Gastroparesis

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crohnsfighter
crohnsfighter Posts: 689 Member
in Motivation and Support
Hi everyone,

I used to be on MFP awhile ago under a different name, but de-activated for awhile.

Does anyone else have Gastroparesis? It's a very difficult condition to get used to, as I also have Crohn's Disease. Things that will "work with my gut" and not feel like they're going to kill me, are hard to find. Not only that, but the list of foods that will work changes moment to moment.

I have a G.I. specialist following me, and 5 or so of his colleagues can't understand through all the tests what has happened to me or how Gastroparesis is working inside me. The only way to treat a flare-up is with I.V. Gravol and Morphine (or hydromorphone, depending on which E.R. doctor is on staff that night).

So I'm looking for anyone that may also have this disease. It's rarely talked about or mentioned, but when you couple it with Crohn's or Colitis (or any IBD), it can be crippling to everyday life.

Sorry for the long post (Yes, I'm Canadian, I apologize a lot).

Replies

  • Vune
    Vune Posts: 673 Member
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    How did you get diagnosed? I've been through a battery of tests for gastrointestinal pain that only responds to narcotics, but still no relief. The barium swallow showed slow digestion, but I did not receive a diagnosis from it. It's really terrible, and it always flares up when I'm stressed out. Our at least when I'm stress eating.

    I have a kidney transplant and a host of other chronic health problems caused by being born. Feel free to add me. I log in every day.
  • crohnsfighter
    crohnsfighter Posts: 689 Member
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    It's weird how I was diagnosed actually. I used to visit the ER monthly with chronic pain after eating, and I always told them I had Crohn's because that was my official diagnosis. However, the pain was always in my stomach area. I later on (through Googling and looking at the human anatomy) realized the pain was at the sphincter which connects my stomach to my small intestine. I told them this over and over until after about a year, one ER doctor listened to me and said he would do an X-Ray, found the inflammation, and decided it was Gastroparesis.

    Since then, treatments at hospitals have been much more efficient. I feel your pain, going through the ropes of testing is insane and can really drive through your bones and drain you from life.

    I try to log everyday, but today I haven't eaten yet, since I got out of the hospital yesterday and all I've had is water =\
  • natnlj
    natnlj Posts: 21 Member
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    I was diagnosed with Gastroparesis ten years ago and it has been the most difficult with weight issues. I was diagnosed with the radioactive egg followed by the CT scan and have been on several different medications since that time. I have seen three different physicians and a dietitian. Currently, I am on a low-fat diet of no fresh fruits or veggies, no fiber and lean protein meats. It is really frustrating trying to lose weight! I have tried juicing and shakes. While this helps my stomach pain, I have gained 25 lbs and cannot seem to lose it! If anyone out there has this issue, please let me know what has worked for them. Although I don't have any answers for you, I hope that in some way knowing that others share in some of your sympoms is a support to you as we can listen and compare diets and ways to help each other.
  • balvon
    balvon Posts: 3
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    I am very knowledgable with this disease as I have seen my husband deal with gastroparesis and crohns disease for like 15 years. They usually check for gastroparesis by doing a gastric empting study in nuclear medicine. The gastric dr my husband sees say the best thing is to stay with several small meals a day very low fat content and not too much ruffage. They also told my husband that going on a liquid diet of blended soups and shakes would help a lot. This is a life crippling diease and is very hard to deal with. And you are right what goes down well one day the next can cause a hospital run to the er. Are you also diabetic? Best of luck.
  • crohnsfighter
    crohnsfighter Posts: 689 Member
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    Thank you for the kind words!

    My G.I. specialist tried to make me eat certain foods, but the stress of having to eat specific things would send me to the hospital more often than I had hoped.

    One day, I hit rock bottom and took myself off of my meds (DO NOT do this without your doctor's approval as it is dangerous).
    I used to take Pentasa, Imuran, Rabeprezole, Iron pills, and a couple others.

    Since I stopped, I have eaten smaller meals, with more potato starches, bananas, softer breads, chicken breast, tilapia, and much more low-sodium (homemade) soups.

    I've gone from monthly hospital visits to 3-4 times a year, which is a huge improvement! Also, my crohn's ulcers have gone from 21 to 1.

    And to answer your question Balvon, I am not diabetic (not yet, I hope!). I hope that anything that has helped me can in turn help your husband as well. I will try to answer any questions as best as I can! The trouble is that each of these diseases is so adaptable to the person who carries it, it's unique to its host.

    Juicing and raw smoothies do not work for me, my veggies need to be cooked (usually boiled) so that they are soft enough to digest.

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