Sunday, 30 September 2018
Saturday, 2 July 2016
Tuesday, 28 April 2015
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.
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!
Tuesday, 3 February 2015
Thursday, 16 October 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 :)
Saturday, 15 February 2014
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! :)
Monday, 21 October 2013
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
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.
Sunday, 20 October 2013
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!
Thursday, 29 August 2013
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! :)
Monday, 12 August 2013
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! :)