Worst ER visit ever.

[Earnellzwifey]

Ok liked I have said in other post that I am recently diagnosised but have been having major complications like 6 years of the D's. :yfaint:

I have been having a major flare up for the past few months that have landed my in the ER about 15 times. I basically go at least once a week usually because of dehydration. I drink a 32 oz Gatorade and at least 2 gallons of water a day. yet i get severely dehydrated weekly.

I have been on remicade for nearly a year already due to another disease I have. When my GI confirmed with blood test that I do have Crohn's, he started me on 30 mg prednisone daily with at least enough to last 2 months on that dose. i have a scope on the 20th to check for activity.

Anyway about my ER visit! I was told at the ER last week after complaining about being with the big C for five days and vomiting. Had cxr and cat scan they say no blockage. My GI call the next day and say I do, he said it is mild but did not tell me where.

Today I wake up extremely weak. I was barely able to walked to the bathroom. I slept all day long but woke up often to sweat soaked sheets and clothes. No appetite because my intestines felt like they are ripping apart. this afternoon i jump up having to vomit and it was awefully. A very large amount of green and yellow liquid with chunks of some weird white looking clumps some blood and smelled horribly. To me this was stool that I was vomiting. Also i vomited up last night dinner still undigested. :stinks:

I call my DH and he gets me to the ER ASAP.:sign0085: By the time we get there I am writhing in pain, BP through the roof, and still sweating buckets. The put me in the waiting room until I started vomiting and dry heaving. Once in a room they left me crying in pain and vomiting for atleast an hour. I told them why I was there but yet they just put me in fast track or like the urgent care clinic more than an actual emergency room.

The nurse came in and took blood and started and IV. Got blood all over my sheet and did not even try to clean it up. My DH had to get a towel and try to get it up. :ymad: Finally the DR comes in after my DH have been constantly asking them to help me. at this time i'm having convulsions and unable to talk. He orders a CXR and the usual blood work, CBC, and urinalysis.
Gives me a shot of Dilaudid and Zofran. It did not put a dent in my pain.

He comes in say blood work and x-ray are normal just follow up with my Dr. Monday to get my disease under control. I ask could my partial blockage gotten worse and he not be able to see it on just a x-ray. He said yeah but he was sure i don't have a blockage cause he also looked at the cat scan from the week before. He said I do not have any kind of blockage. I told him my GI said I do, he said my GI is wrong. Gives me another shot of Dilaudid and big shot of Prednisone and sent me packing. A script for lortab 5, fenergan, and Cipro.

Another little side not on me, I have neurogenic bladder due to inoperable brain tumors that growing very slowly and I frequently get elevated spinal fluid on my brain needing a spinal tap to drain off the excess fluid. Because of this I have to self cath 4 times a day. I keep UTI's I have had them non-stop for about 8 years now. That's part of the reason I am already on Remicade.

The ER Dr tell me that my pain is from a UTI. I have had severe kidney infections several times over the years. True the pain of a raging kidney infection is horrible the way I feel right now is 10x's worse.

Needless to say I am now back home still in pain self medicating myself with a lot of medicinal MJ and Vodka. I know this might not be the best solution to my pain but it will get me through the night. If I get any worse i'm calling 911. I have to go back to the same hospital because that is the so called best one in our area. Like for at least 100 miles. They are suppose to be a level 1 trauma center. :yfrown:

Well thats my VENT for the night. I just feel so outraged at them. I am what they would calla frequent flyer but if you look at my medical record you would wonder how I am still alive. My GP cant believe that I can function at the level I do, I have a really high tolerance for pain. I was not suppose to even live to the age of 5, but that is another story about how and why. i was deemed permanently disable after a 3 year fight this past February. I am only 34 and worked since I was 16. I have lost all my teeth except 5 in the back.

I do have a question. To any of you out there that have had blockages. Have any of you be told that you did not have a blockage based on a x-ray and really did have one?

Thanks for listening:rosette2:

 

[David]

Ugh, I'm so sorry I understand your outrage.

I don't have an answer to the blockage question. You may want to ask that in a separate thread in the General IBD forum.

*hugs*

 

[Ckt]

Hello and I'm so sorry you are going through so much. The er can be a frustrating place for sure. I'm also a frequent flyer and until recently, wasn't really taken seriously even though I have had several resections for bowel obstructions. It's demoralizing! I finally decided to go to a different er to get another viewpoint and it was like night and day! They ended up admitting me after a cat scan showed inflammation in my ileum.
I think you can have partial obstructions and even intermittent ones that may not show clearly on X-rays. A plain x ray only shows a severe obstruction I think. Cat scans are more reliable in this. But for me, because of so many surgeries, I get adhesions and bowel that kinks then clears up until it completely obstructs.
Even though your preferred hospital is a level I trauma center, do you have other options?sometimes getting a new opinion is really worth it. The community hospital or smaller ones have the luxury of taking more time with you IMHO.
I love university centers but if it isnt working for you,look elsewhere.
Sorry this is long!also..partial obstructive symptoms for me include: waves of sharp pain, abdominal distention, no stool or gas passing for some time..the. A blow out when things get through.

 

[lisakuney]

If you can collaborate with your GI on a letter that you can carry with you outlining what he would like to take place if you go to the ER, you may be less frustrated. You might also insist that the ER staff call your GI to at least phone consult with the ER doc. I hate that you had such a frustrating experience.

 

[Earnellzwifey]

I think the Er dr felt bad when my culture came back. He actually called me himself to say that I had a horrible kidney infection and needed a serious follow up with urologist. I hope he stop taking out his bad days on his patients before he end up killing someone.

 

[DougUte]

I would really recommend a different hospital. Once an er has labeled you a frequent flyer they don't take you seriously.

 

[Earnellzwifey]

Thanks Doug, I ended up getting admitted this past Monday and I am still here. They have me on IV antibiotics to kill ESBL E.Coli which is antibiotic resistant. I have a catheter in place and they found out that I put out way to much urine (3 days worth in 12 hours) it is now on file why I was getting dehydrated weekly. I also told the staff about my ER treatment and he has been reported and they will be looking into his treatment of me. Sorry to say but this is the best hospital within a 100 miles of me but I hope that now with the new info things will get better.

 

[Ckt]

That's the only way we can change things not only for ourselves but for others who deserve appropriate care!

 

[Earnellzwifey]

You are so right CKT. I can say that all the staff that I have encountered since being admitted have been really nice to me so they have given me a little bit of faith back in the medical community.

 

[DougUte]

I am so glad you got taken seriously. I really hate the frequent flyer tag. Don't they realize we really don't love the ER? We would rather be anywhere else.

 

[Earnellzwifey]

And for me mine always seem to end up getting bad on the weekend. Like I dont have something better to do on a saturday than sit in the ER looking at them fight for a vein to put a IV in.:voodoo:

 

[Ckt]

I know right?! And listen..if you're a frequent flyer in one place they judge you in another state even!i came to Chicago and went straight to the er..having about passed out on two flights..I got reamed out by the er doctor who said leave..put my clothes on and he said..no stay..I said..really?!! You want to make up your mind champ?!! It boggles the imagination!
I haven't practiced nursing in ten year and to be honest, I dot know now if I want to..I'm not too happy with the way our system works. I'm sorry I'm not pooling blood in your er sister..but I AM sick when I go. I hate it):

 

[Earnellzwifey]

ha ha i know what you mean. If you don't come in missing a leg or bullet in your head then you must not be really sick. I have noticed that here if you start vomiting in the waiting room they will take you back a little quicker. I am one if those really noisy vomiting people uke_r:, that got me straight to a room this last time.

 

[Ckt]

Oh that's funny!you can imagine the whole waiting room having reflexive vomiting!!i do hole you get feeling better quickly!

 

[Earnellzwifey]

I just got finish with my remicade infusion so I hope that will get me on the fast track out of here. utahere:

 

[Ihurt]

Wow, I am suprised that ANY hospital in Chicago would tell you to leave. They are HUGE money grabbers here. In fact it is usually the opposite. They would love for you to stay and have every imaginable test they can charge your insurance for!! What hospital did you go to??

I know right?! And listen..if you're a frequent flyer in one place they judge you in another state even!i came to Chicago and went straight to the er..having about passed out on two flights..I got reamed out by the er doctor who said leave..put my clothes on and he said..no stay..I said..really?!! You want to make up your mind champ?!! It boggles the imagination!
I haven't practiced nursing in ten year and to be honest, I dot know now if I want to..I'm not too happy with the way our system works. I'm sorry I'm not pooling blood in your er sister..but I AM sick when I go. I hate it):

 

[Ihurt]

Ooh you poor thing. I am so sorry you are dealing with all this stuff. I also have a ton of health issues as well. Not yet dx with crohns, still in the midst of trying to find out what is wrong. But I do have interstitial cystitis which is a nasty bladder disease. I also get chronic UTI's. I have had to be on a low dose antibiotic daily for the last 4 and half years just to keep them at bay. I cannot even imagine how you can stand a catheter in place. I would not be able to have a catheter like that, it would kill my bladder. If at all possible, try and have them take it out as soon as they can as catheters are a HUGE cause of UTI's. I hope you feel better and can get out of there real soon.
((((BIG)))) hugs to you!!

Thanks Doug, I ended up getting admitted this past Monday and I am still here. They have me on IV antibiotics to kill ESBL E.Coli which is antibiotic resistant. I have a catheter in place and they found out that I put out way to much urine (3 days worth in 12 hours) it is now on file why I was getting dehydrated weekly. I also told the staff about my ER treatment and he has been reported and they will be looking into his treatment of me. Sorry to say but this is the best hospital within a 100 miles of me but I hope that now with the new info things will get better.

 

[Earnellzwifey]

Hello IHURT, I have also been fighting the UTI's for about 6 years, not and even on low dose keflex (I am allergic to most antibiotics) I still would get them. I might get 2 normal urinalysis out of 100, literally.

the foley that I have named Felix :lol2: might be a new friend for me. I have always went tee tee like 20 or more times a day and usally had the big D every time I go pee. So you can imagine how much time i spend in the bathroom.oo:

I have been intermittingly cathing 4 x a day because I retain urine and they thought that is why I keep the infections. Until Felix actually showed that my urine output is about 6 times more than normal (other words what most pee in 6 days I pee in 1 day). This shows that my kidneys are not retaining fluid and that is why I was getting dehydrated weekly needing IV fluids. :yfaint:

There is no way to fix it so at least with Felix I only have to empty him every 3 or 4 hours, much better than in the bathroom every 30 mins or so. I also can use this diagnosis to finally get a PICC line put in so that I can give myself IV fluid at home instead of weekly visits to the ER.:thumleft:

I also must say that since Felix has been in place my bladder spasms have gotten much better. I think it is because my bladder is finally getting a little rest.:ytongue:

 

[Ihurt]

Oh Wow, sorry you are having to deal with all this. I can understand what you mean about having to pee a lot. With IC, when it is bad, sometimes you have to pee every 10 to 20 minutes, it sucks.

I understand about the catherter, I guess if it is not bothering you or causing you more pain, then like you said, at least you have a break from all that peeing. I hope they can get the diarhha under control too. That is rough. I know I have a urologist who told me I cannot get diarahea. He said that this can cause UTI's for women. I have to literally bottle wash or shower after every BM just to stay clean so to avoid the stupid urinary infections. It is crazy what we women have to go through huh?

I am glad that they found your problem out and now you can treat yourself at home instead of having to run to the ER all the time. That will be a lot better for you. I pray they get this UTI under control and you can go home soon..

Hello IHURT, I have also been fighting the UTI's for about 6 years, not and even on low dose keflex (I am allergic to most antibiotics) I still would get them. I might get 2 normal urinalysis out of 100, literally.

the foley that I have named Felix :lol2: might be a new friend for me. I have always went tee tee like 20 or more times a day and usally had the big D every time I go pee. So you can imagine how much time i spend in the bathroom.oo:

I have been intermittingly cathing 4 x a day because I retain urine and they thought that is why I keep the infections. Until Felix actually showed that my urine output is about 6 times more than normal (other words what most pee in 6 days I pee in 1 day). This shows that my kidneys are not retaining fluid and that is why I was getting dehydrated weekly needing IV fluids. :yfaint:

There is no way to fix it so at least with Felix I only have to empty him every 3 or 4 hours, much better than in the bathroom every 30 mins or so. I also can use this diagnosis to finally get a PICC line put in so that I can give myself IV fluid at home instead of weekly visits to the ER.:thumleft:

I also must say that since Felix has been in place my bladder spasms have gotten much better. I think it is because my bladder is finally getting a little rest.:ytongue: