I was diagnosed with Colitis in 2012, but I know I've had it for almost 2 decades. The reason I finally broke down and went to the Dr was because of the pain. I've been scoped from hither and yon, top to bottom, bottom to top. My Colitis is at the top of my large intestine, and also at the bottom.
During all of this, my common bile duct has been getting inflamed, I've been getting jaundice. I'm on my 3rd temporary stent to keep the bile duct open. ANYWAY...
After I was diagnosed with colitis, my Dr. prescribed me a powder (apparently it's really just a binding agent for the gut) to keep me from running to the bathroom all the time. That's it. Nothing else.
I don't see how this is helping my colitis at all. I am having flares. I have all but begged for something for the pain. He said he didn't prescribe pain medication.
I am constantly on the verge of going to the ER because of the pain. But if I went every time I needed something for the pain, I'd be there every day for a couple of weeks. (I get about a 2 week rest between flares currently.) I'm not working right now, but I know if I were, I'd either be fired for not going in (because of the pain), or I'd have quit, to be able to stay home, it's really that bad.
I feel just short of a junkie, the way I am wanting to get my hands on pain medication. (The last time I took pain medication was 2 yrs ago when I broke my nose.) I just need a break, but I hurt from the time I get up until I go to bed.
Is it normal to be denied pain medication by your gastro dr? This doctor is supposed to be the best in town, but I'm just not seeing it.
I'd really appreciate some feedback. I'm hoping I'm seeing this clearly, and not through biased eyes (because of the pain).
Do you take any meds for your colitis? If your not there should something you can try thats non narcotic,to control the colitis,and while the meds are starting to get in your system, you should get a little something for pain. Is the powder they gave you a bile binding resin? Not to mention if your running to the bathroom all the time,narcotics are know to cause constipation. I will say I've had numerous scopes..they find nothing..then I end up having my jpouch removed due to multiple fistulas and abcesses...keep trying, go to another doc...they dont always listen...and they dont always know...good luck..
I'd have to look up the med online to know what it is. All I know is he said it would keep me from running to the bathroom all the time. My Dr tells me nothing. He is treating me for an inflamed bile duct as well, and on my first ERCP he put a stint in and didn't even tell me until a month later when I saw him again. Every time I see him I have to get a new stint (literally every time), which is out patient, but it's almost starting to feel like a game. He is all over the situation with the common bile duct and totally ignores my colitis. I pretty much get the feeling that he sees it as my problem, deal with it. It's like, oh, you're in pain.....gee that's gotta suck....now let's get you a new stint.
My husband is the most level-headed person I know, so I pretty much bounce everything off him, and he thinks ignoring my pain has gone on way too long. He's less than thrilled that my flares are not being treated at all. Of course I am too. I just want to check around and see if anyone else is having to deal with the pain on their own.
Go to a new doc!! If your not treating the colitis you could really be doing some damage. There a lot of meds you can try to alleviate the flairs..you don't have to live like that. I had to have an illestomy done, and I can say my life is %100 better, but that is extreme..last resort of course.
Prednizone- however it is the devil..I don't suggest it unless totally necessary!
Have you tried any of these? If not, ask or get in to see someone else.
I saw the best doc in STL, and he completely missed my abscesses and fistulas..missed completely. I don't know about your bile duct, but a Cholecystectomy- gallbladder removal fix the problem? Plus they need to find out why the stents are necessary....don't keep putting a band-aid on it..
Please let us know what happens, get down and dirty with him..hes not god!!
I've never been given any of those medications. He's never mentioned anything to me about my colitis other than I have it and that's why I've been passing black 'stuff'. (I still do. I pass red blood as well, which tells me I'm bleeding from both the upper and lower parts of my bowel, where my colitis is located.)
I had my gallbladder removed eons ago at quite a young age. I did have a stone last year and it was removed, but the problem with the duct continues.
As far as I can tell, no, my dr is not treating my colitis in any way.
As for the stents, I agree, and have for quite some time that we are treating the symptom and not the problem. I have really come to feel that I am just making car payments for this doctor.
I still have a stent in me and have not been back in almost 4 months, and the stents are supposed to be changed out once a month. I'm just sick of this revolving door of one stent after another, a guaranteed new stent every time I see him. If I see him on a Thursday, he'll have me in the hospital literally the next day for a new stent, guaranteed. So far he has no idea why my bile duct is getting inflamed. He's not done anything to find out the why of it either.
I will let you know what happens. My husband is almost angry over all of this. I've been feeling like if this is all there is to it, then I need to see a pain management doctor, because my GI talks like it's just something I have to live with. He's given me a diagnoses and nothing more.
Get to your primary...get a cbc right away...blood in the stool is dangerous stuff...demand something be done...if u are activly bleeding,and the doc is ignoring u...hes a bad doc..u must feel like total crap..I was 10 when i had alot of blood in my stool..so i didnt it was bad...my hemolgobin was a 6...traumatic low...please make someone help u!
Hi...the reason you're having your bile duct problems is because you probably have Primary Sclerosing Cholangitis...it's a secondary disease that can be associated with UC.
It was thought that I have either that or PBC (Primary biliary cirrhosis), neither of which are a good diagnosis. The doc is leaning more to PBC as per blood testing and the MRCP.
My belief is that if the UC is nicely dealt with flare-wise, the PSC or PBC will hopefully stay in a fairly non-active state.
I'm also on a medication called URSO...it's a bile acid.
You should be on a medication to deal with your UC...an oral mesalamine AND rectal. What country are you in?
When you say your UC is also at the top...I'm assuming that's the cecum?
You need to get to see another doctor asap...one who can set you up with at least the FIRST LINE medications and deal with your UC. Pain meds won't do a darned thing except help with the pain a bit...
As well, you could ask the doc for an antispasmodic.
Have you had blood tests done as well...do you have copies?
Yep, you need a new specialist asap....
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I'm not getting medication for the bile duct flares either. He's not prescribed anything but the powder to stop me from running to the bathroom all the time.
I've been up all night. Both the colitis and the common bile duct are flaring, so it's pain on the left (colitis) and pain on the right (CBD). I am so miserable. Trying to be tough...but this is just so rough. I can tolerate a LOT of pain, but this just isn't letting up.
I don't know what the cecum is. I was told the colitis was at both the top (beginning) and the bottom of my large intestine. To be honest, I've not studied up enough on any of this. What I have learned is nothing compared to what you know. I haven't taken this seriously enough because my GI has pretty much shrugged it off, and I thought I should too. I thought he was telling the truth when he said this is just something you live with. I wouldn't have found this place if I hadn't been searching for information of pain relief. I have really felt like I was just being a wimp, that everyone else lives with this...and that I just needed to adjust to a higher level of pain. But that's hard to do when flares come every two weeks and stay for two weeks. I'm starting to buckle from it. (I am the only girl and youngest in my 'family', and grew up being called weak and a wimp, so I've always tried to 'tough it out', but I guess that's really more for the PTSD board (recently diagnosed)....I feel like I'm getting a one-two punch without a chance to catch my breath!)
I've had so many blood tests that I've lost count. But it was always to check my liver enzymes, to see if I was jaundiced. (I guess looking like a banana wasn't proof enough?) I know that's what every test was for, because I always asked the nurses each time to be sure.
I asked my husband again to PLEASE find me a new doctor ASAP. I feel like my whole stomach is one big hot coal. And I do get fever with this quite often. I really feel this doctor has led me down the garden path. More money for him I guess.
I want the inflammation and the pain gone, or at least reduced to a level I can better tolerate.
Oh, I don't have any copies of anything. Just bills we're trying to stay ahead of.
I just read up on Primary Sclerosing Cholangitis. <-- Does the outcome mean what I think it does? I'm angry that this doctor has not addressed this in any way. He's never even talked to me about any of it. It's ALWAYS just about getting a new stent until the inflammation decides to go away. He seems so perplexed over the CBD situation. Like he just has no idea what the problem could be, but a stent would be a great help! I feel so let down. And stupid.
I guess my next doctor will get to remove/replace the stent I still have in. Maybe he will let me choose which hospital I want my procedures done at. My current GI always opted for the older more archaic hospital. I got to choose the first time and I chose the newer better staffed and better equipped hospital. He was not happy. (I am sure it must cut into his profit if he has to pay higher fees to use the equipment at the newer hospital.)
The word 'bamboozled' comes to mind right now.
The following user gives a hug of support to NowUCme: quincy (02-27-2013)
Hi...I think what's needed for you is to initially go to the doctor and get copies of ALL the testing results of
1) blood tests
2) ERCP findings
3) colonoscopy biopsies
4) where exactly is the inflammation at both ends and the exact extend of the severity.
As well, you need to get definitive diagnosis if you have UC or Crohn's.
There is a form of UC that affects the cecum (the junction at the colon and terminal ileum).
You need to demand medications for your UC. The continuing inflammation is not good, and your doctor is ignoring your basic needs as a UC patient.
I would suggest initially Asacol and Rowasa retention enema.
You do need to get to another GI. But you need to be fully informed of what's going on in your body.
Regarding the continuing inflammation in your CBD..It is possible it's an isolated incident, but initially you need to make sure that you're in control of the knowledge of what's going on.
Continuing ERCPs aren't good either, they can set you up for further side effects such as pancreatitis and further infection in the liver.
I'm really not trying to scare you. But you have been a victim of this doctor who seems to have an attitude that you don't need to know anything. It's time for you to create a different scenario.
Make more appointments and get the information in your hands...on paper. That will allow you to do the research and formulate questions to get more answers.
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I don't know much about the bile duct stuff but I do know about pain management.
They are cracking down on doctors prescribing pain killers for anything but cancer. My doctor even legally had to give me a speech about it, basically they are being watched very carefully by the regulators for how/when/why/what they prescribe. The government is doing this in response to those who are abusing the pills. Unfortunately, IBD isn't a common problem and people underestimate the level of pain it causes. I don't know anyone who has IBD that would willingly want to take pain pills if they didnt absolutely have to because they agitate your stomach even more.
I was in the same boat as you, in horrible pain for hours in the bathroom every other week for several days at a time. It would get to the point to where I couldn't bare it. I didn't want to go to the ER because I literally couldn't get off the toilet long enough and didn't want to wait 6 hours in a disease infested waiting room to be told its a flare. But I had to several times.
I finally got prescribed Vicodin, but that made me super nauseous and felt like it was burning a hole in my esophagus. Then I would be constipated and the whole cycle would repeat. I finally said I couldn't do Vicodin anymore, I was only taking a half a tablet anyway but at least it let me leave the bathroom for the night. It was a damned if you do even more damned if you don't situation.
So an ER doc prescribed me tramadol which helped a lot more because it was less strong. But it also made me constipated. Finally the third time I was in the ER I was prescribed Percocet which killed the pain and didn't make me constipated. For some reason? I only need one very low dose, like 5mg or even a half of a tablet and I'm able to get out of the bathroom for the night. Then I'm not constipated and my body doesn't get into a viscous cycle. I was prescribed only 10 and that was 2 months ago and I've only used 2. More importantly, no ER visits and no pain every 2 weeks. The pill helps me get through the night and go to an appointment with my GI instead of having to go to the emergency room.
So my advice would be to ask if you can have a low dose, low amount of a painkiller (theyre different for everyone, but percocet worked best for me) that you can try at home during a flare so you can get through the night to see the doctor in their office to assess the symptoms.