11 In Personal

How I Eat with a Challenging Illness

Morning ladies and Happy Friday!

August is Gastropersis Awareness Month and I thought I would share with you what it is and how I manage to eat with this illness. I am going to share today some of the health challenges I face, and how I keep wellness and nutrition in my mind, daily. Years ago, when learning about my Ehlers-Danlos diagnosis, I went to the hospital to undergo an X-Ray for how long it took for food to digest in my stomach, as I already has stomach issues diagnosed as “IBS” years ago and I was still having problems. I don’t like to necessarily talk a lot about my disease, but I do like to inform, and raise awareness, if someone else recognizes symptoms or is having difficulty.

Diagnosis

First, I should say, I don’t like to dwell on my health in my blog, but I do find it beneficial when i can spread awareness.

Many years ago, I was diagnosed with IBS, which is what I feel is a very generic or general term of someone with an irritated stomach,  constipation and problems  I almost feel like doctors diagnose people with IBS if they don’t know what is going on with their digestive systems, but know there are problems. Kind of a “blanket diagnosis” for stomach problems.  I took Miralax to help with motility. My stomach at times seemed as though it was at a stand still and I would still have symptoms of constipation, severe stomach pain, early fullness, bloating.

Fast forward years- and during the time I was diagnosed with Ehlers-Danlos, in 2008. My Gastroenterologist  doc suggested I get a test to have my colon Xrayed, which would show length of time food was digested a transit study.  The technician gave me a bowl of scrambled eggs ( powdered ) with a radioactive pills, along with dry toast to see just how long it would take to digest the eggs and food.,and see the pills.  I would be X-Rayed every 2 hours at intervals- Long story short, my body took hours to digest a simple meal like eggs and dry toast. It would be 4-5 hours before the food digested. So, I ended up with a diagnosis of Gastroperesis.

Gastroparesis is the literal paralysis of the stomach, characterized by WebMD.com as a condition that inhibits the stomach from emptying properly. Gastroparesis affects stomach contractions, which move food from the stomach into the large intestine where digested food is emptied.” With Ehlers-Danlos, many of the body systems are affected. Gastrointestinal is one and it is a rare condition as well.

With the persistent pain and the stress of not knowing for years what condition I  had, I had dropped weight. By the time I was diagnosed with EDS, I was 15 pounds thinner . So now, I am 120 pounds at 5 foot 9. My Bmi was 18 and my doc did not want me to lose more. For the past 10 years I have maintained this weight, due to eating mini meals throughout the day, that made digestion and eating with Gastroperesis a bit easier. With Gastroperesis, one gets full quickly, due to delayed emptying, the main reason I eat mini meals.

How I Manage

This however, does not keep me from enjoying meals out at restaurants, and making dinners at home. I feel, that no matter the condition, there are ways to work around it. Since I am adamantly against drinking my dinner from a straw, i devised a way for me to eat and enjoy meals as well. I do take medication in addition to miralax to help with this, which has also made a difference in what I can eat. I do need to be choosy with what foods I order, and always take home the remainder for the next day, quitting when full.

I used to joke with waiters when they would ask me if i wanted dessert, and say ” Come back in 5 hours and i ll let you know!”( slow digestion joke!)  One of the ways to eat that I discovered has helped me with my slow digestion is mini- meals. 

I have found throughout the years that eating more mini-meals throughout the day helps keep my metabolism burning, and continues the movement of my intestinal muscles. I must eat in moderation, as with Gastroperesis, more than, can result in being physically sick. I enjoy treats from time to time and don’t want to deprive myself of things i enjoy as well.

I also watch highly acidic foods. I love fruits and vegetables, but watch the high fiber. Too much fiber can make one bloated and constipated, which doesn’t help with the situation. There are times it is very frustrating and I wish I had the “iron gut” my husband has. I will also make chicken and fish with jasmine rice as I find these are “softer foods” and easier on my stomach. Proteins such as chicken and fish are usually good, salads are difficult for me to eat, as I have to avoid iceberg lettuce. As I mentioned, too much fiber can cause severe stomach pain. As much as I love beans ( butter beans, kidney beans etc) they can be hard to digest, so if I do have some it is a small amount.

Not only does it help to be choosy about what I can eat, I drink a fair amount of water. Water will aid in digestion as well. I purchased one of these  Simply Modern containers, and fill with ice water. It keeps the water cold for 48 hours and I fill this at least about 3 times a day.

I realize eating mini meals isn’t always easy for everyone, it would have been difficult to do when I taught as a teacher. I do find it doable as i am home all day, making meals easier to access.

Please note i am not a medical professional or doctor and am not offering medical advice. This is what has helped me.

So, to sum it up, I believe in most foods in moderation, even with a difficult condition like Gastroperesis. It can be managed, it is a matter of eating smaller meals throughout the day, and watching the types of foods I eat, making digestion easier.

I hope I have helped someone who may be suffering with symptoms.

Id love to hear from you in the comments. 

Have a wonderful  long weekend!

Jess xo

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11 Comments

  • Reply
    Emma Peach
    September 5, 2018 at 8:49 am

    My mum has diverticulitis and has to be very careful what she eats, especially now she has a colostomy bag. She eats little and often and avoids foods she know will irritate her stomach, such as onions and pickles. She used to love nuts but can’t eat them now either.

    Emma xxx
    http://www.style-splash.com

    • Reply
      Jess Jannenga
      September 5, 2018 at 11:23 am

      Oh, that is difficult to deal with as well. sorry to hear! I know there are certain foods i avoid as well.

  • Reply
    thisblondesshoppingbag
    September 1, 2018 at 2:58 pm

    I’m sure your sharing this condition is helping others. Just about every woman I know has digestion problems – mostly constipation. It does seem like doctors tell everyone they have IBS and maybe they are missing something important. I appreciate you sharing what you deal with; I know it isn’t always easy to talk about it and like I said, I think there are lots of women out there reading this and wondering if they have more than IBS. I know a few other women with the same condition gastroparesis, I had never heard about it until a few years ago. Eating small meals sounds like a good way for us all to eat!
    Thanks again for sharing Jess!
    xo,
    Kellyann

    • Reply
      Jess Jannenga
      September 2, 2018 at 11:05 am

      Thank you Kelly for your input. i know there are men out there with this, perhaps they don’t talk about it , or women do more.. I do hope I have helped someone with this, as it is important to know it is much more than IBS. Blogging from home allows me to eat mini meals, and I find it does help. With large portions at restaurants, I always take food home. but I am sure people do with or without Gastroperesis. There is help out there, and I would suggest if someone feels it is affecting their QOL, to get checked for it.

  • Reply
    Lisa D.
    September 1, 2018 at 9:12 am

    This was very interesting. I was not aware of a condition such as this. Glad you got it under control.
    Lisa

    • Reply
      Jess Jannenga
      September 2, 2018 at 11:06 am

      Thank you Lisa. I have it more managed now, but have been dealing with symptoms for many years. I appreciate you stopping by! xx

  • Reply
    Elle
    August 31, 2018 at 8:17 pm

    I am glad that you shared this post and you raised awareness about this. I also had the pleasure of dining in the hospital with that wonderful entrée of radioactive eggs . Lol. Same conclusion. I manage mine was small and frequent meals.
    But being on steroids long-term keeps weight on, so it balances out a bit!
    Hope you are well beautiful friend!
    ❤️❤️❤️
    Elle
    https://theellediaries.com/

    • Reply
      Jess Jannenga
      September 2, 2018 at 11:07 am

      Elle, we have a lot in common! It seems we both try the small/ frequent meals and know which foods are less likely to cause problems. Thanks for sharing that and as always popping by! I appreciate it. Hope you enjoy the longer weekend! xx

  • Reply
    Jodie
    August 31, 2018 at 9:26 am

    I didn’t realize you had to deal with this, Jess. At least you have found a way to deal with it and keep your health!
    Have a great weekend!!
    XOXO
    Jodie
    http://www.jtouchofstyle.com

    • Reply
      Jess Jannenga
      August 31, 2018 at 1:19 pm

      YEs, Jodie. Thank you. I have some tough days and I Love salads, but keep it to a minimum. The smaller meals throughout the day help.

  • Reply
    STYLECOME
    August 31, 2018 at 4:12 am

    Too appetizing

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