Still having same pain after gallbladder removal

Hi Keefe, at least you're in the right place and I hope they'll be able to give you some answers and then you can keep all of us updated with what you're going through. Functional biliary disorder is a general name for sodd and there's a sphincter in the pancreas that it covers too. Take care

Hi Keefe, what a night you've had, poor you.My gp was going to give me tramadol the other day, she gave me cocodamol instead, which doesn't take the constant pain away either. I wonder if they'll do an ERCP while you're in hospital. Keep us updated. take care

I to had terrible pain worse than the gallbladder attacks. I had to go to hospital. It turned out that a stone had been left in a duct. This caused all the pain and a cyst on my pancreas. I though it was going to be so straight forward but it's been a nightmare. Fingers crossed I am on the road to recovery now. Hope the get what's going on with you quickly xx

Oh my, that sounds awful! I'm glad they found it and I hope that this means that you will stay moving into a pain free direction!

Darn, I responded to you but my post seems to have disappeared, sorry if this is a duplicate response.

A GI came to talk to me about sphincter of oddi dysfunction a little and said she was going to meet with some other GIs to discuss which direction they should go.

Is the cocodamol similar to tramadol?

This stuff is so frustrating! I'll keep updating!

Hi Keefe, I believe that tramadol is stronger and cocodamol is made up of paracetamol and codeine where as tramadol is a drug in its own right but they are both opiates. How are you feeling now, has the pain reduced? Yes please keep us updated as I think I mentioned my physician and surgeon think I may have this already and I haven't had my gallbladder out yet.

take care.

I see, so they're a little similar.

A new GI came in to speak with me and he said they are not able to confirm sphincter of oddi here, I'll have to go to another Hospital (I'm kind of close to Philadelphia so he recommended I go there to Temple or Jefferson)

He said so far my blood work looks good but they'll be retesting the enzymes in the morning.

What was really disheartening is that when I asked that in case this is sodd, could we try any Medicine in the meantime while I'm waiting for an appt in Philly, he laughed and said that there were no medicines for sodd. But, I thought maybe we could try something....amitriptyline, antispasmodic meds...freaking something. I'm so sad 😢 I'm scared they're going to send me home like this and I'm just going to suffer in pain and die (sorry to sound dramatic, but seriously)

I think I should have kept my gallbladder, but my percentage was not abnormal when I had the hida scan so I think my drs jumped the gun removing my gallbladder. Your case is very different though because your gallbladder is functioning at a very low percentage.

Thanks again for listening to me medical saga!

Carey

Hi Carey, they're right from all the information that I've read that there isn't any specific medication for this but  they can use anti spasmodics, calcium channels blockers (nifedipine) etc to try and reduce it. You will need to go to a specialist in this area as alot of doctors don't know much about it and its still a subject that they are still investigating and doing trials. If they do an ercp they can do something called an manometry which tests the pressure of the sphinctor, they can put a stent in to keep it open so that fluids don't back up which causes the pain or worse case they cut the sphinctor as its just a muscle which will keep it open also. I understand that you've been in so much pain but i expect you had this before and didn't realise it and when you had your gallbladder removed it meant there was no storage vessel for bile and with the sphinctor not opening and closing properly the bile backs up causing your pain. I don't know why they decided to take out your gallbladder but it maybe because of your symptoms.Even in my case they want to remove the gallbladder first and then they'll re-assess afterwards. They need to give you some pain relief and other meds to try and relax the sphinctor when you leave which I would expect them to do.

I know pain is awful and your worried and scared as no-one has mentioned this to you before but it isn't well known about even here in the UK. Alot of the information I've found on the net is from American sites. 

Don't be afraid  of talking that's what we're all here for on this site, to talk, listen and share information.

Take care and keep writing and we'll write back. 

Hi Katherine, thank you so much for checking in! I'm doing a little better I believe! Yesterday I was given tramadol (I thought that I was already taking this but I had the name confused with toradol) and the tram actually made a difference with the pain so I'm trying to eat a little more. Had some chicken noodle soup and a plain baked potatoe which is a pretty big deal considering just broth was causing pain when I first came in.

I had a hida scan and Mri which came back normal and I'm being sent home sometime today.

The last GI I spoke with was very helpful. He thinks I should continue the tramadol and start amitriptyline 10mg at night. I'm following up with my regular gi later in the week, have an acupuncture appt Tuesday and an appt with a GI who has a good reputation with biliary issues at a university hospital in philadelphia at the end of February.

Im still nervous but the little progress I've had has given me some hope!

It's amazing how different drs can be. I've seen drs while here that told me that I may have to just 'deal' with being like this and I've seen drs who have told me that while they may not be able to figure out the exact cause of my pain right now, they can and will try things to improve my quality of life. I'm so thankful that the last gi I've seen while here was compassionate!

I am really excited to see if the acupuncture proves helpful!

How are you feeling?

Hi Carey, I'm please that they're trying to deal with your pain. Yes eating very plain food does  make things easier. I still get the pain whatever I eat but its the strength of the pain that means how well I cope with it. 

Yes I believe getting the right doctor is crucial as not everyone know about this condition., its something they're still investigating because they don't know why it starts in the first place.. Let me know if the acupunture helps, if anything it might help with relaxation as I've found out that if I get stressed it doesn't help.

I'm ok thanks, you can live with so much and I've got my pre op in 2 weeks so I'm just heading towards those times.

Don't stop giving up on hope, there are people out there who know what the next step will be for you.  Keep me updated on how you get on. Take care .

I'll be keeping you in my thoughts as your pre op approaches.

Are you facebook? I found some great support groups on there for people suffering from gallbladder issues. Lots of useful information and support!!

Thanks Carey.

No, I'm not on facebook but thanks anyway. How's you pain at the moment, is it under control?

So far, yes. Im having some pain but the tramadol is helping and I'm using a heading pad as well. I'm not in complete misery as before! I'm very thankful! Too early to tell if the amitriptyline is helping. I've had to be a little more active to help with my children and I'm thankful I'm able to be more helpful to them than what I was.

We did hire someone to help us temporarily until I'm back to good.

I had to fill out a comprehensive overview of my health history for my acupuncture appt tomorrow andafter reflecting on my history, I'm starting to see some trends with fibromyalgia. It's something I'm goingoing to bring up with my general practitioner next week. It doesn't make sense that food would make my symptoms worse but I've been having other issues that could mean that fibromyalgia is playing some kind of role in my pain. I'm just a mess lately.

Well wishes, Carey

Hi Carey, I'm glad that you're not suffering from that awful pain that you had before. Thats great that your able to be more involved with your children, hopefully that'll take your mind off of things for a bit but don't over do it. being in pain all the time makes you tired or it does for me.  I'd love to know how you get on with acupunture, I had it years ago for a whip lash injury, I don't know if it did any good but it did relax me which is good as I'm usually very active.

Thats interesting about about fibromyalgia, I've just looked it up as I didn't know much about it looks as though periods of stress could be a huge factor especially in todays society, so as you already are going through a bad time that this will occur as well. I'm not a doctor but I can see how it can link with what your dealing with. I know some of the research I did there is a link between female hormones too as the majority of patients with gallstones or problems with the gallbladder are women. The human body is very complex!

Let me know how you get on tomorrow, good luck and best wishes.