My Story


Hi, my name is Stephanie Torres.  Since being diagnosed with gastroparesis in 2008 I have learned and continue to learn patience, compassion, and a deep passion for helping others and spreading awareness.  Through blogging, I hope to find an outlet for myself as well as provide shared experiences, tips, recipes and a community for anyone seeking a place to know they are not alone.


My History

I've lived with digestive issues on and off from the age of 19, shortly after undergoing laparoscopic surgery for endometriosis and ovarian cysts.  It started with heartburn and eventually symptoms that were diagnosed as IBS.  Around the time of turning 28, after years of pain and discomfort, a gastric emptying test confirmed gastroparesis (GP).  At the time I thought I could cure it through diet alone and went completely gluten-free.  For about six months I felt amazing but it didn't last and I began experiencing severe bloating, fullness, nausea and eventually barely able to take down fluids. Two months later I was in the hospital having every test in the book done, again confirming GP.

With motility medication, bodywork, rest and loads of support from family and friends, I began to recover.  A year later I began a full-time (more like overload time) course in acupuncture and Chinese medicine.  The program was incredible, a dream come true, but traveling the 90 miles back and forth each week, missing my husband, not to mention the time and stress involved with the intense studies, became more than I could handle.  By the end of the first year, I had lost a tremendous amount of weight, in denial of having a chronic illness because I was determined to live a "normal life."  By June of 2010, I ended up back in the hospital, this time too weak and malnourished to recover on my own.  After unsuccessful trials with medications as well as trying the botox treatment for the 2nd time, I had no choice but to be put on a temporary feeding tube, called a J-tube.  This is when it really hit me...it was time to accept my illness and really focus on taking care of myself because otherwise, I wouldn't survive much longer.


By accepting this as part of my life, I was able to slow down and set priorities.  I again started focusing on managing symptoms through diet, exercise, limiting stress and finding other passions in life like creativity and helping others.  This doesn't mean I don't still have bad days, but I have learned how to manage them by not letting the fear take over and by not running away from them.


I began writing about my journey on this blog, learning more and more about GP and how many others were going through the similar battles.  Motivated to help, I enrolled in a program through the Institute for Integrative Nutrition to become certified as a health coach, specializing in gastroparesis as well as other digestive disorders such as IBS.  In June of 2012, I started to use my experience and education as a learning tool for others, to focus on the things we can do to help ourselves instead of focusing on the things we can't.  I never would have imagined this would be my life at this age but it hasn't stopped me from continuing to stay positive, be an advocate for awareness, and in the meantime live the best life possible.


*Updates

Due to complications in the fall of 2012, the j-tube was removed.  Unfortunately, my body did not hold onto the calories I was able to take in and after a drastic weight loss, another tube was placed in January 2013.  This also created complications resulting in having a PICC line placed in February 2013.  We pray this is temporary and that my body will gain enough strength to go without this support.

Summer 2013: After insisting for 6 months the j-tube (not being used, just for backup) was causing more harm than good, it was removed through a laparoscopic procedure.


January 2014: The PICC line was not staying in place like it should so it was replaced with a central line in the upper right chest area.  I'm still able to eat (actually quite a bit compared to most) but not the amount my body's high metabolism requires. TPN continues to be used 4-6 nights a week.


September 2015: A port-a-cath was placed in my chest to replace the central line.  I continue to use TPN 5 nights a week but now line and tube free on days off!  This allows me to swim and shower without worry when de-accessed.  For details on types of line access check out this page.


*If you have ANY questions regarding nutrition support (feeding tubes and central lines) as a means of please feel free to contact me at storres@thriverx.net.  As of May 2014, I have been lucky enough to work as a Nutrition Consumer Advocate for ThriveRx alongside experts I believe personally saved my own life and passionate about helping others who can no longer eat enough to survive.*


2016 - I began working with health coach and aromatherapist, Chalyce Macoskey, through Healing Gastroparesis Naturally and non-profit Wisdom by Nature. Through the use of her essential oils created specifically for GP I have found tremendous pain relief and able to more. Our book about using a natural approach will be published in May of 2017. Details coming soon! You can find my writing on her website as well


Details from the beginning of my experience are broken down into Part 1: Diagnostic Journey, Part II: A Passion Ignites But is Short-Lived, and Part III: Reality Check, Grief, and Acceptance.  They discuss my diagnosis, temporary recovery, treatments and the ups and downs since being diagnosed.


Part of the reason I started this blog was to share my information with family and friends to better understand gastroparesis and how it has affected my life.  If you would like to know more about me, my story or would like to share your own story please sign up and leave a comment or contact me.


Thank you for taking the time to visit and please feel free to share any feedback you might have.

With kindness,
Stephanie

18 comments:

  1. You are absolutely amazing. Stay strong! I was just diagnosed with GP as well and it's very inspiring reading your blog. Thank you!

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  2. Thanks Lyss! So good to hear it has been helpful and wish you the best as you navigate your own journey with GP. Checked out your blog, love it, both the design and the writing! Keep at it and never give up hope you can feel better :)

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  3. So, I tried to access more information about diets and was unable to find anything. I have recently been diagnosed with gastroparesis and have a long history of IBS-D and GERD. I thought that eating fresh salads would be healthier for me but am learning that this is not so. I am trying to learn what would be good, healthy foods to eat.

    Thank you in advance!
    Amy

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  4. Hi Amy,
    We are all very different, and some quite alike, when it comes to what we can and cannot tolerate with diet. Unfortunately, as healthy as they are, salads are not GP-friendly, as with most raw foods. Start by having smaller portion sizes, what we call mini-meals. Soups, smoothies, lean protein, nut butters (1 T), hot cereals, well cooked veggies and pureed fruits are some examples. Look under the "Handout" section of my blog, both might give you some ideas as well. There are a number of things you can do to help with the IBS-D and GERD. I might be able to give you some guidance and would be happy to see if I can help. Email me at stephanie@journeywithwellness.com.
    Know you are not alone!
    -Stephanie

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  5. Thank you for your blog post. I've been diagnosed with GP this year. I'm type I diabetic and was wondering how going gluten-free would affect the GP. I'm still scared to leave the house - the last trip (a bus trip to a casino where I was winning) resulted in an ambulance ride to the ER and a hospital stay. Hang in there!

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  6. Stephanie, I just read your recent procedure and I hope you are feeling better and had much success with this procedure. Feel better!
    Trish

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  7. Is chronic diarrea a part of gp?

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  8. Your story sounds a lot like mine I was diagnosed with go in October of 2012 I am still struggling with this disease, it's days I want to give up ! I am so glad I ran across this page you are such an inspiration to me to push on..

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  9. Stephanie,
    Thank you for sharing your story. I have struggled with digestive issues for many years, and I recently was diagnosed with GP at the Mayo Clinic. Your story has been inspiring to me and you have given me hope.
    Thank you for sharing your journey (and your recipes, too!)

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  10. Hi Stephanie and every one, I was diagnosed with gp about two years ago and like everyone else it has been a huge battle in trying to find the right diet, I've dropped alot of weight since being diagnosed due to the gp and I am now drinking ensure for the nutrients and protein along with trying to eat right, it is sad that there is no cure for this but holding on to faith that one day there will be. Thanks for sharing your stories everyone, supporting one another is an awesome way for all to make it through this and keeping God as my number one priority has helped me make it through alot of tuff times and hateful comments from people who know nothing about gp and the Weight loss, thanks again, Lisa

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  11. Hi Stephanie and every one, I was diagnosed with gp about two years ago and it has been one big battle trying to find the right foods to eat, I have lost weight since being diagnosed and I started drinking ensure for the nutrients and protein, I find that I tolerate chicken and pasta pretty good and peanut butter,seafood is another good food to eat but unfortunately the only thing I like is tuna fish lol. It helps to hear that I'm not alone in this and that there is a support group for all of us going through this, I have heard so many negative comments about my weight from people that it gets frustrating and depressing because people who are not going through this don't understand, thanks again for the blog and every one's comments, I keep my faith in God and pray that one day there will be a cure, thanks, Lisa

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  12. Saying prayers to you and who all have been afflicted with gp. Nausea is the worst thing for me.

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  13. Wow, I have nothing to complain about. If it is okay with you, I would like to pray for you. I do have gastroparesis, but definitely not to the degree that you do. -Wendi

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  14. Hi Stephanie,

    As a fellow GP survivor, I was so glad to see your blog about living with and past GP. I am chronicling my struggle with curing and recovering from GP in my graphic memoir I am posting on my blog, keracuresgp.tumblr.com. I would love it if you and your followers could check it out and help me spread awareness about this condition. Thanks and best wishes!!

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  15. Hi,
    I too am making an appointment with John Hopkins medical center. SIBO has been the worst medical condition I have experienced, even worse than my Lyme disease.( all starts from rotten microbes!) I too have an understanding husband, thank God. No one understands this debilitating condition unless they live through it. Now I am experiencing burns all over my body due to methane gas and acids. Not to mention kidney pain and stones with burning almost daily. Was also looking into a clinic called Gastro Cure in NJ, and was wondering if you ever heard any positive feedback. Good luck on your Aug 1st appointment at John Hopkins! Please try to keep me posted. I am very anxious too! God Bless, Sue

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  16. Stephanie, I am interested in completing the tests for autoimmune gastrointestinal disorder through Mayo Clinic. I had actually been a patient there for diagnosis of my first of four autoimmune diseases...so far. Can you tell me how you were able to set that up? Thank you, Jenn

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  17. I have been recently diagnosed with GP. I have been complaining of stomach pain, vomiting, constipation, acid burps frying my nostrils as well as the acid just crawling up my throat for years. The vomiting began back in the 90's. The associated stomach pain began in 2004. The VA doctor would just increase my acid pill. I would complain she would change it. I would give up complaining until it became unbearable and then begin complaining again... you get the idea. I was finally sent to a civilian hospital because the VA lost their entire Gastroenterology department. Now it took years just to get to a gastrology doctor then it took two years to have them send me to a civilian hospital. Thank the lord for my Veterans Choice Card. I now have that diagnoses. However I am confused.
    I hurt... I cannot eat eggs, rice, cheerios, barley soup... all of that makes me very ill. I do not know what to eat when I go out last Thursday I went to a Mexican Restaurant and ordered a chicken burrito. I became very ill. Not food poisoning ill. I was vomiting and sick for 2 days I could not eat. I am lost. My eyes are so dry now that it hurts to open them in the morning and it is hard to get to the bathroom. I pick rocks out of my eyes all day and my cheeks hurt from it. It does not matter what I eat I hurt. I live in a retirement center and I eat oatmeal each morning with my coffee and now I cannot find if that is ok for me. I try to research but all i seem to find is eat puree (baby food) or soup and crackers. I am sooooo .... I cannot put it into words because I just do not know. My hands hurts (fingers) this typing. There are too many things. I keep thinking that there just has to be a better answer. I am not losing any weight. I am 5" 9 and 266. I should be losing a lot of weight. I do not eat that much and I vomit. I swell horribly but even so I am not thin people with GP are. My stomach emptying test showed that my stomach does not empty. If I get a scratch or am bitten by a flea it takes weeks to heal sometimes months. I feel like there must be another answer but maybe eating different can help. I need to know if oatmeal and coffee is bad?
    Thank you.

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    1. Hi my husband has GP and I have a safe and unsafe food list put together by some of the leading doctors on the frontier of this diseases please email me at nikkiprine@ymail.com and I can send you pictures of the list and yes it will help also I know a great prescription for eye drops to stop the rocks I actually get them so bad I was developing cysts on the lining of my top and bottom lids I hope I can help in some way! Please feel free to email me at any time nikkiprine@ymail.com.

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