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  • laura_ess
    replied
    That sounds so hard. I'm so sorry. If Cystoprotek helped you slightly, it might be worthwhile to look into a Glucosamine/MSM combo? There's a small dose of that in Cystoprotek but it's not the dose that's usually recommended for more intense pain management with straight Glucosamine/MSM. I take Cysta-Q, another bladder compound, and I find it my most accesible medication: easy on my tum, I can take it with food or alone and it's never bothered me. I take it twice a day. It might be sometime gentle to try? No shellfish or anything like that in there.
    Mint tea also helps me a bit; I got horrific bloating and gas with my IC flares (yes, farts are hilarious but not these, man!). Might be soothing for you?

    Leave a comment:


  • poolpet
    replied
    Loneedshelp - I know how you feel. I can't take many meds because of drug sensitivity or am allergic. Thank goodness I'm not allergic to Macrobid. I eat the same thing everyday just about - drink water or weak chamomile/ mint tea. Cannot eat but a pinch of sugar. Life is challenging but even through the tears (pretty much everyday) I still see the beauty all around me. Boggles the mind that more attention isn't given to this disease. God bless you and help your boyfriend

    Leave a comment:


  • Loneedshelp
    replied
    Donna,

    I think I've been willing to try pretty much everything besides the instillations and have thus far... I have written down everything that is considered an irritant for me as well as things I seem to tolerate ok. I eat the same 10 things over and over and all I drink is water.

    Leave a comment:


  • ICNDonna
    replied
    Originally posted by Loneedshelp View Post
    I have not. I'm not willing to endure that type of invasive procedure. One of my urologists told me it will only provide temporary relief and will cause further irritation for me. I'm sure some can endure it but it's not something I want to go through. I also cannot chance the risk of a UTI as I am very susceptible to developing cdiff from past antibiotic use and already having it multiple times. It shocks me what some of the posters can handle on here medication wise being an antidepressant, antihistamine and more all in a combo. I've always been extremely sensitive to meds and even alcohol. Lightweight to say the least. I noticed that you take Cephalexin before sex. Is that to prevent a UTI? Cephalexin is a high risk antibiotic for causing cdiff. Not sure how often you take it and you may never have an issue but Macrobid is a much safer choice if you have to take antibiotics often as I've been told by my GI and primary care doctor. I'm not a doctor but just thought it might be helpful.
    Since you're not able/willing to handle treatments, you might want to keep a detailed diary, with a goal of identifying irritants --- and also "good" things --- sometimes the thing that helps most is diet changes.


    Donna

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  • Loneedshelp
    replied
    I have not. I'm not willing to endure that type of invasive procedure. One of my urologists told me it will only provide temporary relief and will cause further irritation for me. I'm sure some can endure it but it's not something I want to go through. I also cannot chance the risk of a UTI as I am very susceptible to developing cdiff from past antibiotic use and already having it multiple times. It shocks me what some of the posters can handle on here medication wise being an antidepressant, antihistamine and more all in a combo. I've always been extremely sensitive to meds and even alcohol. Lightweight to say the least. I noticed that you take Cephalexin before sex. Is that to prevent a UTI? Cephalexin is a high risk antibiotic for causing cdiff. Not sure how often you take it and you may never have an issue but Macrobid is a much safer choice if you have to take antibiotics often as I've been told by my GI and primary care doctor. I'm not a doctor but just thought it might be helpful.

    Leave a comment:


  • greenredhead
    replied
    Have you tried bladder instillations? Those often help people in a flare. Since the medicine is put directly into the bladder you may not feel as many systemic side effects.

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  • Loneedshelp
    replied
    The antidepressants didn’t necessarily flare me but the side effects were so severe even in the smallest doses that I could not continue them (nausea, fatigue, restlessness, depersonalization, rapid heart beat, disorientation, manic, trouble concentrating, nervousness, headache, tremors, irritability, emotional wreck, the list goes on). It was terrifying for me. I am still feeling the aftermath and am not 100% back to normal mentally.

    I’m not familiar with Wellbutrin but I think it is all trial and error with any med or supplement as we are all different and what works for one person may not work for another and vice versa. IC can feel very similar to a UTI. Or at least it has for me but lo and behold the cultures come back negative... Be careful about excessive antibiotic use. That is how I got cdiff in the first place for treating an intestinal problem.

    Sex aggravates it for me no doubt. Everything feels more sensitive. Then sex dulls the pain temporarily as it numbs it out when you have that “release” and then once it wears off I have to urinate even more frequently and then the pain and discomfort really kicks in the next day. I haven’t been having sex for a while since before my boyfriends accident and now and it’s interesting to note the different “kinds” of pain that I’m experiencing while that has been put on hold.

    All I can say is I’m on my 5th urologist and I’m not giving up. The newest one is sending me to pelvic floor rehab. We cannot just give up and say oh this is just the way it is and suffer for years on end. That’s not acceptable. We have to keep fighting, so please don’t give up. Trust me, I’ve wanted to throw the towel in so many times and I’m in pain a lot of it but I just keep trying things.

    Feel free to PM me!
    Last edited by Loneedshelp; 04-16-2019, 06:47 AM.

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  • Huddos503
    replied
    So sorry to read about your boyfriend and your traumas. Am I correct in reading that antidepressants aggravate your bladder? Do they all cause flares? I have been taking Wellbutrin for about a month and my bladder hurts worse than ever. Is it possible there is a connection? Thank you so much for any information. This is my first post, as I have not even been given the IC diagnosis yet. It’s looking like that’s my issue though. It’s come and gone for years. I always thought I had a UTI. Sometimes no bacteria would show up in urine, but they would give me antibiotics anyways. The symptoms would go away, but these last few months have not been the same. It’s different feeling from a UTI and it does not go away with antibiotics. It’s the absolute worst this week. I’m devastated because it’s affecting my sex life. I will be so sad if sex triggers so much pain. I am seeing a specialist soon. So, I obviously had symptoms before Wellbutrin, but they are so much worse this week. Did you have the same experience with antidepressants??!! Thank you.

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  • Loneedshelp
    replied
    Donna,

    Thanks for your suggestions. I'm familiar with those types of protocols but my anxiety is just too much. I suffer from PTSD since having CDIFF and went through almost 2 years of therapy to get to a better place. Things used to be twice as bad as they are now.

    Going to the hospital will just bring back all of those feelings and obsessions of getting cdiff and the compulsive behaviors that have gone with it. I will be of no use to him when he comes home if I'm fixated on the what if and what could've possibly happened from going in the hospital. I have made his Mom aware of why I cannot go and both my Mom and my brother have told her as well. She has been very understanding.

    Thank you for bringing up that Advil can be a bladder irritant. I recently discovered that and it helps me to know that I wasn't going insane when I thought it might be irritating me. This is just a lot to deal with at 28 years old. I know we all have our crosses to bear, I just wish there was a reset button sometimes. But I will keep pushing ahead.

    Leave a comment:


  • ICNDonna
    replied
    It has to be hard to not be able to see your boyfriend in the hospital. You could ask your doctor about reverse isolation --- meaning that to protect yourself you would wear a gown, mask, and gloves before going into the hospital room and having someone remove them for you as you leave, plus thorough hand washing.

    Not all prescription drugs are harsh --- and some over the counter ones, such as ibuprofen, can be bladder irritants.

    I hope he does well --- and you too.

    Donna

    Leave a comment:


  • Loneedshelp
    started a topic Antidepressants

    Antidepressants

    Antidepressants for IC have been a no go for me even in the minimum doses. I end up worse off than before and extremely ill with flu like symptoms and feelings I've never experienced otherwise as they exit my system. The side effects outweigh the benefit of pain being dulled out.

    Yesterday, my boyfriend was in a motorcycle accident and suffered multiple injuries (broken leg, hand, ankle), and a fractured wrist. I have severe health related anxiety after almost losing my mom to sepsis and having serious health issues of my own including IBS, a history of cdiff/two fecal transplants via colonoscopy, and now IC.

    Upon hearing the news of the accident, my bladder went wild. The pain and frequency was worse than ever before. I woke up 7-8 times last night due to stress and the emotional toll. I cannot go visit him in the hospital due to the risk of contracting cdiff (#1 hospital acquired infection) and my GI doctor telling me with my complicated history to avoid public medical settings like hospitals and care centers...

    Anyways, I'm still searching for answers to remedy my IC. I've tried Elavil, Notriptyline, Cymbalta, Marshmallow Root, CBD oil, acupuncture, D-Mannose, Uribel, Benadryl, Advil, Tylenol, Melatonin, Claritin, DH Aloe Vera, Atarax, and Cystoprotek. The last may have been helping coat my bladder but I didn't notice much significance after taking it for close to 2 months. I need to get my bladder under control now more than ever as my boyfriend is going to require a lot of care once he is home and I need to be able to help his family.

    I have done a lot of damage GI wise and body wise from all these meds in an effort to remedy my IC. I've seen 4 urologists already and they all say IC is a horrible condition with not so great treatment options... I feel like this is a life sentence. I follow the IC diet, drink nothing but water, and am already extremely conservative with that I eat due to IBS. Does anyone have natural ways they've used to help their IC along? Prescription meds are just too harsh for me.

    Thanks.
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