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Surgery Done

jennyj

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jennyj Collaborator
jennyj
Posted

I had my surgery July 18th. They ended up removing 18 inches of small intestine and two very large tumors. The tumors are benign but they are concerned because there are several other small tumors that they did not take out this time. They cleaned up the area around the two so they think they got the worst. It has been a very slow recovery. I am drinking Ensure until I can eat more. The most frustrating part was while in the hospital the food, not it's taste but because they did not know what gluten free was. I could only have small bites but they would send cookies, bread, fried chicken, gravy. My daughter stayed with me and went to the nurses station and raised a little ----. Thanks for the thoughts and prayers. I've really missed this site.

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jerseyangel Proficient
jerseyangel
Posted

Welcome back, Jenny :)

I'm glad to hear you're recovering nicely--I hope that continues.

Hospitals have a lot to learn about Celiac patients--I had surgery earlier this year, and even the nurses agreed it was best for me to supply all of my own food.

Take care.

Lisa Mentor
Lisa
Posted

Hey Jenny,

Glad to have you back with us again. You have been through the worst, so everything else is a down hill slide.

A speedy recovery!!! :)

darkangel Rookie
darkangel
Posted
Hospitals have a lot to learn about Celiac patients--I had surgery earlier this year, and even the nurses agreed it was best for me to supply all of my own food.

I'm amazed hospital dietitians don't know anything about celiac disease. That's pretty sad.

confusedks Enthusiast
confusedks
Posted

I can second that! They are terrible about celiac. I am glad you are doing better though. '

Kassandra

ravenwoodglass Mentor
ravenwoodglass
Posted

Glad your back and hope you recover soon.

gfpaperdoll Rookie
gfpaperdoll
Posted

Glad you are back & doing better after surgery.

Hospitals lease out the food operation to the lowest bidder. I would not eat any of it even if I was not gluten free. Most of it is awful & totally unhealthy.

I remember ... ;) when schools & hospitals had actual staff that cooked real food from the local supply of meat & veggies. Oh we used to love our lunch room ladies & their wonderful cooking. Of course each school was different depending on where you lived in the U.S. Now it seems everything is the same government issued cheapo trash food...

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  • Recent Activity

    1. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    2. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results. Thank you
    3. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to...
    4. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response.
    5. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes...
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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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