Need help with diet after a hemicolectomy....

yes tell me about this zoom meeting

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My NETs was found during an episode of jaundice, where a bile duct was blocked by gallbladder stones. During that hospital visit a spot was found on the lung in an X-ray. A PET scan was performed and cancer was diagnosed. A biopsy was completed a week later and NETs was confirmed. No other symptoms have been experienced.

It’s been a whirlwind of activity sense the diagnosis over the last 3 weeks where doctors and procedures are have been assembling to complete a treatment plan. Next week an MRI has been added to an already full schedule.

As I take in an overwhelming amount of information from doctors and staff, whose names I can barely remember, along with the appointments I have come to the conclusion that this team is somewhat fractured. Or maybe siloed is a better term.

Instead of getting calls and appointments from the different disciplines involved there seems to be a need for a single point of contact or traffic manager to keep it all sorted.

I understand this is all a precursor to formulating a treatment plan but it seems somewhat disjointed. Or maybe it’s just me and my coping skills. Anyway the treatment plan will be communicated 5 weeks after the initial finding so I’m a little less than 2 more weeks of living in moment.

As a side note prior to the jaundice I was and am a healthy living senior who leads an active lifestyle and consider fit for my age as my daily routines included regular workouts, cardio, perfect blood pressures, and not on any medications.

I will hate to see all my efforts to stay fit be devastated by the cancer or the treatments. Yet as a flip side I am strong in stature to take on the disease. (For now)

My mind is such that I consider this a battle for my life, as someone that lives a schedule and structured life, I’m struggling with the unknowns that I am not able to quantify or control.

Add to all of that is the human factor, of family and friends. Who to share this information with and when. It’s really a dark subject that when shared makes people question their morality and test their faith.

I have come to the conclusion that getting old sucks. I also feel the need to weight out my treatment options as ultimately I am my best advocate.

I suspect that there are many people facing life altering illnesses that are going through the same processes.

I think I’ll have a tee-shirt printed with the Dylan Thomas poem on it.. “Do not go gentle into that good night”. It seems appropriate for me.

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Hello @smart1,

I'm glad that @colleenyoung tagged me for this discussion. As I've had three surgeries for NETs in the upper digestive tract (duodenal bulb) over a period of 13 years, I understand the importance of eating foods that don't upset the digestive tract and add enough fiber and nutrition for healthy living.

I'm glad that you found the FODMAP diet helpful. I too worked with it and also discovered the trigger foods. After the initial 30 days, I was able to add in foods that I could tolerate. My experience led me to the understanding that gluten was a food to have in small amounts. Is that true for you as well?

Being prone to blockages is quite common with digestive tract surgery. I start the day with a liquid nutrition drink. I use Atkins as it is lower in carbs that all of the others and also has more fiber than most. I put it in a blender and add some fruit (usually half of a banana) and perhaps some frozen fruit that I keep on hand. I find that starting the day with liquids is a great help.

As I also have diverticulitis, I avoid laxative products with senna. For me, senna causes a lot of abdominal pain. I try to get fiber from Metamucil and add Miralax if I need more help with consitipation.

Vegetables are best cooked. I like to roast veggies with olive oil. It is a very tasty and helps get more nutrition in a more easy to digest way.

They type of foods you eat and the way you cook them are all important. Will you share with me some of your other food choices?

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My NETs was found during an episode of jaundice, where a bile duct was blocked by gallbladder stones. During that hospital visit a spot was found on the lung in an X-ray. A PET scan was performed and cancer was diagnosed. A biopsy was completed a week later and NETs was confirmed. No other symptoms have been experienced.

It’s been a whirlwind of activity sense the diagnosis over the last 3 weeks where doctors and procedures are have been assembling to complete a treatment plan. Next week an MRI has been added to an already full schedule.

As I take in an overwhelming amount of information from doctors and staff, whose names I can barely remember, along with the appointments I have come to the conclusion that this team is somewhat fractured. Or maybe siloed is a better term.

Instead of getting calls and appointments from the different disciplines involved there seems to be a need for a single point of contact or traffic manager to keep it all sorted.

I understand this is all a precursor to formulating a treatment plan but it seems somewhat disjointed. Or maybe it’s just me and my coping skills. Anyway the treatment plan will be communicated 5 weeks after the initial finding so I’m a little less than 2 more weeks of living in moment.

As a side note prior to the jaundice I was and am a healthy living senior who leads an active lifestyle and consider fit for my age as my daily routines included regular workouts, cardio, perfect blood pressures, and not on any medications.

I will hate to see all my efforts to stay fit be devastated by the cancer or the treatments. Yet as a flip side I am strong in stature to take on the disease. (For now)

My mind is such that I consider this a battle for my life, as someone that lives a schedule and structured life, I’m struggling with the unknowns that I am not able to quantify or control.

Add to all of that is the human factor, of family and friends. Who to share this information with and when. It’s really a dark subject that when shared makes people question their morality and test their faith.

I have come to the conclusion that getting old sucks. I also feel the need to weight out my treatment options as ultimately I am my best advocate.

I suspect that there are many people facing life altering illnesses that are going through the same processes.

I think I’ll have a tee-shirt printed with the Dylan Thomas poem on it.. “Do not go gentle into that good night”. It seems appropriate for me.

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I apologize for the late reply. Thank you for the information above. One thing I got out of your reply was the use of senna laxatives. I recently started having a different type abdominal pain then what I experienced previously. I have diverticulosis and upon reading your experience I stopped taking the senna laxative. The pain went away! I am now back to taking Miralax but making it a nightly regimen rather then earlier in the day. That seems to help with not having as many "emergency" issues that is inconvenient when out and about. So thank you. One thing solved! One thing I'm confused on though, is the use of both Metamucil and Miralax. Isn't Metamucil for when having issues with diarrhea and Miralax is for constipation? Using both together is confusing to me. I seem to have issues with constipation, but when I take too much Miralax than comes diarrhea. So I've been trying to take a "scheduled" dose each day so that I don't get to that point. Do you have any suggestions regarding my confusion? Maybe your help might make a difference that I'm not aware of.

My diet is not great. I don't feel like I'm getting enough to eat and probably not enough of what a daily intake should be of veggies and fruits. I usually don't eat breakfast since I feel limited to egg whites w/spinach or a not-too-ripe banana. Lunch usually consists of a baked potato and small salad or half of a sandwich with fruit. Dinner is usually chicken and vegetables. Veggies like zucchini, squash, or carrots. All of which are not my favorite. I was eating a lot of green beans since the Fodmap diet said it was a good choice but I've recently been told by my GI office that they can cause a lot of bloating. Snacks are usually almonds, strawberries, and recently I've been eating Crispbread with peanut butter and sometimes jelly. Dessert - is a problem. I try to stay away from chocolate but I do partake in frozen yogurt, ice cream, caramels, or maybe some gumdrops. Not good choices, I know.

I was used to eating a large variety of foods and it just seems my diet is so limited that it makes it difficult and much less enjoyable.

Again, I realize a small price to pay compared to so many other people going through much more difficult issues. It's hard to not feel quilty.

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Thank you for the kind words and advice. I can certainly set up a group chat or email to keep family and friends apprised of my status. Great idea! And you are right there is no rush to share my health problems with anyone.

Yes I am being cared for by a major cancer center not far from my home with a tumor board finalizing the treatment plan. That is now scheduled for 10/12/22.

After today I have a solid understanding of treatments and options once the treatment plan is communicated.

My post yesterday was somewhat bad timing as my brother’s best friend passed with lung cancer earlier in the day which prompted a call from my sister to share the news. That hit pretty hard listening to her summary of his journey.

On reflection he was not nearly as health conscious as I have been and I know everyone’s story is different. I have concluded I will be the success story in this journey. I have unfinished goals yet to accomplish. I will let that be my motivation to push through the treatments.

I know they will not be without challenges, but I think I’m in a good spot. I’ve got 1 or 2 more umbilicals to connect to that will help me on my path to the “new normal”.

I do struggle with how palliative care and end of life care will look. As I strive to organize everything around me and at some point I know ultimately I will have to trust in the process.

BR
CEB

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Hello @ce1b

It sounds as if you are getting into a good mind-set to deal with this unexpected diagnosis. I never had symptoms of NETs before they were discovered, and I was quite active as well. It is a shock to find your healthy lifestyle turned upside down by a cancer diagnosis.

As you mentioned the impact of hearing your brother's best friend dying of cancer, I would encourage you not to think of his journey as applying to you. It can easily sway you from a positive attitude and positivity goes a long way when you are dealing with cancer. Remember, every cancer is different as is everyone's treatment plan. His journey does not have to be the same as yours.

I see that the tumor board will be meeting on Oct. 12. Will you get the results of their consult soon after that?

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The pretreatment tests now include a brain scan. This has pushed the treatment plan back to the 18th. The doctors should have a plan by then.

In the interim I am planning a second opinion. Not that I don’t trust the doctors but just to insure I have a full understanding of the options.

I believe this will give me confidence in knowing I going down the right path.

Blessings to all that are on this journey.

CE1B

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