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diagnosed this morning and need advice(and sympathy)

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  • earthlady
    replied
    How we accept this condition is still pretty elusive to me even though I have been in remission for a good while now. The questions still never end as to why I have it, or what really brought it on in the first place. I find the link between bowel problems and PBS pretty interesting as I have just now developed a bowel disorder that is possibly microscopic colitis. My bladder problems have gone away but a bowel problem has now started. I wonder if anyone has found a link between the two?

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  • tpronti
    replied
    My question is, How do you just accept that you have this? I feel like my whole life has done a 360. I was in remission for 12 years. 12 years ago I was never told that there was not a cure. I had a hydro and felt good. I had things over the years but never related them back to IC. This July my IC returned and I am having a VERY difficult time dealing with this. Also, over the 12 years I developed IBS. I had no idea that this is the other side of IC. I take rapaflo, Elmiron, Thryroid pills for low thryroid, Zoloft, and Klonopin. I think the Zoloft is effecting my IBS too! I feel like I can't catch a break. I have been doing the diet and go for instills that are helping. I started counseling but I feel somehow that guilty for this. That why did this happen? What did I do ? I must have done something wrong? Just very sad and I started trying the foods on the try list but slowly. This is one of the hardest things I ever had to do. Everyone tells me I am not dying! I feel that a piece of me did die because who I was has to change!

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  • Jinny Jean
    replied
    Hello!

    You have gotten so much good advice here! This is honestly such an amazing place to come when you are feeling low, and feeling like no one else in the world gets what you are screaming!!

    I came here tons when I was first having a hard time, and I read all of the success stories! Gave me HOPE, and that was enough for me to carry on and stay on the diet.

    I have been feeling very good for the most part for awhile now! I can eat almost EVERYTHING again! excluding chocolate, pop, tomatoes and coffee- of which I have not tried and don't really have the desire too!!
    I even had a few cups of regular tea last week on my holidays! AMAZING

    I recently just got back from a surfing trip to the island! Had an amazing time and didn't give my bladder two thoughts either-- because I didn't have to So it does get better with time for most of us.

    Now the only time I have trouble with my bladder is when I eat things I know will hurt me sometimes I have to be bad... lol , but I am telling you, the diet DOES work.


    BTW. I suffered pretty bad in the beginning for about 6 months until I started the diet and started elmiron. Now that I feel GOOD most of the time, nothing stops me either now. This summer I worked TWO jobs, so close to 14 hours a day sometimes working and I WAS OK. so yes it is MORE than possible to work when you have IC.

    My next goal is to join a swim club and start the gym three times a week!

    Hang in there and never give up.

    Jenn

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  • eilostnyc
    replied
    Hi,
    Did you ever have a heart palp from Elavil. My pain virtually disappears but the heart skips is annoying and I know I probably will have to give up on it.

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  • QueenMellyBee
    replied
    Welcome leonielane,

    Hahaha - I say that like I have been here a while. I just recently joined too - although I've been diagnosed for a year.
    But - I feel like it was only last month to be Dx's because I had to quit Elmiron (made my hair fall out and break off) and so I feel like I am starting all over and new to IC.

    Because of quitting the "solve all" Elmiron....... I started flaring and having urgency/pain issues again. I too had a brick wall/ smack in the face of "Step away from the Good Food!" I am finding it very difficult to cook for 2 with the exemptions of every darn thing in the IC hazard list being relatively normal stuff. This is NOT easy, and I am struggling myself. Heck - I went through headache withdrawls cutting soda, cofee, and chocolate out cold-turkey! I was a B#&%* for 2 weeks, I swear. I recognize that I am still grieving myself, and struggling with this crippling feeling of "incurable condition" diagnosis. But as much as I wallow in my puddle of pee from time to time, I am determined to not let it define me.

    I am trying hard to stick to the diet, whilst beginning Enablex and Atarax.....but I don't feel normal yet, and so I can't introduce anything on the no-no list. But I will. You can bet on it.

    I am maybe in denial of my condition, but I am part Cuban, and REFUSE to live this way forever; Not being able to have cuban black beans with vinegar, or mojo pork and pico de gallo is not who I am.

    My goal is to find the right medication combo to get me normalized so that I can eat what I want.... in moderation. I would rather live that way with IC, then cut out normalcy of living and restaurants for the rest of my life. I refuse to inconveinece everyone I meet with my exorbitant dietary needs, and live a half life myself. Not if I can help it.....

    Anyways - I hope that you can find the right combo of medicines for yourself and de-stress to help "calm the beast-bladder" within. I am a little different than all the ladies on here though....... while I hope that you can find your triggers through diet, I don't personally support submitting to it forever - unless every medicine known to man has failed me. I hope you find what works for you so that you can live life fully your way.
    Last edited by QueenMellyBee; 09-20-2011, 05:10 AM.

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  • AJ2011
    replied
    You're welcome- let me know how you get on and also if you want to have a moan! (PM if you want) I'd be interested to see if the acupuncture helps.
    I'm going to start trying some new things (actually the question is where to start as I'm very impatient and want to try them all and I want them to work NOW!) so perhaps we can swap notes.
    Hope your next doc's appointment goes well!

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  • leonielane
    replied
    Thanks so much for kind replies. AJ2011, your reply is very encouraging. Youre right, I have to take charge. I have started doing so by going for my first acupuncture sessions this week and also going to physio (he says my back is kaput along with everything else!). The acupuncture hasn't worked yet after two sessions but i live in hope. The acupuncturist was the first doctor I have attended (besides the urologist) who actually knew what IC is and understood my symptoms, so even that was a relief. I find my symptoms now are mainly feeling like im about to start my period, ALL the time. I dont get much bladder pain, just the odd shoot. Teaching can be a lousy job when youre like this - there's nowhere to hide! Anyway, I hope you are all feeling well and thanks again.

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  • AJ2011
    replied
    Hi there, I got my first IC symptoms 2 years ago. You know how long it takes to see a specialist in Ireland/UK, so I took matters into my own hands (at which point I was driven mad by pain, frequency etc.) After a few months I got it under control through diet. I also kept a diary which was very useful to brandish at the Gyno when I eventually got through the door.
    After about 4-5 months watching my diet, the symptoms receded enough for me to be able to eat and drink what I wanted, except I gave up caffeine which really helped, so don't say goodbye to your wine forever, just wave it off on a little holiday and perhaps replace it with herbal tea for a while:give the diet a chance to help your body heal. I think the most important thing is to be proactive in what you think will help you as a treatment. Don't give in to fear (which is so incredibly difficult, I know). When you feel like this it feels like it will last forever, and when doctors scratch their heads it's so frustrating.Discuss in depth with the doctor how you would like to proceed. Also I asked my Gyno if I could stay on their list to come straight back into the office if I had a flare-up in future instead of having to be referred via my GP, and had maintenance visits even when in remission. I'm very glad I did that now, as I'm in a flare.
    Stress, anxiety and fear are the absolute worst things for your health so try to remember that this is not forever, have faith that you will be well.There are loads of things to try out there, one or some of them are going to help. Sending you healing thoughts.

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  • earthlady
    replied
    I had to give up my wine but now I can have a good quality vodka martini once in a while and it doesn't bother me at all. I was so upset in the beginning about giving up coffee and tea and wine but now I don't even miss them. I have never been as bad as when I was first diagnosed and am currently in remission so it doesn't always get worse and sometimes will get a lot better. You may be able to obtain the Elmiron from Canada, or the generic from India if you decide to pursue it. I didn't take Elmiron and went another route with supplements, some meds, and diet and I've been symptom free for a good while now.

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  • Little Sunshine
    replied
    I'm sorry you have to be here....but I do hope you find some of the answers that you seek. I was told that I have a mild case of IC. So far (not to jinx it) I have been able to control my symptoms with diet and a supplement called Cystoprotek. I follow the IC diet to a T. I don't go out to eat and I carefully monitor everything that goes into my food that I make at home. I allow myself 1 chocolate cookie/week. It doesn't seem to bother me. The only other thing I have experimented with is beer. I have missed it! I only allow myself 1 every 2-3 weeks. I haven't noticed that it bothers me at all. If anything, it actually helps relax me. With that being said, not everyone can handle it and I don't suggest you dive right in. You need to give your bladder time to heal, which can happen by following the diet very strictly. As far as people with IC not being able to work....I don't think that speaks for all of us. Some of us are too sick to work, but I think some people may use IC as their scapegoat to get unemployment b/c they don't want to work. I spent four months in bed when I first got sick....now that I'm feeling better, there is no stopping me. I ran a 5k a few months ago, went whitewater rafting a few weekends back and went back to work about 2 months ago. One thing I've learned, don't get hung up on statistics b/c each case is so VERY different. Instead, focus on treatment options and work on new recipes to include in your IC diet. Best of luck to you!

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  • leonielane
    replied
    thanks so much for all your kind words and thoughts. heybrej i hope your remission returns very soon and lasts as long, it must be so disappointing to come out of it. Nancy, i saw that stat on wikipedia, so i should be more sceptical about it. We do have bottled spring water though I think i may have drank the country dry of it today!
    anyway, i hope i can give encouraging words to some of you someday soon, this really does feel like joining a club. Maybe it'll be fun....oh okay that's stretching it!

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  • NancyB
    replied
    Progression of IC, Etc.

    Just wanted to say hi and to let you know that you are not alone and that there is a wealth of information on this site and lots of people to help you.

    I want you to know a couple of important things. First, only 10% of ICers progress/deteriorate from where they were when they were diagnosed. Second, I have not heard the statistic that 50% of ICers cannot work. You are an individual and your case will be unique to you. If you can, try not to focus on discouraging stats. They will just make you feel bad.

    You have been given a lot of good advice. The diet is something you should definitely try. You may not be diet sensitive, but it will be good to find out. It is also important to find out what bothers your bladder. You may not have problems with all the things on the list. Or, you may have problems now, but after your bladder settles down, you may be able to eat some of the usual problem foods. It is just trial and error unfortunately. I don't know if they have bottled spring water where you live, but if you do, drink that. Just make sure it has no additives, etc. in it.

    As far as your doctor's appointment in 6 weeks goes, I would call the office and see if you can be seen sooner. No use stressing out about that. Stress just makes things worse. Until you have your appointment, read up on all the IC treatments and medications on this site so that you can have a meaningful conversation with your doctor.

    Hope this information is helpful to you.

    NancyB
    Last edited by NancyB; 09-07-2011, 10:43 AM.

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  • heybrej
    replied
    I am so sorry to hear about your diagnosis. I just wanted to pipe up and add that I was diagnosed 6 years ago and had symptoms for about a year and a half before I went into a full remission for almost 5 years. I was literally symptom free - a normal life. I was even off of the IC diet. Just recently I believe I have come out of remission, but as bad as it is to have IC at all, it's not as bad as it was last time. I'm still struggling (mostly emotionally) but I did want to chime in and tell you that it is possible to go into remission for long periods of time.

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  • leonielane
    replied
    thanks so much for all your replies, they mean a lot on day 1! My urologist didnt specify mild/moderate/severe, he just said "there's glomerations(sp?) and there was a fair bit of blood. i cant see how it would be anything but mild given that i am only suffering for 6 weeks and none of this time has been agonising, so here's hoping, any thoughts?!
    Thank you also for your diet advice. I know im going to sound like a bit of an alco (living up to being Irish) but my biggest fear is having to give up the nice glass of wine of an evening. But maybe that won't be permanent, and if anyone has discovered the drink that does not hurt, feel free to share this information!
    i have ordered prelief from amazon since it's not sold here. Im going to have to go to the States with an empty suitcase, the meds available over there sound SO much better!

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  • Pammylynn8
    replied
    Hi there.. I just got diagnosed as well.
    I don't know much about it fading away but I am imagine that people go into remission for long or short periods of time.
    As Donna said following the diet 100% is really important. That helped my pain go from a 7 to 2-3 and the frequency is less (except at night). I did find that I can have some no-no foods. After you eliminate all of the bad you can try to add some of the bad in and see if it affects you. I know it is soooo hard to elimiate food. Blech, I miss chocolate cake, but I can eat choc. chip cookies instead.
    Good luck!

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