My Introduction
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Tagged: Ascending Cholangitis, Cured, Hope, immunotherapy, Keytruda, NED, SIBO
- This topic has 407 replies, 40 voices, and was last updated 2 years, 2 months ago by Jjet65.
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June 18, 2014 at 12:01 am #80203marionsModerator
Matt…..I consider a resection a “re-plumbing of the intestinal tract, a necessary procedure, but not without side effects. From what I have seen on this board, some people simply cannot digest fats without experiencing loose stool. In fact, the majority of people seem to suffer from loose stool rather than the annoying and at times painful constipation. What a trade off that is!
Feeling tired and weak may very well change for the better with more consistent and regular bowel movements.
So happy to hear that everything else has checked out perfectly. Congratulations.
Hugs,
MarionJune 17, 2014 at 9:32 pm #80202iowagirlMemberMatt, so glad to hear the good news that all really is going okay and nothing new to worry about. The metamucil may work……I know it’s what the GI doctors all say to do…..to level out the “water” issue in the colon. I had some trouble with the stuff…made me feel very bloated…but that was before surgery and while I still had an active bacterial infection apparently in my liver. Haven’t used it since and haven’t had to either….problem cleared up after surgery. My husband uses Metamucil after having a third of his colon removed (large, benign tumor 3 years ago) and has no problems with bloating from Metamucil. It seems to help him. He also had his gall bladder removed a number of years ago, so doesn’t have that either to help regulate things.
June 17, 2014 at 8:37 pm #80200lainySpectatorHi Matt, good news! Just a suggestion though, when Teddy was getting fatigued the ONC put him on B12 injections once a month and we could really see the difference. Important thing is the bottom line and that is good news!
June 17, 2014 at 7:23 pm #80208mattreidySpectatorI 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
June 10, 2014 at 7:00 pm #80207marionsModeratorMatt…..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,
MarionJune 10, 2014 at 3:56 pm #80206iowagirlMemberMatt…..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.
June 10, 2014 at 2:11 pm #80205mattreidySpectatorHi 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
June 10, 2014 at 2:05 pm #80204mattreidySpectatorThank 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
June 8, 2014 at 3:59 pm #80199januaryMemberMatt- have you tried Zenpep? It’s a life saver for my daughter.
January
June 8, 2014 at 3:43 am #80198kvollandSpectatorOh 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
June 8, 2014 at 12:47 am #80197marionsModeratorMatt….have you asked your physician about CREON, a pancreatic enzyme? It may help.
Hugs
MarionJune 8, 2014 at 12:24 am #80196mattreidySpectatorHello 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)April 22, 2014 at 5:30 am #80194gavinModeratorThat’s great news about your wounds healing Matt. Hope that you enjoyed your bath too!
Best wishes,
Gavin
April 21, 2014 at 10:56 pm #80193kvollandSpectatorWay 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
April 21, 2014 at 6:04 pm #80192marionsModeratorYou go, dear Matt. Life can shake us up to the core, but our resilience will continue to prevail.
Hugs,
Marion -
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