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Posted 7/22/2011 7:18 PM (GMT 0)
Links to other threads:

Thread 2 : https://www.healingwell.com/community/default.aspx?f=17&m=2167297

Thread 3: https://www.healingwell.com/community/default.aspx?f=17&m=2161378

Mr Dawg is out for a couple days, so I will be relaying the facebook messages from Nanners.

From Gail

  I spoke with the head RN of all the nurses yesterday and explained that everytime we have a plan to try, they then chg docs. So I think she is looking into it. Luckily right now my Gi is the one on call. The doc that chgs weekly was trying ...to get me off IV meds and my Gi shut him down right down. I think my gi is still trying to figure what direction to go. I am actually glad he is fighting for me. Usually he always stays within the box, but seems to be looking for other options now. Thanks for helping out Mike, and have a good trip Tommy!

Post Edited By Moderator (stkitt) : 7/25/2011 5:14:03 PM (GMT-6)

Posted 7/22/2011 7:27 PM (GMT 0)
We really should just have one thread for updates, this is getting hard to keep track of : )
Posted 7/22/2011 10:04 PM (GMT 0)
You're right and I had thought about that, but I also wanted to make sure people knew it was a fresh update.  If I was a mod I would have tied them altogether.
Posted 7/23/2011 5:42 AM (GMT 0)
More updates from Nanners!  Each paragraph is a separate entry throughout the day today.

4:!6pm  Ok here's the latest. The on call doc with a "God complex" came in changing my meds from iv to oral, was talking sending me home as early as tomorrow. Naturally I was just sitting there stunned. The nurse was even in the room and she could see how this doc was just trying to get me out of here asap. Luckily my GI came in and made me feel much better. He said he is advising the arrogant doc and the GI on call that I am not to be released until certain criteria is met first. I must be able to eat and keep it down, my pain is manageable, and that the white blood count is back down. So I feel a little bit better now. Though my gi sometimes doesnt look @ the big picture, he really came thru for me 2day. Hugs!

4:21pm  Oh by the way, no they can't see the adhesions & scar tissue on the scopes or scans. We dont want to go the surgical route just yet, but...GI says one day the decision may be taken out of our hands. I am improving, but its just going to take a lil time. Hugs!

 

8:41pm  Sitting here in tears and in pain. Freaking doctor chg'd my pain meds from 1 mg Dialaudid every 3 hrs to 2 mg every 8 hrs orally. I can have 1 percoset every 6 hrs. I take Percoset at home for my osteo & fibro pain. Taking it here for this adhesion pain every 8 hrs is a freaking joke. I am about to check out against medical advice. I am just sitting here hurting, I can suffer by myself @ home. I GIVE!! Sorry for venting but I am hurting and getting no help:(

Posted 7/23/2011 7:25 AM (GMT 0)
What I would do is call my GI and let him know that his direct orders were superseded again. I really can't understand why they feel the need to get you off the IV. Everyone KNOWS that taking pills is much less effective whether they are painkillers or antibiotics. This is so disturbing to me.

I think you have to call the GI doc that is on duty and tell him in no uncertain terms the amount of pain you are in.
Make sure he knows the number of surgeries you have had and that you are no stranger to pain. And that the pain you are having now is akin to some of the worst pain you have ever had.
Also make him aware of your better than layman knowledge of the GI tract. You are on a GI ward??
I'm assuming that they are giving you cipro and flagyl for the high white cell count??

If the hospital continues to ignore the level of pain you are in I would file a complaint with the social worker there. Get copies of the complaint.
I had to file one of those back in October when I was in the hospital for Pericarditis and had a terrible Migraine.. If it weren't for my b/f coming with my meds from home I don't know what I would have done. The doc in charge of the wing was also one of those God types. He wouldn't even let me have caffeine tea but finally let me have a fentanyl patch. Fairly useless for the pain I was in.

I know you feel awful and not knowing what is wrong can be also frustrating.. pain is even worse.. but please do not leave the hospital. Call your GI and leave a message no matter what time it is and tell him you are in great pain and they are denying you IV pain meds again. I think the level of dilaudid they were giving you IV wasn't enough anyway. I was hooked up 24/7 to an A line and whenever my BP started going up (from pain) they ran in with more dilaudid.

I'm going in on Wednesday for my first resection surgery. You have been a great source of encouragement to me over this past year and a half. Please stand up for yourself or have your husband do the yelling and demanding. I will keep you in my thoughts and hope that you get the care that you need
NY VEGGIE
Posted 7/23/2011 7:27 AM (GMT 0)
Hi Gail,
Sorry you are having trouble with all the doctors at the hospital. none
should be changing any of your meds except your Gi doctor.

Hugs, teddybearweiser
Posted 7/23/2011 7:34 AM (GMT 0)
Oh, Gail. This whole experience is turning into a ridiculous farce. You shouldn't have to put up with this, or to endure so much pain with so little help and sympathy.

I don't know what to say, except to send you lots of hugs, and the sympathy you're not getting from your care team :-(.

Ivy.

ps. Do you have patient advocates in your hospitals there? It might be time to talk to him / her...
Posted 7/23/2011 12:17 PM (GMT 0)
Is there some type of patient advocate you can contact? Can you get a friendly lawyer to fire a warning shot (letter) to the hospital? In any event I remain hopeful that your condition will resolve itself and you can go home in COMFORT.
Posted 7/23/2011 12:44 PM (GMT 0)
Gail - I am so sorry you are going thru all of this pain. Your personal Gi should overrule that idiot GI on call. I don't understand why he is allowed to change your orders willy nilly.

Do they have a hospitalist at that hospital? They look at the big picture and coordinate care among all the specialists. You definitely need a strong advocate! I know how hard it is to be your own advocate when you are in such pain. Please find someone to help - I agree with bringing in an attorney - if you have any attorney friends, sometimes just the threat is enough!

Please do what you can to stay in the hospital - nothing beats IV pain meds, and it sounds like you are a possible stricture/blockage waiting to happen. Good luck and lots of hugs...

Sudsmom
Posted 7/23/2011 1:43 PM (GMT 0)
When my husband was last in the hospital, a "patient advocate" came to see us. She said that if we had any problems, to get in touch with her. Is there a person like that at the hospital?

Do you think a different hospital is an option? Maybe you can get yourself discharged and just go to a different hospital? I think you should start working through the patient advocate, and start being a little heavy handed with your words. They won't listen to pleas, maybe they'll listen to a few threats (like being sued).

I am so angry for you right now. They should be focussed on getting you better, not on trying to get you home without any recovery! I wish I could do the body switch thing, and put him in your body.

I'm so sorry Gail. I pray you will find your way to good health again soon, despite the hospital and doctors.

((Gentle Hugs))
PV
Posted 7/23/2011 8:34 PM (GMT 0)
more from Gail, it is partially a response to Zanne about oral meds.

I agree that its time to transition to oral meds, but to go from every 3 hrs and change to every 8 is ridiculous. I was in soo much pain. The nurses are saying I need to explain to him that I have no issues with taking the oral meds, but he cant make it so far apart. Will keep u posted. Hugs!

Posted 7/23/2011 10:02 PM (GMT 0)
Absolutely unacceptable! That is what I'd be telling the doctors on call. It might be time to get in touch with social services in the hospital and request a patient advocate who might have more pull than the "lowly" patient. How is she supposed to get better when she isn't being taken seriously. And why can't the nursing staff approach the doctors? Shouldn't they be noting this in her chart? Sorry to go off, but the treatment she is getting is aggravating and uncalled for.

Gail, Hang in there -- you know how tough crohnies are! And we are all pulling for you.
Posted 7/24/2011 12:44 AM (GMT 0)
Why aren't the nurses reporting your pain to your doctors, and insisting that they help you?

It seems to me that that's their job... They need to advocate for you, too, instead of just telling you, quietly, what they think should be done...

:-/

Hang in there.

Ivy.
Posted 7/24/2011 3:42 AM (GMT 0)
Possibly things are done differently over there Ivy compared to here. I have a few friends that are Nurses and I know they advocate for patients, and I've had Nurses do that for me in the past. I'm hoping that things improve for you Nanners, you are such a lovely supportive person to everyone here, and it's horrible to hear you're going through such a terrible time.
Posted 7/25/2011 7:23 AM (GMT 0)
Todays FB update from Nanners

 

Omg everytime I eat I get the most painful d. It causes my intestines, side and bottom to hurt sooo bad. All I can do is sob it hurts so bad. They gave me Bentyl. Any other med suggestions? This is sooo painful. HUGS!

 

Could one of you MOD types possibly merge these three threads?

Posted 7/25/2011 11:24 AM (GMT 0)

Gail I am still hoping for a positive change for you.  I only have one other recommendation....have you tried the case management team at your insurance company for an advocate.  I know I talk about this a lot on here, but it seems people don't think of this as an option.  I know a lot of great ex-floor nurses who work at insurance companies now and become great advocates for the patients.

I am hoping you get relief soon.

Posted 7/25/2011 1:02 PM (GMT 0)
mdf34

I saw your message in one of the other threads and I agree with you re maintaining only one thread.  I will see what I can figure out by tonight.

Thanks,

Kitt

Posted 7/25/2011 1:25 PM (GMT 0)
cool. I put the same message in all 3 threads to identify them.

 

Posted 7/25/2011 1:48 PM (GMT 0)
Nanners, for a medication suggestion, Have they had you on IV steroids yet? I know your Dr. thinks you are not in a flare but it sure sounds like you are.
I had that same pain during a severe pain, so I can relate. In fact, each time I flare, I get different symptoms and it is never the same.

I also think it may be time to move onto the big guns. My vote would be Prednisone ( if you no longer have an IV) to bridge til a biologic such as Humira or Cimzia kicks in.

Or, you can insist they remove the bad section that is causing you so much pain!



Still praying for you!!!

Post Edited (pmedic) : 7/25/2011 7:55:39 AM (GMT-6)

Posted 7/25/2011 8:27 PM (GMT 0)
We thought that maybe we should stick with this one thread as there are 3 threads on Nanners and people are getting confused as to what the lastest update is. That ok with everyone?

Thanks
Posted 7/25/2011 11:04 PM (GMT 0)
Talking to Gail.  She is planning to go home tomorrow if all goes well.  She is tolarating oral pain meds well, oral meds every 6 hours.  She sounds good and ready to go home.

Looks like she is also tolerating a soft lactulose diet. She is hoping to be online as early as tomorrow sometime.

I will let her fill you in on everything. 

Kindly,

Kitt

 

Posted 7/25/2011 11:21 PM (GMT 0)
This is the current open thread as of 6:21 PM CDT - 7/25/2011
Posted 7/26/2011 1:24 AM (GMT 0)
what hosp. is nanners in, I want to visit, we live in same community.

AG
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