Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Hello! This is my first post here, although I have been a member for several months. My name is Debbie & I am 38 yrs old. I have been trying to get a diagnosis for the last year. After my biopsy in the spring (which showed fibrosis of the liver at stage 2-3), I was initially told I had PBC and/or AIH. Then they ruled those out & said it was more likely PSC. I recently had an MRCP which showed dilation of the common bile duct, but no sign of inflammation, blockage or stricture. They are thinking now that it might be a choledochal cyst. There is also some question about a very small " anomaly " that might or might not be a tumor in my ampulla. So, now I need an ERCP & I am very nervous about it. I know some of you here have had multiple ERCPs and gone through more difficult procedures, so it probably seems silly. But I would just like to know what the experience is like. Do you remember being awake during the procedure & how long did it take to recover? I am concerned about the risk of developing pancreatitis. Thanks! Debbie in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Debbie, I had one done about two weeks ago. You will be a sleep the whole time. I was put totally under. With my procedure I was sore on the right side or about a week, other than that I didn't experience anything else. Ask about how you will be sedated. I also always take a shot of Fenergan for nausea. Don't be nervous. It will be okay. Can I ask what AIH is? Let us know how it goes. Armanarman_shirin@... Nervous about ERCP Hello! This is my first post here, although I have been a member forseveral months. My name is Debbie & I am 38 yrs old. I have beentrying to get a diagnosis for the last year. After my biopsy in thespring (which showed fibrosis of the liver at stage 2-3), I wasinitially told I had PBC and/or AIH. Then they ruled those out & saidit was more likely PSC. I recently had an MRCP which showed dilationof the common bile duct, but no sign of inflammation, blockage orstricture. They are thinking now that it might be a choledochal cyst.There is also some question about a very small "anomaly" that might ormight not be a tumor in my ampulla. So, now I need an ERCP & I amvery nervous about it.I know some of you here have had multiple ERCPs and gone through moredifficult procedures, so it probably seems silly. But I would justlike to know what the experience is like. Do you remember being awakeduring the procedure & how long did it take to recover? I amconcerned about the risk of developing pancreatitis.Thanks!Debbie in NC Check out the hottest 2008 models today at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Debbie, Any procedure can be scary, especially when you don't know what to expe ct, so don't feel bad about being nervous. I had a number of ERCPs prior to transplant, and they all went much the same way. They had me lay on my side as they begin sedation. They would place my head in a position with a brace that would allow them access down my throat. The position was a little unnatural, though not uncomfortable. Within a couple minutes I would feel groggy, and at some point lose awareness, sort of like falling asleep abruptly. Once I was 'out', they would perform the ERCP. Apparently in the 'twilight' sedation they use people can still respond to requests to move certain ways, even though they have no real awareness of it, or recollection of it afterwards. I would wake up in an hour or two in recovery, being groggy for several hours, maybe drifting in and out of sleep. Sometimes my throat was sore, but otherwise I was comfortable. The doctor would come by and talk about what was seen/done. I would often forget what the doctor said, or sometimes that he had even come by. That is why it is important for someone else to be there to write down what is said. If balooning was done, sometimes I had pain that evening, but otherwise I was able to eat and do light activities that did not require alot of thought that evening. The next day I was usually back to normal, and never had any complications from the procedures. Hope that helps, Darryl PSC/UC 96, Tx 02, PSC again 04 > I know some of you here have had multiple ERCPs and gone through more > difficult procedures, so it probably seems silly. But I would just > like to know what the experience is like. Do you remember being awake > during the procedure & how long did it take to recover? I am > concerned about the risk of developing pancreatitis. > > Thanks! > > Debbie in NC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 AIH is autoimmune hepatitis. It sometimes overlaps with PSC. The " good " thing about AIH is that it usually reacts to immune suppressants, something that PSC doesn't. The strange thing is that AIH overlaps with PSC, or with PBC (another bilary disease) but PSC and PBC supposedly do not overlap. Chaim Boermeester, Israel From: [mailto: ] On Behalf Of Arman, Shirin, Niki & Mateen Sent: Thursday, September 20, 2007 15:41 To: Subject: Re: Nervous about ERCP Debbie, I had one done about two weeks ago. You will be a sleep the whole time. I was put totally under. With my procedure I was sore on the right side or about a week, other than that I didn't experience anything else. Ask about how you will be sedated. I also always take a shot of Fenergan for nausea. Don't be nervous. It will be okay. Can I ask what AIH is? Let us know how it goes. Arman arman_shirin (AT) yahoo (DOT) com Nervous about ERCP Hello! This is my first post here, although I have been a member for several months. My name is Debbie & I am 38 yrs old. I have been trying to get a diagnosis for the last year. After my biopsy in the spring (which showed fibrosis of the liver at stage 2-3), I was initially told I had PBC and/or AIH. Then they ruled those out & said it was more likely PSC. I recently had an MRCP which showed dilation of the common bile duct, but no sign of inflammation, blockage or stricture. They are thinking now that it might be a choledochal cyst. There is also some question about a very small " anomaly " that might or might not be a tumor in my ampulla. So, now I need an ERCP & I am very nervous about it. I know some of you here have had multiple ERCPs and gone through more difficult procedures, so it probably seems silly. But I would just like to know what the experience is like. Do you remember being awake during the procedure & how long did it take to recover? I am concerned about the risk of developing pancreatitis. Thanks! Debbie in NC Check out the hottest 2008 models today at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Debbie, I've only had one ERCP and I didn't get pancreatitis. It was under conscious sedation and I was awake through part of it. Next time I'll ask to be put out completely, because I have such a strong gag reflex it was pretty unpleasant. I just had an endoscopy and they gave me 4 mg of versed instead of 2 mg, and I was out the whole time. What a difference that made! It took years for me to get a diagnosis. I have PSC & AIH. Good luck to you - I hope the result are good. Please keep us posted. -Marie > >Reply-To: >To: >Subject: Nervous about ERCP >Date: Wed, 19 Sep 2007 11:50:49 -0000 > >Hello! This is my first post here, although I have been a member for >several months. My name is Debbie & I am 38 yrs old. I have been >trying to get a diagnosis for the last year. After my biopsy in the >spring (which showed fibrosis of the liver at stage 2-3), I was >initially told I had PBC and/or AIH. Then they ruled those out & said >it was more likely PSC. I recently had an MRCP which showed dilation >of the common bile duct, but no sign of inflammation, blockage or >stricture. They are thinking now that it might be a choledochal cyst. >There is also some question about a very small " anomaly " that might or >might not be a tumor in my ampulla. So, now I need an ERCP & I am >very nervous about it. > >I know some of you here have had multiple ERCPs and gone through more >difficult procedures, so it probably seems silly. But I would just >like to know what the experience is like. Do you remember being awake >during the procedure & how long did it take to recover? I am >concerned about the risk of developing pancreatitis. > >Thanks! > >Debbie in NC > _________________________________________________________________ It’s the Windows Live™ Hotmail® you love — on your phone! http://www.microsoft.com/windowsmobile/mobilehotmail/default.mspx?WT.mc_ID=Mobil\ eHMTagline2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 AIH is Autoimmune Hepatitis. As I understand it, there are 3 autoimmune diseases of the liver. PSC, PBC, and AIH. AIH is different from PSC or PBC in that it does not specifically attack the bile ducts. It attacks/inflames the entire liver. It is progressive like PBC & PSC, but can be managed with steroid treatment. This is a simplistic description. I'm sure there are others here who have experience with it. It can overlap with PSC or PBC. Thanks for your response. I think I am just paranoid about this test because I have a strong gag reflex & a phobia about choking and/or having my mouth clamped shut. I was under conscious sedation for a colonoscopy earlier this year, and I remember talking to them & asking for more pain meds. That was OK for that procedure, but I think it would be horrible for me during an ERCP. I have asked for general anesthesia (I think they said they will use propofol?), so, hopefully, it will be OK. Do you get the Fenergan before hand, or while you are in recovery? Debbie in NC > > Debbie, > > I had one done about two weeks ago. You will be a sleep the whole time. I was put totally under. With my procedure I was sore on the right side or about a week, other than that I didn't experience anything else. Ask about how you will be sedated. I also always take a shot of Fenergan for nausea. Don't be nervous. It will be okay. > Can I ask what AIH is? > > Let us know how it goes. > > Arman > arman_shirin@... > > > > Nervous about ERCP > > Hello! This is my first post here, although I have been a member for > several months. My name is Debbie & I am 38 yrs old. I have been > trying to get a diagnosis for the last year. After my biopsy in the > spring (which showed fibrosis of the liver at stage 2-3), I was > initially told I had PBC and/or AIH. Then they ruled those out & said > it was more likely PSC. I recently had an MRCP which showed dilation > of the common bile duct, but no sign of inflammation, blockage or > stricture. They are thinking now that it might be a choledochal cyst. > There is also some question about a very small " anomaly " that might or > might not be a tumor in my ampulla. So, now I need an ERCP & I am > very nervous about it. > > I know some of you here have had multiple ERCPs and gone through more > difficult procedures, so it probably seems silly. But I would just > like to know what the experience is like. Do you remember being awake > during the procedure & how long did it take to recover? I am > concerned about the risk of developing pancreatitis. > > Thanks! > > Debbie in NC > > > > > > ________________________________________________________________________________\ ____ > Luggage? GPS? Comic books? > Check out fitting gifts for grads at Yahoo! Search > http://search.yahoo.com/search?fr=oni_on_mail & p=graduation+gifts & cs=bz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 My last two ERCP's I experienced sedated, that means I hardly experienced them at all, beacuse I was away, so to say. For the ERCP you don't have to be nervous, no pain when sedated. And even not sedated it is not too bad, even though of course not that pleasant. Afterwards there is a small risk of pancreatitis, but very few do get it, so better not to worry too much. And in (the rare) case you would be one of the few to get it, they will fix it. Keep drinking enough fluid the days before, try to sleep well and stay in good mood. You maybe will have a sore throat for a while afterwards, but that will go in few days. The diagnostic value of ERCP in our case is high, and they even might do some dilatations, which might make you feel better. Those are pretty strong arguments to make one to see the ERCP as a beneficial and good thing. Good luck! , UC & PSC '83, AIH 2007 ..-- In , " Debbie Rasa " wrote: > > Hello! This is my first post here, although I have been a member for > several months. My name is Debbie & I am 38 yrs old. I have been > trying to get a diagnosis for the last year. After my biopsy in the > spring (which showed fibrosis of the liver at stage 2-3), I was > initially told I had PBC and/or AIH. Then they ruled those out & said > it was more likely PSC. I recently had an MRCP which showed dilation > of the common bile duct, but no sign of inflammation, blockage or > stricture. They are thinking now that it might be a choledochal cyst. > There is also some question about a very small " anomaly " that might or > might not be a tumor in my ampulla. So, now I need an ERCP & I am > very nervous about it. > > I know some of you here have had multiple ERCPs and gone through more > difficult procedures, so it probably seems silly. But I would just > like to know what the experience is like. Do you remember being awake > during the procedure & how long did it take to recover? I am > concerned about the risk of developing pancreatitis. > > Thanks! > > Debbie in NC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 ERCPs are necessary and since you are asleep and you don't have to drink a gallon of prep, it is easier than our old friend, the colonoscopy. My only advice is to relax, and be sure you get a good antibiotic to lessen the chance of infection. Ask the nurse what is prescribed so you know. I also think it is good to talk to the prep nurse about what your concerns. Ask lots of questions. Medical staff seem to like patients who are informed, and they will answer all your questions. If they don't----complain. Take Care MizKitSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Hi Debbie. I have a similar story. I'll keep it short but I was initially dx with AIH then they said no, PBC, then they weren't sure after seeing my biospy, then an MRCP showed a narrowed common bile duct and I had and ERCP that confirmed PSC but my bile ducts weren't as bad as they thought. As for the ERCP. I have a very high tolerance for sedation medications so I was scared to death of waking up or remembering the procedure. Bad news & good news....bad news is I woke up in the middle of it. Good news is I don't remember it at all! So it was okay but they ended up putting me under general anesthesia. But I have been awake for a regular endoscopy and it wasn't terrible so if I'd remembered waking up I think it wouldn't have been to bad. I stayed in the hospital tower but was not admitted (it's for people that travel and need a place to stay) over night and I did have some pain for 3-4 days but my docs gave me lortab and it helped. I was very worried about developing pancreatitis but I was fine. You'll hear good stories and bad. Good luck to you and let us know how it goes. 24 from NE PSC 8/07 PBC 10/06 (probably) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Ahhh... Sometimes its a good idea to fast a little before an ERCP if you have Crohns or UC. Under heavy sedation I lost my bowels during an ERCP. Not fun..and the nurses wont clean you up..they left me in a restroom covered in my own _ hit..while still incapacitated on Morphine and Versed. Imagine trying to focus on cleaning yourself and getting dressed in this state. I dont trust anyone now.. This happened at a local hospital..not at the VA. AK > > ERCPs are necessary and since you are asleep and you don't have to drink a > gallon of prep, it is easier than our old friend, the colonoscopy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Arman, On the PSC support website there is a list of Common Abbreviations (under database), AIH is listed as autoimmune hepatitis (I've never had it). I also have no experience with ERCPs, but I wish you well Debbie. Ian (51) PSC 89 Debbie, I had one done about two weeks ago. You will be a sleep the whole time. I was put totally under. With my procedure I was sore on the right side or about a week, other than that I didn't experience anything else. Ask about how you will be sedated. I also always take a shot of Fenergan for nausea. Don't be nervous. It will be okay. Can I ask what AIH is? Let us know how it goes. Armanarman_shirin@... Nervous about ERCP Hello! This is my first post here, although I have been a member forseveral months. My name is Debbie & I am 38 yrs old. I have beentrying to get a diagnosis for the last year. After my biopsy in thespring (which showed fibrosis of the liver at stage 2-3), I was initially told I had PBC and/or AIH. Then they ruled those out & saidit was more likely PSC. I recently had an MRCP which showed dilationof the common bile duct, but no sign of inflammation, blockage or stricture. They are thinking now that it might be a choledochal cyst.There is also some question about a very small " anomaly " that might ormight not be a tumor in my ampulla. So, now I need an ERCP & I am very nervous about it.I know some of you here have had multiple ERCPs and gone through moredifficult procedures, so it probably seems silly. But I would justlike to know what the experience is like. Do you remember being awake during the procedure & how long did it take to recover? I amconcerned about the risk of developing pancreatitis.Thanks!Debbie in NC Check out the hottest 2008 models today at Yahoo! Autos. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2007 Report Share Posted September 21, 2007 Hi! I'm a Debbie, too, and also went through a long (5+ years) period of not knowing for sure what was causing my abnormal liver function. I had two failed ERCPs at the HMO I used to go to; neither my doctor nor the chief of staff was able to successflly move the scope into my liver. The only side effect I had from those was frustration and a really sore throat. Years later I found a great technician who sailed through my first successfl ERCP. He also performed a sphyncterotomy so I needed to spend the night in the hospital. I felt SO much better after the procedure, and had absolutely no side effects. My most recent ERCP was a couple of months ago, and this time the doctor gave me a general anesthesia instead of using narcotics (I've had problems with low blood pressure). Odds are good that you'll sleep through the procedure, and feel fine afterward. Virtually every one of us has had at least one ERCP; many of us have had dozens. It's a wonderful procedure that is critical to your doctor's ability to properly diagnose and manage your PSC. Very few of us have any problems with them at all. Just follow your doctors instructions and you should be just fine. Debbie in Seattle UC 1972, J Pouch Colectomy 1991, Chronic Pouchitis, PSC diagnosed 2005 > > Hello! This is my first post here, although I have been a member for > several months. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2007 Report Share Posted September 21, 2007 Debbie, I just had my 4th ERCP a couple weeks ago. Don't get freaked out, it get's better. I had my doubts since my 1st one was horrible by waking up as well. The only problem is I couldn't do anything about it. Tell your doctor of your concerns and heard that some people wake up during. My last one was with a new doctor that basically said, " you and others like you who have gone through this so many times, there is no reason to put you through the trauma. " " I conduct all my ERCP's with general sedation. " Tons better way to do this. The only rational that one person told me was they don't want any chance of you to code out. Haven't had any problems since and much less worrying beforehand. I always was freaked by the prep steps before. Now I just try to focus that I will feel better after the procedure. They get to know you, we are " frequent flyers " Which I really do feel better since my last stent was blocked again. Listen to the experienced people here. They have been in your shoes. It get's way better. It's still a new experience to you now. Try to relax, even though we understand the concern. Good Luck! in Minnesota PSC2006, Factor V Leiden " I feel superfantastic! " Sny Duro-Last Roofing, Inc. Manufacturer's Representative MN, ND, Eastern & Central SD Corporate Website WWW.Duro-Last.com ________________________________________________________________________________\ ____ Got a little couch potato? Check out fun summer activities for kids. http://search.yahoo.com/search?fr=oni_on_mail & p=summer+activities+for+kids & cs=bz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2007 Report Share Posted September 21, 2007 there is no reason to put you through thetrauma.""I conduct all my ERCP's with generalsedation.">>> Another note to this........ A friend who is an anesthesiologist told me that general anest. is easier on our liver than conscious sedation. I have had conscious sedation for the first 10 or so ERCP's but had general for the last. Go figure... Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, listed 9/18/07married 28 years , 5 sons, 2 daughters in law, 1 granddaughter born 6/06 and 2 golden retrievers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2007 Report Share Posted September 21, 2007 When my husband gets his ERCP (and he has had many) you are told not to eat after midnight. This way you have no chance of losing your bowels during the ERCP. I'm sorry that happened to you. The fact they did not help you clean up while you were in that condition is horrible. I have a nursing back ground....I have never heard of that being done, and I hope you talked to someone about that. You could have been hurt in that condition. Bad hospital. Re: Nervous about ERCP Ahhh...Sometimes its a good idea to fast a little before an ERCP if you have Crohns or UC.Under heavy sedation I lost my bowels during an ERCP.Not fun..and the nurses wont clean you up..they left me in a restroom covered in my own _ hit..while still incapacitated on Morphine and Versed. Imagine trying to focus on cleaning yourself and getting dressed in this state.I dont trust anyone now..This happened at a local hospital..not at the VA.AK>> ERCPs are necessary and since you are asleep and you don't have to drink a > gallon of prep, it is easier than our old friend, the colonoscopy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 As a nurse manager and a nurse for 31 years, I have seen this on occasion but mostly nurse and aides are compassionate and will clean up anything. I have been hit, spit at, dragged over siderails, sworen at, had things thrown at me, been told I am a servant etc. I have seen many more patients be rude to me and my staff than I have seen the other way around. I am sorry for your experience but most people that work in hospitals are very caring, hard working people. This is a job that you take knowing you won't make good money, will work weekends, nights, holidays and none of the people you care for wants to be there. People are by nature not pleasant when they are sick and their families are scared therefore anything that is not right is the staff's fault. ie the 4 pack a day smoker who is short of breath. The breathing difficulties is somehow my fault.Martikxcp236v wrote: Ahhh... Sometimes its a good idea to fast a little before an ERCP if you have Crohns or UC. Under heavy sedation I lost my bowels during an ERCP. Not fun..and the nurses wont clean you up..they left me in a restroom covered in my own _ hit..while still incapacitated on Morphine and Versed. Imagine trying to focus on cleaning yourself and getting dressed in this state. I dont trust anyone now.. This happened at a local hospital..not at the VA. AK > > ERCPs are necessary and since you are asleep and you don't have to drink a > gallon of prep, it is easier than our old friend, the colonoscopy. Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
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