I have recently been diagnosed with PSC, just 4 weeks ago, when they found that my bile duct was completly occluded because of scarring. I currently have a stent in place. But even before stent placement I had this weird feeling when I ate. It must be a muscle contracting but it feels like when you go down that first hill on a roller coaster, like your stomach drops and it takes your breath away. The GI Dr. says if it continues, which it has, that I may need to have my bile duct widened and attached to the small intestine. This sounds like a major surgery. Has anyone had this feeling and/or had this surgery? I really do not want it if I can avoid it. Thank you for your input.
Yes, I am going to the liver specialist at MGH in July for a second opinion. Since December I have had 4 ERCP's and each time I got pancreatitis so I am pretty fed up with proceedures and the hospital. Thank you!
I am very fed up, especially since I need to go in for another one on the 18th to have the stent removed! I just want to be left alone, sick of everyone probing my body, lol.
I don't have any experience in the things you are describing but wanted to lend you some support. Diagnosed just 4 weeks ago and 4! ERCPs (1 per week, eh?), you have been through a lot of turmoil and pain recently. Hopefully things start looking better really soon. I'm glad you reached out and told us your story. Please keep everyone updated as you continue your journey. You are in my thoughts!
P.s. You can never go wrong with a second opinion.
4 ERCP since December, I think I would throw the towel in if I have 4 in 4 weeks, lol. I have had a lot of right upper quaderant pain and then when my levels were really high it felt like I had a stomach bug. It has been really difficult eating, anytime I eat I am in a lot of pain and of course they will not give me anything for the pain. Since December I asked for pain medication once and they denied it. They treat me as if I am an addict. But I am in so much pain after I eat that I have only been trying to have one meal a day. I am hoping that once I go to the liver specialist they will be more understanding. What do you guys do about pain control?
Stephen, I agree. I have never asked for any pain relievers in the past from this doctor, it is crazy! I am just tired of being in pain 24/7. I go to bed in pain and wake up in pain. I even told them that it does not have to be a narcotic, just anything to help and they never returned the call back. Very frustrating.
Deborah your story makes me want to reach through the computer, rub your shoulders and tell ya', ''Get back in that ring and tell those doctors they work for you!" Enough kidding... Kudos to you for getting hands on with your condition, this group is will be your cheerleader, coach and friend; at times I find the best advice here. If the doctors will not help you, hire another. You should not have to live through pain. Pancreatitis after each ERCP sounds sketchy. I don't know... is that normal? They may be rough when they are working. My fiance had one GI doc that would manhandle him internally (OK that sounded horrible - ewww) and each time after the ERCP he would be in pain. The discomfort would last weeks and occasionally he would have a little flare up right after, it could be calmed with Cipro though. We found a larger hospital that handles ERCPs all day. Are you able to change doctors? These "doctors" have your life in their hands. If you're able to change doctors or get a referral to another hospital then you should definitely invest some time in researching who can be of better service to you. Perhaps there may even be a member on the site that lives near you. Where do you live? We travel about 45 minutes into San Francisco to see our doctor. Yes, it may sound far but should there be an emergency you can always be transferred over. That's what we do. In regards to the 'odd feeling', I've never heard my fiance talk about the roller coaster feeling. He does have nausea occasionally though. I'm going to probe deeper into his descriptions of the nausea now. I didn't think about how the slightest change in feeling could signal a completely new symptom. Duh, right? You would assume nausea is nausea but then again, PSC is a unique son of.......... Cheers! ;)
Supposedly this woman is one of the best. I am at a top notch hospital, MGH. I was just in for another ERCP to get the stent removed and although I have pancreatitis they sent me home with pain medications. The doctor said that they would just do the same for me in the hospital. Although went I got home and had the medication it did not help like the IV stuff does. My mother hates this doctor and I know now that I need to switch. I have been in agony for 3 days now. I have thought about going back to the ER but I just doubled up on the pain medication instead. She sent me home with 2mg of hydromorphone and I looked on the internet (sorry, lol, just had to) and it said to be as effective as the IV dosage you would need 6-8mg orally. So, it is time for me to find a new GI. Anyone from Boston have a good GI doctor?