My Gastroparesis Story | Gastroparesis Awareness Month

Hello and welcome back to my channel (and if you're new here, a big welcome!) I'm back today with my first 'sit down' video in quite a while - I've definitely missed just sitting and talking to you guys. For today's video, as August is Gastroparesis Awareness Month, I thought I would share my story of Gastroparesis. I've tried to include everything from the symptoms I got as a child, how they progressed over the years, the journey I went through trying to get a diagnosis and a bit about any treatments/managements I have tried since being diagnosed. I have also included Intestinal Dysmotility in this video, as it is so linked to my Gastroparesis.
I hope this video will help to raise awareness of Gastroparesis if you haven't heard of it before. I also hope it will help if you are having digestive problems without a diagnosis, to hear how I managed to get my diagnoses. Or if you already have a diagnosis of Gastroparesis, I hope it will help you to feel a bit less alone.
Please do let me know if you have any questions about anything I've spoken about, and also let me know if there are any other videos you would like me to film - whether they're related to Gastroparesis or something different.
In this video:
Floral Top - Joules (Old)
Blog posts where I speak about Gastroparesis and other digestive problems:
- My experience of swallowing problems - www.jaffacat.c...
- How I got my EDS Diagnosis - www.jaffacat.c...
For more information and help with Gastroparesis (and other related conditions):
- g-pact.org
- www.giftuksupp...
For more information:
- www.nhs.uk/con...
- rarediseases.o...
Where you can find me:
Blog - www.jaffacat.co.uk
Facebook - www.facebook.c...
Twitter - @Jennycole04
Instagram - @Jennycole1988
Pinterest - Jennycole44
Google+ - plus.google.co...
Snapchat - Jennycole44
Anything marked with a * has been sent to me for review purposes, but all opinions are my own and I will only talk about products that I feel fit in with my channel/blog.
Music by Epidemic Sound (www.epidemicsou...)
I'd love to hear your comments and will reply to as many as I can :)

[@debbiehoward408]

I'M SO BLESSED TO HAVE FOUND YOUR VIDEO!!! I HAVE IBS/IBS AND RECENTLY HAD 2 FT OF MY COLON REMOVED. IM ON TRAMADOL & ZANAFLEX. I SUFFER FROM NAUSEA, VOMITING, BLOATING, CANT EAT VERY MUCH WITHOUT FEELING FULL AND IM ALWAYS SEVERELY IMPACTED! YOU HAVE HELPED ME SO MUCH!

[@JennyCole1988]

Sorry for the late reply. I’m so sorry to hear you’ve been through so much with your digestive problems. I hope you’re recovering from surgery OK. I’m really glad my video has helped you xxx

[@OurGentleJourneys]

Thank you so much for making and posting this video!

[@JennyCole1988]

Sorry for the late reply - I haven’t been able to post/film for quite a while due to health. Ah that’s OK - thank you so much for watching and commenting! xx

[@orosco97]

Jenny, thank you so very much for sharing your journey. I have a family member just recently diagnosed. You have been more helpful & informative than the doctor. Can you share what foods seem to work for you and which you avoid and how you schedule meals in a typical day. We are basically completely overwhelmed at this point. Thank you & I do hope you are doing better and feeling better.

[@beccag5339]

This sounds like me. I was recently diagnosed with Gastroparesis. I’m 32 and have had been getting chronically sick-like vomiting 4+ week since I was 11. My symptoms becoming horribly severe in June of this year. I lost 30 lbs in about 6 weeks. I went a full 6 days unable to eat because I formed ulcers in my mouth and throat from all the acid from vomiting. I’m still in the process of getting a diagnosis as to why the Gastroparesis is happening. I’m concerned about ending up with a feeding tube. I’m struggling to keep food down and provide myself with the nutrition I need. I’m attempting a low-acid, semi-solids diet until my next appointment in November so…wish me luck! Thank you so much for posting this. I’ve felt so isolated for years and this makes me feel like everything will be ok.

[@christiefrater9844]

Update Please

[@Rob__James]

How you doing now?

[@kaylag7425]

Thank you for this video. I’ve been suspecting that I have gastropaerisis and now I feel like I know what to ask for for diagnosis

[@Hopeandpeaceinjesus]

Calling my doctor tomorrow to start the ball rolling- I have a lot to update them on especially as I’ve been unable to have any solids for a very long time but I’m so scared of what the process might be.

[@christiefrater9844]

Update Please

[@ashes5112]

Thank you so much for this video. My boyfriend suffers from this condition but as Diabetic gastroperesis. I’m trying to learn and understand as much as possible so I can understand and help him. This video was so helpful 💜🥺

[@Rob__James]

How is your boyfriend doing now?

[@yomama8873]

Thank you very informative 🤩🤩🤩💖💖

[@JennyCole1988]

Sorry for the late reply - I haven’t been able to post/film for quite a while due to health. Thank you I’m glad you found it informative xx

[@teresagould6987]

Thank you so much for your story. I’ve been through 7 years of hell and a very similar experience to you. Fortunately I have a great husband so haven’t ended up being sectioned. BUT omg this is a horrendous condition that should be taken seriously. I’m still waiting to be properly diagnosed with the gastric emptying test. I can’t Waite. Hig hugs and kisses to you my darling xxxx ❤️ Do we have to die to be taken seriously!!!!!!

[@momtomaryjean]

I just watched a video of a surgeon who deals with this diagnosis. There is a new option within the last three years where they cut the muscle at the bottom of the stomach. And I guess it is quite successful. I will come back and post the link. You were so brave. It is so hard. I have Crohns and now I am having so many symptoms including fullness. I had surgery a year ago and apparently this can create nerve damage which can lead to gastroparesis. I am hoping it isn't the diagnosis as I have a lot going on. Thanks for sharing your experience!

[@christiefrater9844]

Update Please

[@Poppies__]

Procedure is called G-Poem if anyone’s wondering

[@ME-hv9kx]

I wonder how long it takes for the episodes to get better after starting a light or purée diet?

[@dinahconnell6947]

How can you tell if you are malnourished? What are the symptoms?

[@JennyCole1988]

So sorry for the late reply - my health hasn't been very good over the last year or so unfortunately. It's probably best to discuss it with a Doctor, as they can do blood tests to check various levels that can indicate if someone is malnourished. But if you're struggling to get food in/losing a lot through vomiting, are losing weight etc it's always worth talking to a Doctor to see if there's anything they can do to help you get the nourishment you need xxx

[@zinthiakee6472]

I completely understand that feeling of both relief and almost mourning when you finally get a diagnosis. I also have hEDS and struggled for years with seemingly unrelated but debilitating symptoms. I was 41 when I got my gastroparesis diagnosis & 44 when I got my diagnosis of hEDS. I have been on TPN since January of 2018. I can eat small amounts & drink tea, coffee & carbonated water. Thank you for sharing your story. I know that you will help others struggling to be heard! 💚

[@Dulcimerist]

I have hEDS as well. Do you also have POTS? My doctor gave me Mestinon (Pyridostigmine) to treat both my gastroparesis and POTS, and it's done really well. It's a newer treatment option, and is becoming popular for EDS patients since it can treat multiple issues with a single medication.

[@zinthiakee6472]

@@Dulcimerist yes, I also have POTS. I used to take midodrine & before that it was fludrocortisone but they started messing with my potassium. Now I get saline IV bags to infuse at home. SIGHS.

[@Dulcimerist]

@@zinthiakee6472 Midodrine and Fluorinef are rather archaic POTS treatment options, just using brute force to push up the blood pressure - which can be dangerous in EDS patients. Fluorinef pushed my blood pressure to dangerous levels, and I had to stop that. Did they try you on any of the other POTS medications; such as Ivabradine, Mestinon, a beta blocker like Atenolol or Propranolol, or an alpha-2 agonist like Clonidine or Guanfacine? A few of those can help with other EDS issues as well. Since you have gastroparesis and POTS, Mestinon might be worth a try to treat both issues.

[@zinthiakee6472]

@@Dulcimerist thank you so much for sharing this info. I have an appointment with my specialist next month & will definitely discuss this with him.

[@zinthiakee6472]

@@Rob__James I’ve been dealing with chronic Gastroparesis for almost 5 years, but I’m officially in remission! I’m waiting for surgery to remove my central line since I’m able to tolerate enough food again. I’m so fortunate to have a great team of doctors.

[@anne-marieriamitchell1140]

I’ve just found out I have this yesterday I knew something was wrong, I had an endoscope 18 hours after my last meal and gross bits of food where on show in my stomach I’m 55 I have CFS AS WELL

[@Rob__James]

Look into the connection between cervical instability & vagus nerve which can cause gastroparesis

[@JennyCole1988]

Sorry for the late reply - I haven’t been able to post/film for quite a while due to health. Sorry to hear you’ve just found out you’ve got Gastroparesis, although it’s good that you’ve now got a diagnosis. I hope you’re able to get some good support and access to management options xx

[@prettytse7762]

OMG////

[@penelopepolinsneemeyer4757]

This is really powerful testimony, Jenny. Well done xxxxxx

[@JennyCole1988]

Thank you for your comment. Sorry this reply is so late - I've been struggling to keep on top of things with my health, but am getting there slowly! Thank you - I'm glad you enjoyed it xx

[@michellequinn678]

Well done on getting through 💪🏻 can I ask what vitamins and minerals you take.

[@JennyCole1988]

Thank you for your comment. Sorry this reply is so late - I've been struggling to keep on top of things with my health, but am getting there slowly! Thank you - yes of course. I take high doses of Vitamin C and also take Vitamin B Complex, Co-Enzyme Q10 (and used to take Omega 3 and Magnesium and Zinc, but have stopped those two now) xx

[@pimp6979]

I have been waiting 2-3 months to get in for a dr to help me

[@julietannOsfan1972]

Hi, thank you for this. I found it very useful. I have Gastroparesis too & am really struggling with solid food. I think I’ll probably just have to have liquids. Has your Dr ever mentioned you having a j-tube?

[@JennyCole1988]

Thank you for your comment Julie. I'm so sorry it's taken me so long to reply. My health hasn't been brilliant, so it's taking me a lot longer than I'd like to get things done, but I really appreciate you taking the time to leave a comment. I'm so glad you found my video useful. Sorry to hear you have Gastroparesis as well. It's not a nice thing to have to live with. I'm so sorry to hear you were struggling with solid food when you wrote this. Did you move onto a liquid diet and was it of any help? I've talked about the possibility of having a tube with some of my doctors, and was given an NG tube at one point (which didn't help a huge amount, as the feed was still just going into my stomach. But this was before I had a diagnosis). At the moment I'm managing my weight OK with a mixture of food and Fortisips (although symptoms are still pretty rubbish) and as my weight is OK, my doctors aren't very keen to look at tubes at the moment. But it's something we could consider if things went downhill. Is it something your doctors have considered for you? I've got a few friends who use various different types of tubes or TPN, which have generally seemed to help reduce their symptoms somewhat and maintain their weight, so they are definitely worth talking about with your specialists xx

[@nkadimashiane]

Neurofeedback and biofeedback might be able to help if damage to the autonomic nervous system is in the brain, which is usually what happens. I would also recommend the Comra laser therapy to heal any tissue or nerve damage. If its due to diabetes you will have to control you blood sugars.

[@peterchen8046]

Sorry to hear that! hope you feel better

[@kadiedurocher9016]

Thank you so much for sharing. My 18-year-old daughter was recently diagnosed. It’s heart wrenching to hear the process you went through to finally receive a diagnosis. Ours was lengthy as well but not quite as arduous. It’s helpful to know there are others out there that suffer and they are somehow managing, thank you again!

[@christiefrater9844]

My 18 year old daughter is going through the same thing but not diagnosed yet she has a gastroenterologist appointment Wednesday her appointment was moved up a few months since her health is deteriorating her boyfriend has been on the doctors to push for sooner appointments that she is getting worse… update Please if your daughter

[@Miduzik]

I’m at the 17 minute mark in the video my reaction to them sending you home with no help was literally wtf... I’m so sorry you had to go through that but sadly I’m not surprised. Hope you’re much better now

[@paulinag.8250]

I just got out of hospital two days ago after the Drs ran a bunch of tests and they were inconclusive. I was afraid to go home with no significant treatment plan to help me with my symptoms except for more anti sickness tablets. I’ve lost so much weight and can’t tolerate solids and barely any liquids now. When you said that they sent you home to practically die, that’s how I’m feeling. It feels like it’s never going to get any better.

[@icecubejenny]

I am so sorry you had to go through all that, obviously your stomach issues had nothing to do with an eating disorder. I understood so well your fright with eating. When you are severely constipated its so easy to feel toxic and stuffed and nauseated already so its hard to shove more in. Glad you are on the right track and thanks for sharing your story

[@JennyCole1988]

Thank you for your comment. Sorry this reply is so late - I've been struggling to keep on top of things with my health, but am getting there slowly! Thank you for understanding and for your kind comments. I'm glad you enjoyed hearing my story xx

[@susanmargaretwills6432]

You seem like such a nice girl... I wish I had an Auntie Jenny like Noah has!

[@JennyCole1988]

Thank you for your comment - I really appreciate you taking the time to leave one . Sorry it's taken me so long to reply - I've been struggling to keep on top of things with my health, but getting there slowly! Ah thank you, that's very sweet xx

[@kristiericson1365]

Thank you so much for sharing!

[@dayday9959]

Thanks for sharing this information I’m starting to have some symptoms I’m going to see my doctor later on today.

[@freedomuk9418]

What did u use for the bloatimg gas

[@jadelight6921]

Gas x can help.