My Introduction

Discussion Board Forums Introductions! My Introduction

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  • #80208
    mattreidy
    Participant

    I wanted to post an update on my latest scare.

    My wife and I took an expensive, spur of the moment, trip to the Mayo Clinic in MN last Tuesday to get to the bottom of my elevated bilirubin level. I had blood tests and an MRCP last Wednesday and met with my doctor for results on Thursday. Everything came back completely normal. Bilirubin was not elevated, CA 19-9 was 10 (down from 11 in April). MRCP images were all normal too – no strictures or blockage of any kind. We came home to VA Friday evening. My Mayo doctor doesn’t want to see me again until early 2015 for my next follow-up scan.

    While I’m glad the results were all clear, I can’t explain why I was feeling poorly or why the local bilirubin blood test result came back high. My Mayo doctor said there are some differences in how bilirubin is tested/calculated from place to place.

    The doctor also recommended that I try “bulking up” my stools using metamucil to see if that helps with the chronic loose stools I’ve been having. I’m giving that a try…

    -Matt

    MattReidy wrote:
    Hi all,

    I’ve been feeling fatigued for a few weeks and has some blood work done this past Friday. I got the results and my total bilirubin is a bit high at 1.7 mg/dL – up from 0.5 mg/dL in April.

    My doctor suspects a stricture of/in my anastomosis and wants to do an MRI/MRCP to take a look and then if necessary, and ERCP to place a stent and open it back up.

    Does anyone have experience with anastomosis strictures that would like to share anything?

    I’m worried…

    Thanks!

    -Matt

    #80207
    marions
    Moderator

    Matt…..It is not unheard of, but we had few reports on stricture formation. I can’t recall the poster’s names. Hoping for someone out there to share their experiences with us. For the non-members reading our site please register so that we can hear from you as well.
    Hugs,
    Marion

    #80206
    iowagirl
    Member

    Matt…..no experience with what you have going on…but just wanted to let you know that I’m thinking about you. I know you’re worried…I would be too…right there with you on that. You will get an answer and you will deal with it. Keep us posted.

    Julie T.

    #80205
    mattreidy
    Participant

    Hi all,

    I’ve been feeling fatigued for a few weeks and has some blood work done this past Friday. I got the results and my total bilirubin is a bit high at 1.7 mg/dL – up from 0.5 mg/dL in April.

    My doctor suspects a stricture of/in my anastomosis and wants to do an MRI/MRCP to take a look and then if necessary, and ERCP to place a stent and open it back up.

    Does anyone have experience with anastomosis strictures that would like to share anything?

    I’m worried…

    Thanks!

    -Matt

    #80204
    mattreidy
    Participant

    Thank you all for the med suggestions. I’m not taking anything at the moment nor have I tried anything yet. I’ll look into it. xo

    #80199
    january
    Member

    Matt- have you tried Zenpep? It’s a life saver for my daughter.

    January

    #80198
    kvolland
    Participant

    Oh Matt, I feel your pain….I had my gallbladder out a few years ago and while not like having the resection surgery….fat is not my friend. I have found that bacon and fast food burgers (yes I will admit to both) are my kryptonite. I found that eating something high is carbs before hand helps some….so bread, pasta….okay french fries too. There is a prescription medication that helps bind the bile salts that may help….it’s called cholestyramine (Questran is one of the name brands). It’s often a powder form that you drink before you eat. I have heard a lot of good about that. Not had to use it myself. A little Immodium seems to fix it for me.

    The other things my GI doc told me was that sometimes the bile acid will wash back into the stomach (both with just gallbladder and with the Roux-en-Y) which can cause irritation of the stomach. This was causing me heart burn (yeah, okay we took the gallbladder out for that and I still have it….UGH!) so now I take Prilosec twice a day to reduce the acid. That has made a big difference for me.

    Ask your doc before adding anything but it might be worth a try….and Mark wishes he had your problem….everything constipates him so no problems with food for him. Hope this helps. Should have just taken the Prilosec and kept the darn gallbladder. :)

    KrisV

    #80197
    marions
    Moderator

    Matt….have you asked your physician about CREON, a pancreatic enzyme? It may help.
    Hugs
    Marion

    #80196
    mattreidy
    Participant

    Hello Everyone,

    I’m almost 5 months post-op and still battling daily abdominal cramps and diarrhea. The only regular meds I’m taking are a baby aspirin and multivitamin.

    I know it’s fairly common to have issues digesting fat without a gallbladder, but does anyone have any tips/suggestions/medications to help alleviate the symptoms besides the obvious (eating less fat)?

    Is it also the constant flow of bile into the intestines that causes this? Is there something I can take to absorb it?

    Thanks!

    -Matt

    Here are the details of my surgeries (I had a bile leak after the initial surgery so they had to go in and fix that the next day) and my outcome/diagnosis:

    OPERATIVE PROCEDURE:
    17-Jan-2014:
    1. Diagnostic laparoscopy.
    2. Hilar and celiac lymphadenectomy.
    3. Left hepatectomy.
    4. Roux-en-Y hepaticojejunostomy.
    5. Cholecystectomy.

    OPERATIVE PROCEDURE:
    18-Jan-2014:
    1. Abdominal exploration.
    2. Ligation of posterior bile duct branch.

    FINAL PATHOLOGY:
    A. Lymph nodes, gastric, dissection: Lymph node tissue,
    negative for malignancy.
    B. Soft tissue, new bile duct margin, excision: Negative for
    tumor.
    C. Left lobe of liver, gallbladder, extrahepatic bile duct and
    regional lymph nodes, Left hepatectomy, cholecystectomy and
    lymphadenectomy: Invasive, moderately to poorly differentiated
    cholangiocarcinoma is identified, forming a 2.5 x 1.4 x 0.5 cm mass
    involving the common hepatic and the left hepatic bile ducts. The
    tumor invades into periductal soft tissue. Perineural invasion is
    identified. The surgical margins including the hepatic parenchyma
    and the bile duct are negative for tumor. Small
    vessel invasion is identified but no major vessel invasion is seen.
    The gallbladder is negative for tumor. Multiple (9) lymph nodes are
    negative. The non-neoplastic parenchyma is negative for tumor.

    DIAGNOSIS:
    AJCC stage: pT2aN0 (7th edition)

    #80194
    gavin
    Moderator

    That’s great news about your wounds healing Matt. Hope that you enjoyed your bath too!

    Best wishes,

    Gavin

    #80193
    kvolland
    Participant

    Way to go Matt. Good thing to here. It’s amazing the things we celebrate now….who would have ever thought taking a bath would be so exciting. Mark was so happy when his port was not longer accessed and he could shower without it being a hassled covering it. Congrats on the clean scan and labs.

    KrisV

    #80192
    marions
    Moderator

    You go, dear Matt. Life can shake us up to the core, but our resilience will continue to prevail.
    Hugs,
    Marion

    #80191
    lainy
    Participant

    Dear Matt, hooray for no more wound caring! I can still remember what a great day that was for Teddy too. I loved that living life by Bonnie Mohr and am going to steal it for my Facebook. It is all so true! Still wishing you all the best and please do let us know how you are progressing down the road. Live, laugh, Love!

    #80190
    mattreidy
    Participant

    I got cut short a bit on my previous reply due to work…

    Latest medical update as of March: Clean scans and blood work – no recurrence. Decided not to do any adjuvant chemo.

    I’m honestly still in shock and wish I could wake up from this nightmare. I’m coming to terms with my mortality – which I guess most of us do, eventually. All of us except those taken swiftly and/or by accident at a young age. It’s giving me more appreciation for the little things in life and a better perspective, for sure.

    I reached a new milestone for me this Easter weekend – my surgical wounds healed to the point that I no longer need to care for them so I took my first bath in a tub (vs shower) since before my surgery in January. That was nice. Not having to spend time twice a day unpacking and packing open wounds is nice too. I’m sure my wife will appreciate me putting away all of the wound supplies and getting our bedroom looking less like a hospital room.

    Basically, I’m trying to just live fully, as if none of this has happened to me. My emotions have improved a lot but I still have triggers, songs, memories, thoughts, etc. that cause me to fall apart and into tears.

    The Gift of Life Transplant House in Rochester, MN has this on the wall and I’m finding it a good daily reminder. I hope others here like it too. It’s called Living Life – by Bonnie Mohr:

    Life is not a race – but indeed a journey. Be Honest. Work hard. Be choosy. Say “thank you”, “I love you”, and “great job” to someone each day. Go to church, take time for prayer. The Lord giveth and the Lord taketh. Let your handshake mean more than pen and paper. Love your life and what you’ve been given, it is not accidental – search for your purpose and do it as best you can. Dreaming does matter. It allows you to become that which you aspire to be. Laugh often. Appreciate the little things in life and enjoy them. Some of the best things really are free. Do not worry, less wrinkles are more becoming. Forgive, it frees the soul. Take time for yourself – plan for longevity. Recognize the special people you’ve been blessed to know. Live for today, enjoy the moment.

    This forum is GREAT – I really appreciate all the perspectives, information, feedback, and love that everyone here has.

    -Matt

    #80189
    mattreidy
    Participant

    Hi!

    You’re so sweet to ask! I’m well.

    After my recent check-up at Mayo I’m trying to just live as normally as possible and enjoy life. I’m back to working full time. I’ve been thrilled to focus again on family and things other than my health.

    My oldest son turned 19 on March 28th, my daughter turns 16 on April 30th, my youngest son turns 6 on May 23rd, and my third son turns 8 on June 29th.

    We’ve got vacation plans to head to a family house on a lake in NY in June and July.

    I’ll go back to Mayo in September for another check-up and I’m sure the scan anxiety will creep back up before then.

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