sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hi friends,
This may be short as I'm trying to type from my phone.
You may have missed me for a few days... maybe not I've been terribly sick. Went to my PCP they suspected pancreatitis. Sent me for labs, and found out that yes I did have pancreatitis. So that landed me here in this unhappy hospital bed.
My labs have gotten some better but my pain has been worse so there is talk that there might be something else going on too.
So if you will, in your own way, send positive healing thoughts and prayers my way. Please also think of the medical team, that they would have wisdome & knowledge, patience & persistence to truly figure out what is going on.
I've had pancreatitis before so they need to figure out what is causing this. I've also been having abdominal pain episodes for awhile now. So something is going on.
Thank you friends! Hugs
Posts: 5237 | From here | Registered: Nov 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
sammy - so sorry to hear that your in the hospital.
I know we complain about doctors BUT there are really competent and caring ones that are geniuses in their field.
As you have stated, you have had this before, I m confidant that you will get some answers and be able to solve this problem.
Also, no one should suffer with pain while in the hospital. Don't be afraid to hit your button and request pain meds.
I know you will give it everything you got because you're a fighter. Sending healing prayers your way. Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Sammy .. I'm so sorry to hear this. I know the pain must be terrible.
Will pray for you and for the staff that they might have great wisdom and care.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "abdominal pain episodes"
you might ask them to consider one of the more than eleven kinds of PORPHYRIA.
A urine test would not be adequate. Multi-faceted testing must be done in a specified manner.
Also know, that if porphyria, fasting can make it much worse and put one in the severe danger zone. So can certain kinds of Rx. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
AMERICAN PORPHYRIA FOUNDATION -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, no, sammy!!! I am so, so sorry to hear this! You've had way more than enough.
I pray that they will find the cause and be able to fix it promptly. Knowing, of course, that it may take some sleuthing and time.
Keebler, as always has a good suggestion. However, whether the doctors in the hospital would consider this, or do the right testing is another matter.
Yes, please, please don't be afraid to ask for whatever pain medication you need. I doubt that you would be afraid to ask. You may have concerns about what is ok for you now though, and what will work. I pray that they help you promptly with your pain.
Sending you love and prayers----and for your mom, too, who is likely worried.
Posts: 3770 | From around | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
PS Were you on any meds, esp IV meds, that might have contributed? Surely you've already thought of that.
Rocephin? I'm not even sure if that can contribute, just remembering when I thought I might have pancreatitis and considered it.
Posts: 3770 | From around | Registered: Mar 2008
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Hope you figure this out sammy ...sending good prayers and thoughts ...whatdo they feed ya in there ? Enzymes ? No food h pylori?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I will call her tomorrow, if she doesn't get to check in.
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hi friends,
I asked to be discharged today.
That might sound bad but due to a severe family situation, it was essential that I get home.
The main Hospitalist was very good, nice, and caring. I was blessed. My nurses were good too.
I still have a ton of pain. Worse with eating. And I struggle to drink. So those are real concerns.
(Bluelyme, I was unable to eat after Saturday AM. I couldn't keep down fluids by Sat night. Just started oral liquids late Thursday night. Started light very little bits of food Friday.)
I was on IV fluids and pain medicine until this I left this morning, Saturday.
They are unsure why I have the Acute Pancreatitis again.
They suggested it might have been caused by a virus since I do have a severe form of the CVID immunodeficiency.
I was honest and shared with them my entire updated med list. (The hospital was connected to all my specialists so they had easy access to my electronic medical records anyways.)
I have been taking 2 IV antibiotics but neither they or my other regular meds are known to irritate the pancreas or even the gallbladder. So they were not suspect to have caused the Acute Pancreatitis.
I am blessed to have a truly good GI super specialist that actually understands how my CVID, Ehlers Danlos Syndrome, and Mast Cell disease all interact and make a mess of my GI tract. He even understands the implications of Lyme disease and other chronic infections.
It all turns out to be a major web of complications! No one before him has ever truly understood.
Hopefully he will have an idea as to why I am getting these Acute Pancreatitis episodes. I will follow- up with him soon.
If he cannot figure it out, I may see his partner who is a sub specialist in pancreatic disorders. (He was my doctor in the hospital last year.)
Also, I do need further testing for porphyria so maybe that can be done soon and checked out too.
So thank you all for your kind thoughts, advice, and prayers.
I care and appreciate you all more than you all know!
*Hugs*
[ 01-29-2017, 10:50 AM: Message edited by: sammy ]
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Putting away the brave face...
If anyone is still up tonight, (it's 2AM eastern time) will you please say a prayer for me for healing, rest, pain relief, and sleep tonight.
I'm up when I should be sleeping trying to distract myself from the pain and the pain sweats.
Posts: 5237 | From here | Registered: Nov 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So good to "see" you! Thanks for the detailed report. So nice that you were with people there who treated you kindly.
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
So glad to hear you re out of hospital.
So sorry to hear about great suffering, poor thing.
Hopefully, you will heal while home, in your own bed, without constant interruptions and lights and noise such as in hospital settings.
Sending prayers for you to rebuild your strength. Posts: 2977 | From Florida | Registered: Nov 2016
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, sammy, I was going to call y you---arghhh! I've been struggling severely myself, but not in the hospital and not with acute pancreatitis---big difference.
I am glad in a way that you are home, but sad that the reason you had to go home was likely not good. I'm so sorry to hear that you are struggling so much with basic eating, drinking, and pain---pretty darned essential!
I hope that you can see your GI doctor, and/or the pancreas specialist, ASAP!
I understand well the interweaving mess of conditions, although this is a crisis now.
Love and prayers for your ease, comfort, and healing. Do you have pain meds that work for this pain?
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posted
sammy ,.. I'm so sorry you had to go home. I will pray hard for you tonight in hopes that you don't have to go back to the hospital .. but PLEASE GO if the pain gets to be too much!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Praying for you sammy...keep us posted
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
So sorry, Sammy. Praying for you. Posts: 2386 | From New England | Registered: Aug 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Prayers and love to you, sammy!!
Posts: 3770 | From around | Registered: Mar 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you for your prayers friends!
I've finally turned a corner.
I slept for the first time last night, this was the first time in over a week (had been struggling due to sickness, pain, & nausea).
So I finally felt better in general today.
I still have symptoms of pain & nausea but I guess it will take awhile to go away.
I am slightly concerned & upset that I have to wait for 8 long weeks before I get to follow- up with my GI doctor. The Hospitalist wanted me to be seen within 7- 10 days after my discharge as we do not know why I had the bout of Acute Pancreatitis.
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - thinking of you and praying for you. Hope things are getting better. Please keep us posted.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
sammy, how are you? I hope you are getting better every day.
Posts: 4681 | Registered: Oct 2000
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posted
Oh Sammy, sorry to see you've been dealing with this! I haven't been around here much lately myself. Prayers to you!
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I've been terribly sick. Went to my PCP they suspected pancreatitis. Sent me for labs, and found out that yes I did have pancreatitis. So that landed me here in this unhappy hospital bed. 
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