Monday, 21 October 2013

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.

Sunday, 20 October 2013

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 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

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! :)

Monday, 12 August 2013

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 happy about that as travelling can be very difficult depending on how I am feeling :)

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

Friday, 26 July 2013

My steps to feeling good!

After a pretty difficult winter, I am finally feeling great and eating some solid foods for the first time in 8 months!

The last 2 months have been exceptionally well compared to the previous 6 months! There are a few things that have contributed to a successful recovery after the longest stay I've had to date.

1. Diet - I went extremely slow when adding in new foods. I started off with a clear fluid diet, jello, broth, popsicles and watermelon, including ensure 3 times a day, for 3 weeks. Then adding eggs,  dairy including skim milk, yogurt, pudding, creamed soups, and ice cream, adding one new item every couple days. After about 5 weeks of these foods I added 1% cottage cheese, mashed potatoes, carrots, white bread, white rice, soda crackers, and arrow root cookies, and again one item every couple days. This is where I am at right now. The next foods on my list over the next couple weeks will be white pasta, mushrooms, onions (extremely cooked), fish, chicken, and turkey.

2. Exercise - I've been walking and doing yoga as much as I can. Whether it's a 1/2, 1, or 2 hour walk followed by a 1/2 hour of yoga. Doing a bit of exercise after each meal has helped a lot. Honestly, it just feels so good to be getting some physical activity in again. It's not like my younger days filled with year round hockey and softball but I'll gladly take it!

3. Therapy - I've started seeing my therapist on a regular basis again. Talking through my stresses has definitely helped my overall health. I mostly talk about my health but regardless of what's bothering me health-wise or not, it just helps to talk! I think everyone should see a therapist regardless of your health situation.

4. Blood Sugars - Keeping your blood sugars controlled while also living with gastroparesis is close to impossible and as a result I am testing between 15-25 times a day because they are never stable. Having an insulin pump has helped improve my blood sugar control because I am able to give insulin over a course of a few hours instead of all at once since my stomach digests much slower. However, I still have severely high sugars and severely low sugars and everything else in between. If I am able to I will go for walks when my sugars are high to help bring them down faster or do some yoga to build up a sweat. I've been exercising quite a bit more then I usually do and I have noticed an improvement in my sugars so if I am feeling well enough I take advantage of it and do whatever I can...and it feels GREAT!

When I am healthy and in "remission" as some would say, all I really deal with is blood sugar control. I can and do get nauseous with high blood sugars and that can bring on vomiting which then can lead to pain if the vomiting persists, which means I'm heading to the hospital soon. Which is the more reason to keeping good blood sugar control...or at least try to. Usually though, I don't vomit with high sugars just a little nausea. Even with being in "remission" and eating some solid foods again, the gastroparesis is always present. It's always effecting my blood sugars and I worry about that a lot. Diabetes and gastroparesis are a bad combination of conditions/diseases to have, not that any are good but these two can lead to more complications unfortunately and because of that, eating and exercise (when your able to) are extremely important in trying to keep blood sugars under control.

My hemoglobin A1C is 8.3 which is a high-normal number. Ideally you want to be between 5-6. I've been as high as 14 which could be part of the reason why I have GP now. I have noticed that most diabetic GPers have an A1C averaging between 6-9. These aren't horrible numbers but considering our sugars are unstable with diabetic GP our A1C numbers are almost a false positive. Even though the numbers are decent, the control is not. What's a diabetic GPer to do? To control blood sugars you must eat right and exercise often but with GP, sometimes we can eat and sometimes we can't and when we can eat, it's mostly foods that are not the healthiest or best for diabetes. GP limits the exercise we get. Some days just getting up to get a drink is a task and a half and then other days I can go for an hour or two long walk and do yoga, it's hit or miss. That's why I try and take advantage of every day that I am feeling good because I don't know how long it will last.

5. A Positive Mindset - Staying positive is my #1 rule! I believe that everything has a positive aspect and a negative aspect and it's up to you to decide which way to go. I try to always look the positive way and it DOES make a difference! Living with diabetic GP stresses will arise but you have to think positively that you'll get through what ever it might be and keep moving forward. Times do get tough but then they do get least for a little while :) I try to always strive forward as diabetic GP knocks me down from time to time I will NOT let it keep me from getting back up again, ever!

I am going to keep doing what I am doing, because so far, it's working! My goal is to beat my 15 months of  "remission", no vomiting, no pain, and no hospital stays and to have no more 4 1/2 month long hospital stays. This means being extremely strict with my diet and exercise plan, minimizing stress, checking sugars numerous times a day, and staying positive. Keeping a log book with my blood sugars, food, exercise and anything else I do in a day helps me keep track and to notice any patterns in the way I feel and what might bring on an episode. Doing all this is a job in itself but it helps so it's got to be done...whatever it takes to stay healthy!

I am very appreciative for every good day I have and thankful for the strength I have to get through the bad days. I am forever grateful towards my family, friends and loved ones for all their support and love. I could not do it without them!

Hope your all having a good tummy day, cheers! :)

Friday, 5 July 2013

Yet Another But Fairly Good Hospital Stay

After being in the hospital for four and a half months I was able to stay home to stay home for a month and a half with very little symptoms, only a little nausea that was tolerable and bloating of course. I had a few days of emotional stress along with quite a bit of physical work which put a lot on my nerves causing or at least contributing to another hospital stay. Other factors could have been blood sugars, they were bouncing up and down just like and almost as fast as a bouncy ball and/or it could have something I ate as I was adding new foods into my diet at that time. A frustrating part about having diabetic GP is there usually is more then one factor as to why I get a flare-up. On a Thrusday evening I started to get sick. Once the vomiting continued and the pain started I went to the ER.

The entire hospital visit went Very well! First of all there were no line ups in the ER when I got there so I got in right away, it could have been because it was 5:30 am. Incredibly they got an IV on me fairly soon, the second person trying got it quickly. I got IV fluids, zofran, gravol, and buscopan all through the IV and I got morphine subqutaniously (it lasts longer then getting it through the IV) I spent a day in emerge then I was admitted on to the medicine ward. Soon after my endocrinologist, who has a lot of pull in this hospital that I've gone to for the majority of my GP "life", heard I was in hospital and came to see me right away. I told her that I needed a couple things changed to my medications so she went and talked to my admitting doctor and got things changed, pain meds more frequently, she changed my novo rapid insulin to humalog that has helped stabalize my blood sugars a little, and something to help me sleep because I hadn't slept in  2 days so she gave me a strong sleeping medication that really helped me get rest.

With getting in quick to the ER and getting medications fairly fast then having my endocrinologist step in, like she usually does especially if I ask her due to having issues with other doctors which is mostly about medication complications. Having eveything go very smoothly and quickly contributed to my stay being a "short" one of 6 days. My average for each flare-up or bad episode is 10-12 days so I can handle 6 days :) I was able to keep things down clear fluids after 2 days. Thats amazaing considering my last episode was 3 weeks before I could keep anything down. By the 4th day I was feeling good, going for walks, moving around lots and the morning of the 6th day I was discharged. Of course I was not happy to be in there but because I was, things could not have gone bette

I have been home for 2 days now and I am on a clear fluid diet with ensures at every meal. I've had energy and today I went walking and shopping for 3 hours and that felt real good physically! I have had nausea in the mornings but I tend to have rough mornings so thats normal. The nausea hasn't been too bad so it's tolerable which allows me to be able to get things done around home if needed. Overall things are good and I am feeling good so I can't complain abiut anything!

I hope everyone readsing this is having a Great day especially health-wise! Happy tummy day to my fellow GPers!!

Tuesday, 28 May 2013

The Importance Of My Support System For Good GP Health!

Not only are diet, medications, exercise, a good team of doctors, and a positive mindset important in your overall diabectic gastroparesis health and management plan but a good support system with family, friends, and loves ones is a key aspect in your overall health, or at least it is in mine. When times are tough healthwise for us GPers, help from others is extremely helpful and is greatly appreicated! There are days where doing the dishes, or laundry is just too much, even getting ready for the day is a job in it's self. The physical help and the emotional help  GPers get from our support systems is key. Having those people to talk to helps as sometimes the Gastroparesis keeps you at home for days at a time and not around a lot of people.

Family and friends who are in a support system play a huge role in someone who lives with diabetic gastroparesis. The help they give by doing errends, household chores, cooking, and any other tasks and tending to, lifts so much weight off the GPers shoulders. Having family and friends around helps emotionally and it's uplifting. Just knowing you have support eases the mind, which is important because a GPer deals with A LOT on a daily basis.
I've leared a lot about the importance of a support system this past year since I moved away from family and friends to living with my boyfriend Brian, where we dont have family and dont know to many people yet. Everything that my family and friends would help me with when I'm sick was now all  on Brian. So when I'm sick I rely solely on him instead of many family members and a few friends to help me out if I needed it. It's hard on him, he works 10 hour days plus an hour commute each way then comes home to take care of me. It would be difficult handling all of that and the added stress that comes with it. I am so greatful and appreciate everything Brian, my family and my friends have done over the last 6 1/2 years, thank you from the bottom of my heart:)
When Brian and I decided to move in together I made the decision to make the move to another province as we were in a long distance relationship. I decided to make the move because at that time I figured it was easier for me to move since Brians career was going good and we had a good home to live in. We figured we had thought of everything, I had doctors and specialists lined up, I was going to be closer to my GP specialist, everything seemed to be ready, but the one thing we did not think about was my support system and just how important it really was in my GP health.
Whille I was in hospital for 4 1/2 months, Brian was the only one that could help me with fighting with doctors if they weren't giving the right medications, if I need something or needed something done, he was the only one I could rely on, meanwhile hes working full time and taking care of our home. It made me realize how lucky I am to have the support system I have back home and it also made me realize what an amazing man I have for the unconditional support and love he gives me. Brian noticed over the course of a while that whenever I had family come to where we live to visit, my health always seemed to improve. Just having them there lifted my spirits and it lifted me emotionally and mentally. Having family around felt amazing and I missed it. Back home I always had family around when I was sick and here I don't. It's something I'm gonna have to get used to because it's my new normal. Or is my old normal the better choice for my overall health? That's a question Brian and I have to think about, is being back home better for my health? This is an incredibly hard decision we're going to have to make.  Having positive people who believe in you and support you is a part of our overall health and it does make a difference, and I know that. I just can't imagine how those GPers out there manage who don't have a support system in any way. I am so grateful for the family I have:)
Back home I had a job with my uncles company that worked around my illnesses. If I needed to sit or lay down for a bit it was ok, if I couldn't come in for a day or 2 or a week or sometimes months, or I had to leave early it was all ok. This job and the support I got from everyone there was key in my overall health as well. Just knowing that I had a secure job was key in my stress levels and therefore in my overall health. 
I have had good stretches or have been in remission as I call it, a few times in my 6 1/2 years with GP. I have gone 3 months with little symptom of nausea and vomiting, I went 7 months with fairly no symptoms, and my longest I went 15 months with no symptoms except a bit of nausea due to high blood sugars, no vomiting or pain. I believe having a good support system in place was part of why I was in remission and why it is possible with gastroparesis! Whether a support system consists of one or two or twenty people, and which ever way they help out even if it's just to come for a visit, it makes a difference. It relieves stress, which in turn is better for anyones health. Just having people around can brighten a GPers day!

It's hard for me to admit that I, at times, need help from others but living with diabetic gastroparesis it happens and I have trouble accepting that, I always have. Whether I am far or near from my family I know I always have there support and that's what's important. I hope all you readers with gastroparesis have good support systems in place :)

Happy tummy days to everyone!! :)

Thursday, 23 May 2013

A tough and long episode

Update April 5 – May 23

Today is April 30th 2013 and I am feeling Great! Actually I've been feeling great for the last 5 days! However from April 5 until April 25 I was fighting harder then I have ever fought before. For 21 days I was unable to keep anything down and I have never gone that long before with nothing not even ice chips. For those 21 days I was not getting any form of nutrition what-so-ever, I was getting regular IV fluids plus zofran, gravol, pantoloc, morphine or diludid, and reglan all through my picc line. The morphine was making my nausea worse so the doctors put me on fentanyl but it didn't last long, plus I was uncomfortable taking it because I had never taken it before, diludid seemed to work better. I find if morphine isn't doing the trick, and it usually does, then diludid works just fine for my pain.

For those 3 weeks all I could do was lay completely still on my left side, if I tried to change positions the movement would make me get sick. Laying on any other side made the nausea worse. The nausea I get is so strong and intense it completely stops me from any type of movement. Even talking becomes literally painful and makes me nauseous, I can't keep my eyes open because that also makes me more nauseated. Getting up to use the washroom, when I'm this bad, is almost torture that I hate having to go. All that movement usually does make me sick. All I could do was lay on my left side in the dark because lights were also too much for me in this state. I hated it when someone would come into my room and turn the lights on, it just made things more uncomfortable. Then there’s the pain, the sharp constantly aching pain. My blood pressure would go as high as 200/130 because of the pain. The combination of the nausea and the pain is completely debilitating. I can't do a single thing but lay there shaking my legs or feet because for some reason that helps me to relax a little.

On Friday April 26 I woke up and immediately I knew this is a better day! I was so happy and thankful for this day finally arriving. I was still in some pain and the nausea was definitely still affecting me. I couldn't watch much tv because it made me dizzy so i would just close my eyes and listen to it. Talking didn't bother me. My mom was visiting and she could tell that I was doing better, I was more awake and alert and talking a lot more. The day before, Thursday, I saw a new GI doc and after he reviewed my case he immediately put me on TPN, which started Friday evening at 6pm. I began to feel better and it continued as the days went on.. The doctors should have started me on TPN a lot sooner and because of this the new GI doctor wrote in my chart that I should not be laying there getting no nutrition, that TPN must be ordered not long after admission.

This time around the dieticians were putting insulin in with the TPN. For the first few days I was having relatively pretty good blood sugars with only a couple high readings. The next 3-4 days after that, I was having continous highs, numbers like 29.7mmol/534.5mg/dl or 32.6mmol/586.8mg/dl. Dangerously high numbers that lasted for a couple days. I was adjusting my pump and giving boluses (fast acting insulin) plus I'm getting the insulin in the TPN, and nothing was working. I guess you could say that I was resistant to the insulin. Then once again the pattern in my my blood sugars was changing. I began to be very sensitive towards the insulin. I started having mulitiple low sugars, having to receive dextrose through my pick. This brought my sugars up one a minute or two afterwards, whereas taking in glucose tabs, apple juice, or even straight sugar would not bring my sugars up. I was now somewhat resistant to me taking sugar in orally. The dietician and I decided that decreasing the insulin in the TPN was a good call. That helped a little but I was still having lows, sometimes as low as 1.7mmol/30.6mg/dl. It came to the point that I would go hours through out the day where I would turn my pump off and only be on the TPN insulin. Doing this my sugars became more stable for the remainder of my stay.

Saturday April 27th was better then the day before. I was able to keep down ice chips and a tiny bit of water. The nausea and pain were finally starting to subside, thankfully. I could finally watch TV instead of just listening to it without getting dizzy. Sunday I worke up and again I was feeling better! I was able to keep a clear fluid diet, jello, chicken broth, apple juice, tea, coffee, and water. It was very exciting to be able to eat and drink a little, it felt so Amazing!

By Monday April 29th I was having NO pain and NO nausea. I was feeling Great! I was moving around, going for walks. I felt more alive. Tuesday was the same, no symptoms, another good day! I made a bad decision at lunch however that would set me back another week, I ate 2 soda crackers. It was just to soon, my stomach couldn't tolerate them. Thats how sensitive my stomach is right now. The next foods I'll be introducing into my diet will be Ensure and a full fluid diet, creme soups, puddings, milk, and any type of liquid.

By Wednesday morning I knew I was having another episode. I woke up from a nap and soon after I started to feel really nauseous and then my breakfast came back up. I was also having pain. It was way to soon for the crackers. My stomach is just so sensitive right now. I thought it would be a quick setback as I could still keep a little down throughout the day but as the days went on the worse I got. So again, I laid in bed unable to move, couldn't really talk, in so much pain, and the intense nausea making me unable to move or really communicate. I laid in bed like this until the following Wednesday May 8th. I woke up and could once again tell that this was a better day! Lately on the first few days that I start feeling better I've been dealing with insomnia, usually for 2-4 days at a time. This alone can make me feel sick but luckily the lack of sleep hasn't done it.

It's Thursday May 9th and I am having a great day! Keeping down fluids again and moving around going for walks, building my strength. This has been a rough go this last 4-5 months which means recovery (getting back to solid foods and putting weight back on) will take some time and it will be hard but it's somethimg I have done before and it's something I know I can do again.. Adding new foods will be slow going so patience will be key. Getting back to your "normal" self after a bad episode takes time but it also helps to have a good support system. I, thankfully, have an amazing support system in family, friends and of course my very caring and supportive boyfriend, Brian. I am extremely thankful and greatful to have a good support system in place as I know there are GPers who don't have support from anywhere.

During this episode my sodium level, vitamin D, vitamin B1 and electrolytes have been extremely low, like every time this happens. I  received a shot of vitamin B1 plus potasium and magnesium through my picc line. When it came to my vitamin D levels my doctor had an idea! He had worked in Africa for awhile with seriously ill children whose vitamin D levels were extremely low due to being malnurished. The doctors in Africa would give the children a shot of 50,000 units of vitamin D. My doctor had never seen or heard of giving that high amount of vitamin D at once. But it worked! The children would feel a little better with the added vitamin D. Since my vitamin D levels were extrremely low my doctor thought this idea would be perfect for me. It turned out though that my doctor could not get a that big of a dose so he settled on giving me 3000 units a day by pill.

After a month of being in this episode, my doctor decided he wanted to do an endoscopy on me to see if he could see anything in my stomach, like ulcers and to check the bacteria in the duodenum and stomach. Thankfully everything came back normal. The GI doctor who did the procedure said that everything looked remarkable!

What if some of my medications were part of the problem? I have had good stretches or was in "remission" of  3, 7, and 15 months, with very little symptoms basically just nausea mostly due to high blood sugars. My doctor thought it would be a good idea to look at my meds ( lyrica, amitryptaline, zofran, nabilone, domparidone, pantoloc, depo pervera, diludid or morphine, and reglan only in hospital) to see if any were doing more harm then good. I had been off my meds for a month from not being able to keep anything down so it was a good time to go, or stay, off of them and most of the meds should have already been out of my system. We looked into all side effects that I could be having from anyone of my medications. Interestingly enough all but one med, diludid, caused nausea and vomiting and half of them could possibly cause abdominal pain. I completely agreed with my doctor doing this because in the 6 1/2 years that I've had GP no doctor has ever wanted to try this approach and especially since I haven't been doing that well I was all aboard on the idea. I am still on zofran, nabilone, lyrica, domparidone, pantoloc, diludid and my doctor added buscopan. So far I'm doing good with new doseages of a couple meds, the adding of buscopan, and the discontinuation of a few.

My sugars during this time have gone from one extreme to another. When I am not on TPN my sugars are fairly stable. However when I'm on TPN I can have severely high sugars so I make adjustment on my insulin pump and/or more insulin is added to the TPN. At one point the doctor had me double the amount of insulin in my pump which worked for a few days with stable sugars. But then I started having super low sugars multiple times a day which is real scary. I got it figured out after a few days of lows. My sugars are stable now.

Things are starting to turn around. I was discharged from hospital on May 17th and I'm doing well. only eating a clear fluid diet with ensure ( I just introduced ensure into my diet, hopefully it stays down!) I have had little nausea but no vomiting or pain. I have very little energy or strength but I am working on that every day by going for walks and doing yoga. I am taking my diet very slow and not rushing to try news foods to fast as that could bring on another episode. Praying I continue to due well and another good stretch is on the way! :)

Wednesday, 3 April 2013

Super Bugs, Care Plans, and Updates!

I found out today that I have a super bug called Vancomyacin Restistant Enterococci or VRE. Enterococci are a group of gram-negative, round-shaped bacteria that commonly live in the gut, although they can cause infection anywhere in the body. They are resistant to several antibiotics, but in the past, physicians could rely on the drug vancomycin to effectively treat enterococcal infections. In recent decades, however, some enterococci have become resistant to vancomycin. The two main species that cause problems are vancomycin-resistant Enterococcus faecium and vancomycin-resistant Enterococcus faecalis, with E. faecium being the most common. As a result I'm quaranteed in hospital but at least I have my own No one has to wear masks or gowns just some gloves when they come into my room. I just have to wash my hands frequently. I'm not sure but I'm kinda thinking this VRE is the reason I got sick again. They say there's usually no symptoms but it is a possibility especially with a weak immune system like mine. One side effect is getting UTI's which I have had a couple just recently. This bacteria lives in the bowels and stomach so yeah I think its affecting my GP. The doctor told me a lot of these cases happen on the surgical ward which is where I was my last visit a couple weeks ago. It also doesn't help that I've spent basically 3 months in hospital so I'm not surprised I got this super bug unfortunately. I'll be getting antibiotics and I'm hoping that it clears up soon so I don't keep getting sick.

Four years ago I had another bug called the Helicobacter pylori or H-pylori bacteria which also lives in the stomach. Symptoms are abdominal pain, nausea, vomiting, bloating, belching, and black stools. I had H-pylori twice but was tested three times, the third being negative. They test it with the carbon urea breath test in which the patient drinks the carbon urea breathe test and then blows into a balloon. They are then able to detect if the bacteria is in your system or not. A large course of antibiotics were given. Something that can be very tough when your sick and trying to keep pills down especially when they're huge pills and a lot of them. Gastroparesis is such a catch 22 situation sometimes. It makes you extremely nauseated and vomiting and inorder in stop these symptoms you need to keep pills down, well you can't when your experiencing severe nausea ans vomiting.
GP Sucks!...period.

Thankfully, yet again, I have an awesome doctor! This one actually sits down at bedside and talks with you, isn't at all rushed to get to the next patient, he answers all your questions and is genuinly sincere. He is one doctor that thinks outside of the box and is wanting to get a plan set in place for the diabetic GP. He is setting up an appointment with a physcologist to talk to them about relaxation methods and ways to treat and cope with anxiety.Obviously things are not working so well with my health so something's gotta change and this doctor is willing to help and that's all I'm asking for, a new care plan and someone who is there who won't give up on me and my health.

I've been in hospital for 6 days now and considering the VRE I'm doing relatively well. I'm up moving around today which I wasn't yesterday so that's always a good sign. I got sick once today but not at all yesterday. The nausea and pain are settling down slowly but surely. They have me on potassium, zinc, erythromycin, zpfran, gravol, domparidone, lyrica, ativan if needed, and morphine or diludid. Depending on how bad my pain gets I can choose accordingly. I'll be starting more antibiotics most likely tomorrow for the VRE. I'm allowed to go home even if I still have the infection so that's good because I'm hoping to be home in the next couple days:)

One thing that has helped me living with diabetic GP is having a "care plan" in place. My endocrinologist wrote up a care plan for me to use when I go to the ER. She listed medications that I need, erythromycin for stomach motility, buscopan for spasams in the stomach, cesamet for nausea, morphine subqutaneously because I'm a very hard IV start so giving me morphine sub-q I can get it faster and it also last longer if they give it to you in the muscle rather then through the IV or picc line in most of my cases. She also states that I need antimedics. And if my  blood sugars are low not to give juice because the acidity is to high and can cause nausea and vomiting. If I have a low sugar then I need glucose tabs, gel,glucagon, or straight glucose IV. My care plan has helped me so much when going into the ER. It definitely takes away some anxiety I have when first going to the ER. I get anxiety because I have no idea what kind of doctors are on and if I'll get the right medications or not. This care plan has helped tremendously and I recommend that everyone talk to your doctor to get one set up. Im wanting a new one in place as I live in a different town then where I was at when using my older care plan. Plus its a few years old and something's can be added or changed. I'm going to ask the doctor I have right now in hospital to write one up for me. Care plans can be and are a huge life savor. Honestly things have gotten a lot easier overall by just having one in place.

That is all for now:) Happy Tummy Day Everyone! :)

Thursday, 21 March 2013

Updates and Blood Sugars

It's been a week since being discharged after the long 63 day stay in hospital. The first 2 days at home were great! I managed symptoms with zofran, nabilone, domparidone, and medical marijuana. I had energy but most of alli was feeling great! The next couple days at home were pretty rough. Very nauseated with pain and of course some vomiting. It wasn't letting up and I figured I had a bladder infection since all the symptoms were there. So I went to a walk-in clinic and sure enough I was right it was a bladder infection. My immune system is completely shot especially since getting a bladder infection puts me in the hospital almost every time I get one. So that brings me to today, Thursday March 21, 2013 and I'm in hospital...again...Ugh!! But I'm feeling pretty good today and the plan is too send me home tomorrow. They loaded me up with some antibiotics, nausea meds, ans pain meds.

My sugars through most flare-ups are pretty stable, that's one positive thing about not tolerating anything by mouth. I usually run about 8-12Mmol or 145mg/dL - 220mg/dL. That way I'm not running to low when not tolerating anything by mouth.

One thing that really affected my sugars was being on TPN. There were measures that could have been taken by putting insulin directly into the TPN bag but they (doctors and dietary) didn't do it, why? I have no idea. My sugars for one entire week ran in the 30's Mmol or 630mg/dL ...this is dangerously high numbers and could have caused a coma or some serious damage. This includes my diabetic retinopathy in the eyes. It could cause blindness or temporary blindness which I have had numerous times.

I was adjusting my basal rates on my pump everyday trying to get enough insulin. I began having low sugars, sometimes as low as 1.4Mmol or 25mg/dL. This was happening every morning at about 6am. It didn't matter how much I decreased my basal rates on my pump my sugars were still drastically dropping. I fell a few times because of my low sugars which can be very scary and very scary for your loved ones trying to help. I fell on my left side a few times one night and for the next couple days I was hurting. I actually thought I had sprained or broken a bone in my foot but I had it checked out and it turned out to be badly bruised. After being on the TPN for a week I got them to stop it because it was causing to much discomfort and just feeling gross on top of the GP. It really played havoc on my sugars. Unless I get insulin in the TPN, if I ever need it again, I will refuse it. Trying to control sugars with GP is very difficult to say the least.

Happy tummy days to everyone! :)

Sunday, 10 March 2013

It's been a long 63 day hospital stay

This stay has been my longest in the 6 years I've had GP. I believe part of the reason it's been so long is because I was healthy for 15 months prior to getting sick. From reading a lot of other GP''ers stories, I've noticed that after being healthy for a long time and then getting sick for the first time it comes back with a vengeance ...unfortunately! Thankfully I've had really good doctors that are giving me everything I need, keeping me comfortable, and doing everything they can to help.

This stay for me has been a tough one. More so on my mental state than anything. Don't get me wrong it's been tough one looking at every aspect but, emotionally, yes! I've realized for the first time that I have pretty bad anxiety issues that I really need to learn to cope with, especially while going through bad episodes. So I am now doing research on coping skills and techniques plus I am starting to talk to a counsellor about this anxiety of mine. It will only help my situation when I am having GP flare-up. One thing I think everybody should do , no matter the health situation, is talk to a therapist. It really makes a difference on ones mental state.

This 63+ day episode has been different then any I've experienced before. I keep having set backs without even making it home. Usually I can get home for a bit and then have a set back and end up back in. I was getting sick off of pretzels which is weird for me. All I've been able to handle pretty much this entire time is a clear fluid diet. Now I'm tolerating diary, cremed soups, ensure and a few soda crackers a day. I am also eating jello, popsicles, pudding, apple sauce, and ice creme. I've lost 20 pounds in this 2 months of being sick. I was on TPN for a week but went off of it because it was cauing severely high blood sugars that wouldn't come down. I gained a few pounds back while on TPN, so that was good!

Through this whole episode, and even while struggling a little mentally, I 've still tried to keep a positive mindset. My #1 rule while living with diabetic gastroparesis is to be and stay positive!!

Happy tummy day evryone! :)