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dehydration diarrhea

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#1 miocean

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Posted 17 May 2015 - 12:21 PM

A month ago, while on vacation, I had a bad case of food poisoning with violent vomiting and diarrhea for 10 hours straight. Since I was away from home and petrified of hospitals I didn't seek medical care but hydrated myself and rested. A week later I returned home and had appointments with two pulmonologists and my cardiologist. I told them of my experience but they didn't seem concerned. I had my regular labs drawn for my kidney transplant and saw my nephrologist. My creatine was a little high which he attributed to the diarrhea which was still going on. He referred me to a gastroenterologist the next day, my labs were redrawn and stool samples done.

 

The diarrhea was getting worse and I was having trouble eating and drinking. I was feeling very weak so I called my nephrologist and he told me I needed inpatient treatment and to go to the ER and be admitted so I have been in the hospital for the past 4 days. My creatine was even higher. They gave me IV fluids, took more stool samples, and did a partial colonoscopy with biopsies for cmv virus and colitis. Everything is coming back negative, which is good but doesn't give an answer as to the diarrhea. My labs are great now.

 

It is possible it is one of my anti-rejection drugs that is causing the diarrhea.  I have suffered with it since the transplant and have had GI issues most of my life. My doctor has cut it back, added some other medications to control the diarrhea and is calling my transplant center for a consult tomorrow. When they get the diarrhea under control I can be released.

 

My anxiety about being in a hospital hasn't been too bad because I've been in a lovely private isolation room. Tonight the nurse came in and told me they needed the room for another patient and they wanted to move me. I asked if I had to and she said I could refuse. I started having a panic attack while I was thinking about it. After careful consideration I told her I was concerned that the health issues of having another patient in the room with me could be dangerous for me because I am highly immune suppressed and I want to stay here. So I get to stay! Now if the diarrhea with stop I will be able to go home!

 

miocean


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#2 Shelley Ensz

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Posted 17 May 2015 - 02:31 PM

Hi Miocean,

 

I'm very sorry to hear you are in the hospital. :sick2:

 

I hope you improve enough to get home soon!

 

I'm sending some extra flowers your way!  :flowers: :flowers: :flowers:

 

But in the meantime, please remember to haul out your camera and take lots of photos for your ISN Medical Photos collection. We can never have too many pictures of yucky hospital equipment!   I actually get frustrated when they are taking blood and I can't figure out how to shoot one-handed, and I'm pretty sure we're kindred sisters when it comes to artistic and photographic opportunities! :emoticons-yes:

More seriously, that's fantastic that you advocated for keeping your private room. That was smart and sensible and downright necessary.  Good going!!


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#3 quiltfairy

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Posted 17 May 2015 - 02:34 PM

Miocean, I am so sorry to here you are so ill. I wish for you a full and speedy recovery :balloons:   :hug-group:    :sickly: :flowers:

I hope all of this makes you feel better. Balloons to lift your spirit, a group hug just to let you know we care, and me feeling blue because you are in the hospital and of course don't forget the flowers.



#4 Joelf

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Posted 17 May 2015 - 07:59 PM

Hi Miocean,

 

I'm so sorry to hear that you've been in the wars and had such an awful time with diarrhea. Unfortunately, with Scleroderma, things are more complicated than a lot of medical staff realise and I'm so pleased that you were able to keep your private room.

 

Being hospitalised is never a pleasant experience and I hope you improve and feel better very soon.

 

Here's a few more flowers for you and another group hug.

 

:flowers: :hug-group:

 

Best wishes,


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#5 Buttons

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Posted 17 May 2015 - 08:05 PM

Hi miocean

 

Sorry to hear your so unwell with diarrhoea and that they soon get it sorted so you can go home. 

 

Take Care 

Buttons

 

:flowers:



#6 Margaret

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Posted 18 May 2015 - 12:46 AM

Miocean,

 

Oh my!  I will keep you in my thoughts for a quick recovery.  I had to reread your post because, after the first time, I *thought* it was 10 DAYS of violent vomiting and diarrhea, making me wonder, where did you go on vacation?!?!?   :lol: :lol:  

 

Do take care and try to get some needed rest, especially since hospitals are sooooooooo quiet!!

 

Take care Everyone,

 

Margaret

Mom to Gareth,  27 years old, DS/ASD



#7 miocean

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Posted 18 May 2015 - 10:50 AM

Thanks for all your kind thoughts. Shelley, I never thought of taking pictures, I guess I just felt too sick. Now all the medical things have ben moved out of my room for other patients.

 

I have been playing the waiting game and basically sitting around. The last stool cultures are not back yet. The GI doctor said one of them is to test and see if my intestines have been damaged by the scleroderma. I asked how they could tell that from a stool sample and he said it has to do with how the fat is being absorbed. If the lining of the intestine is damaged, it will show up that way. I feel a lot better and have no more diarrhea. They want to keep me here one more day. I feel like I am wasting space and time but know they want to be sure there are no problems before sending me home.

 

Margaret, I was in Florida when I got the food poisoning. All my trips to Mexico I have been fine so that tells you it could happen anywhere.

 

miocean


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#8 Joelf

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Posted 18 May 2015 - 08:02 PM

Hi Miocean,

I'm glad to hear that you're not longer suffering with diarrhea; it's very unpleasant and debilitating, especially when you're got other GI problems to contend with.

I hope you'll keep on improving and will soon be home.

Best wishes,

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#9 judyt

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Posted 19 May 2015 - 12:15 AM

Hi mio,

 

Sorry to hear of your ordeal, but it sounds as if it is on its way out now.

 

I haven't been here very much recently because I have had an ordeal which wasn't so different from yours.   Because I have Rheumatic Heart Disease and had some Pulmonary Hypertension because of a leaking Mitral Valve, the decision was made to either repair or repkace the valve in the hope that I would be less breathless.

 

I was admitted on 14 April for surgery on 15th.   I was told to expect to be in for 4 to 6 days   --   3 weeks later I was finally discharged.    The valve replacement went well and now I have a wired up breastbone which aches - of course - but as well I have to recover from a dose of Aspirated Deep Lobe Pneumonia.   I wasn't getting better as expected and about 24th or 25th April I was returned to the High Dependency Unit and started on treatment for the Pneumonia.

 

When the aspiration happened I have no idea but can't help but feel that it was due in part to the nursing staff not having a clue how to handle Scleroderma.

 

Anyway all's well that ends more or less well.   I suffered through about 8 days of diahorrea which is for me a major thing because I am totally fecally incontinent.   I was in adult nappies (diapers in your language) and I don't know how many times my bottom was wiped by others.   I was using a walker to get to the bathroom so it was a major effort to get me out of bed and into the bathroom in a timely fashion -- in a word 'never'.

 

The most interesting is that I have written to the hospital with an outline of my problems and have had a positive response, but we shall see if anything changes.

 

The other thing which interested me is that I received a form of treatment options to hand to nursing staff on admission.   That form was sent to me by Scleroderma NZ, a group I am active in, it came originally from Scleroderma UK and before that it was devised by Scleroderma Australia. So maybe our message is getting out there slowly but surely.

 

So mio we are learning what to look out for and by telling our stories more of us will be aware of what to look out for.

 

Best wishes for a good recovery but don'tbe intoo much of a hurry to escape before you are truly well enough.

 

Judyt



#10 Joelf

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Posted 19 May 2015 - 04:28 AM

Hi Judy,

 

I'm so pleased to hear that your Mitral Valve replacement was successful, but I'm very sorry that you've had such a bad time with pneumonia and diarrhea.  Thankfully, I don't suffer with gastric problems and during my recent hospital stay, I suffered with constipation, rather than diarrhea (both equally unpleasant in their own way! :wink: )

 

I hope that you are feeling much better now and continue to improve.

 

Best wishes,


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#11 miocean

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Posted 19 May 2015 - 07:12 AM

Oh Judy,

What an ordeal! I have a friend who had the mitral valve surgery and they damaged her diaphragm during it so she has continuous trouble breathing now. You are one strong lady to recover from everything you went through! Here are some flowers for YOU! :flowers:  :flowers:  :flowers:  :flowers: 

 

I would be very interested in seeing a copy of the literature for nursing staff for scleroderma patients. Is there somewhere online to find it? I know I have to sleep with my head elevated and not lay down for a couple of hours after eating so I do that on my own but perhaps others do not know that. Laying flat could cause you to aspirate.

 

My first night in the hospital I read an article about preparing for a long term hospital stay. It was geared more toward maternity or cancer patients but some of the things they mentioned I have used:

 

1. Bring your own blanket. I have soft fleece blankets I keep all over at home and in my car as I am often cold. I had my husband bring one and just having something so soft and from home is so nice. I will just wash it in really hot water when I get home. I also brought fingerless gloves.

 

2. Bring your own clothes. The nurses will probably tell you that they want you in a gown because it is easier for them but you can wear you own clothes. Those gowns are so demeaning and not warm at all for someone with Raynauds. It makes it a little harder if you have an IV line in but they can temporarily disconnect the line while you take a sleeve on or off to change and if you are not on an IV it doesn't make a difference. You could even cut an opening into a sleeve to give them easier access. It has made all the difference psychologically to be dressed or in a comfortable nightgown of your own.

 

3. Have a picture of yourself to put on the door or wall so they know how you look when you aren't sick. This is especially for chemotherapy patients but we all know scleroderma changes your looks as well, let alone how you look after not shampooing or showering for several days!  It makes you more human to them. I didn't do this but it is good advice. They also suggest photos of family or some personal items to have around your room.

 

4. Ask if therapy dogs come to your hall and request to see one. I did and today I had a visit from a doggie named Seamus. That cheered me up. 

 

I'm sure some of you have other suggestions of what to do to make the stay better. Maybe we can compile a list and put it in a separate post.

 

I am going home today, just waiting for the doctor to come and release me. The nurse just told me he is on the floor eating lunch so hopefully he will be in soon. Everything is normal, my intestines are calming down, and the beach is waiting for me.

 

A little funny story: I needed to call dietary because they forgot to put something I needed on my food tray and I dialed the numbers but it wasn't going through. I had to buzz the nurse for help. I was using the t.v. remote instead of the phone!!  

 

miocean

 

 


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#12 judyt

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Posted 19 May 2015 - 12:51 PM

Hi mio,

I will find that Hospital stay paper and send it on.   Perhaps Jo could suggest where to post it so everybody can see it and and copy it.

 

I take my own pillow with me with a very different pillowcase on it so there is no confusion.   Early on in my stay, when I was vomiting all over the shop, Ian had to take it home and wash it but he is so good and it came back the next day.

 

Earlier on in the summer I got Ian to take me shopping to find some long Tshirts so I could be in my own clothes.   Unfortunately they were 'out of fashion' this year and I am just not a pyjama fan.   Just as well anyway because some days I was changed 3 or 4 times and Ian didn't need that volume of washing to add to his stress.

 

The Grandies brought me pictures they had done and I was surprised how many people commented on them.   "Your Grandchildren love their Granma don't they was a common comment.

 

After open heart surgery there are little pillows to hug to relieve the ache if one has to cough, and to take home and use under the seatbelt in the car.   I was given a lovely cushion made by a quilter and I have been inspired to make some and donate them.   It is so lovely and comforting.   Just have to get my head together and co-ordinating wth my sewing machine.

 

 

Watch this space - or somewhere else for another post.

 

Judyt



#13 Joelf

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Posted 21 May 2015 - 10:32 AM

Hi Judy and Miocean,

 

Thanks so much, Judy, for letting us have that very useful Hospital Checklist you mention in your post #12.

 

I've included a link to the Nursing Guide for Scleroderma Patients which is on our Preparing for Doctor Appointments page on the website.

 

Kind regards,


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#14 Amanda Thorpe

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Posted 22 May 2015 - 12:38 AM

Hello Miocean

 

Sorry to come in so late! Sorry you're in hospital and for so long. As miserable as hospital can be you know that you need to be there and it's part of recovering. I just hope it's quick for you. 

 

I usually take my own bedding too, on one occasion I said that I did not want a health care assistant to change my bed but she began to do so after I left the bay. To cut a long story short I lost a pillow case to the set because the health care assistant had put it in the laundry and it was never seen again!

 

My survival techniques for hospital stays:

 

1) Family. My husband is at my side, clearly he's my first choice but if not, my sister or my mother or friends

2) Endless supply of proper coffee from the resident coffee shop accompanied by little goodies from said shop

3) NEVER eat hospital food, my family supply me with food from elsewhere

4) Tune in and cop out. Plug into your music or radio and thereby tune out everyone else

5) Sleep

 

In short eat, sleep, repeat!

 

I hope you're home soon and take care.


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#15 miocean

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Posted 24 May 2015 - 12:15 AM

It is good to be home. The nephrologist is adjusting my Antirejection medications so I will be going for bloodwork every few days. At my follow up appointment he said I was in acute renal failure. That was a term I didn't hear in the hospital. From now on I am calling the doctor right away! I know I can't mess around with my kidney transplant.

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#16 Joelf

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Posted 24 May 2015 - 07:22 AM

Hi Miocean,

I'm very pleased to hear that you're back home again now;it must be such a relief.

Here's hoping you don't have anymore nasty bouts of diarrhea and that your anti rejection medicines are sorted out satisfactorily.

Best wishes,

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