Latest Blog Article: Pin of the Day - It's Okay To Tell People You're Not Okay And That Your IC Is Flaring
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  1. #1
    ICN Member OllieR's Avatar
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    Bad urinary retention - unable to pee for 2 days!

    I'm sorry this is long, but I really need support. I feel really really bad and I've been told I should feel bad/guilty about getting upset when my IC got really bad I was denied medical treatment for two days while I suffered with severe retention and pain due to the "it's all in your head" approach to IC.

    So I had already been having significant difficulty urinating with some retention - I may have had to cath 1-2 times a week and sometimes was not able to go when I felt I needed to. My doctor knew and we were talking about what would be best for it figuring I had at least a little bit more time to work with.

    Things started to get bad last weekend. I had been going to therapy classes during the week to learn alternative methods for management of stress, illness, and pain and I had expressed to one of the therapists there my concern over my physical health and it was taken in a horribly wrong way. I wasn't thinking at all and told her I was concerned about my well-being and tired of taking so many pills to get through the day. Yikes! I was trying to express that I wish my IC would get better and I wouldn't have to take so many oral meds. Well, she decided that I was overdosing on my pills and was harming myself (since I said I was worried about my well being) and freaking *committed* me!!!!! When she started filling out the paper work I was like, wait, no, that's not what that meant! But she said if I didn't calm down and comply she was going to send the police to come and restrain me.

    I told them I have to manage my IC very carefully. Well, they would not give me all my IC medications, nor did I get a full dose of them. They would not let me follow the diet. By the next day, my IC was worst than it has ever been before. It didn't matter how many fluids I took in or how much relaxation I could do, I *could not* pee. I said I needed to go to the medical hospital and see a uro, but they refused. Over the next 24 hours they would only let me cath myself at minimum after 3 hours, other times making me wait 6, and finally 10 hours, which at that point I was obviously in such a state that they finally took me to the ER. (I usually pee anywhere from 1-5 times in an hour and have an awake bladder capacity of 50-75 ccs so my bladder is quite small and intolerant)

    That night I had cathed myself and took my meds around 11pm. I got up around 5:30am. They would not let me cath or take my meds but didn't get to the hospital until 9 or 10. They put in a foley cath *without giving me pain medications first*. It was traumatizing. Soon after I got there several nurses and the doctor came in and it was a bit of a blur. Before I knew it I was being stripped down, completely exposed and had a lot going on between having the catheter going in, blood being drawn, IV put in and being hooked up to monitors. At first I just screamed, but then I broke out in hives and was having a ton of trouble breathing so all I could do was grasp at the air. I don't know how bad my vitals were but I do know that when I was first plugged in the monitor made the nice calm "beep....beep....beep" sound and once they started working on me it started setting off an alarm.

    They had to give me sooooo much pain medication and my level never dropped below a 6. But I was finally able to calm down and breath and the hives stopped getting worst. I was able to pee again after that, and they discharged me and I am monitoring my IC super closely while beg. to work with my uro on what to do in the long term.

    Anyways, that's weird right? The medical staff said they didn't understand at all why I was so upset. They were really pretty mad that I freaked out. They said I wasn't trying hard enough, and that it was my fault I couldn't pee on my own. They told me my reaction was out of hand and that I need to learn to stay calm, because "you know, nobody has a perfect life and everyone has to get through hard things so you just have to learn to deal with this and stay calm." I feel I'm actually usually quite calm. But I don't think they tell other patients at the hospital who are in extreme pain to stop being upset. (I mean, there was even significant amounts of blood involved. I don't think I would have any problems if I was able to force myself out of pain and and stopping wounds on my body from bleeding! Wouldn't that be wonderful?)
    Last edited by OllieR; 05-12-2011 at 04:45 PM.
    Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

    24 yo F

    I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

  2. #2
    Forum Manager ICNDonna's Avatar
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    It sounds like a real nightmare. I hope things are calming down a little for you soon.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    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.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  3. #3
    ICN Member Mothergoose's Avatar
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    I am speechless that is horrible, I would never go back to the person who committed you, are you not supposed to be able to express your concerns?

    I would find out who you should be writing too and write letters letting people in charge know how things got so out of hand and how once committed you were treated.

    This is deplorable, i don't know ignorant people.

    I am so sorry you had to go through all that.

    hug I am sure you need one MG

  4. #4
    ICN Member OllieR's Avatar
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    Thank you so much Donna and MG. I really need support right now. Yesterday I was just so relieved that it was all over but this morning I'm a nervous wreck because I had flashbacks all night long!!! This sucks. Even now, I have to wait until I'm in quite a bit of pain until I can pee because my bladder has to be full for some urine to leak out. At the hospital they only checked my urine and blood and said since it was clear there couldn't possibly be a problem (?). I called my uro yesterday and plan to call again today. He is 3 hours away, but I'm thinking about just driving to a urologist around here, even if they are not an IC specialist to see if I can get some help.

    I'm a bit scared, but am trying not to freak out because I keep being told to stop freaking out and there is absolutely nothing to be scared of, but I don't know, this just doesn't feel right to me. Am I out of line to be scared? I'm so confused about how to feel. I'm going to feel super super bad if I have to seek medical attention today. I know I really shouldn't do that. Urgh.
    Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

    24 yo F

    I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

  5. #5
    Forum Manager ICNDonna's Avatar
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    Do you have someone who can go with you to your appointments? Sometimes that helps us to relax.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    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.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  6. #6
    ICN Member Mothergoose's Avatar
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    You have nothing to feel bad about if you need help you need help.

    The retention may not be from having IC and it needs to be checked out what is causing it.

    What meds are you on, lots of meds cause my retention to get much worse.

    If you don't feel comfortable posting this, PM me and I will let you know if any of the meds you are on have a tendency to make retention worse. It may give you a place to start from, deleting any meds possible problem meds, one at a time, to see if they are a problem. [B]I of course am not suggesting that you do this without discussing it with your Dr. first and making a plan with him/her to try this. [/B]

    You should not stop and start meds on your own, we don't know all the effects this could have on our bodies, but I can give you suggestions, for discussion with your Dr. This could possibly be done over the phone, if you can't get to your uro right away.

    I have had meds cause me retention that my Dr. has swore should not make my retention worse and it has, so that is why i might be able to give you suggestions, I have tried many many of the IC meds that have done this to me.

    But if you are still have such retention today you need to go get medical attention today.

    Last time I had a Cysto/hydro/ DMSO I was in complete retention afterwords, the nurses kept getting me to drink water, they figured even though I explained retention was a problem for me, that since I had not been drinking since the night before, I was put out for the procedure, that I didn't have enough urine in my bladder to go, not to mention I was holding the DMSO and what ever else they left in me. Also for me I can drink water and within 20 mins I can pee, if I eat foods that bother my bladder I usually know within 20 mins, so things go through me fast.

    Anyways after 3 hours and 6- 8oz glasses of water plus IV fluids, the nurse phoned my uro, he said I needed to be cathed or risk my bladder rupturing.

    So if you are still no peeing any amounts you need to seek medical attention and don't feel bad for it.

    Also if your bladder gets really stretched out for long time, the muscle can loose it's ability to contract back down all the way. I know a hydro does just this but it is only stretched out beyond normal capacity for a short time.

    You are not crazy or selfish or neurotic, you have a problem that needs to be addressed, it is nothing to feel bad about.

    I agree take someone with you if you can, people tend to treat you a Little better if they know someone is witnessing what they are doing and saying.

    Please go get some help. MG

  7. #7
    ICN Member OllieR's Avatar
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    Thanks for the support and encouragement. I do often have somebody come to appointments with if for nothing else the fact that I don't often feel well enough and/or are on too many medicines to drive myself :P. And yes, I agree this helps!

    Yes, many if not all of my medicines can cause urinary retention but I've already had some doctors look into this and they decided the benefit was worth that side effect. For example, if I don't take pain medicine, even after physical therapy, I am in too much pain to fully relax my muscles. When I'm given the medicine, the pain subsides and I am able to relax enough to urinate. I really do want to be on less med. though! I plan to ask my doctors next week if I can cut anything.

    I am just like you MG. Things go through me super fast. I feel like all I hear is that I should drink more water and relax more. I do these things as well as I can, but it's just not enough. It is frustrating because I put in a LOT of effort on my side to help the IC - diet, exercise, PT, regular therapy, stretches, relaxation/meditation, and so forth, but I feel like I've hit a brick wall with doctors.

    My uro called. He's supposed to be one of the best, but he said just to keep cathing myself or go and get an indwelling catheter and that is what I should do until I see him next month for an interstim trial. The problem is that both of those options are horrifyingly painful!!!! My body literally can't stand the pain. I am still waiting for my bladder to fill up until I can stand the pain, then I pee on my own if I can or cath myself.

    I'm getting other opinions next week. I worry soooo much about not getting help for this problem! I can't believe I'm having so much trouble. It makes me sad. I hope I can find a doctor who does more then take urine and blood samples and says I'm "fine." I am so worried about my poor body and bladder.

    Thanks for the support. I need a ton of it right now. I must admit I'm scared to be having this problem, seeking medical attention, and not being checked out. I know I'm not going to die, but I'm really scared, especially with the pain; I thought I had pain before, but now I'd like that back compared to now lol!

    I am making an appointment next week to go back to a uro in my area I had seen before and really liked. He only takes on serious urinary problems, and he is so busy that at the time he said he could not take me on because my IC was mild. Well, I guess that's not the case now! He's a great doctor. I'll keep you guys posted on what happens. I'm hopeful that he will help me.
    Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

    24 yo F

    I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

  8. #8
    ICN Member OllieR's Avatar
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    Well, I consulted with two Uros, one on the phone and one in person. The one on the phone is one of the best in the country who happens to live a couple hours away from me. He is just so busy because he said he can't help me until I go for an appointment next month. Fortunately, if I keep my stress levels down I can pee on my own more often which reduces cathing. I'm on an antibiotic as well.

    Thanks for your support. I've tried a bunch for my IC and it keeps getting worst so I'm glad my body started working at least a little better so I feel like I can gather my thoughts and make a good decision about what to do next. But, don't worry, I'll decide soon - believe me, I do *not* ever again want to get stuck unable to pee for days on end! OUCH!
    Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

    24 yo F

    I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

  9. #9
    ICN Member Mothergoose's Avatar
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    Just to let you know you are still in my thoughts.

    MG

  10. #10
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    Oh...My...Goodness... This is such a terrible story, my heart is just breaking for you! I cannot, CANNOT! believe that they had you committed. And then, having you committed because a serious medical issue is causing problems, and then not let you manage/treal that medical issue! I agree with MG, I would be filing complaints and maybe, maybe even speak to an attorney! Just horrendous.

    Anyhow, I hope you are feeling better, that you are able to stay calm and get some relief. Hugs and prayers to you!
    Conditions:
    IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

    Medications
    Elmiron 3x day
    Trazadone at bedtime
    Tramadol as needed for pain
    Monthly B-12 injections
    Continuous Birth Control (even though I had a hyst, to control cysts)
    heating pad, hot epsom salt baths, strict IC diet
    Interstim implant 9/11
    Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

    Failed Bladder Treatments
    Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching

  11. #11
    ICN Member nottoc4's Avatar
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    What a terrible story. I feel so bad for you.
    Many meds can cause retention,Enablex had me in a terrible fix of retention after just 4 days on it.
    Traveling for hours in a car can do it too.
    This disease is painful and leaving someone go that long without releiving themselves can be dangerous.
    I would definitely complain to the Health Dept. of your county and the Chief Health Official of your state.
    Keep us posted,we care. Jo

  12. #12
    ICN Member penneyjo's Avatar
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    I think I would consider filing a complaint as well. The problem is, they usually don't "do" anything about these things.

    Have you considered that you might need just a little more anxiety medication? I had to up mine significantly when I got IC. It is incredible the amount of stress it causes and taking a higher dose helps me not get so worried and stressed. ...just a thought. So sorry this happened to you.
    treatment:
    -I follow the IC diet to the letter
    -acupuncture and chinese herbs
    -Prelief
    -UTA
    -instillations as needed
    -beginning yoga and specialized yoga for breathing and relaxation
    -Wellbutrin
    -Klonopin


    main symptoms: pain and burning

  13. #13
    ICN Member OllieR's Avatar
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    Hey! Thanks for all the replies. Man, I needed to come on here and see all those encouraging words . It's been a rough week. I thought that maybe when I got over this emotionally it would all go away. Oh no. It's such a freaking nightmare. I had been having a lot of trouble getting treatment for this problem in the weeks following the incident. They had referred me to a "follow up" with a therapist, and while I know it's crazy to go, I went to see if I could find some answers. Well, this turned out to be smart.

    She said that the notes from my records suggests that the staff thought I was being manipulative, that I was a liar, and I was just trying to get attention and/or more drugs. I don't know who they have shared or not shared this information with yet. But the mere fact that this was said about me actually made my throw up.

    Thanks for the advice. My parents have talked to a lawyer, but I have not yet spoken to anybody (yet). So no, I will not be forgetting it and moving on. I have just requested my records and called some of my other doctors to see if this place sent them anything about me. I think they'll probably try to give me a hard time about my records so if anybody happens to know what patients have rights to that'd be awesome (I don't know if they're are any restrictions; I plan to research that in the next few days). But I just have to take it step by step so I don't overwhelm myself.

    And yea, Penny, I actually switched my medicine like a week and a half ago. It worked right away. It's so awesome! I'm glad you suggested it; a friend had told me that too which is why I asked about it, or else I may not have! My GP said some people just don't respond to certain meds so I'm super glad that kicked in so I can deal with this hot mess lol.

    And, due to some suggestions on these boards and with my one doctor, I am trying cutting back on some of my medicines. Probably due to this it seems like my bladder has changed. I still have retention problems, but can pee without a cath. The catch is that I have little control over that ability to pee . So you ICers know what all that means. The best case scenario is that calms down, but I don't loose the ability to pee lol. We'll see.

    Thanks for the support. So crazy.
    Last edited by OllieR; 05-31-2011 at 04:14 PM. Reason: Typos
    Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

    24 yo F

    I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

  14. #14
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    Dear OllieR~
    To me this is so, so shocking and I had read your thread earlier but was so upset that I felt that I needed to cool down before my reply. I am shocked that a therapist would even have the ability to commit anyone period!! I shutter to think what your demise could have been with your all too small and tiny bladder, having to wait so long to relieve yourself, she/he is fortunate that you are here to share your story and she/he is not sitting in jail!! I do hope and pray that you have the stamina to follow this through. In my oppinion she/he is the one who should be commited for taking your precious life into her/his hands and playing God when she/he abviousley knew nothing at all about this terrible disease, shame on this therapist! The fact that this therapist is still able to treat patients is very disturbing and I hope that at some point this person looses their license to practice, as she/he is deffinately not compastionate and does NOT know what the hell they are doing. Please keep it up and keep us posted. Your friend, Carolyn

  15. #15
    ICN Member OllieR's Avatar
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    Thanks for the kind words and of thinking of me Carolyn. It has certainly been a hard time, but now that I'm further away from the actual experience I've noticed I've been able to deal with this situation without freaking out or becoming impatient. It's slow getting in touch with people to figure out how I can report this situation to the highest leveled person I can, but it will happen at some point.

    The therapist cannot actually commit. She ran downstairs and told my doctor that I needed to be and the doctor agreed to do it, even though the dr. did not talk to me about the reasons I was going to be committed. The therapist seems to have stretched the truth. Honestly, the whole thing is so weird! I should be getting my records in the next couple days. I'd like to see if they shed light on anything else. This office happens to be connected to a local hospital and I do know I can call a higher up in psych at the hospital, so I can go above their heads.

    Thanks for the continued support! I am lucky to have very caring friends and family who are helping me to still feel happy and all. Unfortunately, the lack of treatment for the retention has caused me to be having a brutal kidney infection . I don't understand why I can't get more help for this, even though it's over a month since the problem started! Any ideas for how I can communicate this better to my doctor?
    Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

    24 yo F

    I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.

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