In hospital again

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CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 10/19/2011 6:26 AM (GMT -6)   
Hi everyone. Well... I was released from hospital Tuesday last week and it lasted such a long time. I wasn't doing well at all, getting horrendous pain, nausea and vomiting whenever I try to eat, so first thing Monday I saw my GP and also rang and left a message for my GI doctor. He admitted me again on Monday afternoon.

Plan was to put the NJ tube in on Tuesday morning. They knocked me out, then found that the do scope was too big to use on me. So no tube. Last night my GI spoke to a radiology doctor who assured him that he was experienced in placing both NG and NJ tubes under fluoroscopy. They took me down to radiology this morning to put the tube in, radiology doc says hang on, never done an NJ tube before, not happy trying now. So still no tube.

Meanwhile, dietician comes in, LOOKS AT ME, says "I assume the tube is in place and ready to go?" Ummm? So I told her it was and it was invisible smilewinkgrin she picked up her things and walks out again. I've met her before, didn't like her then, there's no way I'm going to deal with her now...stupid twit of a woman...how can you miss the fact that someone doesn't have a nasal tube in place? Asked my GI tonight if there were other dietitians in the hospital because every time this one opened her mouth I felt like punching her. He said he'd find out and that he'd never spoken to this one, but now he'd not be able to because all he'd be able to think was "Laura wants to punch you so I don't like you". At least he's supportive.

Plan now is to try to do it under fluoroscopy tomorrow, but I'm really worried. I've had a face flare with my CRPS, and I'm not sure how easy or will be given that I broke my nose last year. If it can't be placed tomorrow they will take me to the hospital across the road (bigger, more facilities) and place under GA via a scope.

Pain is still rubbish...CRPS is flaring and my back isn't healing, but I'm on morphine and Oxy while I'm in here and I think it's controlling as well as anything is going to.

Will see what happens...
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/19/2011 8:18 AM (GMT -6)   
(((Laura))) I hope they can get the tube in today and start to get you some nutrition. And I really hope they can figure something out that is a longer-term solution to these gastroparesis problems. And I really hope they find you a different nutritionist!
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

Mysti
Regular Member


Date Joined Jul 2011
Total Posts : 101
   Posted 10/19/2011 10:47 AM (GMT -6)   
Laura,
Oh wow, I am so sorry for what you are going through. Your issues make me feel guilty for complaining about mine. I'm glad you are able to get to this forum and talk to us...at least venting might help, if only just a wee bit. And go ahead and "virtual" punch that dietician in the mouth right here! ###POW!!!### I will do it with you! I hope the hospital does have more than one. It's important to be able to trust the members of your medical team.

I was just wondering if they have discussed the option of a PEG tube for your nutrition. I don't know whether you need long-term nutritional support or it's just for the short-term, but a PEG tube is inserted directly into the abdomen through a very small incision. Then a little "button" is placed in the hole to cover it when not in use. The feeding tube connects directly to this site and the nutrition is delivered. I think most patients have found the PEG tube more comfortable than the NG tube. But then again, it is designed for long-term use....or if there is difficulty in placing the NG tube nasally. You may be familiar with this route, but just wanted to bring it up.

Laura, I hope you get some much needed relief very soon. Please know that we are all pulling for you here, so keep in touch when you can.
DDD, 3 bulging lumbar discs, bone spurs, facet joint arthrosis/sclerosis, osteoarthritis, possible fibromyalgia (my dr's are telling me that I "most likely" have fibro but won't actually diagnose it...)

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 10/19/2011 11:15 AM (GMT -6)   
I had the dual feeding tube placed after my surgery to repair a hole in my esophagus. Only used the side that was in my small intestine and had to wait a month before they would put the button on. I had about 8 inches or so of the tube hanging in the mean time. Wasn't a big deal though and was a lot better than the NG type I had before it.


Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

Chartreux
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Date Joined Aug 2006
Total Posts : 9664
   Posted 10/19/2011 1:14 PM (GMT -6)   
Sure hope they can do something soon...
Hope your feeling better soon, many Prayers and well wishes to you....
I hope your doctor can get another dietician to you one that will help...
Thinking of you and hoping your better each day...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/19/2011 3:39 PM (GMT -6)   
Cheers guys.

Mysti, my gastroparesis is very chronic, but the tube is only planned as a temporary nutritional support... We're hoping that this is a flare up as against another deterioration, and that a couple of weeks with an NJ will rest my stomach and bring my nutrition up enough to hopefully settle things down a bit.

We've talked about a PEJ, but the problem is my SCS and pump sit on my abdomen as well and with me not healing well we felt there would be a high infection risk - so as long as I'm not in real strife, or having to have an NJ for months like last time, I'm not looking at it as a serious option. I've also got some body image issues relating to my pump and SCS that have developed since I sick - fairly mild, but the thought of having something implanted and actually sticking out makes me feel physically sick :(

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 10/19/2011 5:57 PM (GMT -6)   
Oh Laura I'm so sorry you had to be admitted again. Hopefully they can get the NJ tube in tomorrow, and you can get better really soon. Bless your heart.

I will be praying for you.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

sore42long
Regular Member


Date Joined Apr 2011
Total Posts : 235
   Posted 10/19/2011 6:54 PM (GMT -6)   
Hi Laura,I do hope you get that tube soon,I realize being dehydrated and lack of nutrition is so hard on the body.I'm glad you have agood DR.I find it funny that you think the dietician is such a twitt,Ialso found most dieticians I have met to be atotal waste of time ,I think the problem is they do have a clue about pain.I do hope this is just a flareup and it will settledown in time .Till then get lots of rest and Ihope your home soon .take care from Michele

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 10/19/2011 7:12 PM (GMT -6)   
Laura-
If they can't get the NJ tube in have they thought about TPN as an option or would a PICC line be difficult to heal from also?

Hope things get better soon.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/21/2011 4:02 AM (GMT -6)   
Bill, PICC line is the reason I now have such severe CRPS in my right arm - they hit nerves twice putting one in... :(

They finally got an NJ in yesterday, caused a huge CRPS flare in my face and I had to make em take it out again - my GI is away now and so is my PM, and the nurses weren't having a bar of it, nor was the doc on call who said that CRPS only affects the limbs. After the nurses gave me maxolon, which I'm allergic too, and left me unconscious on the floor, I discharged myself... Sigh

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/21/2011 5:29 AM (GMT -6)   
Hi Laura, Kathy here, you just let me know the name of the nutritionist, I will punch her in the face for you, I would love to, I need to vent and so punching her in the face would make me feel better also. lol.  But seriously, the nerve of her, how dare her, as if you dont have enough to worry about.  I was thinking of traveling anyway so why not go overseas, what better place to punch someone, then hop back on the plane and we will both be happy, lol.
 
I am sorry you are back in the hospital, you must be sick of that place.  I am glad you discharged yourself, it seems they are doing more harm than good at this point.  I am sure that is not what they are trying to do, but sometimes it makes you wonder huh?
 
Ok sweetie, let me know if you need me to do some strong arm work, I am the person for you, lol.
 
Hang in there luv, it just has to get better, it just has to.  I demand it gets better, well I can only hope the powers that be hear my   prayers.
 
Well young lady, you just keep fighting and know that I am here fighting with you, well, not fighting you, just fighting your CRPS.
 
Take care sweetie,
 
Kathy 
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 10/21/2011 7:27 AM (GMT -6)   
Laura-
I am so sorry this is happening. I can relate to them hitting nerves. I have had 4 PICC lines since 5/09 and had one this past July while I was at my local hospital. They put it in just before the transferred me to a larger hospital for complications 4 months after I had a hole in my esophagus repaired. the hole opened back up. The PICC nurse seemed very nervous and tried to put it in in front of where I had one in. I told her where the other one was, but she didn't listen. She couldn't get it in that vein, so she tried the lower vein with all the nerves on it. WOW! what an intense nerve pain that was. She then put it after where I showed her the other one was and it went it easily. I also had an IV put in the same arm when I first got to the hospital there and he tried to use the vein that goes over the outer wrist bone and hit the nerve going to my ring and pinky finger. So 2 times they hit nerves in the same arm with in 24 hours. I still have nerve pains from both if I move my hand or arm just right.

I second Kathy's idea of venting on that nutritionist.

Praying you get to feeling better soon and find a way to get some nutrition. Have you tried a GERD type diet with bland foods? Sometimes it is easier on your stomach while it's inflamed.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/22/2011 10:34 AM (GMT -6)   
Bill - I went from fairly mild/stable CRPS in my arm, back to full blown, as severe as it comes, within 20 minutes of them hitting those nerves :(

Is the I don't think my diet could be much more bland... usually when I flare like this I can tolerate porridge, but not even dealing with that at the moment. I'm down more than 10kg now.

Kathy - I'll take you up on the offer of strong-arming on the nutritionist. You can do some work on the radiology doc who put the tube in too if you like? I knew he was holding me tightly, and he was hurting me - wouldn't stop and give up when I asked him too - which was the deal I'd made with my GI (who wasn't round to supervise 'cos of having to leave for a conference) - I have BRUISES coming up on my throat and jaw where the guy was holding me.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 10/22/2011 2:25 PM (GMT -6)   
OH MY GOD, what kind of doctor was that, holding you down and bruises to prove for it. Take pictures and report this guy. That is sooooo horrible. What is wrong with some of these doctors??? Would they want to be treeated like that.......
I am so sorry you are having to go thru all this Laura. Sounds like an awful nightmare. How is your pain? are you able to eat anything at the moment? I wish there was something I could do to help you. What are in the plans now to help you? I hope your docs come back soon.

I hope you are able to get some much need rest. One hour at a time.......

Soft hugs
Suzane

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 10/23/2011 2:26 AM (GMT -6)   
Dear CRPS:

Have you ever heard of Enterra therapy for your gastroparesis? It's basically the same device as the scs, but it is implanted in your stomach & it stimulates the stomach to work properly. You can look it up on the Medtronics website.

I have gastroparesis as well, & I was hospitalized constantly, This device has done wonders for me. I have an scs & intrathecal pump as well, & they do not interfere with each other. You may have to travel to find a doctor that does it, but it is so worth it. I have not been hospitalized for the gastroparesis since having it implanted.

Feel better.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 10/24/2011 3:57 PM (GMT -6)   
How have you been the last couple days Laura?? I hope you are ok.

Suzane

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 10/25/2011 12:28 AM (GMT -6)   
Hi bluejet - yes, I've heard of it, and yes it's a consideration, though not one either I or my GI are keen on - again because of the healing issues and also because of interference with my SCS. Where is your SCS battery located? Mine is on my abdomen. My GI hasn't given a positive view of results with them either - and I worry about the fact that you can't have a trial with them as you can with an SCS.

Suzane, I'm struggling on. My body seems determined to throw up obstacles wherever it can. On top of everything else, I've had what my GP and I thought was a UTI. He took some urine samples for culture and then started me on antibiotics, which have done absolutely nothing. Results came back today with no detectable infection, but a lot of blood. So now more urine tests to check again and if there is still blood, more tests to work out what is bleeding and why.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 10/25/2011 6:50 PM (GMT -6)   
Oh my gosh Laura I'm so sorry that you have yet another issue. I'll be praying that the blood will have disappeared from your urine. Keep plugging along my friend. I sure hope you feel better really soon. Are you able to hold any food down now? I sure hope so. I agree you need to take pictures and bring up charges for those bruises you have. Take care.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/26/2011 12:13 AM (GMT -6)   
Hello Laura! I have not been able to keep up with all of your latest issues this last week, but wanted you to know I'm still thinking about you,
and praying you will find a solution soon to your problems. I really don't know how you do it on a daily basis! Do you have all the Dr's and nurses whipped into shape yet? smilewinkgrin

Take care, and I will try to keep one eye open for your updates. wink

SE wink
Moderator Chronic Pain Forum

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Trudy2
Regular Member


Date Joined Dec 2010
Total Posts : 213
   Posted 10/26/2011 7:25 AM (GMT -6)   
Laura,

I so sympathize with you on the doctor holding you down.

When I was in for my bone marrow transplant, I always had to have two central lines - they had to have several ports available at all times. These were Hicks, or Hickman lines. Anyway, I had no immune system due to the drastic chemo and I kept getting infections in the lines and they would have to remove them and replace them.

This was always done in an operating room under twilight anesthesia. So I was always awake for every procedure. TWICE I had the same doctor remove and replace a central line and bruise me horribly. The last time, he kept pressure and squeezing on the site of the line removal and I kept telling him that he was hurting me terribly, but he kept on and told me - I have to stop the bleeding. I don't know how serious it was. But by the time I got back to my room, my oncology nurse immediately came to check on me and I asked for something for pain right away. She asked me the pain level and I basically screamed at her that it was a 25 - now can I get something?? She called my oncology docs in and I made a complaint against the other doctor. There were bruises on me for days and the bruises were all purple - but I was basically purple from bruising everywhere anyway. I have no idea what happened with the doctor that did the central lines - but I never had to face him again.

After hearing of your experiences with the nurses, I am glad that you dismissed yourself from the hospital. Obviously they were not helping you at all and were dismissing everything that you said. I hope that you get your problems under control - I will be praying for you!

Trudy
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips, hypoxia due to sleep apnea and new problems with my lungs. Have had 2 abnormal CT scans.

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/28/2011 11:12 AM (GMT -6)   
Laura,

How are you doing? Are you tolerating any more food? Have you been able to keep meds down? Thinking of you.

Heather
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma
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