In Hospital.. Need some advice..
I know I havent posted in a long time and have been posting on the FB group. I wanted to post on here just in case anyone who doesnt visit the facebook group has any ideas or suggestions. I am sure this will be quite long so thank you for reading.
I was quite sick for a while with a vicious nausea dehydration vomiting then passing out cycle. I got that under better control and the things I have been diagnosed with post surgery are (not necc. from surgery): severe acid reflux, Gastreopresis, esophagus spasms/dismotility & endometriosis which was found from an open lap with my surgeon for abdominal pain.
For a while I was doing a lot better and able to keep down most foods and fluids. Out of the blue a week from today I started getting the same type of upper abdominal pain that was like contractions coming and going and started not going to the bathroom or passing gas at all. I have never had constipation before this and always have at least 5 good bowel movements a day. This was also two days after we flew into Colorado for vacation.
I ended up in the ER Fri where they gave me fluids anti nausea meds pain meds and blood work. They thought I was just dehydrated. On Sat we went for a ride and I ended up in the most extreme pain so I went to the nearest ER. They thought it was a bowel obstruction and did a CT scan with contrast, Xrays and an u/s of the gallbladder. They said from all the gas and stool they couldnt see as well as they would have liked to. They gave me an IV looking enema that made me have some watery stool. They gave me more pain meds, anti nausea meds and told me to go back to the nearest hospital to the airport the next day for fluids and anti nausea meds before flying home.
Sunday I was again in pain and all my pain meds were not working (I am not digesting or absorbing things properly which is another issue). I went into the hospital very late which was close to the airport and gave them my letter from the hospital the night before. Because I was in pain still they insisted on doing an x ray which again showed a lot of gas. They told me to see my PCP straight when I got home or go to the ER if anything got any worse.
Monday early am was flying day. I was still in a lot of pain and had a lot of nausea and my nausea meds stopped working. I was throwing up in the bathroom and had to hold the plane down while they waited which was extremely embarrassing. I ended up throwing up a lot of blood and by the time we landed I thought I was going to die so my husband took me to a hospital in Richmond. They did all the same tests and gave me the same meds and wanted to admit me. However I had an appointment with GI the next day where I lived and told them that and they said then it might be better to go to that and get admitted close to where I live.
Tuesday I went to my GI appointment and explained everything that was going on. They were pretty stumped but said to continue my pain meds (which werent helping) and my anti nausea meds and gave me laxatives because at this point I still had not passed gas or had a bowel movement besides the liquid one on Sat from the enema. They told me if I didnt have a bowel movement by that night and the pain was still there to go to the ER. So Tuesday night I was all alone with my son and ended up having to call 911 as it got so bad. Got to the ER and they gave me pain meds that didnt work and anti nausea meds. They did an X ray which again showed gas and I suppose poop as he said I was full of it. After the X ray the ER Dr came back and told me I had a SBO. The surgeon came down and told me the radiologist didnt agree with the ER Dr and thinks it was just from gas and poop. At this point I had been trying to get ahold of Dr E for a while but his surgeon on call went to his old partner who said he didnt work with Dr E anymore. I didnt like the way one Dr said I had an obstruction and the radiologist said I didnt. I waited there for a few hours and they told me the CT scan was going to be 5 hours from when I first started drinking. I have never had to wait that long.
At this point my husband was there to watch my son and home from work. With the help of some friends on OH I decided the best thing for me to do would be to check out of my hospital and head to Dr E's hospital where they did my surgery.
Wed: We got to Dr E's hospital in the morning after a very long drive and traffic. They had major issues getting an IV into my in the ER and wanted to do a CT scan right away with my symptoms and after showing them all my paperwork. I asked them to please call Dr E and let him know what was going on. I was in the ER for a while and they seemed to think it wasnt a blockage but my gallbladder as it showed it was thickened and had fluid. I was admitted to the hospital and when I got admitted they decided to take me off my pain meds and anti nausea meds bc they cause constipation and because I had not went in so long. I understood the reason but I was in so much pain and so nauseated and miserable without meds. I was told I would have a HIPPA scan in the morning for my gallbladder.
Thur: I had the HIDA scan which I am told showed my gallbladder was ok. I asked again about Dr E and they said he was called but didnt need to be notified unless it was something surgical. I finally saw a nice gastro Dr who decided the next morning I would have a repeat EGD and something wasnt right. I asked for a new Dr since I was not happy with the one I had but they wouldnt let me switch at night and no patient advocate was available. At this time they were only giving me Zofran 1x every 24 hours so I was throwing up my food drinks and meds. For pain they were giving me Tramadol and Percocet again not doing anything for me.
Friday (Today) Got taken in late but had my EGD. Was told all was normal except it was hard to navigate my system and the DR recc an upper Gi series. A new Dr came in who was super nice but only added in one more dose of Zofran and tyl for my pain. I tried to explain I dont absorb/digest meds that way but he didnt care. I again asked about Dr E and said I wanted him to look at all my scans and such and he said people had been in touch with Dr E but unless it was a surgical matter Dr E wasnt interested. I was kinda put off by that. He said he was pretty confident with 2 CT scans that there was no obstruction and while my gallbladder did look iffy after the HIPPA scan he felt it was fine. They scheduled the upper GI series for tomorrow and said most likely I will go home after that. So I sit here with no answers to any of my questions and having no idea what is going on.
I am upset because I am in pain and have a ton of nausea and understand they dont want to give me meds since I am barely going to the bathroom without intervention but at the same time I cant just sit here in a ton of pain and throwing up. I am not sure what to think at this time. Some Drs seem to think all my issues are caused by constipation and if that is the cause then I am wondering how it happened as before a week ago I have never had any issues with bm's or constipation.
Does anyone have any ideas or anything maybe I am missing or the Drs are missing? Thanks for reading if you got this far!
Edit to add the correct name for the scan I had. Thanks for letting me know =)
I was quite sick for a while with a vicious nausea dehydration vomiting then passing out cycle. I got that under better control and the things I have been diagnosed with post surgery are (not necc. from surgery): severe acid reflux, Gastreopresis, esophagus spasms/dismotility & endometriosis which was found from an open lap with my surgeon for abdominal pain.
For a while I was doing a lot better and able to keep down most foods and fluids. Out of the blue a week from today I started getting the same type of upper abdominal pain that was like contractions coming and going and started not going to the bathroom or passing gas at all. I have never had constipation before this and always have at least 5 good bowel movements a day. This was also two days after we flew into Colorado for vacation.
I ended up in the ER Fri where they gave me fluids anti nausea meds pain meds and blood work. They thought I was just dehydrated. On Sat we went for a ride and I ended up in the most extreme pain so I went to the nearest ER. They thought it was a bowel obstruction and did a CT scan with contrast, Xrays and an u/s of the gallbladder. They said from all the gas and stool they couldnt see as well as they would have liked to. They gave me an IV looking enema that made me have some watery stool. They gave me more pain meds, anti nausea meds and told me to go back to the nearest hospital to the airport the next day for fluids and anti nausea meds before flying home.
Sunday I was again in pain and all my pain meds were not working (I am not digesting or absorbing things properly which is another issue). I went into the hospital very late which was close to the airport and gave them my letter from the hospital the night before. Because I was in pain still they insisted on doing an x ray which again showed a lot of gas. They told me to see my PCP straight when I got home or go to the ER if anything got any worse.
Monday early am was flying day. I was still in a lot of pain and had a lot of nausea and my nausea meds stopped working. I was throwing up in the bathroom and had to hold the plane down while they waited which was extremely embarrassing. I ended up throwing up a lot of blood and by the time we landed I thought I was going to die so my husband took me to a hospital in Richmond. They did all the same tests and gave me the same meds and wanted to admit me. However I had an appointment with GI the next day where I lived and told them that and they said then it might be better to go to that and get admitted close to where I live.
Tuesday I went to my GI appointment and explained everything that was going on. They were pretty stumped but said to continue my pain meds (which werent helping) and my anti nausea meds and gave me laxatives because at this point I still had not passed gas or had a bowel movement besides the liquid one on Sat from the enema. They told me if I didnt have a bowel movement by that night and the pain was still there to go to the ER. So Tuesday night I was all alone with my son and ended up having to call 911 as it got so bad. Got to the ER and they gave me pain meds that didnt work and anti nausea meds. They did an X ray which again showed gas and I suppose poop as he said I was full of it. After the X ray the ER Dr came back and told me I had a SBO. The surgeon came down and told me the radiologist didnt agree with the ER Dr and thinks it was just from gas and poop. At this point I had been trying to get ahold of Dr E for a while but his surgeon on call went to his old partner who said he didnt work with Dr E anymore. I didnt like the way one Dr said I had an obstruction and the radiologist said I didnt. I waited there for a few hours and they told me the CT scan was going to be 5 hours from when I first started drinking. I have never had to wait that long.
At this point my husband was there to watch my son and home from work. With the help of some friends on OH I decided the best thing for me to do would be to check out of my hospital and head to Dr E's hospital where they did my surgery.
Wed: We got to Dr E's hospital in the morning after a very long drive and traffic. They had major issues getting an IV into my in the ER and wanted to do a CT scan right away with my symptoms and after showing them all my paperwork. I asked them to please call Dr E and let him know what was going on. I was in the ER for a while and they seemed to think it wasnt a blockage but my gallbladder as it showed it was thickened and had fluid. I was admitted to the hospital and when I got admitted they decided to take me off my pain meds and anti nausea meds bc they cause constipation and because I had not went in so long. I understood the reason but I was in so much pain and so nauseated and miserable without meds. I was told I would have a HIPPA scan in the morning for my gallbladder.
Thur: I had the HIDA scan which I am told showed my gallbladder was ok. I asked again about Dr E and they said he was called but didnt need to be notified unless it was something surgical. I finally saw a nice gastro Dr who decided the next morning I would have a repeat EGD and something wasnt right. I asked for a new Dr since I was not happy with the one I had but they wouldnt let me switch at night and no patient advocate was available. At this time they were only giving me Zofran 1x every 24 hours so I was throwing up my food drinks and meds. For pain they were giving me Tramadol and Percocet again not doing anything for me.
Friday (Today) Got taken in late but had my EGD. Was told all was normal except it was hard to navigate my system and the DR recc an upper Gi series. A new Dr came in who was super nice but only added in one more dose of Zofran and tyl for my pain. I tried to explain I dont absorb/digest meds that way but he didnt care. I again asked about Dr E and said I wanted him to look at all my scans and such and he said people had been in touch with Dr E but unless it was a surgical matter Dr E wasnt interested. I was kinda put off by that. He said he was pretty confident with 2 CT scans that there was no obstruction and while my gallbladder did look iffy after the HIPPA scan he felt it was fine. They scheduled the upper GI series for tomorrow and said most likely I will go home after that. So I sit here with no answers to any of my questions and having no idea what is going on.
I am upset because I am in pain and have a ton of nausea and understand they dont want to give me meds since I am barely going to the bathroom without intervention but at the same time I cant just sit here in a ton of pain and throwing up. I am not sure what to think at this time. Some Drs seem to think all my issues are caused by constipation and if that is the cause then I am wondering how it happened as before a week ago I have never had any issues with bm's or constipation.
Does anyone have any ideas or anything maybe I am missing or the Drs are missing? Thanks for reading if you got this far!
Edit to add the correct name for the scan I had. Thanks for letting me know =)
(deactivated member)
on 8/19/11 6:57 am - PA
on 8/19/11 6:57 am - PA
I'm sorry you're going through all this. I don't have any advice, but I will be sure to say a quick prayer that you get some answers VERY SOON.
Get Well and keep us posted on your progress.
Get Well and keep us posted on your progress.
Thanks hun. The Drs here have said a few have called and a few dont call unless there is reason to call him and he apparantly said unless its something surgery related not to bother to call him. I have called and even had a friend call without luck as I am hard of hearing. I am not sure what the heck to do.
I think it's a HIDA scan. http://en.wikipedia.org/wiki/HIDA_Scan
I assume the doctors who have seen you understand that you have a biliopancreatic limb that isn't in the alimentary tract, right? And that about half of your intestine is in that limb?
I cannot fathom why Elariny hasn't been in to see you. I would DEMAND to speak with him. NOW.
Yes I am sorry that is what its called. I have left him messages and have not gotten any in return and have been told the Drs have called him and since it doesnt seem like a surgicial issue he doesnt want in on this. I have showed them the diagram and info about my surgery since some still dont seem to understand what I have. They claim Dr E has seen my CT scan and not sure about the HIDA scan or the EGD today. I am not sure what to do at this point.
While I am pre-op so I cannot speak to what this is from the DS perspective I will say this - you must act as your own advocate. Get on the phone and start dialing your surgeon immediately. DEMAND TO KNOW why he will not consult on your case. That is just ridiculous.
Ask for a second opinion in the mean time. Ask to speak to the head of the hospital and discuss that nothing is being done for pain management which is unacceptable. Particularly the part about the physician not listening regarding absorption of medications. If constipation is the issue, then they should be treating that aggressively as well. It is absolutely not acceptable for a patient to be in constant pain, constipated or otherwise.
I hope you're working with the patient advocate as well.
Please keep us updated. Praying for you.
Ask for a second opinion in the mean time. Ask to speak to the head of the hospital and discuss that nothing is being done for pain management which is unacceptable. Particularly the part about the physician not listening regarding absorption of medications. If constipation is the issue, then they should be treating that aggressively as well. It is absolutely not acceptable for a patient to be in constant pain, constipated or otherwise.
I hope you're working with the patient advocate as well.
Please keep us updated. Praying for you.
I am so sorry you are going through this. I cannot believe Dr. E has not come to see you. Please do not let them force you out of the hospital until you have talked to Dr. E. Everyone keeps telling you he has been informed and is not interested, but if I were you I would insist on hearing it from Dr. E. I'm not saying the other healthcare providers are lying to you, I just know how passing messages can get messed up. Is your husband there with you?
I am not getting anywhere. I asked for a patient advocate today and called and left a message and just called again and now they are closed. Spoke with the charge nurse who says she cant do anything except give my attending Dr who is not here anymore my surgeons information tomorrow. I told her that wasnt acceptable and I was in more pain then when I came here and she said she isnt allowed to call him. I doubt he is going to come see me on the weekend and they want to discharge me tomorrow after my upper Gi series. I am in so much pain and no one will help. I dont know what to do anymore.
Kim,
There is always a hospital administrator on call to deal with "issues". Depending on how you want to pursue this, ask that the nursing house supervisor be a called to your room. Depending on how that conversation goes, ask/demand that the administrator on call be called in to speak with you and your family.
Good luck.
There is always a hospital administrator on call to deal with "issues". Depending on how you want to pursue this, ask that the nursing house supervisor be a called to your room. Depending on how that conversation goes, ask/demand that the administrator on call be called in to speak with you and your family.
Good luck.
-Gail-SW 257 CW 169 GW 165
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