Is colon a deciding factor and is not having one a clear indicator that after total gastrectomy surgery I’ll have dumping syndrome all of the time regardless if I eat or not or is this obsessive compulsive thoughts/catastrophizing?

Len, I think you already know you’re catastrophizing. Nevertheless this is a substantial procedure that will have an effect on your life. I wonder if the gastrectomy you’re facing is similar (or maybe identical) to the bariatric surgeries that are performed very commonly. If that’s the case then there are many sources of support for life after that surgery, though not so much here on the J-pouch forum. The lack of a colon shouldn’t have much effect on the behavior of your upper GI tract, and I don’t think it’s likely to impact your risk of dumping syndrome. One challenge will be getting enough good nutrition without exceeding the food volume you can tolerate, but this is a routine problem for the many folks who have (electively!) had roux-en-y gastric bypass for weight management. Good luck!

Hi, I have FAP with an IPAA, while I don't have same issues as you (that's the 'fun' of FAP), I may be able to give you some suggestions on where to get help.

This is what helps keep me (more) sane, I'm not a medical person but I've lived with FAP and a j-pouch for decades and now using what I listed below to help me deal with my  past year of fistula surgeries that I did not expect to deal with. I've learned to distract or put my mental focus externally, like exercise, learning a new skill, endless walks while picking up garbage and volunteering.

Here's my suggestions for helping you accept the new reality, mourn for what could have been and process your emotions. It sucks, no way around it, I've learned to "sit in my shit' (emotions) so I can put them in my past. Hopefully a few of these can help you.

1. OUTCOME DATA - Does your doctor have any data from past patients and their outcomes? I know Mayo Clinic shares data on surgery outcomes, short term and long term. I've been sharing my info with them for decades. A friend had a rectum pouch built there and the surgeon gave her a ton of data.

Ask him what your recovery will look like, ask them the specific questions you've listed and if they can't answer them to your satisfaction, ask if he knows someone who can.

Does the doctor know anyone who had a similar surgery that can talk to you about their recover and long term outcome?

2. DIET - Ask your doctor for a referral to a functional nutritionist that (hopefully) has experience with your digestive concerns, they can help you with food choices that would slow your digestion and reduce the chance of dumping syndrome.

3. WHOLE BODY PRACTITIONERS - Alternative or Eastern Medicine may give you relief. I've gone to an acupuncturist/naturopathic practitioners for over a decade, it's hard to explain how much this has improved my quality of life and reduced pain issues. Lately I've been dealing with sleep issues and tailbone area pain and a few needles helped with both. They can help with suggesting supplements such as enzymes to help you digest food, for example amino acids for dairy products.

I view eastern and western medicine as balancing each other, they both solve issues that the other one can't. Eastern medicine views the body as a whole system while western medicine often sees our bodies are mostly independent parts.

3. Reddit has AMA's on people who've had total gastrectomy surgery https://is.gd/KK3iE6

4. Also for the food issues and compulsive thoughts, if you can, find a Gut/Gastro/GI Psychologists who understand the gut and brain connection. From what I've been reading biofeedback and EDMR have a positive effect on eating, pain and negative thoughts. EMDR information.
Biofeedback is used at Mayo for chronic pain sufferers, they have a 30 day outpatient program.

I'm currently looking for an EMDR and/or GI psychologists in Seattle area, I recently learned about how they can improve my relationship with food, like seeing eating as stepping on landmines that won't go off for hours, and surgery related mental trauma. These practioners aren't easy to find.

5. EXERCISE - When your brain keeps going down rabbit holes shift your focus, move your body to help your brain shift it's focus. Go for a walk, count your steps, look at the trees, the piles of snow(or sand) and when your brain starts catastrophizing, acknowledge the thought and let it go. (this is walking meditation)

Don't judge your thoughts, don't let your brain pull you into that thought. This may only last a minute but if you continue to acknowledge the thought and let it go, the thoughts become less invasive and overwhelming.

Find exercise that you like and can do - from meditation, yoga, weight lifting, yoga, walking etc. It helps your brain process and work through your emotions. Do them daily, with a friend or group, even if it's just a 10 minute walk or 3 pushups. It will quickly improve your mood.

For example, Tai Chi - its a low impact, slow moving form of exercise and meditation. There are lots of free intro and classes on you-tube. It's a good way to keep your body flexible and also connect your brain to your body. When we go through surgeries, we often disconnect them to save us from dealing with the pain etc.

If you don't want to walk outside, visit a museum, arboretum , zoo or even Costco, focus on what you see and less on the walking, you'll walk and move more than you realize.

Pelvic Floor Exercises to reduce leakage and accidents. This only takes a few minutes a day but is necessary as we age with a j-pouch and our muscles get weaker. You can do them for a few seconds while your sitting.

Find exercise that you like and can/will do - from meditation, yoga, weight lifting, yoga, walking etc. It helps your brain process and work through your emotions. Do something daily, solo, with a friend or group, even if it's just a 10 minute walk or 3 pushups. It will quickly improve your mood and you'll focus on how exercise has made you stronger, faster walker, more flexible etc.

6. JOURNAL- Get the thoughts out of your head by doing a daily 20-30 minute "brain dump" of your thoughts on paper. You don't have to write well, or neat, just write. The thought  writing can be thrown away after you're done, no need to read or save. It's just a way to clear the shitty thoughts out of your head.

7. POUCH SUPPORT DISCUSSIONS - St Mark's Hospital in the UK has monthly webinars related to IPAA / pouches on a huge range of subjects. I am impressed with how they view pouch support as holistic. This one is on pouch emptying and biofeedback and  Biofeedback and the importance of the pelvic floor in pouch care.They cover a wide range of topics.

8. AI/ CHATGPT - Using AI chat LLM (large language models) to research your upcoming surgery and outcomes, what specific medical terms mean and other related questions. While some aren't a fan of using this to learn about your medical issues, I've found it helpful to understand my current surgeries, surgery success rate and also describe what each type of polyp I have in my EGD report.

I also use it for 'what should I eat' after my fistula surgeries, the post-op document and eating instructions from my surgeon what useless and created unnecessary pain. For me, high fiber or 'regular american diet' was wrong, I needed a low fiber diet and laxatives don't work with my j-pouch.

Depending on the one you use, it can give you links to research papers and other relevant sites. My current favorite is Perplexity, it's connected to the internet and 'live' information. ChatGPT is not and info is 2 months old. Gemini was recently updated but you have to sign in through your or a google account. **Use critical thinking skills when reviewing the AI answers, sometimes it hallucinates but overall it does a great job and you can ask more clarifying questions.

This is long, I know how frustrating it is not to have answers and no one who can grasp or understand what you're going through. That makes it scarier and doesn't help you. If you don't feel like you're being heard or not getting the answers you need, advocate for yourself. If they can't answer them, ask them who can.

I yelled at my surgeon after I felt he gaslit me that the 2nd surgery was not what he told me 2 times previously. If I don't stick up for myself, who will? He inadvertently gave me some data on surgery success rate that was not previously shared. He also has been more empathetic and listens better after our 'disagreement'.

I hope your surgery goes well and you're quality of life is much better than you anticipate.
Cheryl

@Cheryll posted:

Hi, I have FAP with an IPAA, while I don't have same issues as you (that's the 'fun' of FAP), I may be able to give you some suggestions on where to get help.

This is what helps keep me (more) sane, I'm not a medical person but I've lived with FAP and a j-pouch for decades and now using what I listed below to help me deal with my  past year of fistula surgeries that I did not expect to deal with. I've learned to distract or put my mental focus externally, like exercise, learning a new skill, endless walks while picking up garbage and volunteering.

Here's my suggestions for helping you accept the new reality, mourn for what could have been and process your emotions. It sucks, no way around it, I've learned to "sit in my shit' (emotions) so I can put them in my past. Hopefully a few of these can help you.

1. OUTCOME DATA - Does your doctor have any data from past patients and their outcomes? I know Mayo Clinic shares data on surgery outcomes, short term and long term. I've been sharing my info with them for decades. A friend had a rectum pouch built there and the surgeon gave her a ton of data.

Ask him what your recovery will look like, ask them the specific questions you've listed and if they can't answer them to your satisfaction, ask if he knows someone who can.

Does the doctor know anyone who had a similar surgery that can talk to you about their recover and long term outcome?

2. DIET - Ask your doctor for a referral to a functional nutritionist that (hopefully) has experience with your digestive concerns, they can help you with food choices that would slow your digestion and reduce the chance of dumping syndrome.

3. WHOLE BODY PRACTITIONERS - Alternative or Eastern Medicine may give you relief. I've gone to an acupuncturist/naturopathic practitioners for over a decade, it's hard to explain how much this has improved my quality of life and reduced pain issues. Lately I've been dealing with sleep issues and tailbone area pain and a few needles helped with both. They can help with suggesting supplements such as enzymes to help you digest food, for example amino acids for dairy products.

I view eastern and western medicine as balancing each other, they both solve issues that the other one can't. Eastern medicine views the body as a whole system while western medicine often sees our bodies are mostly independent parts.

3. Reddit has AMA's on people who've had total gastrectomy surgery https://is.gd/KK3iE6

4. Also for the food issues and compulsive thoughts, if you can, find a Gut/Gastro/GI Psychologists who understand the gut and brain connection. From what I've been reading biofeedback and EDMR have a positive effect on eating, pain and negative thoughts. EMDR information.
Biofeedback is used at Mayo for chronic pain sufferers, they have a 30 day outpatient program.

I'm currently looking for an EMDR and/or GI psychologists in Seattle area, I recently learned about how they can improve my relationship with food, like seeing eating as stepping on landmines that won't go off for hours, and surgery related mental trauma. These practioners aren't easy to find.

5. EXERCISE - When your brain keeps going down rabbit holes shift your focus, move your body to help your brain shift it's focus. Go for a walk, count your steps, look at the trees, the piles of snow(or sand) and when your brain starts catastrophizing, acknowledge the thought and let it go. (this is walking meditation)

Don't judge your thoughts, don't let your brain pull you into that thought. This may only last a minute but if you continue to acknowledge the thought and let it go, the thoughts become less invasive and overwhelming.

Find exercise that you like and can do - from meditation, yoga, weight lifting, yoga, walking etc. It helps your brain process and work through your emotions. Do them daily, with a friend or group, even if it's just a 10 minute walk or 3 pushups. It will quickly improve your mood.

For example, Tai Chi - its a low impact, slow moving form of exercise and meditation. There are lots of free intro and classes on you-tube. It's a good way to keep your body flexible and also connect your brain to your body. When we go through surgeries, we often disconnect them to save us from dealing with the pain etc.

If you don't want to walk outside, visit a museum, arboretum , zoo or even Costco, focus on what you see and less on the walking, you'll walk and move more than you realize.

Pelvic Floor Exercises to reduce leakage and accidents. This only takes a few minutes a day but is necessary as we age with a j-pouch and our muscles get weaker. You can do them for a few seconds while your sitting.

Find exercise that you like and can/will do - from meditation, yoga, weight lifting, yoga, walking etc. It helps your brain process and work through your emotions. Do something daily, solo, with a friend or group, even if it's just a 10 minute walk or 3 pushups. It will quickly improve your mood and you'll focus on how exercise has made you stronger, faster walker, more flexible etc.

6. JOURNAL- Get the thoughts out of your head by doing a daily 20-30 minute "brain dump" of your thoughts on paper. You don't have to write well, or neat, just write. The thought  writing can be thrown away after you're done, no need to read or save. It's just a way to clear the shitty thoughts out of your head.

7. POUCH SUPPORT DISCUSSIONS - St Mark's Hospital in the UK has monthly webinars related to IPAA / pouches on a huge range of subjects. I am impressed with how they view pouch support as holistic. This one is on pouch emptying and biofeedback and  Biofeedback and the importance of the pelvic floor in pouch care.They cover a wide range of topics.

8. AI/ CHATGPT - Using AI chat LLM (large language models) to research your upcoming surgery and outcomes, what specific medical terms mean and other related questions. While some aren't a fan of using this to learn about your medical issues, I've found it helpful to understand my current surgeries, surgery success rate and also describe what each type of polyp I have in my EGD report.

I also use it for 'what should I eat' after my fistula surgeries, the post-op document and eating instructions from my surgeon what useless and created unnecessary pain. For me, high fiber or 'regular american diet' was wrong, I needed a low fiber diet and laxatives don't work with my j-pouch.

Depending on the one you use, it can give you links to research papers and other relevant sites. My current favorite is Perplexity, it's connected to the internet and 'live' information. ChatGPT is not and info is 2 months old. Gemini was recently updated but you have to sign in through your or a google account. **Use critical thinking skills when reviewing the AI answers, sometimes it hallucinates but overall it does a great job and you can ask more clarifying questions.

This is long, I know how frustrating it is not to have answers and no one who can grasp or understand what you're going through. That makes it scarier and doesn't help you. If you don't feel like you're being heard or not getting the answers you need, advocate for yourself. If they can't answer them, ask them who can.

I yelled at my surgeon after I felt he gaslit me that the 2nd surgery was not what he told me 2 times previously. If I don't stick up for myself, who will? He inadvertently gave me some data on surgery success rate that was not previously shared. He also has been more empathetic and listens better after our 'disagreement'.

I hope your surgery goes well and you're quality of life is much better than you anticipate.
Cheryl

Beautiful!