Racer

Sorry for the way to much TMI of my last reply

Hanice, not as much kidney pains, so I am not feeling as bad. Kara, I typed out a message to send the hospital threw the hospitals website complaint system. Unfortunately like many things with this hospital, it was not working, wouldn't accept my message. I am waiting to see if they fix it. badhbt, Rachel, I do take midodrine, but I was taken off of it on a couple occasions, and the problems persisted. This is getting confusing (even for me) so I will try to sum it up, I had a cath (twice now), because of a UTI. I was not able to go at all, so I really didn't have much choice. They said as long as I can go at least once per 8 hours, I would be fine. I had urinary incontinence problems for months prior, that were just shrugged off as a neurological problem they couldn't do anything about. I was only referred to a urologist after I got the UTI and cath. The urologist said all the urinary problems I have been experiencing, including the UTI, are caused by urinary retention with overflow incontinence. He said this was a neurological problem, a "neurogenic bladder", and that I would need to talk to my neurologist about it. The neurologist just shrugged his shoulders, nothing he could do. The only tests I have had is a urinalysis and a post void scan that showed I had 400ml left in my bladder post void. My PCP said that the only thing I could do was to keep managing it with absorbent products and wait to see if it goes away. That is what I have been doing for three months now, except for the one week I had the cath. The cath was a major relief, physically and mentally. Since the cath was taken out Friday, I have yet to really have a controllable void. Since it was taken out, I feel like urine is filling to the point that it backing up to my kidneys. When I feel it in my kidneys, I am doubled over in very bad pain until my body decides it wants to go into "purge" mode. It is like with a flip of a switch I uncontrollably void my bladder, bowels, and vomit all at the same time. The only thing the hospital would do was give me pain meds. Thankfully my body decided to calm down a bit and I am not experiencing such bad "purges" and kidney pains.

As usual, thanks everyone for your replies. I think I might figure out how to file a complaint against the hospital. Not sure if it is a waste of time, but I think I will at least feel better knowing I did something about it. Tachy, I cant take any of the meds for this problems, because they also lower blood pressure and heart rate. I am on florinef and midodrine and was told I should never take a alpha blocker

Thanks

I am feeling a bit better, luckily I am very sensitive to pain meds, making a small dose very effective . I dont have another uro appointment, he said that since it is a neuro problem, I should see my neurologist for treatment. My neuro just shrugged his shoulders, and is only ever worried about my bp, something my cardiologist already takes care of (with way more expertise). I need to find a new neurologist

Hanice, thank you. I don't know what the story is, they didn't offer any treatment options other then the cath. Now the cath is gone and they are saying to just use pain meds. This is the only hospital near me that my insurance will cover. Cleveland is not that far away from me, but my insurance wont cover. I have a fairly shabby insurance plan. Sarah, people were herded in like cattle, haha. No immediate care in my area... and I usually always refuse pain meds, because of addiction in my family. Thanks

I just need to vent, I was feeling so good, but then I had to go get the catheter out today that was being used to prevent my urinary retention. Thinking the urologist would have some way to help me... "nope, sorry live with it", was basically the response. After having the catheter out for a couple hours it got to the point that I was having SEVERE kidney pain, until my body decided it was time to involuntarily void. Called back to the urologist, who said to go to the ER and get them to check me out. I had the worst ER visit ever, I had to wait for over two hours in the waiting room, in this severe pain, involuntary void cycle. I finally got back to a room, and desperately needed to clean myself up. But no, the best they would do was to give me a bed pad to lay on, while I was still fully clothed, no sheet, no hospital gown, nothing. Then they said they needed the room, and must place me in the hall. I had no other option then to lay in the busy hall, on a bed pad, and pray I didn't pee myself! Then they want to talk about all my problems, in this hall, in front of everyone! I spent most of the time down the hall in the bathroom, out of fear. All the ups and downs, forced walking around, I blacked out twice, hit the floor, and no one even noticed! So after all that time, the best they could do was to prescribe me pain meds and tell me to follow up with my doctor. It was the most humiliating thing I ever experienced. I so badly just wanted to get up and leave, but the pain was bad enough that I stayed

Just have to share, I am in total bliss at the moment, my bladder and bowels are empty, hr and bp stable, headache free, I feel 100%... this must be what normal feels like, lol. I know the stars cant align everyday, but it is such a boost to my mood. Neuro appointment in the morning to go over everything

I am feeling okay, no pains at the moment, meds are working, everythings staying where it should... all okay currently Thank you for asking

I am taking depakote twice a day that helps with headaches. The low doses of anti-seizure meds for migraines are not that bad. The side effects really start to take hold at the anti-seizure dosage levels

After taking the cath out yesterday, I was not able to go the rest of the day, at all, none. So this morning I had to go back to the hospital to get another catheter. This time the doctor recommended that I keep it in for a week. My body needs time to heal, and meds need time to build up in my system. They hooked me up with all the proper supplies this time, another course of cipro, up on zofran... everything is flowing threw me, I couldn't feel any better right now. Going to try to relax and de-stress the next couple days Thanks everyone for your helpful replies

I dont know, but it seems to fit with the rest of my under-active autonomic system.

Forgot to mention, they are saying this is possibly "neurogenic bladder" with urinary retention and "overflow incontinence". Evidently (from what I can understand) these problems all go together under neurogenic bladder, and can cause recurrent UTI

Akgirl, thats sort of what I get with what is being called "overflow incontinence". I have no idea I am leaking or can feel the full bladder until it gets to maximum capacity. They are saying it is from a lack of being able to sense them. So yes, you are not alone, I am around the same age and must use "underwear" when I go out of the house. Things could be worse, I am just lucky we have this "discreet" modern technology, imagine life without it

Got to a urologist today, they took the cath out and gave me a med to try. Not sure if I should be happy or not. I knew the cath could only be temporary, but it alleviated my pain, urinary symptoms, and kept me dry. Now back to the start waiting to see if this med works.

I am supposed to have it taken out by a urologist, but they could tell me I need to keep it in longer, I dont know. Surprisingly it is not all that bad, way better then the pain I was in. I just wish they would have given me the proper equipment to get a much needed good nights sleep. This is the first in months I have been able to lay in bed mostly pain free, yet I cant sleep with a tiny leg bag. Did I mention I have to empty this thing every hour? Just my luck to be stuck with the worlds smallest "bladder" (not as if you could fit anymore in a leg of your pants )

I am ready for the punching bag! The hospital never gave me the bag you hang on the bed, they only gave me a leg bag. As I found out last night, I could not sleep with a leg bad! My bladder would NOT drain for obvious reasons. All the air and unsterile urine rushing into my bladder cant possibly be safe? I was sure I could get a bed bag today... but nope, couldn't get in touch with anyone who was willing to help me. Looks like I wont be sleeping tonight or threw the weekend. If all else fails I guess I will be removing this myself

When you pee those three times, is it "alot", or do you go frequently but in small amounts? Might want to google "urinary retention", "overactive bladder", and "neurogenic bladder". My problem is I go about every hour, but it is not very much. I also have pain that I didnt associate with a full bladder. I am thinking my problem has been from urinary retention. I would suggest seeing a urologist if you think you might have a problem

Thanks Yep, and now I start this all over again... called the urologist, me: "I am having problems with urinary retention and need to get a temporary catheter taken out", urology office: "if you have a catheter in and it is working, then you are not having problems with retention". Ugh

I just have to share with everyone! What a difference a day can make. I finally got in contact with my doctor today, who decided my symptoms required I go to the hospital immediately. Seeing as I have a UTI they decided to do this simple test. I went and emptied my bladder, then they scanned it to see how much urine was left. I had ALOT that I could not void. They convinced me to let them insert a catheter. After getting over the intense burning... the intense abdominal pain, and so many other symptoms, I have felt for the past three months have totally went away! I must see a urologist asap to figure out how to treat this, but it is so great to finally get symptom relief. Would have been nice if they listened to me three months ago. If I hadn't got the UTI they would still be ignoring me (Edit-I changed ml to "alot" since my numbers seemed to be off)

Well my PCP has been so useless. I have tried calling them four times in the last two days, they never return calls, and totally ignored my problems this time. The message left was "we have never heard of your bowel problem... continue to take your antibiotics with a meal, and discontinue the use of the laxatives... follow up at your next appointment". I am on a liquid diet and my GI dr has me on the laxatives because without them I clog solid! Did they ever even read my history. On top of the usual, I am having chest pain and shortness of breath (unusual for me). My next appointment is Nov?! No referrals, nothing... I seriously don't understand why I am being treated like this, I must be doing something wrong. I keep getting the idea that if I was to die, they feel they did the minimum required to help me so they would have a clear conscience. I am so frustrated I could cry Sorry I keep venting, just dont have any other way to let my emotions out

Thanks! Is a "allergist/immunologist" the proper doctor to go to? Waiting to see what my doctor says

The last place I would think to find a "pro tanning" thread. I would suggest, http://www.skincancer.org/healthy-lifestyle/go-with-your-own-glow or if you must go old school, http://www.skincancer.org/healthy-lifestyle/tanning/sunless

Is this the thread? http://forums.dinet.org/index.php?/topic/23548-immune-system-testing/?hl=%2Bimmune+%2Bsystem+%2Btesting Yeah, I have not had any of those tests.

I have had numerous "complete blood count" and "comprehensive metabolic panel"? I had always thought they checked everything in one blood test! When dr's were talking to me about "blood tests" or "labs" I thought that included immune system. So it looks like I have not had the proper testing done? UGH *@%unbleavable! I should have had this testing done a decade ago! I get viral or bacterial infections many times a year and it looks like dr's have always been misleading me convincing me that everything was fine! Seriously, in the past ten years I have had bronchitis twice, pneumonia, sinus infections, ear infections, viral skin rashes, flu viruses twice a flu season, and now sibo and my second experience with a UTI. During my childhood strep throat was my infection of choice. Sickness happens with enough frequency that friends make comments. I have always told them "blood tests looked fine, immune system looks okay". So if I count viral infections also, this will be number 5 for this year (3 viral 2 bacterial). I think it might be a good idea to get a flu shot this year.