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Thread: Problems eating post surgery

  1. #1
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    Problems eating post surgery

    My mom is 3 months removed from colon cancer surgery. Since her operation to remove the cancer she has lost her sense of taste & smell. This in return is making her not eat since food taste disgusting when she tires to eat. The doctors can't seem to tell us why this is happening or what they are doing to fix this problem. Right now she is on a feeding tube and the medication TPN to give her the calories that she needs, she has lost 40 pounds since the surgery. We are looking for any help or direction from anyone who has dealt with this before.

  2. #2
    Moderator Top User Fourlegsgood's Avatar
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    Quote Originally Posted by Ericjb View Post
    My mom is 3 months removed from colon cancer surgery. Since her operation to remove the cancer she has lost her sense of taste & smell. This in return is making her not eat since food taste disgusting when she tires to eat. The doctors can't seem to tell us why this is happening or what they are doing to fix this problem. Right now she is on a feeding tube and the medication TPN to give her the calories that she needs, she has lost 40 pounds since the surgery. We are looking for any help or direction from anyone who has dealt with this before.

    I am sorry to hear about your mom. We all lose weight during / after surgery and eating is not easy because of the different bowel habits. You do not say much about your mothers general health or fitness / age. Is she quite well generally and has she got over the operation and is moving around normally and getting exercise? Getting back to normal life and doing stuff to work up an appetite is important in my view. Also, is she on chemo as that can affect taste and smell?

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  3. #3
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    Quote Originally Posted by Fourlegsgood View Post
    I am sorry to hear about your mom. We all lose weight during / after surgery and eating is not easy because of the different bowel habits. You do not say much about your mothers general health or fitness / age. Is she quite well generally and has she got over the operation and is moving around normally and getting exercise? Getting back to normal life and doing stuff to work up an appetite is important in my view. Also, is she on chemo as that can affect taste and smell?

    Nick
    Thank you for responding Nick. That is the weird part, all of her vitals and blood work come back normal, we like to say she is the healthiest sick person we know. She is currently back in the hospital due to the fact she has not been eating and is receiving TPN as a supplement. She is rather weak and is bed ridden for now. She has PT and is doing exercises in bed. The doctors don't know what is causing her not to eat. She is off the chemo since the surgery. Since she is not seeing any results in the 3 month since she is starting to get depressed because she feels that nothing is working for her. We have told her that it takes time and everyone recovers differently, but we are at the stage that if she doesn't start eating soon she will be causing more damage to her body and organs. She has this fear that every time she eats she is going to get sick, which isn't helping the matter. She has spoken to people in the hospital about this several times, but no one has tried to help her get over that fear. Any insight or experience you might have would be greatly appreciated.

  4. #4
    Super Moderator Top User Baz10's Avatar
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    Eric,
    Really sorry to read of your moms situation which does take me back to my status post surgery.
    I lost well over 30 lbs due to Ileus (where the large bowel literally stops working) and had zero food intake in 3 weeks.

    Question
    Has you’re mom had normal bowel movements.
    Q
    have they investigated or considered if it is Ileus.
    Note,
    Whilst I had Ileus and for two months I didn’t feel like eating at all as whatever tasted of cardboard, even tea or coffee, juices, even I’ve cream was tasteless and to be frank that put me off eating completely.
    Two things my surgeon insisted I ate and drank were
    Mashed bananas and fresh lemon drinks NOT the purchased bottle types.

    Otha are easy to prepare, mashed bananas speaks for itself.
    Lemon drink, heat the lemons in a microwave for 10 seconds, roll them between your hands, cut and Squeeze and strain through a sieve, add sugar to taste and dilute either with hot water, allowing to stand and cool, or
    dilute with any type of lemonade or whatever, preferably those that are NOT sugar free.

    Amythings worth a try to stimulate her appetite, but if like myself everything was tasteless or tasted yughh the simple things as above can act as a stimulant.
    Ask the clinical team If it is Ileus.
    Not suggesting the above is the answer, but still worth a try.
    Good luck and please keep us updated.
    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.

  5. #5
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    Quote Originally Posted by Baz10 View Post
    Eric,
    Really sorry to read of your moms situation which does take me back to my status post surgery.
    I lost well over 30 lbs due to Ileus (where the large bowel literally stops working) and had zero food intake in 3 weeks.

    Question
    Has youíre mom had normal bowel movements.
    Q
    have they investigated or considered if it is Ileus.
    Note,
    Whilst I had Ileus and for two months I didnít feel like eating at all as whatever tasted of cardboard, even tea or coffee, juices, even Iíve cream was tasteless and to be frank that put me off eating completely.
    Two things my surgeon insisted I ate and drank were
    Mashed bananas and fresh lemon drinks NOT the purchased bottle types.

    Otha are easy to prepare, mashed bananas speaks for itself.
    Lemon drink, heat the lemons in a microwave for 10 seconds, roll them between your hands, cut and Squeeze and strain through a sieve, add sugar to taste and dilute either with hot water, allowing to stand and cool, or
    dilute with any type of lemonade or whatever, preferably those that are NOT sugar free.

    Amythings worth a try to stimulate her appetite, but if like myself everything was tasteless or tasted yughh the simple things as above can act as a stimulant.
    Ask the clinical team If it is Ileus.
    Not suggesting the above is the answer, but still worth a try.
    Good luck and please keep us updated.
    Barry
    Thank you Barry for your response. I'm not sure if Ileus was ever mention but I will be sure to bring it up with her doctors. She is still suffering with bouts of diarrhea, but that might because by the supplement she is taking. We will give these a try and I will keep you posted. Thank you again.

    Eric

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Post-transplant, I had zero inclination to eat. I was prescribed the synthetic THC drug called Marinol to stimulate my appetite. I needed it less than one week and it "jump started" my appetite sufficiently to where I could eat. However, even afterward for a period of time I had to eat from a sense of duty.

    It seems clear that some level of depression has crept in and is working against her. I also had to force myself to get out of the hospital bed and walk. You might ask about anti-depression and anti-anxiety meds (Trazodone, for example, is both) as those, on a short course, might lift her spirits just enough to get her through all of this.

    Anti-emetic drugs such as Zofran, possibly in concert with Ativan might also help, as once nausea is conquered and separated in time from eating, her mind may not make the connection or association between the two. If no physical cause is found, it most certainly points to her mental state - which can be very powerful indeed.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
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    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
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    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
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    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
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    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
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    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, treatment with Imbruvica (Ibrutinib) or clinical trial of Interleukin2 being considered.

    To date: 1 cancer, relapse, 2 cancers, then 3 cancers simultaneously, 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  7. #7
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    Quote Originally Posted by po18guy View Post
    Post-transplant, I had zero inclination to eat. I was prescribed the synthetic THC drug called Marinol to stimulate my appetite. I needed it less than one week and it "jump started" my appetite sufficiently to where I could eat. However, even afterward for a period of time I had to eat from a sense of duty.

    It seems clear that some level of depression has crept in and is working against her. I also had to force myself to get out of the hospital bed and walk. You might ask about anti-depression and anti-anxiety meds (Trazodone, for example, is both) as those, on a short course, might lift her spirits just enough to get her through all of this.

    Anti-emetic drugs such as Zofran, possibly in concert with Ativan might also help, as once nausea is conquered and separated in time from eating, her mind may not make the connection or association between the two. If no physical cause is found, it most certainly points to her mental state - which can be very powerful indeed.
    Thank you for your response. She is taking Marinol which is working a little, she does crave food but just can't get to that point to eat. I will ask her doctor about the anti depression and anxiety medication and see if these might be a better way to go. It mostly seems like a mental disconnect with the brain and stomach not on the same page. Trying to figure out a way to reboot her system to achieve this.

  8. #8
    Super Moderator Top User po18guy's Avatar
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    There may be a bit of a phobia or psychological disinclination to eat involved. Does the facility have a psychologist on staff? That would seem to be an avenue to investigate as well.

 

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