Kristine’s Story - From the Couch to the Kitchen & Tube Feeds to Real Food!
"I’d have to say the beginning was the hardest. Maybe harder than being sick itself. There is no giving into the sickness, not even for an hour. In order to succeed I needed to focus on my care 24/7. "
Prior to finding the group Healing Gastroparesis Naturally, I was suffering a great deal. My first diagnosis came about 7 years ago followed by multiple others, including being diagnosed with Gastroparesis 4 years ago. The diagnosis seemed like nothing to the doctors. They just gave me pills and handed me a GP diet booklet and sent me out the door. Not long after I had a really bad episode and ended up in 2 ER’s then eventually a third, admitted to the hospital for 4 days. I wasn’t given many options besides a j-tube. I refused and I went on for the next few years struggling with my weight and eating. It got worse and worse, eliminating more foods and beverages until I had no choice but to have a g-tube placed approximately 7 months ago. I gained weight with it but was not tolerating the prescription formula and still very ill. I suffered from horrible stomach cramping, bloating, nausea and vomiting 24/7, explosive diarrhea, dehydration, malnutrition, insomnia, anxiety, depression and a list of many other things. I took many different medications as well as being on fentanyl patches. At one point we threw away 43 different medications I had in my cabinet. I was not tolerating my feeds and was living on less than 1000 calories a day and barely any fluids. I was going to my local hospital for weekly IV fluids (which I had done all of the previous year). I was told my veins were shot and I needed a permanent port put in. I was no longer taking anything in by mouth with the exception of crackers and Gatorade, unable to do much anymore. Even lift my own body off the couch became challenging. Next up I was due to have my g-tube changed to a j-tube.
My son also suffered from horrible stomach aches for about a year and began refusing to eat. He was due to start testing to find out what was causing this problem. I remember the day I was so ill and weak, unable to barely move. My son was supposed to be eating but was doubled over in pain yet again unable to eat. I was so sick I couldn’t even care for him. I did all I could to make it through each day myself and I can’t explain how much this hurt me inside. In addition my husband had his ongoing digestive issues from a gallbladder removal. I was feeling desperate so the next day I finally decided to actually look into this Healing Gastroparesis Naturally Group I had joined a while back. Natural and alternative ideas were the only routes I had yet to explore. It only took me one day of reading other’s stories and all about the essential oils to place my order for the GP kit and give it a try. At this point I didn’t feel I had much to lose. I took my money for that month's stomach medication and ordered the oils. I checked in with my doctor and instead of asking for a permanent port I requested a month to try this “all natural” approach. I told him I was going off my medications and also starting a homemade formula for my g tube. I'm sure I sounded crazy of course! In 3 days my essential oils arrived at my door. And so my journey began...
It was not a very easy start. I was extremely sick from dehydration and malnutrition as well as sick with a cold/ During this time I was also weaning off some of my medications that were not helping me. I was so sick and weak my husband applied my oils frequently the first few days every half hour. I also switched myself from the prescription feeding formula to a homemade organic formula and started adding in kefir milk, coconut milk, chicken bone broth, coconut water and powdered goats milk. This also allowed me to get off my night time pump feedings. I started applying the Baby’s Happy Tummy essential oil on my children and started giving my family kefir milk daily. I told myself to give it a year, and then evaluate the situation. I was healing 30+ years of damage here.
While on my prescription formula I was only tolerating very small feeds, approximately 3 ounces at a time. So when I started the homemade formula I started out the same at 3 ounces. I was up at night doing bolus feeds every 2 hours because my body was so use to the night time pump feeds. Within days of just these few changes I could already notice a huge difference. My energy, nausea, vomiting, stomach cramping, bowel movements and the amount I was feeding were all improving. I was tolerating the homemade formula much better so I was able to steadily increase my feeds. My bowel movements had changed from constant diarrhea after every feed to being normal. I was very surprised by these changes even though I had a cold, difficulties with my other illnesses and going off medications. There were a lot of changes happening but I was steadily improving. Due to other illnesses, I also suffer from a constant low-grade fever which also improved enough to be more tolerable and I am no longer suffering from daily cold sweats.
After about a week on this new regimen I was doing quite well considering a few days prior I was barely getting anything by mouth and unable to get up off the couch. I was actually getting an appetite and feeling my stomach move. A few times I even tried eating some stuff by mouth. I was feeding from early morning to night every 2 hours including warming my feeds. Warming the feeds made a huge difference in the stomach cramping. I was now mostly sleeping at night for once since being on a feeding tube and night feeds. Vomiting was much better except for some morning episodes. I also started becoming more active and doing more things. I was extremely happy by my progress so far and it had only been a short time. It was not easy and it continued to be challenging but I continued applying my oils and continued pushing my feeds. Each day the amount of formula and fluids I was pushing kept increasing more and more. Within about 3 weeks’ time I was pumping all my necessary fluids and most of my daily calories. This was a first in several years for me. Little did I know I would be doing so well I would have trouble keeping up with my feeds into my stomach!
A little over a month into this new approach I was no longer sleeping well because my body was so hungry and my homemade formula no longer holding me over. I was shocked by how much I was getting in. Even more shocked I was ready to start adding in more solid foods by mouth so soon. Despite having some nausea at night due to waking up hungry, my nausea and other symptoms became very well controlled with the use of the essential oils. I never thought my nausea could be controlled, I thought it was too strong having dealt with it 24/7 for so long. The oils worked fast to help control any nausea that would come about. Yes, I still had bad days but they were far better than what my good days were just over a month ago. I had made this much progress while being sick, dealing with other illnesses and withdrawing from medications and never thought it would be possible. My feeds did not changed while being sick; they actually continued to increase when any other time I would have to stop any food if I was sick. The kefir milk has done wonders for my family. Thankfully and miraculously my son stopped complaining of tummy aches which is amazing, and my husband’s stomach and bowel movements have drastically improved too!
I began having more nausea upon waking and since I have a g tube I could check what was in my stomach. Normally I would have sworn food was sitting in there. Actually the nausea was due to my stomach being so empty since during the night is the longest I go without eating. The oils calm the nausea enough and within a few minutes my body is telling me it's hungry and needs to feed because my tube starts sucking in (this keeps me on track having to feed because it's painful) but also a sign my stomach is moving. Feeling sick and having an empty stomach is what starts the vicious cycle of not wanting to eat because you feel sick. I went from pumping 5oz. total fluid a couple times a day to 14oz total fluid with multiple feeds a day. Normally when I was sick I would drop down to feeding nothing at all.
I continued eliminating medications as well and got myself off the homemade formula, switching to feeding on real pureed meals. After being on night feeds for 8 months my body was FINALLY adjusting to not feeding at night. Thank goodness! Night time nausea and vomiting had subsided with just a little nausea upon waking. Which is huge from the severe nausea and vomiting. Eventually I began taking in small amounts of food by mouth, a huge step from going close to over a year with very little oral intake. It was so nice to feel good and be getting some of my life back!
It's amazing what happens when you're on the verge of dying and your life is flashing before your eyes. How the little things come to light that others and yourself have taken for granted. I know it's only been 2 months but the progress has been amazing. I'm not sure how we can ever thank Chalyce for even giving us this much of our lives back as a family. It may not be much but to simply be able to help the kids get ready for school instead of yelling orders from my bed, being able to take them to school, go to a sporting event or just tuck them in, instead of them having to come to me, makes every bit of this worth it and the quality of life is so much better! I didn’t need to wait a year to know that this was working and that I would continue with the process.
A little over 2 months in and I was able to enjoy TWO meals by mouth with my family on Easter. Big difference compared to 2 months ago living on prescription formula through my feeding tube and not tolerating much, needing weekly IV fluids and a permanent port put in, severe nausea and vomiting, and barely able to get up and move. It sure seems like this 2 months has been a lot longer. I couldn't be happier with the progress I’ve made. It definitely has not been easy. Am I perfect? No, I have my good days and bad days but my quality of life is sooooo much better! When I went back to see my doctor he was also impressed. He told me whatever I am doing, DON’T STOP!
During all of this I had the opportunity to go to my dentist for a cleaning; generally I have horrible dental health reports. This time it was different. NO plaque, NO bleeding gums, NO GAGGING (which is huge for me) and NOTHING to clean. That was a first! I owe it to a homemade toothpaste using essential oils. We even opted out of doing the fluoride treatment.
At 2 ½ months and the progress is still surreal. Things are changing rapidly on a daily basis. As far as eating, I went from the prescription formula, to my homemade formula, to real pureed foods, to NOW mostly eating by mouth and only pumping maybe 1-2 pureed meals a day. I still cannot believe I am already enjoying so much by mouth. Everything seems to settle fine as long as I stick to clean eating and applying the oils regularly. Fluids are not my strong point. I am trying to focus on increasing the amount. I also recently added Moringa Leaf Powder in for added vitamins and nutrients. Nightime has improved tremendously as for the most part I no longer need to feed at all during the night, which has improved my quality of sleep a lot. On rare occasions if I wake up with nausea I apply the oils and get it under control fairly quickly. I have definitely been doing much more than I'm use to on a daily basis. I'm always busy cleaning, running errands or making some sort of healthy food or product. I love the fact I can do things for my family again. However, I do still suffer from some joint discomfort and fatigue due to my other illnesses that I hope to improve in time. I am also sleeping completely lying down now to verses sleeping sitting up for tube feeds. Bloating and fullness have improved and I only get reflux on rare occasions when I eat something irritating.
I have weaned myself down to only two medications, a heart medication and an anti-depressant. Even though I have cut out fentanyl patches, anxiety meds, pain meds, stomach meds, sleeping meds and lots of other meds, I am feeling so much better. I don't feel as tired, anxiety has diminished a lot, I sleep better and of course my stomach is doing much better. Depression has greatly improved as well so I feel comfortable where I'm at to finally cut that pill out in time. I have a shower chair I purchased prior to this and only used a couple times. Since starting this protocol I have not used it since. It still sits in my bathroom as a friendly reminder of how sick I was. I am very busy now trying to keep up with life and my family. I have been down for so long it's difficult getting use to and learning how to balance everything. As much as I have tried I've learned I cannot be Superwoman. These are complicated illnesses that require a lot of attention and care. One day of failed care and that's all it takes to slide backwards. I have taken on sharing with others the knowledge Chalyce has shared with me. We believe in paying it forward. As a family we have also started producing lots of Kefir Milk for other families. Mostly families where someone is suffering from stomach issues. It's helped a lot of people and that couldn’t make us happier.
I still can't believe how far I have come in only 3 months time. I don’t think I relax very much, life is to demanding but I am enjoying every moment of it. Despite having discomfort in my joints I keep pushing through every day. If I feel sluggish one day I just think back to how I was 3 months ago and I am fondly reminded of where I don't want to be again. I’m hoping the joint discomfort will fade in time as I build muscle strength again. I am still holding my weight which is the first in a long time. I continue to eat mostly by mouth as much as I can. I do still pump breakfast most of the time. Mornings are generally my roughest because during the night is the longest I go without eating and still learning what I can and cannot tolerate. I have learned to keep up with my oils a few times a day in order to keep digestion under control. I’d have to say the beginning was the hardest. Maybe harder than being sick itself. There is no giving into the sickness, not even for an hour. In order to succeed I needed to focus on my care 24/7. I don’t require as much attention now but I still have to be devoted daily to my health. I am continuously researching new info on how to better myself and my family’s lives as well as the lives of others. It requires a great deal of care to maintain this lifestyle but the results have definitely been worth it!