Gastroparesis with severe symptoms!

Posted by shimmerpixie @shimmerpixie, Mar 5, 2012

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand 🙁

I was diagnosed , with Gastroparsis a couple years back, also have Barrett’s disease & 2 ulcers in my esophagus , that tend to bleed & drops my hemoglobin To dangerous levels .
Has anyone else have any of these problems, that can give me some dietary tips ?

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Hi @sickirishlass,

I’d like to add my welcome, and also let you know that I moved your message and combined it with this existing discussion. As @fourof5zs mentioned, I thought it would be beneficial for you to be introduced to the many members who are discussing much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Feel free to post your concerns and tag members in these discussions as well, about Barett’s esophagus:

– Barrett’s esophagus https://connect.mayoclinic.org/discussion/barretts-esophagus-1/
– Barrett's esophagus to Esophageal cancer https://connect.mayoclinic.org/discussion/barretts-esophagus-to-esophageal-cancer/

May I ask if you could share a few more details, @sickirishlass? How are you coping and managing your symptoms at present?

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I put myself on a liquid/soft food diet, & still getting Severe nausea and upset even throwing up. My hemoglobin keeps going low because the ulcers in my esophagus tend to bleed , my hemoglobin went to 4.3 at the beginning of the month while getting blood I had a heart attack . All the gastrologist I saw tell me there’s not much more they can do for me. I am on a lot of medications. I will be going to the Mayo Clinic on Tuesday & hopefully I’ll get some answers. I have a constant tummy-ache , with bloating and nausea ,

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I am a 39 year old female that was diagnosed with Gastroparesis last year after a decade of "issues". It never bothered me before this past year but the symptoms have drastically worsened. I am seeing several GI Specialists in my area and one at the UW Wisconsin Hospital in Madison. They have had no real answers for me in regards to treatment, management, dietary, etc… I suffer from severe constipation with excessive flatulence (farting), bloating, pain and distention. Even Miralax and Milk of Magnesia daily hasn't helped. It has taken over my life. I am a very active outdoors woman and have little to NO energy now. I don't have the vomiting like most. Just the other symptoms of constipation listed above. I also developed some Hemmorrhoids which have been difficult to manage as well.

Since I haven't had much help or testing done this past year, I am looking to going to Mayo Clinic in Rochester, MN and was curious to here about others opinions and experiences with the specialists there and in general of how you're living with this disease and the complications and health issues that accompany it. It has greatly affected my mental health but go to therapy weekly.

Thank you anyone who might be able to offer advice or suggestions! Much love to all of you going through this or similar health issues.

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I was just Admitted thru ER my hemoglobin dropped from 9.0on Monday to 5.6 today, giving me 2 units so I can make it to Mayo on Tues . I can tell my ulcer is bleeding. OH BOY

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@sickirishlass

I was just Admitted thru ER my hemoglobin dropped from 9.0on Monday to 5.6 today, giving me 2 units so I can make it to Mayo on Tues . I can tell my ulcer is bleeding. OH BOY

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@sickirishlass That does not sound good. Is there someone with you? I hope you are not traveling to Mayo alone. I am sure the transfusions helped. My hemoglobin and hematocrit dropped precariously low when I was pre-transplant and I was admitted to the hospital and had a few transfusions.
JK

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@sickirishlass

I was just Admitted thru ER my hemoglobin dropped from 9.0on Monday to 5.6 today, giving me 2 units so I can make it to Mayo on Tues . I can tell my ulcer is bleeding. OH BOY

Jump to this post

@sickirishlass I pray all will be well and a plan to help you can be made. You have a lot going on.

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