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Bad urinary retention - unable to pee for 2 days!

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  • Carolyn M
    replied
    Good afternoon OllieR~
    Great to hear your Kidney infection is gone! I know with my Mother, I alway try to keep conversation light/stress free so she doesn't go into a flare. I guess I understand about your family and friends wanting you to just let the whole thing go, less stress and all! Who know's, maybe when you sit down with this gal and she tries to explain things to you, she will see you are in much better shape felling better and all and most likely will not admit fault, but will know that they made a terrible mistake. Hope you stay out of your flare, Carolyn

    PS the little dog "LILLY" will be going to a rescue this next Wed. or Thurs. I am attached to her but my much larger dog Roscoe does not feel the same way! Nice to hear you rescued the kitten, it's always nice to hear there are others who are compassionate. Take care, Carolyn

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  • OllieR
    replied
    Hey Carolyn thanks for the kind note. It's so sweet the way you rescued and took care of the doggy <3. I'm not a huge dog person myself, but I hate to hear about a wounded animal! (My sister and I took in a very wounded kitten. She's the sweetest!)

    Anyways, the kidney infection finally went completely away! I'm not quite sure when. The flare didn't stop until a couple days ago. Since you can never really tell with the IC, I went to the dr. and did another urine sample to verify it was gone. They said yes and I got culture sent to for good measure. I am sure I got it at the hospital because believe it or not I have only had one other infection (a mild UTI pre-IC diagnosis) in my life, and when I cath at my own house I never get one.

    I am getting my records and am supposed to be talking to a girl there, a counselor who had been part of my "care team" (more like "torture team") lol. My friends and family say I need to forget it and move on as quickly as possible, but I can't just do that. I settled and agreed not to make a big deal about it, but I know that in order for me to move on it would help a ton to talk through what happened with somebody at the hospital because I hate not understanding what happened to my own body. Then, I may lodge a written complaint to a superior or at least walk away knowing I took an active role in what happened to me, and perhaps saved a future ICer the trouble.

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  • Carolyn M
    replied
    Hi OllieR~
    Just getting back now, I had a stray dog that showed up at my home and was bitten by a much larger dog and have been getting her medical attention and then some, she's here until better and then I'll see about getting her adopted out unless she is claimed.

    So good to hear that you will follow through, can't believe the doc didn't evaluate your situation, the outcome may have been completely different. How's your kidney infection?? As far as what to say to get through to a Dr or any Dr should be so telling with your condition at this point, you may have gotten the kidney infection because you were commited and you were only able to relieve yourself when told to do so, which was way too long of a wait in between, too much bacteria growth in that time frame, the picture should be very clear. Unfortunately you had to go through this to teach us all a lesson. You would hope that when you trust someone, especially someone in the field, that you would be treated like you would treat them if they had IC. I'll keep praying for you and hope that your getting better, kidney infections are the worst. Keep us posted and take good care. Carolyn

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  • OllieR
    replied
    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?

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  • Carolyn M
    replied
    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

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  • OllieR
    replied
    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, 05:14 PM. Reason: Typos

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  • penneyjo
    replied
    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.

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  • nottoc4
    replied
    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

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  • KathiB
    replied
    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!

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  • Mothergoose
    replied
    Just to let you know you are still in my thoughts.

    MG

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  • OllieR
    replied
    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!

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  • OllieR
    replied
    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.

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  • Mothergoose
    replied
    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

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  • ICNDonna
    replied
    Do you have someone who can go with you to your appointments? Sometimes that helps us to relax.

    Donna

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  • OllieR
    replied
    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.

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