy because I make his life miserable as well, all last 3 years, during it has gone worse and worse. I do not have pain yet, but awful burning, urgency, frequency and just last 2 months spasms in vaginal area. It feels bad. Last time I was reading one womens magazine, I was looking all the beauty and fashion pages and told to myself, it is not for me. I just can not think about something like that when I feel so bad and I almost donĀ“t want to get out of house! Some days I still go, but I am scared to take a tram because I do not know, can I handle those 30 min to town. When your main concern is, where is nearest toilet, you do not care of how you look like, it is just not important any more. You loose your friends, or in my case, in new town I really do not bother look new ones because I do not believe I am very free to choose the days when I am able to go out. I can not work and I sleep often until 12, because I am not able to sleep earlier because of burning and discomfort, my husband sleeps now in other room, because otherwise as well he can not sleep normally. He says it does not bother him if I wake up many times at night, but I believe it would be bad. I have no idea how there can be such illness and totally uncureable, while so many people are suffering out here... But in my case, my husband is peaceful and nice to me, though sometimes angry when I cry too much, because he says there is no need to cry so much. I do not have that pain yet though, which your wife has, so maybe somebody else can explain it better... It is just so hard when your life is taken away from you, you can not travel, go to theatre, which I used to love... I go to cinema though, just sit at the corner to be able to go out any time... Oh, I hope someone else can answer you from different aspects more.

              Comment


              • #8
                Re: Husband Needing Advice!

                Originally posted by Adam JAC View Post
                I don't think that everyone understood my question. We have tried all the Doctors treatments, diets, and medications. She is not new to IC at all. I am not looking for help on treatments. We are doing a therapy program also for our marriage. My question is : What is IC like? How does it make her feel? How can I make her feel better when she is curled up in a ball crying? How can I understand this disease and know what she is up against? She says she feels like less of a woman, inadequate and that it is part of the disease. That IC emotionally wears on you. I don't understand and this is where I need advice.
                When I'm crying, my husband just holds me --- that helps more than anything. We had been married almost three years when I developed IC 39 years ago. The best advice I can think of is to be sure she knows you love her and that even though you know you can't completely understand IC, you will do your best to be there for her when she needs help and support. Do you go to doctor appointments with her? That can help too. And if she's having a bad day, offer to either cook dinner or (if you're hopeless in the kitchen) help her. There are some household tasks that can be difficult for an ICer --- such as running the vacuum cleaner, mopping the kitchen and bathroom, making a bed --- anything that puts strain on the abdominal muscles.

                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


                • #9
                  Re: Husband Needing Advice!

                  IC makes you feel like you are in pain or at the very least uncomfortable almost everyday of your life. You could experience a very uncomfortable burning sensation when you sit down, that makes you feel like you have to urinate when you really don't. Sometimes urinating relieves the burning and sometimes it doesnt. You will have lower Back pain that extends to your thighs. You feel like you have a very bruised bladder, that is sensitive to the slightest touch. You have a lot of anxiety about every morsel of new food that you try. Hoping to god that it wont make you sicker. You feel like your sexual relationship with your husband is another obstacle in the journey to a pain free day. I watched a YouTube video, where a man who has ic said that he felt he had an ocean of years ahead of him and he is so scared how he will get a job, keep a job, get married, father children etc. Instead of looking forward to living his life, he was extremely terrified that ic will prevent him from having a normal life.

                  When I first started the ic diet, my husband refused to eat dinner with me. He would say he's not hungry or he would come home late from work. I ate every meal alone for the first 5 months. I finally told him that if he refused the eat with me, that I had no reason to bother eating at all. I lost 20 pounds rather quickly, and it scared him and me. Now he goes grocery shopping, cooks, cleans and does just about anything I tell him to. You see, with this disease, it's really easy to feel like giving up. It's so easy to feel overwhelmed and completely alone. We desparately need someone to hug us and help us just get through the day. We need someone to let us cry and express our pain freely without judgement. We need support every time we fail with one doctor, drug, physical therapy, supplement and need the courage to try something new. Go to her doctor appointments with her, eat with her, hug her at least twice a day, and tell her that you will be by her side always.

                  Comment


                  • #10
                    Re: Husband Needing Advice!

                    IC is horrible. I hate it. It is debilitating and mean and just sadistic. When I hurt, I feel burning when I urinate. clinch your fist really tight and let it go and do that about 50 times really fast and that's what spasms feel like but then add someone trying to shove glass up your urethra and that is what a flare feels like. Other times it feels like a dull ache. But it is always there. ALWAYS. It is humiliating too...to have to ask all of these questions about diet, to carry special water everywhere, to give yourself a treatment (although that makes me feel empowered now).

                    Sometimes, I just don't want to get out of bed. I get depressed that my life is like this now. I feel as if my entire culture has been taken away from me with this diet. I don't want to have IC and I want to be able to drink a flippin espresso when I want, but nooooooo. That would put me on the floor in the fetal position. I WANT A BEER!!!! But no alcohol...that's always fun when going out with friends.

                    It makes me afraid to go out to eat or to friends' houses. I feel like a freak when I go to friends' places with my own water and have to ask a ton of questions about the food. I hate going out to eat with friends and having to have the "I can't eat there" conversation.

                    I worry that my husband is going to want to dump me because sex is absolutely frightening. Not only am I petrified that I will get an infection, but it is painful and I don't want to have a flare. I'm scared that this will hurt our marriage.

                    That said, my husband is amazing. He has been so supportive through all of this and I talk to him about when I'm scared and how I feel. He listens, and tells me that he loves me and reassures me that he is there for me. That helps a lot. Even if I need to hear it ten times, he tells me. When I cry, I cry and he just holds me and tells me that he loves me. When I want to complain, he listens and he is my biggest advocate! He eats the diet along with me, and is always looking at menus online. When we travel, he has even planned out food and restaurants, and he has had snacks and high PH water shipped to our hotel. He even downloaded the ICN app for the diet and he is always looking up things on it.

                    The fact that I know that he is there, is very reassuring. I don't really have anything else to add that hasn't already been said.
                    ----------------------------------------------------
                    My blog on IC, adoption, and academia: the garlic whisperer

                    Diagnosed Jan 2013. Currently taking:

                    200mg Elmiron morning and night
                    25mg Elavil at night (no drowsiness or weight gain)
                    culturelle in the morning
                    SLIT drops for allergies (environmental) 3 drops/night under the tongue
                    zyrtec 24 hour nightly (recommended by uro)
                    Instillations 3x/week: Parson's Solution
                    uribel and prelief as needed

                    Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
                    No longer need them, so I only take them during flares.

                    Comment

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