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Thread: Scope finally booked answers soon

  1. #1
    Newbie New User
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    Sep 2016
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    Scope finally booked answers soon

    Hello everyone,

    I made a post months ago about being worried about my symptoms etc. Iím not coming here to post about what you guys think it is or what not but I wanted to offer an update. I wouldíve found out some answers in September but had to cancel my scope because of my doctor being mildly incompetent and not taking my case of malignant hyperthermia seriously. Basically if you donít know what it is, i can have a fatal reaction to certain types of anesthesia due to a genetic defect on my RYR-1 gene. We found this out because my son was born with the ultra rare genetic muscle disease. Anyways, I needed to get a scope in a larger center in case of emergency surgery from complications and the fact that the hospital I was scheduled to do it had no ICU.

    With that said, a second specialist reviewed my symptoms of bright red blood with my stool, frequent bowel movements with sometimes nothing or a little stool coming out and tenesmus and he took them seriously. He booked me in January 17. I had a period of 4 months where all my symptoms went dormant. My stools returned to normal and no more bleeding. I felt great and then two weeks ago with the great baking my wife does over the holidays it came back with a vengeance. My blood work 6 months later still shows up as perfect. No anemia or low hemoglobin etc. Hereís to hoping itís not the big C but I can provide you all with a word of thanks that I really trained myself to let go of my anxiety. I have my moments still but I stopped stressing back in July and thatís when it seemed like everything went dormant. Anyways hope you are all doing good and thank you for pushing me to deal with my anxiety.

  2. #2
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    602
    dm,

    I appreciate your post. I have wondered about what follow up you may have had. Good luck to you with the scope. Do come back to this thread and give us the update.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  3. #3
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    Sep 2016
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    6
    Hello everyone

    Just got home from my colonoscopy. Doctor said no cancer and no polyps. Whatís been giving me this trouble this whole time is colitis. He gave me oral and suppository medication to control the inflammation. He took biopsies to confirm if it is chronic aka ulcerative colitis or an acute form of it. It was located in my rectum and lowest part of my colon. I have a follow up appointment with him in two months. I want to thank you all for the support and help you guys gave me. I want to thank Barry and pol18guy to give me the tough love to work on my anxiety. As a new father with a one year old at home it wasnít easy worrying about the worst and I have to say that I did the mistake of looking at doctor google this year but you guys really did help me to realize how much my anxiety was speeding up the progression of my symptoms. Thank you personally. I will touch base to give more updates if more things come out of this diagnosis but I am happy it is not CRC. I wish you all good fortune and my prayers are with you all as some of you continue your battle.

    Regards,
    Dave

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,331
    Thank you very much. JUMP on that anxiety, as it is a liar that steals your peace each time you contemplate that newborn bundle of joy. CRC at your age is nearly unheard of in any event. But, as you can see, anxiety is capable of producing over 100 symptoms that are associated with as many as 45,000 different illnesses (or more!).

    As to Google, it is only your friend after diagnosis - and your diagnosis is a fairly easy one and may actually be caused by... you guessed it... anxiety. There is a trend in our culture: information age > too much information > bad information sticks in the mind > anxiety > symptoms > more anxiety > more symptoms...

    Break the cycle!

  5. #5
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,426
    I’m pleased to read your latest update.
    Keep up with the Mbeverine (Buscopan) which I assume is the medication prescribed which will I’m sure keep the colitis in check.

    At times (with respect) it is essential to talk straight as I have had to do with myself on more than a few occasions.
    Worry is normal, allowing worry to take control and become anxiety can be a killer both mentally and physically.
    Anyway enough rambling I’m delighted you at last got a diagnosis.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  6. #6
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    602
    Great news Dave,

    I also appreciate you acknowledging the "Google chase" as a very misleading source. Thanks for posting. Keep us informed and celebrate with that one year old! That's where you need to focus your time! Enjoy life!

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  7. #7
    Newbie New User
    Join Date
    Sep 2016
    Posts
    6
    Thank you again. This past year was a very aggravating experience and I learned the hard way that you gotta be an advocate for your own health. Not all doctors have you in their best interest and my own doctor overlooked my symptoms due to my age and wanted to go as far as not book me in for a scope because my symptoms had disappeared. I wasnít contacted by my doctor either as to why I had cancelled the scope or what not afterwords. Radio silence was all I got. Same with my second referral to a new gastroenterologist, referral had no information about rectal bleeding for months on end and family history information. Needless to say I had to get upset with them. If I screwed up like that I my job I would be fire but whatever. The specialist skilled the consult and booked me in two weeks later when his office manager who is friends with a family member of mine gave him the real information that my doctor hadnít provided and after I made my doctor send the right information. With that said, Iím glad itís just a mild form of colitis in my rectum. Couldíve been a lot worse and Iím glad the meds they gave me are taking effect already because that was a tough 4 weeks during this flare up. As for your question Barry, they gave me mezavant xl and mesalamine suppositories. The pills are for inflammation caused by ulcerative colitis/Crohnís disease and the suppositories are used to treat ulcerative proctitis. As Barry has said in some of his posts to all forum viewers, take your health into your own hands people! You alone know for sure when something is really not right. And as pol18guy says work on that anxiety. Itís not easy as I still am working on it right now as we speak lol.

  8. #8
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,426
    Dave,
    Thats appalling by your doctor, thank goodness it wasn’t more serious.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  9. #9
    Newbie New User
    Join Date
    Sep 2016
    Posts
    6
    Yeah thatís what I told them. Itís what kept me looking at the positive throughout this whole thing, I wasnít losing weight, and my blood didnít show any red flags etc. I apologize for the countless autocorrect errors as I was typing that last post on my cellphone.

  10. #10
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,426
    Dave,
    Not the first time I’ve heard of Doctors Brush off, nor I suspect will it be the last.
    Apologies but I’m going to hammer home this message for those that read your post trail.
    Listen to the messages your body sends, consider sensibly without panic what your body tells you.
    If calmly and rationally you know something is wrong.
    Act and get a appointment with your doctor and don’t take NO for a answer.
    As Dave aptly said
    Be a advocate for your own health.
    Now, Dave get on with looking at life positively and enjoying life with the family.
    Well done mate
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

 

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