Thursday, 16 October 2014

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 :)

Saturday, 15 February 2014

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! :)