Sphincter of Oddi Dysfunction?

Hi everyone, its been a rough week and this weekend is going to be tougher, I'm afraid...for me anyways (hopefully those of you that celebrate Easter, have a nice holiday).  Since I posted last, I was still waiting for my CT scan results.

This past Monday I had my first visit with the surgeon my gastroenterology specialist is working with. He went over the scan and even pulled it up on his computer so my husband and I could see it.  As usual, it was normal. It did show some loops of redundant distended colon, but he doesn't believe that is causing my pain. The x-ray tech noted a small benign lesion on my liver, but this doctor believes its actually a bruise that hasn't healed yet from my last surgery, so no worries there either.

So, onto more tests.  On Monday, April 9th, I am scheduled for a Hida Scan. He thinks I may have a problem called a Sphincter of Oddi Dysfunction. I couldn't find a lot of information regarding this online, since its pretty rare, but I do know there are clinical trials for bariatric patients that have had their gall bladders removed. For some reason, it seems this happens to a lot of people that have their gall bladders removed with or without bariatric surgery. According to the surgeon, and I may be a little off on understanding this, but this little muscle controls the flow of bile between the duodenum and the intestines.  It causes a form of spasms within the biliary tree which equal the majority of my symptoms. The problem will be, if this turns out positive, they have no way of getting to it to repair it, since I had gastric bypass.  Normally a patient with this problem can have it fixed with a scope, but the scope won't reach where they need to go on me anymore. Guess we'll have to wait and see. I will get these results when I go back to the gastro specialist on the 18th.  He also had me double the amount of Prilosec I'm taking, since he believes I may still have an ulcer, but in the lower portion of my stomach that doesn't receive food anymore.  They have no way of viewing this part of the stomach any longer because of my bypass surgery, so its guess work. My biggest fear right now is Sunday though, since in order to have the test, I have to be off all narcotic pain medications for 24 hours.  This is not going to be fun, since lately, pain has been my life.

Now, another update, although I was quite against seeing a pain specialist, I did yesterday.  I had the old opinion that when doctors suggested this, that they were treating me as though the pain was all in my head---now granted, I have had doctor's say that outright, but that isn't the case now. Seeing the pain specialist actually wasn't at all what I thought.  This doctor is actually going to work with my gastro specialist and he is even going over all of my past medical records to assist in figuring out what is wrong with me.  In the mean time, his job is to manage pain.  Up until now, the doctors that have prescribed pain medication have only tried one...a version of Vicodin and no one has tried anything else. He changed my medications yesterday and although this will take some adjustments, he is going to try to give me a life free of pain, which I haven't seen in almost 3 years. He believes I have chronic neuropathic pain. My understanding is, this is when the nerves become over sensitive or damaged and it signals to the brain pain, even when there isn't a reason for it. I've had so many abdominal surgeries, its possible this is happening. So now, in addition to pain medication (which he switched to a different kind and will probably switch again) he also added a nerve block medication. I believe I will figure out if this is helping over the next few days as it gets into my system.  Although he didn't prescribe it yet, he is also considering adding a anti-depressant. I'm not depressed or at least I don't think I am, but anxiety and depression can lead to abdominal pain and these medications also help to calm the nerves down when they are hyperactive. Anyways, we'll see what happens once he figures out what my body needs to be pain free.

Hope all have a great holiday, if you celebrate it, otherwise a nice weekend. And, I will update again, once I know more :)

Reaction to CT Scan?

Hi all,  the last few days have not been fun (and to be honest, this is kind of gross), but figured I should share, since I have been sharing everything and it may help someone out there reading this.

As I posted the other day, I had a CT Scan with contrast dye of my abdomen and chest this past Friday (3-23-12).  As with previous scans with the lovely contrast material, that tastes so God awful, I came home feeling like I had the flu.  Basically the symptoms for me were being extremely tired, nauseated and a slight headache.  As per usual, I took a nap.  Unfortunately, unlike the previous times where I felt better when I woke up, this time I was not so lucky.  I woke up with heartburn.  Now, I've written about having heartburn before, but I can tell you, this was the absolute worst I have ever had.....the burning was constant and it was radiating all the way up into my throat.  I took Tums and Maalox, but nothing helped, plus remember I'm still taking a double dose of Prilosec every morning (40MG).  This severe heartburn kept me awake the entire night on Friday, and continued non-stop all through the weekend, until it finally subsided some on Sunday morning and left me with a side-effect, no one has seemed to have heard of before (why am I shocked?)  Anyways, all day Sunday my tongue felt as if it had been bitten or run over with a grater.  I tried to ignore it, used Chloraseptic Sore Throat spray to numb it, but it continued to get worse.  I looked at it in the mirror and was surprised to find it covered in red sores and a white, thick substance, which when I brushed my teeth and tried to scape it off, left me almost is tears and with a mouthful of blood.  I went to the doctor on Monday morning and they said it was thrush and now I'm taking Nystatin to clear it up. The family practice doctor I saw (not mine, but urgent care, since her office couldn't fit me into her schedule), was guessing and said he thought I had a reaction to the barium liquid they made be drink or to the dye (not sure if this is just hypersensitivity or an allergic reaction), and this caused the heartburn, which in turn, basically burned the inside of my mouth.   I see my gastro doctor on the 2nd and the pain med specialist on the 3rd, but in the mean time, I'm stuck with this....although they know what's going on.  Still waiting for the results of the CT scan.  It's hard to believe having a CT Scan could cause so much trouble, or just how much damage that acid can do....wonder what it did to my throat and my stomach lining?  Scary thoughts.

More tests?

Saw the gastro-specialist yesterday afternoon....more tests, here I come :)  We'll see where this leads now.  He scheduled me for a CT Scan with contrast of my abdomen and my chest for tomorrow morning (3-23).  He also called a consult while I was at his office, so I will now be seen by three doctors--as gastroenterology specialist, a general surgeon, and a pain management specialist.  I meet with the general surgeon on 4-2 to discuss the results of tomorrow's CT scan.   Both doctors are suspecting I may have a tear, either in the mesh from my para-esophageal hernia repair, under the mesh within the muscle, or there may be a tear in the abdominal wall.  All three have the symptoms that I am experiencing, so we'll see what this test shows, if anything.  In the mean time, they also want me to see a pain specialist, since the current pain medications are not cutting it and they explained there are many other options available.  Not sure when I'll get in there, but at this point, any kind of movement towards a solution is better than just being passed around from uncaring doctor to the next uncaring doctor, right?  I'll post again soon.

Another NEW doctor

For those of you not wanting to read the back posts, here's a recap:  I had bariatric surgery (roux-in-y)  in July 2008--starting at almost 300lbs.  By Spring 2009, down to 180lbs., but problems started:  had kidney stone April 2009, Gall Bladder removed and a incisional hernia repaired July 2009, exploratory surgery--found adhesions in October 2009. Lost my job and health insurance-Nov. '09.  Down to 165lbs.--Pain and problems got so bad I called my bariatric surgeon for help, even without insurance in May 2011.  Started testing, all came back normal, switched doctors, finally exploratory surgery in December 2011 discovered a very large para-esophageal hernia which was repaired. Felt great for about 2 weeks, vomited and all symptoms returned worse than ever...now down to 140lbs.  Losing this weight was truly not worth what I've gone through...

Since last time I posted, I had the chest x-rays, the aortic duplex, and the gastric emptying study and as per usual, all came back normal.  I'm still having a hard time keeping food down, or if I do the pain is almost unbearable..the last doctor increased the dosage on my pain medication, but it still just takes the edge off, it doesn't eliminate it.  The pain is still there 24 hours a day and is so bad now, its waking me up in the middle of the night, the minute the pain pills wear off.  I'm afraid to eat and something as simple as an ensure shake or yogurt isn't even staying down some of the time now.  I've lost so much weight, I am now down to a size four....I can't remember ever being in a size four...maybe when I was 10?  I absolutely hate seeing pictures of myself, since I'm basically turning into skin and bones and I think I'm beginning to look anorexic. My family practice doctor, has now referred me to a gastroenterology specialist, who I see tomorrow (March 21).  Yes, this is getting old...I feel like the "hot potato" that no one wants to hold and I just keep getting pushed from one doctor to the next. Every doctor does a couple of tests, then decides they either don't have time (or maybe just are not willing to invest the time) or whatever is going on is beyond their level of education needed.  Over the years the family practice doctors and gastro specialists have automatically referred me to the bariatric specialists, but then the bariatric specialist keep saying this isn't a bariatric issue.....where does this leave me?   It is unbelievably frustrating to me and I am truly losing all my faith in the medical system in which doctors are supposed to care about their patients. It really feels like they just don't care and I just can't comprehend this. We'll see what this specialist says tomorrow, then who knows, maybe I will end up having to find a doctor out of state or something...I'm running out of options.

1 step forward, 2 back

I feel like I'm back to square one, but at least my doctor is doing something now....and no, i don't mean the surgeon who fixed the para-esophageal hernia. I went and saw my family practice doctor this past Friday.

I had the upper g.i. on Monday, the 13th, per the surgeon and it came back normal (surprise, surprise--yes, I'm being sarcastic).  It amazes me that since this began, over 2+ years, every test has come back normal.  The doctors haven't seen a thing wrong, but then the surgeon gets in there and finds a big problem.  Am I surprised that this test came back normal too....not at all.  When the surgeon tried to push me off onto a pain clinic last week (rather than try to figure out what is actually wrong), I decided it was time to try a new tactic.  So I called my family doctor and although she couldn't explain why every test keeps coming back normal, she is doing something.  She refilled all of my prescriptions, scheduled me for an chest x-ray, an aortic duplex, and a gastric emptying time scan.  These will be over the next couple of weeks.  Although the thought is scary, she said it is possible I have something completely different going on that no one is seeing, since they haven't looked.  Its a possibility I could have mesenteric ischemia, or even gastroparesis. Neither is a good thing, but all of my symptoms fit, and with family history to consider, plus all of the past abdominal surgeries, she wants to rule these out.

I'll keep you posted in this never ending saga.
I just want my life back.

Reoccurring?? I hope not.

Hi again.  Well, ended up seeing the doctor early...Friday (Feb. 3rd), instead of the appointment that I was supposed to have today.  I learned a few things between the appointment and what I could find researching.  The bulge that popped out when I vomited is in the exact location of the sutures where the doctor closed up the hernia.  Although the doctor didn't really want to admit it, its a possibility I broke the stitches and mesh, and my stomach has returned to my diaphragm.  I'm scheduled for another Upper GI on the 13th and they'll know for sure, then he'll decide what they are going to do next.  The surgery for a para-esophageal hernia has a 35% failure rate and it appears it might have failed and they'll have to figure out how to get it to stay fixed.  The hardest part is they could not do a Nissen Fundoplication, because of my previous gastric bypass.  With this procedure they normally take a portion of the stomach and wrap it around the esophagus, therefore making the stomach stay in place and unable to move upward, like it did into my diaphragm.  Although I truly don't want to go through the surgery again, having it be a re-occurrence is better than it being something else, since then it means I am back to square one and they didn't fix it at all.   Not sure where I stand now, except in a lot of pain and back to no driving...even walking or standing for more than 10-15 minutes starts the pain up...fun, fun.  Anyways, will keep you all updated.

More worries

Well, let's see, since I posted last:  I had the surgery on the 28th of December and learned I had a para-esophageal hernia that none of the doctors had even guessed was there. They pulled my stomach and intestines back down to where they are supposed to be out of my diaphragm, and he used stitches and mesh to close up the huge hole that allowed it to go up there to begin with. Recovery was painful, especially since he had to straighten my esophagus back out where it had been pushed to the side by my stomach.  I saw the doctor for a follow up at 2 weeks after the surgery and was having a lot of problems swallowing.  Every time I would eat, it felt like the food was getting "stuck" half way down and actually made me feel like I couldn't breathe and was choking. This I learned was swelling and irritation of my esophagus, so he put me on a soft food diet (which truly sucks), but I was told would get better with time. I have followed every rule the doctor gave me:  soft-food diet, no lifting anything over 10 pounds, this even includes my hefty 20 pound cats.  The swallowing issue did get better, but I'm still not really sure why last Thursday (the 26th of January, 4+ weeks after surgery), I got sick for no reason at all eating lunch.  No nausea, no stuck feeling, it just came back up (fortunately I was at home, otherwise this could have been really embarrassing had I been in a restaurant) and then everything in my stomach came back up and I vomited really hard...this unfortunately caused some kind of problem.  The same spot as before bulged out and hurt really bad, forcing me to push on it until it went back in...I still don't know what this is. My old doctor thought this was an abdominal hernia, but my current doctor ruled that out during surgery.  Needless to say, I am back to all the same problems:  nausea and constant pain..only this time, that spot where it bulged feels like someone has a knife stuck in there and is sawing away. Its actually throbbing just like a cut on your finger does...man oh man does it hurt.  I don't know if I broke some of the stitches or if the whole repair failed and I'm back to square one or what it is. I'm scared I'll have to go through the whole surgery again.  I see the doctor again on the 7th of February and am stuck dealing with this until then, unless it gets really, really bad, then I am supposed to go to the emergency room, since my doctor won't be in his office until after Friday.  This is so frustrating. for a short time there, I had no problems at all and actually felt better than I did before my original gastric bypass surgery.  So, for now at least, I am back to where I was before....pain and more pain. I'll keep you all updated.  Take care and say some prayers for me please.