Well it is now New Years Eve at the end of 2013, a time for reflection in many ways, and I thought I would revisit this old post.  Overall health is good around here, a few minor issues, but nothing too bad, just a few more daily medications to take, ah the fun of growing older.  The first year after my billary surgery was marked with milestones on abilty to eat this and that, first it was crackers other than saltines, then lightly buttered toast, within 3 months it was 3 or 4 french fries, by 6 months I was able to eat a small slice of pizza if it was not greassy, but would regret it later .  Now I can at least eat a nibble of just about anything I want, even a bit of that bad for me fried food, last week I managed 4 out of 6 chicken nuggets from a fast food place for lunch and last night I even managed a couple of slices of a store bought frozen thin crust cheese pizza.  So for those of you out there that may be going through such surgeries, know that there is a chance that one day not too far away you too might look back on those days when a Club cracker was too greassy to imagine eating as just a long bygone memory.  My mobility recovering from my broken back keeps getting better every month as well, now over 3 years out there are plenty of landmarks, although I still have  a ways to go, and can easily over do it.  There  those little things to appreciate, like being able to chase a paper caught in the wind across a parking lot and actually catch it, or  the first day I was able to sit up in bed without complicated bracing and lifting.  Still it is easy to over do as I did just last weekend with a 4 hour ride in a cramped car with poor back support which resulted in being barely able to get out of bed the next morning.  Well I guess I am rambling a bit, so I will close wishing everyone a good New Year.

Ike

Hey guys, I hope you don't mind me posting this here, I just need to get it off my chest, and I guess here is as good as anywhere?

The last few years have been kind of rough for me and my family, I am a man in my 40's now, in January of 2010 my father was diagnosed with esophageal cancer caused by chronic acid reflux, throughout the same year my wife was going through numerous medical test to try to find out what was causing a range of visual and nerve related symptoms, then one Friday in October of 2010 she received a diagnosis of MS, the very next day I fell and broke my back (L2 split compression fracture) in a freak household accident, I spent 3 days in the hospital followed by 4 months in a full turtle shell like back brace , had numerous X-rays, CT scans, etc (thankfully I had no nerve damage, it continues to slowly improve, but still my back hurts most days).  In Feb. of 2011 my father lost his fight to the cancer, radiation and chemo got the primary, but it was too late and had spread to his lungs and liver.  While in the hospital with my broken back I was diagnosed with high blood pressure, so a year ago this week in May 2011 I went in to see my doctor to get my blood pressure medication RX renewed, that was when I just happened to mention to him that I had been experiencing some itching in the week or two leading up to the visit.  This of course started the great roller coaster health adventure of the summer, with blood test, ultrasounds, various specialist, MRCP, ERCP, spyglass ERCP, biopsies, drains, a week in the hospital on IV antibiotics, and then the big Roux-en-Y hepaticojejunostomy surgery to remove my bile duct (thankfully benign tumor) and gall bladder with gallstones, and of course the long recovery process afterward.

  There are not words to express the range of emotions I have felt through this whole process, ranging from depression, to hope, to dispair, to joy to be alive and so on.   I guess I am at some type of milepost, a year out from the doctor visit that started the events that dominated my life for so many months, the first three leading up to the big surgery, and the next 3+ getting back to a semi-normal life.  I am now faced with limitations on what I can eat, the good side is it forces me to eat healthier, and I will have to go for checkups and liver tests every 6 months for the rest of my life, sure these are minor compared to what it could have been, but everyday I find myself waiting for the other shoe to drop.  If I wake up in the middle of the night with an upset stomach, I wonder if I should go to the emergency room, every time I find myself scratching I wonder if I have an obstruction in my reconstructed duct.  I try to look for the good things, enjoy life, etc. but still there is that nagging feeling in the back of my head, just waiting for the surprise of the year this year.

Anyway thanks for listening, and I am hopeful 2012 will be better than the last few years, or at least will have fewer surprises.

Ike

3

(8 replies, posted in General Discussion)

Hang in there, try not to worry, I know it is hard to do, but sometimes these it is probably nothing, really are nothings.

I hate to say it, but sometimes people do look "good", going through my ordeal last summer that ended up resulting in surgery removing my bile duct and gallbladder with a benign tumor, I lost around 35-40 pounds in 3-4 months which I had been needing to loose for years.  Since then I have gained about 5-10 of those pounds back (a lot of that in muscle mass), anyway the other day I ran into an old friend that I had not seen in a couple of years, and he made a comment about me looking good, looking like I had lost some weight, etc. and I told him it was not intentional, but I was doing good now, etc.

anyway, best of luck to you with the surgery, and while I do not know exactly what your going through, I can at least say I have been close to it, did a potentially risky surgery, get to go see the doctor for liver level blood work every 6 months for the rest of my life, and all that.

Ike

5

(9 replies, posted in General Discussion)

I lost my father to cancer just over a year ago (he passed away 13 months after being diagnosed with esphogeal cancer, in that time he went through several rounds of radiation and chemo, the raditaion was successful in getting the primary cancer, but the secondaries popped up on the checkup 6 months later)  Then 3 months after he passed away I had my own bile duct stricture, suspected CC orcdeal resulting in surgery in August to remove what turned out to be a benign tumor.  These two back to back experiences have certainly changed my outlook and personal thoughts on what I would do if I am ever faced with a cancer treatment course in the future.  My conclusion is if it is caught early, hit it hard and agressively, if that does not work and the odds are long, then try to participate in some type of clinical trial, that way even if it fails what is learned may help others in the future.

Ike

6

(8 replies, posted in General Discussion)

If your mother does have bile duct surgery I can tell you from experience that even if things go great the recovery process is a major ordeal.  I am in my 40's and in overall good health and I spent almost a week in the hospital after the surgery, but the thing I was not expecting was the level of fatigue that lasted for months.  The first week or so at home and I needed near constant help, walking just a short distance around the house felt like I had ran a marathon.  It was over a month after surgery before I was able to drive myself to the corner store and about 6 weeks before I was able to return to work part time (even then I would have to sit at my desk for the first 15-20 minutes and do almost nothing to recover from the 15 minute drive to work, I can see why 2-3 months for return to work is often quoted, I just did not have that luxury).  This only addresses the fatigue, there were also inital mobility limitations for the first couple of weeks (needed help sitting up, getting out of bed, and even walking around the first few days at home, and of course there were major dietary limitation, that have slowly improved over the last 9 months, mainly lack of ablity to eat fried or greassy foods, for the first several weeks even something as simple as a club cracker or slice of cheese was too greasy to digest, by Christmas I was able to eat a slice of pizza, but not without hours of digestive issues afterward, and now I can tolerate a small dry, non greassy cheese burger cooked on the BBQ grill with only minor digestive issues.

Ike

7

(8 replies, posted in General Discussion)

Wow I guess I sensed someone talking about me, I try to check in here every month or so and see what is going on.  Like was mentioned above I went through the suspected CC and surgery last summer.  At the time I was told by my doctors that the ERCP and Spyglass biopsies were only about 50-60% accurate with a high chance of false negatives, my surgeon, said that even with a benign tumor surgery was generally recomended as there was significant risk it could turn into CC at a later date.  He also said that even with a negative biopsy with strictures located where mine was that surgery revealed it to be CC about 80% of the time.

Ike

Your mother's story reminds me  a bit of my own (which you can read about on here in more detail if you look at my old messages), just under a year ago I went in to see my doctor thinking I was a ,mostly healthy 42 year old man, who was just getting over a broken back due to a fall a few months earlier, on a routine follow up visit, I mentioned I had been experiencing some itching and he did blood work for liver levels which started the ball rolling.  Ultra-sound found gallstones, referral to a general surgeon then to an MRCP which showed a "blockage" in the common bile duct, so the surgeon sent me to a Gastroenterologist for an ERCP, which found the blockage was really a stricture (scraping biopsy negative, but also told they were unreliable in these cases), on to a specialist Gastroenterologist who did a Spyglass ERCP, biopsy again negative, but visually he reported it looked "highly consistant with CC", places a stint to help things flow so on to the speciality liver surgeons.  I have my fist gallbladder pain a few days before my appointment to consult with the surgeons, local doctor puts me on antibiotics knowing I was scheduled to see a surgeon within a few days, I see the surgeon am told it is an 80% chance of CC even with negative biopsies, he is concerend about the gallbladder infection, schedules me in for surgery (ended up getting a Roux-en-Y hepaticojejunostomy instead of Whipple due to placement of the stricture higher up in the bile duct, similar surgery though), surgeon has a CT scan done, and ends up admitting my to the hospital on the spot, gallbladder is highly infected, erored into the liver, looks like the stint blocked the opening to the gallbladder which was already mostly blocked by gallstones, they put a drain in and have me on IV antibiotics for a week, then home for a week or so to let the infection clear up then back for the big surgery with a drain pouch taped to my side.  I have the big surgery and thankfully it turned out the stricture was benign, the surgeon said it was best to do the surgery anyway as even if benign strictures can turn into CC a lot of the time.  Spent a week in the hospital, then several weeks recovering at home, the surgery was rough, but the real issue was the fatigue afterward, even 6-8 weeks later I barely had the strength to drive myself to the store to run short errands.  Anyway I just had my 6 month follow up, liver lelels look good, but the doctors are telling me it will have to be checked every 6 months from here on out.

I had a my gallbladder removed along with Roux-en-Y hepaticojejunostomy which is somewhat similar to the Whipple procedure without the removal of part of the Pancreas last August for suspected CC due to a stricture in my bile duct causing jaundice (which was thankfully benign).  Like others have said the surgery lasted about 7 hours, when I woke up I had a lot of tubes sticking out of me, spent just under a week in the hospital (went in for Surgery 6 am on a Friday, released at 5 pm the next Thursday.  If you want to read the details you can look back at my previous posts that I made while it was all going on.  The first few of weeks that I was home I was very limited on what I could eat, nothing at all greassy (lots of jello and applesauce), I could not even eat a regular triscuit cracker without it causing digestive issues.  Over the last 6 months my ability to eat greassy (used in its mildest sense) foods has slowly improved, first it was simple things like crackers, and lightly buttered toast, by New Years I had successfully eaten a slice of pizza as well as a burger cooked on the bbq grill.  These last two accomplishments were not without some rumbles from my digestive system, but I did avoid anything too dramatic.  For the most part breaded deep fried items are still off limits at least in any meal like quantitiy (I can tolerate a bite or two, but something the size of a fried chicken strip is a recipe for hours of digestive issues).  Surprisingly enough my abiltiy to tolerate stir fried items is better than any other type of greassy food.

Ike

To give you some idea about the surgery, I had a Roux-Y hepaticojejunostomy performed in conjunction with gallbladder removal, etc. 3 months ago for what was then suspected Cholangiocarcinoma  which turned out to be a stricture in my bile duct caused by an extremely infected gallbladder or Mirizzi syndrome (the infection had eroded into the liver and effected the bile duct.  In my reading this can appear very much like Cholangiocarcinoma and the surgical solution is much the same, it also has a high incidence rate of turning cancerous.  I am a 42 year old man in good, but not great shape and this surgery was an ordeal, the procedure was performed by doctor Barakat in Houston, it lasted about 6-7 hours, my recovery has been much more difficult than I expected,  at least it has been at a slower pace.  I spent 5 days in the hospital after the surgery, the first two days are a bit foggy, but involved no eating or drinking, lots of tubes sticking out of me, and a morphine pain pump.  The key themes of my recovery can be narrowed down to fatigue and digestive / eating problems.  When they first started getting me up and moving the day after the surgery simply sitting in a chair felt like I was running a marathon, it was a month after the surgery before I had the strength to drive myself, and at 6-7 I was returning to work for limited hours (office work), I would have to sit at my desk and rest for about half an hour to recover from the ordeal of driving 15 minutes to work and walking into the office.  Now at just under 3 months my strength is getting back closer to normal, I am still far weaker than I would like, but I can at least do normal daily activities like taking out the trash without having to lay down and rest afterward.  As far as the digestive side goes, I have a very low tolerance for greasy or fried food, for the first month everything I ate caused a range of digestive issues, and I had no tolerance for greasy foods (even a sandwich with mayo or cheese was too much), this is slowly improving I can now eat limited greasy foods, nothing breaded and fried though without dire digestive results things like a little bacon or cheese, or even stir fried rice, last week a even managed to eat a fried chicken strip, although it did cause a evening of stomach issues, so perhaps it was still too soon.  As to your mother's ability to handle the surgery, I can't really tell you, other than it is certainly an ordeal, and the recovery is not fast.

Ike

11

(31 replies, posted in General Discussion)

If you are in Houston and surgery is an option I suggest calling Dr. Wood and his partners (houstonliver.com) they did my surgery in August (tumor on my bile duct, bile duct resection, and gallbladder removal, mine was benign thankfully, but still needed to be removed as they can become cancerous and the negative biopsies are of limited use in these cases).

Ike

Right now I just hope things do continue to improve, today some of my wife's relatives were in town visiting and everyone wanted to try the new Mexican place for lunch (trying to find something not fried on their menu was a challenge, but I ended up with a burrito stuffed with chicken, beans, rice, lettuce, and a little shredded cheese).  Anyway the funny thing was my wife was the only one at the table that still had her gallbladder.  smile

My surgeons gave me an Rx for pepcid , and also told me I would be on it for life, but that I could take the weaker over the counter type (twice per day).  Today has been a bit of a set back day, I had Italian food last night, I think I over did it with the pasta and cheese even though I only ate a small portion, was up much of the night and off an on today with queasiness and other digestive issues.  Another one day at a time, 2 steps forward and 1 step back....  overall I am closer to feeling normal, but not there yet.

Ike

I thought I should post an update on this message thread, it has now been 6 weeks since my surgery.  The recovery is going slow, but ok, if not perfect, I did have some complications with drainage from my incision, nothing too bad, no infection, just required packing and bandaging for 3-4 weeks at one end of the incision leaving a bit of a dimpled pock mark.  I started going back to work (desk job) after 4-5 weeks, still just going in limited hours, but it is improving, my main problem has been fatigue, simply driving 20 minutes to work requires me to sit down and rest a bit before doing anything,  it is slowly improving, we went to a family BBQ over the weekend and I was able to stand for nearly an hour before my knees started feeling weak, which is a major improvement from just a couple of weeks ago.  I have also had a fair amount of digestive issues limiting what I can eat, and how much at a time, the biggest thing is nothing fried or too greasy, even a sandwich with too much mayo will set off digestive issues, this may be slowly getting better, but I certainly will not be eating a cheeseburger or french fries any time soon.  (ok I will sneak a fry or two, maybe even 3 if they are small and not too greasy, but no more than that).  Anyway enough of an update for now, I must go find something I CAN eat for dinner, as my wife has told me I am in charge of finding food for myself tonight.

Ike

Well time to head home, plans have changed a bit, it looks like I will be going to my elderly mother's house (20 miles or so from home)  for a few days since she has a spare motorized hospital style bed, getting in and out of this motel bed has taught me I am not ready for a regular bed just yet, maybe in another 2-3 days.  My son is around on break from college for another week or so, and I will have him to help me get up and down out of chairs, beds, etc.  Anyway no high speed internet access there, just cell phone net, if you hold it just right, so don't expect any updates for a few days.

Ike

Hey, I have to do something to pass the time.   I am in a motel room tonight, will make the big drive / ride home tomorrow (about 4 hours), I am trying to cut way back on the pain medication, you know that as needed bit.  The pain pump, plus the oral hydrocodone they fed me before leaving the hospital had me loopy most of the afternoon, it is about midnight now and I have been pain medication free for a bit over 12 hours.  I am only a little more sore, but a lot more alert to the world, more coordinated (less typing mistakes), seem to be able to walk around a bit easier, etc.  I was rather surprised just how liberally they handed out the pain medication for me to go home on,  10mg Hydrocodone w/ 325mg APAP, bottle of 60 with 1 refill and instructions not more than 1 every 4 hours.  At 1 every 4 hours I would be completely oblivious to the world, and this was with me telling them I react easily to pain killers.  For comparison when I fell and broke my back last year I was sent home with 50 7.5mg/500 Hydrocodone with APAP and only ever took half of them over several months, even then I would usually split the pill into halves or quarters

Ike.

Thanks for all the support around here, with all the health things that have been going bad around here the last year or two, I really needed something to go good, at least getting the best option on the table.  After many months of diagnosis my wife was diagnosed with a slow degenerative disease last year, then the very next day  I fell and broke my back and spent 4 months in a back brace every waking hour, at the same time my father was dying of cancer, 13 months from first symptoms until his death last Feb.

Well it looks like the adventure of the last 3 months is almost over with (started 3 months ago this week with regular doctor visit and elevated liver levels). The pathology report came back from the the lab today as cancer free, and if all goes well they will release me later in the day today, I will miss the pain pump though, in fact I think I am going to give it one more bump right now (ah). I am not sure when they are going to be in to pull it out, but it will probably be soon.  I go back to the surgeons office on Tuesday for a followup, and probably get the staples out next Tuesday. 

Ike

Cottection inital results benign we will not have final results until tuesday the pathology lab is closed on the weekend
Feeling a little better loosing about one hose per day

Tumor was benign lots of tubes and drugs now time for pain med surgery went smooth mostly

8 more hours until I go in for my surgery, I am trying to keep my mind off of it, watching tv (not much on), etc.

Just dropping a note to say the surgery is scheduled for Friday Aug,  19th

I will let everyone know,  I will try to post a message from the hospital once I am up to it after the surgery and give everyone the results news.  When I was in there last week they had free public wifi which did help with the boredom and lack of things worth watching on TV.  Of course this time I suspect I will be far less capable of interests in such distractions.

Ike

thanks for the suggestions, right now the surgery is tentatively scheduled for around the 18th when I finish up the antibiotics, they want to do it ASAP before another infection hits, it appears the stint that was placed during the ERCP 4 weeks ago  may be blocking the gallbladder opening which was already limited by a gallstone in the neck of the gallbladder.

Thanks, can you give me some ballpark ideas of what to expect recovery time line wise?