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ChrissySunshine
05-30-2006, 12:13 AM
Mornin Everyone, I hope your all doing ok today. I need a little advice...

I'm doing really bad. Had pickles and wine Friday night went into a HUGE flare (biggest yet), and ended up in ER Sat in complete retention. They put in a foley cath and it works ok, but only when I'm standing up, or very upright! I have to actually move JUST RIGHT, and sometimes the urine will come out, sometimes it doesn't come out at all, and I Feel soooo full after laying down!! Now I'm peeing blood and clots. I'm in soo much pain, I will feel a painful twinge often, then a little more urine will come out. They gave me Levaquin 500mg qd, and sent me on my way to see my doc on Tuesday (today).

I went back to ER yest cause my bladder is STILL filling, when I lay down it's like I don't even have the cath in. There IS a bit of urine coming out but more is being retained! I have to really move around to get the urine out. (I also have blisters in my throat, an increasing temp of 100.5 or so, I'm all swollen, and have this weird rash coming out all over my body, my pain level is at like a 9.....)

WELL, the ER doc ordered labs, IV fluids, a foley replacement and a Demerol shot without EVEN LOOKING AT ME!! Then came in said, labs were all normal, and it is normal to have to stand and move around to empty your bladder to due gravity. Sent me on my way to see my doc today!

I've got an appt. this am, supposed to be for my 8th Elmiron instill, it's at 9am, and I'm just gonna go there I guess. I don't think the doc is there, but the nurse will be, and somebody HAS to help me! (I just started treatment with this new doc, and recently told my urologist that this new GYN will now be handling my IC....now I don't know WHO to go to...I'll just start with GYN I guess.)

Does anyone have any thoughts as to what might be going on? Is it normal to still be retaining urine while lying down?, any thoughts at all are greatly appreciated.

emilyrose197377
05-30-2006, 01:06 AM
I have No Idea Chrissy. I had a foley cathter for a week before when my bladder shut down and I couldn't urinate on my own. Mine never leaked but I did have blood in my urine. I was told blood in my urine is normal for ic patients.I hope the uro can help you today. Keeping us posated to how you are doing?

:grouphug:

ChrissySunshine
05-30-2006, 01:12 AM
Thanx Kim..:grouphug:

ICNDonna
05-30-2006, 03:34 AM
The foley should be draining some even if you are laying down. Have you been checked to be sure your bladder hasn't "fallen"?

I hope you get some answers today.

Donna

ChrissySunshine
05-31-2006, 01:27 AM
Well, Gyno first yesterday said not related to any GYN issues, that it is definitely a Urology issue....here we go.

Got to Uro, got in and while waiting in the room, I heard "WHAT..."bang", "bang" more muttering something about the ER sending her "THESE CASES"!!!!

She walked in a few minutes later and said "Hello"....I said "I'm so sorry I bothered you today."...she didn't respond....I said again, louder this time "I'm sooooo sorry I bothered you today"; she looked all confused and said "hmnm?"; I said "I HEARD WHAT YOU SAID"...she didn't say anything...I said "Your walls are REAL THIN....I HEARD YOU SAY "WHY DOES THE ER SEND ME THESE CASES", and THEN BANGING AROUND. She looked more confused and said "Oh, that, was about another patient to ER sent me...she's terminal and I can't do anything for her...I don't know why they keep sending her back...had nothing to do with you"..........!!!!!!!!!! RIGHT!!!!!

Then she began by telling me that this complete urinary retention is NOT A UROLOGICAL ISSUE....it is NOT AN IC ISSUE....must be [I]nerve[I] issue???? Something about my nerves not allowing my bladder to work. She mentioned that it may be my BACK (I have herniated discs, but they're at the thoracic level) Just then by B/F walked in THANK GOD....I told him..."She thinks it's my BACK!!!!!!!" She completely turned her attitude around when she saw him. Left the room, came back again saying it's a nerve issues, suspecting MS, did a test on my feet, asked my some more questions...and that's about the all I can say right now.....crying too bad....the WHOLE SITUATION SUCKED....I've had it...I'm sooo sick....rash is now all over my body, blisters in my throat...only good thing is I could pee after foley removal....Sorry, guess this turned into a vent.....:headbang: really didn't mean to..

dancemomof2
05-31-2006, 02:36 AM
I have No Idea Chrissy. I had a foley cathter for a week before when my bladder shut down and I couldn't urinate on my own. Mine never leaked but I did have blood in my urine. I was told blood in my urine is normal for ic patients.I hope the uro can help you today. Keeping us posated to how you are doing?

:grouphug:


Kim didn't you have a foley with your hysterectomy and other surgery's. What kind of cath did you use whenyou self cathed for retention? Didn' they cause some trouble as well.

Chrissy, sorry I can't help just wanted to give you some support. I have been lucky enough to avoid caths unless it was for a surgical procedure. Hugs to you.

tigger_gal
05-31-2006, 02:43 AM
hugs to you.. that hospital needs smacked..... that doctor was just out of line.. I hope you get relief soon and you can vent away, you deserve it.

emilyrose197377
05-31-2006, 03:19 AM
:grouphug: I am sorry for what you have been through.

blackcat25
05-31-2006, 03:34 AM
Hi.:grouphug:
I have been in exactly your situation. I had retention and an ER doc out of the blue told me I had multiple sclerosis, purely based on having urinary retention. After MRI scans it turned out that I didn't. but I was so scared at the time. I was told that it is VERY unusual for MS to start with retention, you generally have a lot of other symptoms first. Also it is possible to have nerved damage related purely to the bladder - I have this - and it doesn't necessarily mean that your spine is damaged.
I know it is horrible not knowing but try not to panic - if you've survived this long with ic you must be a really strong person, and you will find even more strength to deal with this. Feel free to contact me if there is anything I can do to help, or if you just need to talk.
Blackcat:cat:

Dixiefireball
05-31-2006, 07:23 AM
how awful!!!! i'm very sorry you are having to deal with all of this.....That uro didn't make matters better that is for sure!! i feel so sorry for you!
hope you find some answers and start to feel better soon.
boy enough is enough already.

sending you hugs and prayers for better days to come.
Rhonda

ChrissySunshine
05-31-2006, 09:01 AM
Thanx guys...new day today. Went to PCP, the "blisters" on my throat are normal papilla (or something like that he said). I discussed my situation in detail with him (surprisingly, he had alot of time for me today...cancellations!).

I've had it with the way I've been treating this IC, had it in the sense of traditional medicine. I'm getting sicker and sicker all the time...doc's just aren't cutting it for me, and in fact I think they're (traditional medicine) is making things worse for me by the day.

I've been doing LOTS of research (not too much else to do...it's a GOOD day when I can sit at the computer for any length of time even)!) I think I've mentioned this in another post, but I'm beginning the think that my body is toxic...overloaded with chemicals (from food, air, medications) and/or yeast. It is NOT just my bladder causing me symptoms...(new ones pop up daily it seems somethimes)...and in my case this makes alot of sense.

I'm going to go a more natural route, and my PCP agrees with this. I'm on tons of meds...first Vicodin, then Elmiron, then ALL the other ones to deal with the symptoms as they came up. He said if he gave one of his elderly patients anywhere NEAR the amount of meds I'm on, that they would most certainly go into complete urinary retention. Makes sense to me.

Gotta run for now...thank you all so much for your support. :grouphug:

Kara29
05-31-2006, 05:38 PM
Chrissy,

For your future reference since your foley is gone now....

I've had foleys for months and months at a time sometimes for half a year even. When you lay down the foley should theoretically drain, especially if you have a bedtime drainage bag, if not and they sent you home with a leg bag then there is no way for gravity to pull the urine down into the bag. Nightime bags are designed to pull the urine from it's source. It has something to do with physics and I don't fully understand it myself but you should drain at night. You don't have to be standing up for it to drain correctly. I have two foleys at the moment and I am laying down, they are both draining into my bedtime bags. There are several reasons why a foley may not be draining properly.

(Always keep your urine bag below the level of your bladder. This is at about the level of your waist. Keeping the bag below this level will prevent urine from flowing back into your bladder from the tubing and urine bag. Backflow of urine can cause an infection.)

(Secure the catheter and bag. Tape the catheter to your thigh (upper leg). This will prevent the catheter from tugging and possibly being pulled out. If you are in the hospital or are using an overnight bag, use a safety pin to fasten the catheter to the bed sheet or your gown. Make sure the safety pin goes around the catheter tube and not through it. The drainage bag may have hooks to fasten to your bed frame. Do not put the bag on the floor. Leave some slack in the tube so the catheter will not be pulled when you move your leg. If you use a leg bag, tape it to your skin. A leg strap can be used instead of tape. This may help prevent skin problems or sore areas.)

(Place the catheter tubing so it does not kink or loop. Check for kinks. See if the urine tubing is twisted or bent. See if you are lying on the catheter or tubing.Change your position and separate your thighs (upper legs).

1. You could be dehydrated and may need to drink much more fluids, if it is real hot out you may sweat out all of your fluids and thus see not much urine
coming out or if you are vomitting or having diarhea this is another way to become dehydrated.... (try to drink as much as you can to increse the urine output) Drink at least 8 cups of healthy IC liquids each day. Follow your caregiver's advice if you must change the amount of liquid you drink.Keep track of what you take in and what you get out. You can request a hat that fits onto your toilet that measures how much urine you are getting out and record it. There are some times of the day when urine comes out quicker and more plentiful than other times of the day, I dont know the answer for why this happens.

I know you probably don't drink any caffine but if you do and you have a foley, Limit the amount of caffeine in your diet. Caffeine may make you urinate too much and lose too much body fluid. Caffeine may be found in coffee, tea, soda pop, and sports drinks and foods. Try to drink enough if friendly liquid each day, and not just when you feel thirsty.


(It also depends on what size foley catheter they used. The larger, the more urine output you will see. The smaller, the longer it takes for the urine to drain into the foley. There will always be some urine in the bladder even if you have a foly catheter in there becaue it can't possibly drain out all at once soo there is a pooling point. After that pool of urine has been drained, then it leaves room for the next flow to come out. It's kind of like a sand timer, all of the sand can't come out all at once from that tiny hole it has to wait for some of the sand to go down first and this what may be happeing when you lay down.)


2.There could be a plug of some sort blocking the urine output from the foley (this can be due to blood clots, puss, air bubbles, mucous plugs, urine calcifications or stones) that could all be caught in the foley or the hole where the urine comes out at the tip of the foley. Also if there is something wrong with your kidney function it can compromise how much urine you are makinig or not making. If you were taught how to irrigate your foley you could see if these problems could exist. You could try to irrigate (flush) the catheter if you have been taught how to irrigate catheters. If you have resistance with irrigation do not push it. Just call the doctor imediately!


3. There could be a malfuncton in the foley, maybe the balloon that keeps it in was not inflated properly with too much saline or not enough saline

The best thing to do is ask another urologist or doctor why a foley would NOT drain while laying down. I can't think of any more reasons at the moment. I am sorry I did not catch this post sooner, none the less I still think about you for your future if you even have to have one again, you may know some answers as to what may be happening. But above all, call your doctor when you have questions and concerns regarding urine output. It's a serious matter and not to be taken lightly.

HUGS :grouphug:

Kara Lynn:cat:

ChrissySunshine
05-31-2006, 06:14 PM
Foley's out now....still retaining terribly, but going.

Kara...some great suggestions. I did have a night bag on, it was kept below my waist at all times on a hook near my bed and under coffee table.

The SECURING of the cath...I LEARNED...very important!

I also LEARNED how hydrated I need to be...a little more so with a foley. The last day, it was coming out all blood in the am., then looked thick even with blood, I got scared as h*** and started drinking TONS of water (that's all I drink)....it cleared it right up! I couldn't believe it, right before my eyes, thick blood, then urine with small clots, then CLEAR urine....I was so excited!!

There may have been a blockage from a little clot from something.....it's just weird then that I could bend over and get some out...

What I'm really, really afraid of now....(specially that I'm still having trouble)....is that my fibroids have grown. They WERE real huge and the stupid Uro said it was impossible to affect my bladder that way, but maybe so. Maybe the fibroids have gotten so large they really CAN press on your bladder :confused: . Kinda makes sense to me. I go for pelvic US next week to check the size of them.....I hope that's not what's causing this increased retention...:(

Rita
06-01-2006, 04:13 AM
:help: Since this is about foley cathater I hope I'm posting in the right place.To make a long story short, after having IC for 15 yrs my bladder is very small because of scar tissue. I have to void as much as fifty times in a 24hr. period. Next week I'm scheduled for a heart cathaterization. That means laying still for a long period of time depending what they need to do.Can someone give me advice about what type of cathater should be used(size) and because pain in my uthera is really bad should lidacaine gel be used when they insert it? any advice would be greaty appreciated Rita

ChrissySunshine
06-01-2006, 06:31 AM
Hi Rita, I don't have tooo much experience with these (THANK GOD), just my recent one.

I would DEFINITELY ask for the Lidocaine jelly...OMG...soothes the pain that the meds just can't touch. It's short lasting, but it helps ALOT!

I really think I just had some sort of freak thing. I'm still having trouble real bad, and I'm drinking tons of water...helps to push the urine out. I don't think everyone who lays down has trouble draining with a foley.....just think, they use bed bags on comatose patients....no one has to go and stand them up, and wiggle them around just get the foley to drain!!! I really think my bladder is just being "squished", that's what it feels like any way. I have a slight prolapse, but nothing out of the ordinary (so they SAY anyway).

I know only a little bit on the sizes....I know the pedi cath FELT great, but took a long time to drain...I didn't care at all, but in the OR, they might want to put a larger one in. The first one I had was 14F, and the second one was a 16F. I didn't know when I got the second one, that she was using a different size. The larger one DEFINITELY HURT MORE!!! I have 14's at home in case of emergency now.

I hope that helps you some. Good luck with your procedure next week!

blackcat25
06-01-2006, 07:46 AM
Hi. I am no expert but I've had quite a lot of experience of catheters (far too much for one lifetime!:toilet: :toilet:) If you have pain in your urethra then it is definitely best to ask for lidocaine gel. Also I have found that it is best to use the smallest size catheter possible: 10 or 12 may be suitable. I have also found that it can be difficult to get catheters to drain pr)operly when lying down, usually because I end up rolling over in my sleep and lying on the tube or kinking it. Hope the procedure goes well Rita.
Hugs
Blackcat:cat:

Rita
06-01-2006, 11:26 AM
:angel: Thank you so much for the quick reply. ChrissySunshine and Blackcat
I really appreciate you helpful suggestions. Down here in "slower lower Delaware ". they don"t know much about IC. Your prayers will be much appreciated when I have the procedure. Hope you both have pain-free days !(HUGS) Rita