Life with a PGJ Feeding Tube

Ever since I was diagnosed with Gastroparesis (GP) my biggest fear was getting to the point where I needed a feeding tube. It’s not a guarantee that all GPers will end up with a feeding tube but nevertheless I was determined not to let my GP get to that point. If only I had that much control over my body, my GP, and my health. Not saying one doesn’t have control over their health but you don’t have full control that’s for sure. 

A feeding tube just seemed to scary and I wasn’t going to except that it in fact it could happen and happen it did! 

My health and GP where getting worse and I was going through a very rough patch with GP. I was constantly in and out of hospital, in more so than out and at home. I wasn’t able to tolerate any solids. I could only have a clear fluid diet and sometimes a full fluid diet over a course of 4-5 months with very little nutrients and I went 3 months on just a clear fluid diet with pretty much no nutrition. Now was the time for a feeding tube! I had lost a lot of weight and was down to almost nothing, I had nothing left to lose. Even though I knew this had to happen it was still a tough decision. But it turned out to be one of the best decisions, obviously for my health and life but also for my Gastroparesis!

I ended up getting a PGJ feeding tube, which means “percutaneous gastro-jejunal” meaning it goes through the stomach and into the small intestine. Having this kind of feeding tube is quite beneficial for Diabetic GPers in the ways of: 

1) When unable to tolerate much and/or can’t keep anything down you can do feeds for nutrition since we’re very malnurished and if you need to put some weight on it helps with that as well. 

2) We can put our medication through the feeding tube. Doing this you always know meds will stay down and kick in in about 15-20 minutes rather then not knowing when or if they’ll absorb or not. Sometimes medication can sit in a GPers stomach for hours or even days before the medication is absorbed or digested if it is at all. This can lead to problems such as multiple doses absorbing all at once and that can be extremely dangerous. 

3) When a Diabetic is having a low blood sugar and again not tolerating much or not keeping anything down you’re able to put juice or sugar water or crushed up glucose tabs through the tube as well. 

4) With feeds and medications we’re bypassing the stomach so nothing will come up if getting sick. 

The tube doesn’t hurt at all and it doesn’t really get in the way. I don’t have to cover it or anything when I shower or bath and I use regular body wash on it. I’ve had pretty good luck with it. I have to get a new tube put in every 4-6 months and the procedure is pain less and there’s really no discomfort and it only takes 10-15 minutes which is nice!

Looking back now after having the feeding tube for 5 years I am very glad I got it. It saved my life!

I would honestly recommend one to every GPer and especially to every Diabetic GPer!

Happy Tummy Days Everyone! 💚

The Day After My Birthday

-Feb 22 @midnight - 

At RUH. Had 3 very serious blood infections: a fungal bacterial yeast in my blood called Candida) , another blood infection and a bacterial infection and it was bad. It could of easily killed me. I was so extremely swollen. My eyes got swollen to the point where I couldn't see and you couldn't even see my eye lashes I was so puffed up. I gained

up to 60lbs of water in just a few days. Had lots of specialists this time around: a nephrologist, a urologist, infectious disease, medicine, a hemotologist, ICU doc, vascular/surgery docs and who knows who else. 

I almost went to ICU and almost had to be put on life support. Things slowly became stable and started getting a little bit better or at least enough to stay out of the ICU but went to an obs (24hr observation) room instead. Ugh it was so bad. So swollen for weeks. My face, neck, torso, back, arms, hands, legs, feet, everything is swollen. 

I just got moved back to obs cuz my sugars were running real high like 28 so they put me back on an insulin infusion..for one day for one high- so stupid!

My hemoglobin in back down around 75 (normal for an adult woman is around 130) so I'm getting another blood transfusion, 1 unit. I had 2 blood transfusions here at RUH this stay both being one unit of blood and I believe I also had 2 or maybe 3 albumin transfusions. 

I'm also waiting to go get my central line out and get another picc put in. After 4-5 days of having the picc line it got infected and another blood clot which was so very painful and swollen, my poor fat right arm. Turns out that the infection they found at the end of my picc line was MRSA which got into my blood which is Extremely dangerous and can kill you. The other times I had it or VRE they were just on the skin but this time the MRSA got into my blood. I also have pneumonia. It's tough to talk and I loose my breathe easily. I'm on an oxygen mask. My oxygen drops to about 80, should be 100. 

I'm getting a Hickman line put in tomorrow morning (April 6/16) It'll be nice to have a good permanent line rather then a picc line :) It took about half an hour. It wasn't too bad pain wise but every time they pushed the tube in further it really hurt. I actually couldn't believe how much pressure the radiologist had to use to get the line in to where it's gotta go. It's pretty sore and I imagine it will be for a few days. 

I am now finally noticing some of the water starting to come off. My arms and legs are still pretty tight and swollen but it is noticeable the lasixs is working.

 

It's Thursday April 14/16 and it's been 9 days since I got my Hickman line and it's still bleeding at the entry site. Radiology is hopefully gonna come see me tomorrow and will hopefully fix it with more stitches or something. It's kinda scary with it bleeding cuz of it going into my jugular vein. Scary Stuff! Yes I am tough but I can still be scared. 

April 26/16 cataract surgery on left eye@city hospital. 

April27/16 Had a meeting with mom dad Brian Witt, Maureen, Michelle, a couple docs and Melissa( social worker) -this is some of my medical team). Gonna have regular meetingswith the same people and 3 docs.

 

May 20/16 Met with infectious doctor and spoke to pharmacist, I have another fongal infection on my Hickmen so it has to be pulled and for about 14 days my meds will either go though a butterfly, a regular IV, or IM (In muscles). It's gonna be another tough fight but I'll get through!

May 22/16 found out we have to pull my Hickmen. Been getting HDC shots or IM shots and they all hurt so much. One for gravol, zofran, dilaudid, diazepam, Ativan....it all hurts more then it has ever has before when I've had these types of subque injections. 

May 23/16 Got Hickmen removed due to yet another fungal infection. So as of today I have NO IV access, first time in about 2 years. 

June 22/16 Still no IV access and obviously still in. Been 4 months. Things are still bad still getting sick still severely nauseated still in pain. It's messed up! They've just loaded me up with Ativan. I've been sleeping, thankfully, but I don't want to be on a bunch of Ativan. It's time to go back to what we know works to get through and past an episode then regroup and try something new! NOW!

What A Year

Hello everyone! Sorry it's been so long since my last blog post but this past year hasn't been a good one health-wise. Here's what's been going on.

After being in remission for 9 months, and loving it!, my health started on a downward spiral. In March 2014 I decided to try Champix to help quit smoking. Of course there are possible symptoms and side effects that can occur with any medication, including this one. Nausea and vomiting were pretty much at the top of the list. At this time I was in a 9 month remission stint and loving it! After being on Champix for only a week the nausea and vomiting started so I quit taking it. A few days later I was going through a gastroparesis episode. I ended up in hospital for 34 days because of it.

I was home for 3 weeks and started to notice my left arm, which had a pic line in it, was swelling up so I went to emerge and sure enough a blood clot (DVT - Deep Vein Thrombosis) had formed  from my picc line. I was put on Warfarin, which didn't work too well because it interacted with my medical marijuana so I was put on Xarelto for the blood clot. Through the next 3-4 months I was in and out of the hospital due to GP episodes. Due to all the nausea and vomiting my body wasn't digesting or absorbing the oral medications so when I had another ultrasound done to see if the clot was gone 4 months later it wasn't. I was then switched to Tinzaparin, which is an injectable blood thinner for blood clots and this way I knew for sure that I'd be getting the proper doses of the meds.

In 13 months I have had two blood clots (DVT - Deep Vein Thrombosis) in both arms due to picc lines, I had a cyst burst on my ovary, I had a blood infection so I was on IV antibiotics at home for that, I have recently gotten the super bug VRE (Vancomycin-Resistant Enterococci) for the second time over the last 2 years. I also had a feeding tube placed in my abdomen right next to my stomach pacemaker, which had to be replaced a couple weeks later because it was in the wrong spot on my small intestine. A few months later the tube came out about 6 inches so I had to go get it changed and replaced again. I had a Botox injection into my pyloric valve to help settle it down which in turn helps alleviate the nausea and vomiting and then helps lesson the pain. I have had a few attempts at getting new picc lines put in but my veins are so small and brittle from being so sick that after I loose this current one, which I've had for 10 months now, I'll no longer be able to get picc lines put in. My veins have moved and changed directions and are so small they seem to hide when we're trying to get new lines. Once it's gone I'll be getting a permanent port of some sorts. I'd honestly rather get that done sooner rather then later because picc lines have a bit more risk of infection then a port especially when I'm accessing it at home to give my meds. All my medications go through my picc line or my PGJ tube, no oral medications as pills just end up sitting in my stomach without being absorbed or digested. I've taken pills in the morning then gotten sick that night or the next day and the pills come up looking like I hadn't even taken any. I am only tolerating clear fluids so I live off of water and tea and I drink 6 boost juices a day to give me some energy and nutrients throughout the day, then I do nocturnal feeds every night. In this year I also had to have surgery to replace the battery in my gastric pacemaker. That was a little painful but only for a few days so can't really complain about that!


After all the health issues that have come my way in just this last year I am more determined then ever to get back up and beat this Gastroparesis and not let it take over my life or define me! I am so sick of being sick all the time. I haven't eaten a solid meal since March 20, 2014 and I can't wait to get back to the point where I can once again and I will because I am NOT giving up! In the 8+ years I've had GP this has to be the worst year thus far. BUT I am positively looking up and onward!

Happy Tummy Days Everyone!

Life with Diabetic Gastroparesis!

https://www.facebook.com/diabeticgastroparesis

Updates Spring/Summer 2014

It has been quite the last 6 months to say the least! I was on a 9 month remission stretch when high blood sugars brought on a gastroparesis flare up. March 20, 2014 I ended up in hospital and was there for 32 days. I had a picc line put in and was sent home with it just in case I was to get sick again shortly after and could get medications easily and quickly since I am an extremely hard IV start. I have had anesthesiologists use ultrasound machines to try and get IV's on me that couldn't, that's how tough it is to get one. I literally become a human pin cushion. After being home from this flare up for a couple weeks I went to my family doctor to get my picc line removed which went good until a few days later my entire left arm was swollen. This made me nervous. So I rushed to a clinic and was put on antibiotics in case it was an infection and was told if it did not get better in a couple days to go to the ER for an ultrasound to see if it could be a blood clot. This frightened me and to be on the safe side I went to the ER the next day. And sure enough it was a blood clot from the picc line. I was put on warfrin which is a blood thinner to help get rid of the clot. The downside to this medication is that you have to get blood work drawn every couple days to monitor your INR levels and there are also a few food restrictions while on it. I also found it had a bit of an interaction with the medical marijuana I smoke. I would not wake up to use the washroom at night and ended up having a few 'not so pretty' messes...Super Embarrassing! lol. This was a problem because I was barely tolerating fluids and some days I was not well enough to get my blood work done or even keep the warfrin down. For the next 7 weeks I was in and out of the hospital having one flare up after another. I was finally put on a different blood thinner called Riveroxiban which you don't have any food restrictions and don't have to get any blood work done since Riveroxiban doesn't effect INR levels. I have now been put on Tinziparin injections for a blood thinner because it turned out riveroxaban was meant to take with food and well, that does'nt work for me. After 5 months I still had the blood clot due not getting as consistant amount of the blood thinners because my stomach was not absorbing them. After 5 month |I still have the blood clot. So now that I am getting the injection I will at least know I am for sure getting the medication. Now I am on Tinzaparin because its an injectable blood thinner which I needed because after a few months of being on pills I was not digesting them and/or they weren't being absorbed properly

During one of my flare ups in hospital I was able to get my neuro-stimulator (gastric pacemaker) checked to make sure the settings were still where they should be. I ended up finding out that the battery was running low. This meant it was time for a surgery to replace the battery. I ended up having the surgery to replace the battery, which went very well. I was a but tender and sore for a few days but nothing too bad :)

What Doctors NEED To Know About Gastroparesis

Most patients with gastroparesis (GPers) come across doctors that either give up on them, tell them that their symptoms are all in their head, dismiss symptoms as not being a part of gastroparesis, they mistreat symptoms with wrong or interfering medications, and a lot of the time doctors just don't listen to their patients. This is all because the medical community does not know of, or understand gastroparesis. It's time they start realizing that gastroparesis effects EVERY aspect of our lives and comes with numerous symptoms that they have yet to acknowledge as a part of gastroparesis.

Along with understanding gastroparesis and acknowledging symptoms, doctors and the medical community also need to know how diabetic gastroparesis works and how complicated living with the two conditions can be. Gastroparesis is a horrible condition on it's own but add diabetes to the mix and you've got yourself a roller-coaster ride. Try raising your blood sugar when you can't tolerate a drop of water. Explain why and how blood sugars can be extremely high but you haven't eaten all day or in some cases going days without food? Try guessing when to give insulin after you've actually been able to eat because you never know when the food will digest - 4 to 6 hours later or will it be 10 to 14 hours later or maybe it'll be sometime tomorrow, who knows? How many times a day would you like to check your blood sugars? How about 10-20 times like I do? And, how would you like having low and high blood sugar symptoms, that you've been used to for 26 years, start to change (having high symptoms when your sugar is low and vice versa) and/or you're not feeling symptoms at all? To say the least, it's frustrating!

One thing that doctors need to understand a lot more is the effects gastroparesis has on our hemoglobin A1C'S (average blood sugar level over 2-3 months). My sugars are erratic and are never stable no matter what I eat and even when I can't eat, they are always moving. Yet, my HbA1C is normal and so are most diabetic GPers? The numbers are a false negative which no one knows what the risks could be or what kind of complications could arise, if any. There are so many unknowns, and that is very scary as a diabetic.

Diet is another concern for GPers and of course diabetic GPers. Doctors need to know about GP friendly foods and guidelines and what type of supplements each of us need on a daily basis to make up for the foods that are not tolerated and when added nutrition -via feeding tube or TPN (Total Parental Nutrition through IV) are needed. In some cases gastroparesis patients are refused feeding tubes or TPN because they are overweight and could lose a few pounds?? -This is wrong, cruel, and torturous! Making people starve because they are overweight. I can't believe this happens but it does. I was in the hospital last winter for 4 1/2 months and I had this one doctor come see me after I had been in there for 2 months unable to eat, I asked her about putting me on TPN, she looked at me and said "you can handle a few more days of not eating" and basically walked right out of the room as her colleagues looked in disbelief as to what she said. I could not believe what she had just said to me. At that time I probably weighed 145-150 pounds (an average weight) and had been lying there without food or any type of nutrition for 2 months and had lost about 15-20 pounds at that point. She obviously knew nothing about me or gastroparesis. I felt alone, discouraged, mad and afraid because a doctor was okay with her patient starving to death. Needless to say I was disgusted with that doctor. I got a new doctor and was put on TPN not long afterwards...thankfully!

Something else doctors and the medical community need to know is that gastroparesis plays havoc on the body. My body is always in starvation mode. When I go through periods of "remission" and can tolerate most foods my body stores anything and everything I eat. My wardrobe ranges from sizes 3-13, depending on how sick or healthy I am. Gastroparesis also effects teeth and hair. My teeth are eroding due to all the vomiting and acid reflux. I have to use a special toothpaste and rinse to help preserve my teeth. Hair loss is also a part of gastroparesis due to being malnourished. Both of which can upset ones self confidence.

One symptom that doctors MUST start recognizing as being a large part of gastroparesis is pain. For some reason most doctors and people in the medical field don't associate pain with gastroparesis. This has to change! Not everyone experiences pain and that's because everyone is different. Not every GPer vomits, some can tolerate foods that others cannot and the same goes for medications and treatments. The pain is also different depending on the person, some get it in the small of their stomach, some at the top and center of the stomach, some GPers pain radiates to their back, and for some, the pain is only on their right side but not their left. No matter where the pain is, how bad, or how it feels, doctors don't know exactly what causes it. When patients are in pain a lot of doctors are reluctant to give anything regarding pain medication. This is understandable because narcotics slow down digestion and that's the opposite of what you want to do, so doctors will refuse them. However, what I believe, is that while I am going through an episode my stomach isn't working at all so the pain medications are not really slowing anything down even more. And from what I know about my diabetic GP is that if you get rid of the pain you get rid of the nausea which in turn seems to stop the episode and my stomach starts back up again. -if I go into the ER and get the right medications (nausea meds, pain meds, motility meds for the stomach) my stays can be as short as a few hours or just a few days, my episodes last an average of 10 days.

The biggest help to all of this is a doctor that listens...and of course understands diabetic and idiopathic gastroparesis! Don't get me wrong, there are amazing, understanding, and good doctors that know about gastroparesis but they are few and far between. The more awareness, education, and testimonies that are heard, the better off all of us GPers will be!


Symptoms and/or complications of gastroparesis include: severe nausea, vomiting, pain, erratic blood sugars, malnutrition, excessive bloating, weight loss and/or gain, fatigue, anxiety, heart burn, cramping, acid reflux, low energy levels, loss of appetite, memory loss, hair loss, excessive burping, constipation, depression, painful hiccups, body always in starvation mode, decaying of teeth, and worsening of diabetic retinopathy. And I can imagine how gastroparesis affects other conditions like it does diabetes.

Then add in the side effects from the 10 different medications I can be on at one time and needless to say, I can go through a lot in a day! The more doctors know about gastroparesis the better because it is becoming more and more common everyday with an estimated 5-6 million North Americans that have gastroparesis and who knows how many world wide.

Happy Tummy Day Everyone! :)

Diabetic Gastroparesis and Diabetic Retinopathy.

Having diabetic gastroparesis along with diabetic retinopathy can be quite frustrating and scary to say the least. Diabetic retinopathy is damage to the retina in the eye caused by complications of diabetes and can lead to blindness. The longer someone has diabetes, the higher the chance they could develop diabetic retinopathy and especially by not keeping the blood sugars controlled. Diabetic retinopathy causes blood vessels in the eye to rupture. This is caused by pressure built on the eye, which vomiting can cause. Fluid builds up in the eye covering the retina. This can possibly mean temporary blindness and can lead to permanent blindness in either one eye or two. The treatment is medicated eye drops, sleeping on a 45 degree angle so the fluid can settle, no bending over and no lifting anything over 5 pounds. The more extensive treatments are laser surgeries, where they essentially cut out blood vessels from the back of the eye. This process is extremely painful. 

Having either diabetic gastroparesis or diabetic retinopathy is challenging but add them together, things can get even more complicated then things already are.  With gastroparesis causing mild to severe vomiting, depending on the person, the eyes are in a very vulnerable state. All the pressure on the eyes that comes from vomiting can easily cause a blood vessel to rupture, causing fluid build up and temporary blindness. This becomes added stress, which is definitely NOT needed in the life of a diabetic GPer with diabetic retinopathy. As a GPer your  already doing everything you can not to vomit but then having the stress of trying not to vomit because it can destroy you eye sight is a stress all on it's own. I've gone through temporary blindness countless times in the first few years of having gastroparesis (thankfully not so much lately) and it's the scariest thing, literally watching your vision go as the fluid settles over 20 minutes or so. The fluid is white, so it's like your eye is fogging up. Then when it's settled all you can see is white cloud and  darker colored shadows from things moving around you. As the days go on shadows slowly become clearer and color starts reappearing. The fog is lifting! For me, it takes an average of 2-3 weeks for the fluid to settle and my vision to return to normal. Having this happen you also have to be careful and aware of your balance, as looking through one eye can make things a little uneasy at times. Diabetic retinopathy is very frustrating when it acts up and unfortunately it's yet another obstacle to go through if living with diabetic GP and diabetic retinopathy.

I have had 14 laser eye surgeries, 2 surgeries on my eyes where they put me under with anesthesia, and one procedure where they injected me directly into the pupil with a newer form of treatment, which worked well. I am not sure if this procedure is still done or not though.
For each laser injection you are given freezing and numbing eye drops, then you get a needle directly into the bottom of the eye just above the cheek bone for freezing. Then comes the laser. Even with the freezing eye drops and the needle with freezing in it, the laser is so incredibly painful. Not once, after 11 laser surgeries did I not feel pain from the freezing. The pain literally feels exactly like what they are doing, cutting out blood vessels from behind the eye. Needless to say it's painful! I can't complain though, because my eye surgeon is amazing and my eyes are healthy! And vomiting hasn't caused a blood vessel to bleed for a year and a half now! My vision is good. My ability to focus on things has changed due to the surgeries. It takes me longer to read and it's harder to see very small things like dust and dirt and even the stars I can't see that well anymore. But I'm happy that my vision is good despite having diabetic retinopathy.

To help save and protect the eyes from damage happening, first of all lower/stabilize blood sugars (if needed) then secondly lower stress as much as you can. Blood pressure also effects the eyes. Having good blood pressure control can help prevent the retinopathy from progressing to possible blindness .Do everything in your power to manage and own your gastroparesis to limit the vomiting. I know this is all easier said then done but it's for good health which makes it worth it! And remember, trying to stay as positive as you can helps our overall health, it really does make a difference!!


Diabetic gastroparesis and diabetic retinopathy are not a good combination of health conditions  to have but with good care, proper treatments, and procedures the retinopathy can be managed. Hopefully for those of you with both conditions, you're having good eye health along with good GP health :)


Vitmains for good eye health

Vitamin A contributes to the retina, which indicates light changes. The rods and cones within the retina need vitamin A to communicate to the nervous system the amount of light that exists in the present atmosphere. A healthy liver can store up to a year's worth of vitamin A in the body, and a deficiency most commonly leads to night blindness. Potent sources of vitamin A include orange and yellow foods such as carrots and sweet potatoes..

Beta-carotene converts to vitamin A once ingested. Because beta-carotene is an antioxidant, it prevents cell destruction caused by free radicals. This especially protects against age related macular degeneration, the leading cause of vision loss in the elderly. Carrots, broccoli and spinach are rich sources of beta-carotene. Those who eat a diet full of these foods are less likely to develop macular degeneration.

Vitamin C is highly concentrated in the eye. This antioxidant helps to protect the eye from oxygen related damage. More specifically, it protects retinal cells and prevents macular degeneration and other diseases of the retina. Vitamin C also reduces intraocular pressure by raising the acidity in the blood. This helps with the common visual impairment glaucoma.

Vitamin E is another antioxidant that protects the eye from severe damage. It protects the lens from severe damage such as cigarette smoke and light damage. Vitamin E protects the retinal cells from malfunctioning and also reduces the risk of macular degeneration and cataracts. Rich sources of vitamin E are vegetable oils, nuts and seeds.
Chromium is a natural option for lowering the pressure in eyelids. Chromium is often supplemented by glaucoma patients. Sources of chromium include starchy fruits and vegetables, Brewer's Yeast and egg yolks.

Selenium is a mineral that helps produce the protective enzyme glutathione peroxidase found in healthy eyes. Selenium also boosts the effectiveness of antioxidants such as beta-carotene, vitamin C and vitamin E. Doctors do not normally recommend a sole selenium supplement. They prefer that it is taken in a multivitamin or through foods such as garlic, onions, mushrooms and fish.

Zinc aids in the prevention of retinal deterioration that comes with age. Zinc produces antioxidant enzymes found in the eye, and many doctors recommend this essential mineral in addition to other treatments and medications. Zinc also works with vitamin A to help the eyes adjust to different levels of darkness. The richest food sources of zinc are protein rich foods such as all meats. Vegetarians can find zinc in beans and dairy, but these sources are not as potent.

Spreading Awareness for Diabetic Gastroparesis!

The last 5 months have been amazing compared to the previous 5 months. I am back to eating soft, easy-to-digest solid foods like potatoes, rice, pasta, carrots, cucumbers/pickles, cheese, canned peaches and pears, bananas, melons, eggs, puddings, yogurt, crackers and some cookies, chicken, fish, and turkey. There are foods that I can tolerate when I am at my best that I still haven't added back into my diet like grapes, fresh peaches, pears and nectarines, peeled apples, cooked broccoli and cauliflower, peas, peppers, and popcorn - these foods are considered non-GP-friendly but every GPer is different and while going through a trial and error stage I learned I could handle these foods, at my best. This time around however, I've been somewhat hesitant about adding these foods back into my diet. I admit I'm a little scared to try them even though I am about 95% sure I could handle them, but I am still scared. Things are going so good right now that I just don't want to chance it. This time around I have gone extremely slow with adding foods back into my diet, taking months to get back to my best instead of adding everything in only a couple weeks. After the winter I had last year I think it's understandable. I hate the fear of eating that comes with this disease, not knowing if a meal I'm going to eat will put me in the hospital or not (my average stay in hospital is 10 days/episode). Eating is a fear no one should have to live with.

Speaking of fear, I am working on facing something that I've never really liked doing but I have a very good reason to face it! For awhile now I have been wanting to get involved with my local Juvenile Diabetes Research Foundation to help spread awareness about diabetic gastroparesis. I want to share my story in hopes of encouraging young diabetics the extreme importance of taking good care of their diabetes and how easy it is to take care of in comparison to having complications on top of it . So I got in touch with the Outreach and Mentoring Program. I told them a bit about my story and they responded by saying that I have a very powerful story and that they'd like me to share it with type 1 diabetics and their families at a speaking engagement sometime this December! Here's where my fear comes in, I am a shy and quite person and public speaking has never been my strong suit BUT this topic is SO important to me that I have to do it. I am hoping that by telling my story I'll be able to
spread awareness and possibly help save someone from having to go through what I go through everyday living with gastroparesis. I know I am going to be nervous before hand but once I start I know I'll be fine. Still, the thought of it gets my heart racing..lol I've been in rooms full of medical professions teaching them about gastroparesis and answering their questions as they try to figure out the how's and why's of GP (I go to a university hospital so there's always a ton of medical students and residents along with the doctors). I am always comfortable talking about my health so I am sure (fingers crossed) that the speaking engagement will go just fine. I'm nervous but at the same time I'm pretty excited about it!

I'll keep you all posted how it goes!

 

Having Diabetic GP vs Being An Athlete

I have been an athlete my entire life! I started ice skating just before I was 2, I started tee ball at 4, hockey at 5 and softball at 6. I continued playing both competitively until 22, playing both sports sometimes year round. Sports have always been a big part of my life and have helped shaped who I am today. Sports are definitely in my family, my 75 year old grandma still drives a Zamboni and has my entire life and my 80 year old grandpa still works at a golf course! My mom and dad are also athletes so it runs in my blood! Most of my best friends growing up I met on teams I played on. Basically, I live and breathe all sports! I enjoy an active lifestyle and have always LOVED pushing myself physically! I love to compete, and at anything it doesn't matter what it is, I am a competitor through and through!

I have been a diabetic since I was 4, so growing up being an athlete definitely helped my diabetes and helped keep it controlled and keep me healthy. I definitely had high and low blood sugars throughout my years playing hockey and softball, before, after and during games but I was always able to correct it and continue on playing. Never having any serious reactions for close to 10 years and I contribute that to being an athlete.

Since having Diabetic GP, that began in 2007, I have not been able to play on any sports teams, I am unable to commit to any teams because of my symptoms and frequent hospital stays. However I do other activities like golfing, swimming at the lake, yoga, going for daily walks, and/or pilates when I can. I sometimes go to the gym to work out if I'm up for it. One thing I cannot do is over exert myself as that can bring on an episode of the GP which is extremely frustrating because I love pushing myself physically. Here's my frustrations with having Diabetic GP vs. Being An Athlete:

1.If the GP symptoms are happening that means I'm not doing anything physical, I'll be laying down not wanting to do any type of movement let alone workout...very frustrating!

2. If the GP symptoms are calm or not present, then it's my diabetes that starts acting up and quite often, more often then it ever did growing up. I never leave the house without sugar or glucose tabs. If I end up on the low side, any activity is out of the question no matter where I am or what I am doing, it stops me in my tracks.. I have to make sure my sugars are anywhere from 9.0 mmol/L or 165 mg/dL to around 15 mmol/L or 270mg/dL because if don't I'll definitely have a low while exercising, even if I'm just walking to the store that's 10-15 min away. I've had to stop many times from  low sugars and it's only been this bad since having GP. it was never this bad growing up and I was way more active. I know how to handle my diabetes and exercise, I grew up with it and I was always active and training and I definitely did not have the issues with the severity of the low and high sugars compared to now. My sugars are always moving, never stable which makes it very difficult to maintain a healthy active lifestyle...this is very frustrating!

3. I CANNOT over exert myself. I have known this for quite some time but I definitely learned this one again in a hard way. Last November Brian and I were moving to a new town and it was a quick move which was a little stressful in itself but what did me in and what helped put me in the hospital last winter for 4 1/2 months was over doing it, over exerting myself. We moved onto the 3rd floor so going up and down those stairs with heavy boxes and furniture was tiring and I didn't even move very much myself because everyone else could tell I wasn't doing to good as the nausea started showing up. Thanks to Brian's mom and stepdad for helping us move because we would not have been able to do it ourselves. That move was painful, I have to admit. I am a physically strong woman and I always have been so now having Diabetic GP I get extremely frustrating because I can't even move without getting sick....This is extremely frustration!

4. I will most likely never play softball ever again because of the Diabetic Retinopathy in my eyes. The GP made it worse for awhile but  it's now stable. I've had 16 procedures on my eyes, whether it be surgery on my eyes where I was put under, laser surgery, or other treatments that were given by needles in the eyes. None of it has changed my vision but it has changed the way my eyes focus. It takes me longer to focus in on things. Catching a ball coming towards me wouldn't be good because I'd lose sight of it...This is real frustrating because I was a pretty good ball player and I'd do anything to be able to play again. I miss it!

5. I've always been strong physically. So now, when I've gone weeks or months without being able to eat and am extremely weak and have absolutely no muscle, I still think in a strong, physically fit mindset. So when I go to do something light like say climb a flight of stairs, I get so frustrated because I am not as strong as I used to be and something as small as that, is very difficult...that's if I can even climb the stairs. I used to run stairs all the time training for hockey and now sometimes I am unable to climb one flight. This is so very frustrating!

I try and take advantage of everyday that I am feeling well. I'll do stretching, yoga, pilates, and/or go for walks whenever I can. It's important to get as much exercise as you can with Diabetic GP, plus being active just a little bit will help move things around in the stomach. A good time to go for walks or do a little moving around is after meals. This can really make a difference and help with bloating which can help lessen the pain and discomfort.

I would give anything to be able to play ball or hockey again! Every year there's a co-ed hockey tournament in my hometown and every year my goal is to play in it. Unfortunately I have yet to play in it but I will not give up! I will play in that tournament someday!!

Hope today is a good tummy day! :)

GI Specialist Appointment

Two weeks ago I travelled almost 700 kilometers for an appointment to see my GI specialist who specializes in gastroparesis. Dr. Andrews is an Amazing doctor and I highly recommend him! He is easy to talk to and very caring, he is sincere and genuinely concerned, he answers every question and gives his honest opinion on what's best for me. I trust my health in his hands!

I had sent Dr. Andrews a medical report to fill out a few weeks before the appointment so he had it ready when I saw him. The medical report was for a federal disability program here in Canada. He gave a lot of information on my case and on how Gastroparesis effects my everyday life. He included all the paperwork from my last few hospital stays, which was a ton of paperwork due to my 4 1/2 month long hospital stay. He also included blood work results. With the medical report and my part of the application, it turned out to be a lot of information on gastroparesis, so hopefully I am approved and that it doesn't take too long to find out...I'll keep you all posted :)

I got Dr. Andrews to write up a new and updated Care Plan for me for when I go into the ER and/or hospital. It's a guideline for the doctors to follow on how to treat my Diabetic GP,  what medications to give, how much and how often. It helps A LOT because so many doctors have no clue about GP and how to treat it. More often then not I am having to teach the doctors and nurses about GP. I have two care plans, one from Dr. Andrews  now and one from my Endocrinologist. The one from my endo has info on what to do if my sugars are low and I am unable to keep anything down to bring it back up. She states that I am not to have any juice because the acidity can make the nausea worse, which it does. I am to have glucose tabs (they dissolve in my mouth) or if those don't work I am to get an injection with dextrose to bring the sugars up. She also has on my care plan to give pain medication subcutaneously because getting an IV is extremely difficult, it can take hours, and if they do get one it doesn't last long. Getting it subcutaneously I can get the medication immediately. Plus subcutaneous injections last longer then getting the pain medication through an IV. My endocrinologist has a lot of pull at the hospital I usually go to, so having a care plan from her usually gets things done properly and efficiently. But also having one from Dr. Andrews, the GP specialist will also help especially at other hospitals. Having two is definitely not a bad thing and it can only help! It really helps ease the stress of going into the ER and not knowing what doctor I am going to get and if they will give me the proper medication and doses or not.

Dr. Andrews was overall happy with my current medications. Both him and my family doctor agreed that I should not take Busopan (an anti-spasmatic medication that relaxes the muscles in the stomach and it is used for nausea and vomiting) along with Domparidone because Domparidone is a motility medication that gets the muscles in the stomach moving so basically both medications cancel each other out. I obviously want the stomach to move so discontinuing the Busopan I am on board with. I was only on the Buscopan daily for 3-4 months so we'll see if things start moving a bit faster being off of it. I am also lowering my dosages of Cesamet (Nabilone) and Zofran (Ondansetron) as my nausea decreases.

I asked when is the best time to get a feeding tube?  I was unable to eat for over 5 months this past winter and was on TPN (total parental nutrition) for about 5 weeks total. There were talks about getting a feeding tube placed but I didn't want to get it done without Dr. Andrews opinion. Unfortunately he was out of the country at the time and was unavailable. I didn't want to get it done without his opinion and the GI doctor I had at the time looking after my case, was reluctant to proceed with the feeding tube when Dr. Andrews was gone. Now that he is back I got his opinion and he suggests that if I go through an episode like I did this winter then I should get a j-tube placed instead of getting TPN through a picc line. TPN has a lot of risk of infection compared to a j-tube and getting nutrients through a j-tube, which goes directly into the small intestine, is a more natural way of receiving nutrition versus getting it through a picc line that goes through your veins. The small intestine absorbs the nutrients more effectively rather than through the blood stream. I am and always have been afraid of getting a feeding tube but if it's safer than TPN and I am going through an episode like that again, then I am on board with that decision, as scary as it may be! :)


I asked about getting another Gastric Emptying Study done to maybe see any improvements in my digestion times even though I am doing good now compared to my last one 5 years ago while I was sick so I imagine going through an episode versus not will make a difference in the results.  Dr.Andrews said that we already know I have Gastroparesis so there's really no new information we can learn from doing another one. When I was at the Mayo Clinic in 2008, they recommended I get a nerve test done annually to check for more nerve damage throughout my body. I have never had one done and it's 5 years later, so I asked about getting one done and I got the same answer, we already know I have nerve damage and we probably won't learn anything new. Plus it's a pretty costly test.

All in all it was a very good appointment! The next one will be a conference call so I won't have to drive 7 hours to see him...so happy about that as travelling can be very difficult depending on how I am feeling :)

Hope everyone's having a good tummy day! :)