Got Out Of Hospital Today
Posted 11 February 2007 - 01:08 PM
First of all - is there a good spot for people with Scleroderma to have an I.V.? (feet or neck or where) I had 5 nurses try all up and down my arms/hands and NOT a single one could get an IV in my veins. My skin and veins are so tight. They mentioned a port.......or a central line. I was in tears and they were getting worn out trying to get an IV in. Finally they opted for a butterfly (leaving the needle directly in the crease of my elbow)....which meant I could not BEND my arm the entire time. It was very uncomfortable and scary...but it worked.
They basically treated me for a stomach infection. I was pretty frustrated with the doctor because he really still has no clue what I'm going through. The first day I was there he wanted me NPO for 24 hours........I said I was starving and that if he wants me to have a bowel movement then I need to eat something. NOPE - so I feel I totally wasted the first day away. Finally he let me eat and within 4 hours I had diarrhea and I vomitted. He then knew how serious I was. They started an I.V. of Cipro and Protonix for 3 days......then the butterfly needle came out of my arm.......urggh I was dreading the thought of what was to come.
But at that point we got in touch with a GI specialist and was told to do a Barium Swallow test (which I will go in the morning to do).
So they didn't try to put an I.V. in me because I was feeling somewhat better. The only thing then was I went from diarrhea to no bowel movement at ALL!! So the last 2 days I waited to have a BM. I finally did last night so they released me today.
Oh and they also got to see my low blood pressure in action too.......I was getting readings of 70/50 and they were a little alarmed. They put me back on Fludrocortisone.
I am a little concerned about the GI specialist......he said that IF my barium swallow test comes back 'bad' then he wants to see me. BUT - if it is ok, then there is nothing he can do for me if it is "Scleroderma" related. Now does that make sense at all?
Can someone please tell me what tests can be done by a GI specialist? Isn't there something like a upper GI or a Colon test?
Also - has anyone been on Protonix (sp?)? He used that instead of the Prilosec......
Posted 11 February 2007 - 01:53 PM
SSakar, it is so good to hear from you. I haven't been on this forum very long, but I was sure upset by your illness and lack of posting for a while. So glad that you were admitted and they are testing you. Gareth's esophagus doens't work and they told me there was nothing they could do about it. Maybe that is what the GI doctor is referring to? Do take care and get rested.
Take care, Everyone.
Posted 11 February 2007 - 02:04 PM
I was so worried about you that I did a post asking you how your were. I am so sorry for what you have been through. I too have very low blood pressure. I am on protonix and prilosec and they work well for me. The comment your GI made does sound sort of stupid. I think you need to have EGD- scope down the esophagus, colonoscopy, and gastric emptying study done. I am no doctor but that is what has been done on me. Please take care of yourself. A big hug is sent your way!
Posted 11 February 2007 - 09:41 PM
I've been worried about you, too. I had a feeling that you were in the hospital because it was obvious how sick you were -- except to your doctor, of course!
Maybe he's got the idea now, but I wouldn't be too sure. You really do need a doctor who has some experience with scleroderma Does your doctor have any experience? If the GI specialist doesn't know scleroderma, then maybe that's why he says there's nothing he can do. I don't know whether he means there isn't anything anyone can do. It seems to me many people on this board have had plenty of things done that have helped. But, of course, nothing will get done if the doctors don't know what they are doing.
Please evaluate your doctors and perhaps consider finding new ones. Scleroderma is an unusual disease and not something the doctors see every day. You want someone who has some experience with it.
I'm glad you are feeling somewhat better and I hope the scope gives you some answers.
Mary in Texas
Posted 12 February 2007 - 02:44 AM
I am glad to hear you are home and feeling a bit better. I can not help but concur with what the others have said...you must find a GI specialist who knows something about scleroderma. The Barium Swallow test seems to be a bare minimum of the testing that needs to be done. I am NOT a doctor, but it seems to me that you should have an endoscopy, colonoscopy, perhaps a esophageal manometry (tests the motiility of the esophagus) test and a gastric emptying test. Here is a link from the Sclero A to Z web page with some information about Common Medical tests for GI Involvement.
You might want to read up on the above mentioned tests and then call your GI doctor and request them OR get a referral to a GI doctor who has experience treating individuals with scleroderma. Please keep us all posted!
Posted 12 February 2007 - 05:43 AM
I am so glad you are back! There are many who have worried about you. I am on protonix and I have been for years.... It works the best for me. Please read the link that Heidi gave you and find a gi dr who knows something about sclero and what can be done!
Keep us posted and I hope you feel better soon.
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Posted 12 February 2007 - 06:19 AM
I'm just starting to see a GI, a good one according to my rheumatologist, and he ordered a GI x-ray and ultrasound. I thought I would get the swallow, the camera test, or endoscope? But no.
Hum. Hope he knows what he's doing.
Best of luck,
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 12 February 2007 - 06:38 AM
So sorry that you've had to deal with the hospital experience only to find out that Yes, something is wrong - but what it is - unknown. UGH! Based on the comment that your doctor made, it might be time to seek out a scleroderma specialist. To say if it's sclero related, nothing can be done - is ludicrous.
In my recent hospital stay they put a PICC line in my right arm for all my IV's (6-8 per day). Inserting the line required professionals using an ultrasound to find a vein then to feed in a 14 inch line. It started in my upper arm and I never felt it and it wasn't the least bit uncomfortable. They told me it could stay in for up to a year if need be, however, they did remove it when I was discharged. Just a thought if you are in the need of lots of IV's in the near future. A port is also something that has been recommended especially with all my IVIg infusions. But like you, I'm not quite ready for it.
Please read the material that Heidi provided. Copy out the tests and take them in. Doctors need all the help they can get. In reference to protonix, I've been on it for a month now because that's what they switched me to in the hospital, but it looks like I'm going back on prilosec. The protonix works for the heartburn but I've had reflux the past 2 nights whereas I wasn't getting that with prilosec (2 /day)
Please keep us informed Darling. You're in our thoughts.
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Posted 12 February 2007 - 07:06 AM
Sounds like you had a rough go of it - and you do need to find a GI doctor that can help. Heidi's link is a good one. Take one day at a time, know we are here, and keep us up-to-date as you can.
Posted 13 February 2007 - 01:59 PM
I was relieved to read that the ball is finally rolling in regard to your getting some help. We've been concerned about you and I'm sure you can hardly wait until you at least can feel better.
How did your barium swallow test go? When you do get the results, please let us know and how you're doing?