Wow. A bunch. A whole bouquet. What hospital do you have them done at, if you don't mind my asking? I am a patient at UCH. Had one a'hole endoscopist at first and fired him. Now I have a Japanese guy and he is really really good. I totally trust him. Which is hard to do when you're knocked out with versed or propafol (I prefer the latter for easier waking up)..
Dana
greatdane61 said:
Yes 39 erp's - 40 in 2 weeks. I had 24 with first liver. Part of that time I was in Bellingham. I was first diagnosed at Virg. Mason and then UW. Both docs have moved on. And I moved to Denver. Then after 8 rejections and several ERCPs' rediagnosed and now 14 more and well on my way to 50. I do best w/ a regular 3 month ERCP for stretching and stenting. Keeps my quality of life at peak. So I found a very competent, efficient GI practice w/ docs who keep up on the latest trends and don't have students chasing their coats.
Anaconate said:
Thank you to all of you for your input. Appears that there are lots of mixed messages out there between doctors. My GI prescribed it at 2 x 300mg per day which is considered a low dose. I emailed the Hepatologist following my appointment to get further clarification and below is his response:
Nathan,
I favor using urso at your current (fairly low) dose. Mainly because you have colitis. It does have the potential benefit to prevent colon cancer. If you don’t have colitis, we usually would not use it. The risk associated with the medicine is mainly with “higher”doses.
Take care.
BTW: Greatdane61.... 39 ERCP's? WOW. I have my 6th on the 30th. (Over the course of 5 months)
I will def ask my doctor about that medicine, I have not gotten any info on ammonia being in my system? so this is something new to me... what are the symptoms when you have high ammonia levels? what does it cause, how do you recognize it? All this is so new to me. I guess I will need it for binding> I am suppose to be take couple of Welchol a day w/ a meal to bind bile & get it out my body. I don't like taking those pills because it gives me gas or mushy poop. When I have solid normal poop, but since my gallblader been out & these PSC symptoms that affect my digestive system I go to bathroom to poop often. I am taking otc immodium to handle my poop so it will manage how often I am running to the bathroom.
Crixus
danabee said:
Lactulose is basically a stool softener. However, it does bind the offending ammonia that otherwise migrates to the brain and causes HE. Even if you're pooping a lot, you still may not be moving out the ammonia. Ask your doc. It's a standard medicine for PSCers. I don't like taking the syrup version, but if you can afford the extra cost (it's not much), get the Kristalose version - little packets of powder to stir in water and drink. I prefer it. Just can't always afford it. Any-way.
Dana
Crixus said:
hey Danabee,
I don't know with Lactulose is? so I am not on it.. I don't have any issue w/ constipation, I don't know what's worse being stopped up .. or having to run the the bathroom to poop all the time... But since I have been off the medicine, I don't feel bad or anything I am staying hydrated...
Does anyone mind telling me what meds that take for PSC since so many people seem to be having issues with Urso??
I have not had any issues with side effects and I have been taking Urso for at least 4 years now but my liver enzymes are always high. I am taking 4500 mg a day right now and I am tired of constantly taking meds all day.
Also, has anyone had any issues with their spleen being enlarged??
You're on a high-dose urso regimen. I take 1000 mg a day and weigh 120 pounds. There is no other "treatment," per se, for PSC and urso is just an attempt to keep the bile thinner and moving better, therefore keeping liver function numbers lower. My alk phos is not too bad, under 200, and all the rest are within a decent range. You may have something else in addition to PSC. I don't know. Someone else on this list may know.
My spleen has been enlarged for years. This is normal for PSC. Mine is about double the normal size and my doctor doesn't find that alarming. But she keeps an eye on it. I see her every 3 months, have an endoscopy to check for varices every 6 months, and a CT scan to check for tumors every 6 months. Pretty busy.
My enzymes are high also, & I just started taking Urso 6 weeks ago when I was diagnosed , I guess since my enzymes were high.. the medicine was not helping me at all.. so now I am off that... Only prescription meds I am taking is
hydroxyzine HCL - for the itching...
Welchol- binding bile & getting it out my body.. I don't take this every day actually didnt take nothing but 2 pill all last week
Omeprazole - for reflux & heartburn , been taking these once a day since having my gallbladder removed back in Nov /2011
He does have me taking OTC
Phillips Colon Health- Probiotic once a day
Multiviatamin - one a day.. sometimes I take 2 a day
Vitamin D- take 2/ 1000iu pill once a day
Fish Oil pill - once a day
Anti-Diarrheal Equate Loperamide Hydrochloride - take 2 as needed maybe 3x a day
I also take my own Tumeric natural spice pills I made myself
I also took something another PSC patient on this site does I take a table spoon of Coconut Oil before I eat my meals.
I been officially off Urso for a full week as of today, I don't feel bad on any difference. I still have to make sure I eat right & stay hydrated. I still have itching at times... but I was having that while I was even on the Urso. I don't know if my spleen is enlarged is there a way of telling by looking at your abdomen?
Crixus
Emily said:
Does anyone mind telling me what meds that take for PSC since so many people seem to be having issues with Urso??
I have not had any issues with side effects and I have been taking Urso for at least 4 years now but my liver enzymes are always high. I am taking 4500 mg a day right now and I am tired of constantly taking meds all day.
Also, has anyone had any issues with their spleen being enlarged??
I ordered ox bile today because of Bubba's recommendation and what I read about it at Livestrong and on Mayo Clinic website. We'll see. Oh, got my authorization for Xifaxan today from the insur. co. I hope that works for the HE and the sleep disturbance.
I was taking Welchol before I got diagnosed w/ PSC.. It suppose to help bind the bile get it out of your body. I don't take it as prescribe 3 pills 2x a day.. I only take either 1 or 2. the medicine is very expensive $100 for 30 day supply but since I am not using it as prescribed it last much longer. I went to the website got a discount coupon to use when I get it again. I just got prescribed Asacol HD for my Ulcerative Colitis my doctor gave me 3 sample bottles of 12 tablets , the medicine w/ my insurance co-pay is $150, he gave me a discount card that the pharma company provided for $50 off... BIG WHOOP!! but I will take what I can get...
Go to a good pharmacy, one that takes Medicaid probably, and ask if they have financial forms you can fill out for certain pharmaceutical companies for free meds. There are many pharmaceutical companies that have programs like this. I've been on them in the past. You need to find a really good, resourceful pharmacist - with a heart. I would start by contacting the company that makes Welchol. Then the company that makes Asacol HD. That is ridiculous, $50 off. Argghhhhhhh!
I would question your doctor more closely about this Welchol med. I've never heard of it being prescribed to a patient with PSC. And it could be the cause of your diarrhea. It's main purpose is to lower cholesterol. Why are you taking it - have you asked your doctor this? Print out some info about the drug and take it with you or mail it to your doc. Here's a respected website with just straight info on it - http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001058/ . You can read what wikipedia has to say about it, too. I fear your doctor is getting a kickback for prescribing this stuff. Just a gut feeling.
I was curious to know if anyone who started Urso meds felt better ,,i feel more energy,,my doc said that was a placebo effect,,i said,,"i feel better and no one will take that away",,,it is real to me,,and thats all that matters,, i was constipated at first and it soon went away as i added more water and fruit to my daily eating,,,i have been on the meds for almost 4 months
Crixus: Can you tell me more info about the tumeric pills you make yourselve and what does the coconut oil do??
As far as sypmtoms with your spleen. You will not be able to tell my looking at your abdomen but it is very painful and the area of the stomach around your ribs will feel harder. (at least that has the sypmtoms that I was having).
As far as the turmeric , its has been report that this helps improve your numbers with your liver. I have not had any pain in my stomach or my ribs. There is a posting on this site on Turmeric which gives you all the information on Turmeric spice. Also I take a teaspoon of coconut oil before I eat food & take medications it suppose to help w/ the digestion & absorption of of the medication..
Crixus
Emily said:
Thanks for the input Dana and Crixus.
Crixus: Can you tell me more info about the tumeric pills you make yourselve and what does the coconut oil do??
As far as sypmtoms with your spleen. You will not be able to tell my looking at your abdomen but it is very painful and the area of the stomach around your ribs will feel harder. (at least that has the sypmtoms that I was having).
actually my GI doctor didn't put me on the welchol I was already taking it before I got diagnosed w/ PSC , but the Welchol is for cholesterol how it also acts as a binding agent to get the bile out you body , but I do think it's not doing anything, also I do believe its give me a crazy poop... if its not diarreah its mushy poop. I think you are absolutly right that I should not be taking that .. My doctor has not prescribed that for me but he did tell me to take 1 or 2 pills a day for which i have not done that because the medicine is expensive. This medicine also blocks other meds so its tricky when to take so I just not taking it really
Crixus danabee said:
I would question your doctor more closely about this Welchol med. I've never heard of it being prescribed to a patient with PSC. And it could be the cause of your diarrhea. It's main purpose is to lower cholesterol. Why are you taking it - have you asked your doctor this? Print out some info about the drug and take it with you or mail it to your doc. Here's a respected website with just straight info on it - http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001058/ . You can read what wikipedia has to say about it, too. I fear your doctor is getting a kickback for prescribing this stuff. Just a gut feeling.
I am on 500 mg twice a day. It seems to help with the itching. I used to be on 1500 mg/day. But some research has shown that higher doses can have a negative effect. There is a formula to figure how much you should take. I think it’s 15mg/kg body weight. I stopped using it for a while because of the cost (I’m on disability) and I ended up feeling very sick and my LFT’s went up. So I believe it helps me. My doc explained that the Urso is a benign bile salt that counteracts the effects of the “bad” bile.
Geez, I'm sorry, Congagirl, but your doctor's explanation sounds like something for a kindergartener. Bad bile? Come on. He/She can do better than that. You want more than that, right?
Thank you. I can certainly understand nightmare hospital stays. I almost died from pancreatitis brought on by an ERCP and while I was in hospital a nurse was cleaning out my IV and forgot to cap it off. I nearly bled to death too. Hope you experience a peaceful recovery.