Need help with diet after a hemicolectomy....

Posted by smart1 @smart1, Sep 15 10:58am

This past year I was diagnosed with 2 primary NET's and had two surgeries to remove them. Since having a portion of small intestine/ileum removed (hemicolectomy), I've had a hard time with diet. I easily get a pain on my right side abdomen after just about anything I eat. After going through tests to rule anything else out, it appears it's just diet related and being prone to blockages. I've been given some good advice from my GI on some OTC meds, like a senna laxative regimen, simethicone products, and Nexium. They have been very helpful. But, I still continue to struggle with finding enough items to eat that will help alleviate the abdominal pain. I know this is minor in the scheme of things but it's frustrating. Any suggestions of vegetables, breakfast items, or diet planning resources for this situation? I feel very limited as to what I can eat. Help appreciated!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.

@smart1, I'm tagging fellow members @andrea5815 @hopeful33250 and @lillyann who may be able to offer their experiences with diet suggestions and meal planning.

Here are a couple of related discussions in the Colorectal Cancer group that you might also find helpful:
– What is a good diet after colon surgery? Are probiotics good? https://connect.mayoclinic.org/discussion/diet-after-total-colectomy/
– Rectal pain and diet post right hemicolectomy https://connect.mayoclinic.org/discussion/right-hemicolectomy-rectal-pain-and-diet/

Smart1, have you heard of the FODMAP diet?

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Thank you. The links are helpful and it sounds like I'm not the only one with pain. I just finished my prescription of Zifaxan for bacteria accumulation in my gut but I don't feel like it helped much. I'm still having issues of easily becoming bloated and having the pain. I'm pretty good at maintaining a healthy diet of lean protein, some fruit, and limiting my vegetables to carrots, zucchini, squash, spinach, and green beans. However, I was recently told green beans are not a good choice. I do struggle with breads, snacks, and sugars. I need to get better with(out) those. Like I mentioned, my food choices seem to be few. Hopefully I can get some insight. And, yes, I did try the Fodmap diet. I did feel better while on that diet and learned a few trigger foods which is what I think the diet is intended for. It's not a long term diet, correct? Also, it wasn't clear in the discussion above, are probiotics good? I do take them but have been told they probably aren't doing much good since I take laxatives daily.

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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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Hello @smart1

I would like to encourage you to attend Mayo Clinic's NETs virtual support group. It meets monthly, first Thursday in October at 5:30 p.m. EST. It meets via Zoom and we have members who have experienced different treatments. You will find this group helpful. I will put you on the list for an invitation when the next meeting is posted.

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@hopeful33250 Please add me to that zoom group, I hope to find the time to join as I am in the PST.
Thanks
@ce1b

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@ce1b

@hopeful33250 Please add me to that zoom group, I hope to find the time to join as I am in the PST.
Thanks
@ce1b

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Hello @ce1b

You will get a post prior to the next NETs support group meeting. Once you get the meeting notification, however, you will need to register in order to get the Zoom link. I'm sure you will find the meeting very helpful!

Have you been recently diagnosed with NETs? Please share your story as you are comfortable doing so,

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I was diagnosed with a 1.7cm NETs nodule in my left lung first part of September. I now have an appointment for a biospy on a hot lymph node next week. As I progress through the pre-treatment planning stage I"m trying educate myself on my "new normal". At 68 yrs of age, I have stopped working and cleared my schedule for what is next to come. Trying to maintain a positive outlook and zen mindset, I can offically state I have destessed at the moment.. and open to whatever comes next. After 68 solar cycle on the planet.. I'm in a good place with solid support network to help guide me. "Namaste" .

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@ce1b

I was diagnosed with a 1.7cm NETs nodule in my left lung first part of September. I now have an appointment for a biospy on a hot lymph node next week. As I progress through the pre-treatment planning stage I"m trying educate myself on my "new normal". At 68 yrs of age, I have stopped working and cleared my schedule for what is next to come. Trying to maintain a positive outlook and zen mindset, I can offically state I have destessed at the moment.. and open to whatever comes next. After 68 solar cycle on the planet.. I'm in a good place with solid support network to help guide me. "Namaste" .

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Thanks for your honest comments about your NET diagnosis, @ce1b. Educating yourself is so very important. The better you can advocate for yourself.

Many of us had our NETs found "incidentally" (i.e., doctors were doing a CT scan for something else). If you are comfortable sharing more, I'm wondering if you were having symptoms that led to this diagnosis?

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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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@hopeful33250

Hello @smart1

I would like to encourage you to attend Mayo Clinic's NETs virtual support group. It meets monthly, first Thursday in October at 5:30 p.m. EST. It meets via Zoom and we have members who have experienced different treatments. You will find this group helpful. I will put you on the list for an invitation when the next meeting is posted.

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yes tell me about this zoom meeting

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@annmarie408

yes tell me about this zoom meeting

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@annemarie408

Welcome to Connect! Here is the invitation to the support group meeting on Thursday. (I'll see that you get an invitation next month.)
https://connect.mayoclinic.org/comment/755682/
Please register in advance. I'll look forward to seeing you!!

Please share with me about your NETs journey. Is this a new diagnosis for you?

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@ce1b

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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@ce1b, this is all so new at the moment. I can see you're processing all aspects: absorbing complex information you never wanted to learn, navigating the healthcare system, moving from shock to acceptance, and weighing how to share the news once you've wrapped your own mind around this new reality. It's a lot.

It's a tough blow when you've made a concerted effort to be fit and to have a set back like NETs over which you have no control. But you're absolutely right that your overall state of good fitness will serve you well – as will you're attitude, which appears to be – okay, let's get this done. Or something to that effect.

There's no rush to tell family and friends. But as you do, you might consider how you might keep them updated without overtaxing you, like setting up a group email or an account on a website like CaringBridge.

May I ask, are you being seen at a major medical center like Mayo Clinic or cancer center? Will you get the treatment plan after the MRI next week?

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