It's been a little while since I've added any posts to my blog. When I started this blog it was my intention to let others who are struggling with dealing with having Gastroparesis know that there is life after a Gastroparesis diagnosis. Because getting that diagnosis is mind blowing and often times debilitating. At least it was for me. To learn that I may never eat normal food again and there was no cure! This my friends is life altering. It is all too common to find yourself focusing on the long term instead of dealing with the right here and right now. As I've learned from Crystal Saltrelli, I have Gastroparesis right now and I need to deal with it right now in the present. Maybe in the future I won't but in order to live my life right now I have to deal with my having Gastroparesis right now. Because if you focus on the long term it becomes very overwhelming and creates high levels of stress and anxiety which will in turn exacerbate symptoms.
I've had some major setbacks in the last couple months and I find myself feeling like I did before I had developed my Comprehensive Management Plan and was utilizing it. The truth is that I have not been utilizing my Plan and I've been struggling with getting it back in place. I know this is what I need to do to feel better but I've been feeling so bad that I have not been doing it. It is so easy to get caught in this viscous circle but it is imperative to get out of it. Some of the biggest complications of Gastroparesis are, in my opinion, a result of poor nutrition. So it is imperative to make sure to get the daily nutritional requirements. If that means I have to go back to meal replacement drinks and soups until I am able to tolerate more foods, then so be it. It may mean I need to juice more or puree my foods. If that is what I need to do then I have to do it.
You see I thought I had accepted the fact that I have Gastroparesis and had been dealing with it quite well. And I was feeling great! So as it is so easy to do when I start feeling good I want to forget that I am sick. Then the treatment starts slipping because why do I need treatment if I'm not feeling sick?! I could make up a number of reasons why this has happened but regardless of why I have let myself slip away from my Plan. I've been struggling with getting back on track and I simply have to make the adjustments needed to keep my Plan in place. The biggest setback I had was my change in my job schedule and it has been a real struggle to get myself back on a routine that works for me.
Getting through the holidays is a real challenge with anyone dealing with Gastroparesis. Talk about stress overload and not to mention the variety of food and social gatherings surrounding food around the holidays. When going to these social gatherings be prepared. Talk to the Hostess ahead of time to see what will be served and/or to see if you can bring a dish that you know you can tolerate. Don't assume that there will be something you can eat there and be sure to bring something with you or eat before you go. I've learned this lesson the hard way a few times.
Another hard lesson that I have learned is that Gastroparesis does not care what day it is. The symptoms can flare up at any time, even Christmas day. I was so sick on Christmas day it was horrible. Then to add to that it is even harder for family members and loved ones to understand and be as compassionate as you need them to be about your being sick interfering with plans made. There's no easy answer in these situations. I am still working on this hurdle.
I am certain that I will get past these setbacks and get back on track. When I do I will be sure to share how I did it. I have Gastroparesis but Gastroparesis does not have me!
I have Gastroparesis but it does not have me!
Sunday, December 30, 2012
Wednesday, November 28, 2012
Getting back on track
Here I am home sick from work again. I hate this!! I have been vomiting half the night and all morning. My back has a huge knot of pain between my shoulder blades and I feel like shit. I have not been taking my own advice and I let the busyness of life get in the way of managing my Plan properly and now I am paying the price.
Yes this sucks but I know that I can and will get back on track. I had gone shopping at Jebbia's (our local produce store) and stocked up on fresh fruits and veggies for juicing and smoothies. So back to taking the time to prepare those nutrient packed meals instead of grabbing what's quick (foods that will make me sick). It's easier to know the right plan of action but it's harder to implement it. As I said before a good Comprehensive Management Plan takes time and work, but it is so important to put in that time and effort to feel good. I wish I didn't have Gastroparesis but I do and if I want to live symptom free I have to manage my plan.
That being said it is also important to remember that getting back on track doesn't happen instantly. You have to be patient and stick to your Plan and it will come around but it takes time. Don't give up if you don't feel better after sticking to your Plan for just a day or two. It might actually take a week, or even two, before you are feeling better and symptom free. Then once you are feeling better, stick to your plan! I know easy for me to say, right. It is easier said than done but I can not stress enough how important it is to do the work. A good Comprehensive Management Plan is a lifestyle change, it is not a short term "diet". Unfortunately Gastroparesis is a chronic condition that has to be managed.
Also, don't let yourself wallow in self pity because that does not do anything for you. Instead take the time to take care of yourself. Take a long hot bath, listen to some relaxing meditation do anything that is relaxing for you. Tension and stress will exacerbate symptoms so try to relieve the tension and stress as much as possible. It's easy to get stressed out when the symptoms flare but that will only make the flare up worse. A viscous cycle I know! So I am going to take my own advice and fill up my jacuzzi tub and take a long relaxing bath. Then hopefully I'll feel good enough later today to do my Yoga routine. In the meantime I am going to make some fresh juice and water it down so that it won't be so upsetting to my stomach. Then I plan to sip on it throughout the day. Once I'm confident my stomach won't reject it I might try some pureed beets, but for the most part it is going to be an all liquid diet kind of day. I of course will make sure I'm getting the proper nutrients in and hopefully my stomach will stop rejecting everything. If not I may have to make another trip to the ER to get fluids.
Another point I would like to make. There are different stages of diets that you sometimes have to change to depending on your symptoms. For example, I am very symptomatic right now so I am going to stick to an all liquid diet. Then once I start to feel a little better I can go to a semi-liquid diet. After that I can work up to the semi-solid diet that I can tolerate. I say semi-solid because most solid foods are intolerable for me at any time regardless of how good I feel.
The alternative to getting back on track is to stay sick or get even more sick. That is not a choice I am going to make. I will get back on track and I will feel better. In the meantime I have to let this flare up run its course and be very strict with my Plan so that I don't exacerbate the symptoms I'm already dealing with.
Yes this sucks but I know that I can and will get back on track. I had gone shopping at Jebbia's (our local produce store) and stocked up on fresh fruits and veggies for juicing and smoothies. So back to taking the time to prepare those nutrient packed meals instead of grabbing what's quick (foods that will make me sick). It's easier to know the right plan of action but it's harder to implement it. As I said before a good Comprehensive Management Plan takes time and work, but it is so important to put in that time and effort to feel good. I wish I didn't have Gastroparesis but I do and if I want to live symptom free I have to manage my plan.
That being said it is also important to remember that getting back on track doesn't happen instantly. You have to be patient and stick to your Plan and it will come around but it takes time. Don't give up if you don't feel better after sticking to your Plan for just a day or two. It might actually take a week, or even two, before you are feeling better and symptom free. Then once you are feeling better, stick to your plan! I know easy for me to say, right. It is easier said than done but I can not stress enough how important it is to do the work. A good Comprehensive Management Plan is a lifestyle change, it is not a short term "diet". Unfortunately Gastroparesis is a chronic condition that has to be managed.
Also, don't let yourself wallow in self pity because that does not do anything for you. Instead take the time to take care of yourself. Take a long hot bath, listen to some relaxing meditation do anything that is relaxing for you. Tension and stress will exacerbate symptoms so try to relieve the tension and stress as much as possible. It's easy to get stressed out when the symptoms flare but that will only make the flare up worse. A viscous cycle I know! So I am going to take my own advice and fill up my jacuzzi tub and take a long relaxing bath. Then hopefully I'll feel good enough later today to do my Yoga routine. In the meantime I am going to make some fresh juice and water it down so that it won't be so upsetting to my stomach. Then I plan to sip on it throughout the day. Once I'm confident my stomach won't reject it I might try some pureed beets, but for the most part it is going to be an all liquid diet kind of day. I of course will make sure I'm getting the proper nutrients in and hopefully my stomach will stop rejecting everything. If not I may have to make another trip to the ER to get fluids.
Another point I would like to make. There are different stages of diets that you sometimes have to change to depending on your symptoms. For example, I am very symptomatic right now so I am going to stick to an all liquid diet. Then once I start to feel a little better I can go to a semi-liquid diet. After that I can work up to the semi-solid diet that I can tolerate. I say semi-solid because most solid foods are intolerable for me at any time regardless of how good I feel.
The alternative to getting back on track is to stay sick or get even more sick. That is not a choice I am going to make. I will get back on track and I will feel better. In the meantime I have to let this flare up run its course and be very strict with my Plan so that I don't exacerbate the symptoms I'm already dealing with.
Wednesday, November 21, 2012
The Importance of Maintaining Your Comprehensive Management Plan
I can not stress enough how important it is to maintain a Comprehensive Management Plan that works for you. I had been feeling really good and had gotten busy with different things and let myself get distracted from my Plan which resulted in a severe flare up with violent vomiting that caused me to miss a couple days from work. Gastroparesis reared its ugly head and brought me back to reality real quick. Life gets busy and maintaining a good Plan takes work and is very time consuming. It's easy to get distracted or off track, especially when your feeling good, but it is just as important to get yourself back on track and stick with the Plan that you know works.
My back has been bothering me and has made it really hard to do my morning workout routines. I've even had a hard time doing the Yoga and that has been killing me because I just don't feel good if I don't get my Yoga routine in. Then I made a trip out of town for a dear friends wedding. As I've expressed in other posts, I am horrible at directions. I get lost sooo easy. I stress out and get severe anxiety and tense up all over. After that trip my entire body was tensed up for a week, no exaggeration! Wouldn't have missed being a part of my friends wedding for anything but I should have found someone to go with me to do the driving. I had some other issues going on that was causing me a lot of stress and all of these added stressors just exacerbated my symptoms. I had also not had a massage in about a month. I didn't really realize how much getting a massage had become a part of my Plan until I was no longer getting them.
So now I am getting a massage about once a week and my back is feeling better. This is allowing me to start getting my workouts in again. I am also getting back into my daily routine that I know makes me feel better.
It's important to remember that the Plan works but it is not a cure. I still have Gastroparesis and that has not changed. Maintaining my Plan allows me to live 90% symptom free but if I do not manage my Plan that results in being more symptomatic instead of being symptom free. This is a lifestyle change not a short term objective. For me it seems that if I let one part of the Plan slide it doesn't take long for the rest to follow. Before I know it I am very sick with nausea and vomiting and it doesn't go away very fast. Maintaining your Plan is hard work and time consuming but the benefits are sooo worth the time and effort. I have Gastroparesis but Gastroparesis does not have me!
My back has been bothering me and has made it really hard to do my morning workout routines. I've even had a hard time doing the Yoga and that has been killing me because I just don't feel good if I don't get my Yoga routine in. Then I made a trip out of town for a dear friends wedding. As I've expressed in other posts, I am horrible at directions. I get lost sooo easy. I stress out and get severe anxiety and tense up all over. After that trip my entire body was tensed up for a week, no exaggeration! Wouldn't have missed being a part of my friends wedding for anything but I should have found someone to go with me to do the driving. I had some other issues going on that was causing me a lot of stress and all of these added stressors just exacerbated my symptoms. I had also not had a massage in about a month. I didn't really realize how much getting a massage had become a part of my Plan until I was no longer getting them.
So now I am getting a massage about once a week and my back is feeling better. This is allowing me to start getting my workouts in again. I am also getting back into my daily routine that I know makes me feel better.
It's important to remember that the Plan works but it is not a cure. I still have Gastroparesis and that has not changed. Maintaining my Plan allows me to live 90% symptom free but if I do not manage my Plan that results in being more symptomatic instead of being symptom free. This is a lifestyle change not a short term objective. For me it seems that if I let one part of the Plan slide it doesn't take long for the rest to follow. Before I know it I am very sick with nausea and vomiting and it doesn't go away very fast. Maintaining your Plan is hard work and time consuming but the benefits are sooo worth the time and effort. I have Gastroparesis but Gastroparesis does not have me!
Saturday, October 27, 2012
Dealing with flare-ups
Unfortunately even with a good Comprehensive Management Plan there are still times when I experience flare-ups. This week has been one of those weeks. I changed shifts at my job which started on Monday. I went from working 3pm - 11pm to working 11am - 7pm. Definitely a change for the better but my stomach really reacted to the change. I think a little because I was so excited to get off afternoons. It started first thing on Monday and has continued everyday this week. I've been nauseated, bloated, gassy and had episodes of vomiting. Some days my stomach just ached. So in order to minimize the flare-up I've tried to stick with just Glucerna, crackers and of course the beets. Beets will instantly make my stomach feel better.
Even though I've felt awful all week I still did my Yoga routine and my daily meditation. I did not do the additional 30-60 minute workout but was able to get my lunch time walk in a couple times this week. I think it's vital that when you feel bad you don't let yourself wallow in it. It is what it is and all you can do is deal with it the best you can until it passes. I think if you let yourself wallow in it you'll only feel worse. And why would anyone want that?! So I still do as much as I can and that makes me feel a little better. Walking is really great exercise on days I feel too bad to do a more intense workout. Unfortunately we were very busy at work this week and I didn't always get to take a lunch and wasn't able to go for a walk. When I get off work it's too dark out to walk. Mornings were out since I was really having trouble getting moving that early when I wasn't used to being awake yet. However, I know it will get better, I will adjust and this flare-up will pass.
It's also not always easy dealing with friends and family during these flare-ups. I just have to remind myself that they are not dealing with this and isn't that easy for them to understand. I mean I have a hard time understanding and I am living it. When I have flare-ups the initial response is, "Have you eaten anything different?" It's not always because of something that I've done. Sometimes flare-ups will just happen, it is the nature of GP. When they do I just have to keep the right attitude and try not to let it get me down too bad. That's when I might need to take Zofran or Phenergan. I might have to eat some Nauzene chewables. Might have to rely on Glucerna and crackers to sustain me until the flare-up subsides. The important thing is realizing that they will subside.
Even though I've felt awful all week I still did my Yoga routine and my daily meditation. I did not do the additional 30-60 minute workout but was able to get my lunch time walk in a couple times this week. I think it's vital that when you feel bad you don't let yourself wallow in it. It is what it is and all you can do is deal with it the best you can until it passes. I think if you let yourself wallow in it you'll only feel worse. And why would anyone want that?! So I still do as much as I can and that makes me feel a little better. Walking is really great exercise on days I feel too bad to do a more intense workout. Unfortunately we were very busy at work this week and I didn't always get to take a lunch and wasn't able to go for a walk. When I get off work it's too dark out to walk. Mornings were out since I was really having trouble getting moving that early when I wasn't used to being awake yet. However, I know it will get better, I will adjust and this flare-up will pass.
It's also not always easy dealing with friends and family during these flare-ups. I just have to remind myself that they are not dealing with this and isn't that easy for them to understand. I mean I have a hard time understanding and I am living it. When I have flare-ups the initial response is, "Have you eaten anything different?" It's not always because of something that I've done. Sometimes flare-ups will just happen, it is the nature of GP. When they do I just have to keep the right attitude and try not to let it get me down too bad. That's when I might need to take Zofran or Phenergan. I might have to eat some Nauzene chewables. Might have to rely on Glucerna and crackers to sustain me until the flare-up subsides. The important thing is realizing that they will subside.
Tuesday, October 23, 2012
My experience with the Gastroparesis Clinic
After seeing the Specialists with the Gastroparesis Clinic at Allegheny General I have to say I was left disappointed and frustrated. I had such high hopes that they were going to provide me with answers and tell me what to do to not feel so damn sick all the time. Instead I was told that I was not getting enough calories or protein. Well no shit! When I eat, even if it's only a few bites, I end up so sick for days. It was interrupting my personal life, my work life, my relationships with family and friends and especially with my boyfriend. I was missing an excessive amount of work. I was missing social functions with friends because I was just too sick to leave the house. My boyfriend even though he was trying to be as supportive as he could was getting frustrated with me. This was affecting everything!
I can not blame the Gastroparesis Clinic completely, it is just the nature of GP. Unfortunately there is no one plan of treatment that will work for everyone. There are different degrees of GP and not all GPers (people who have Gastroparesis) have the same symptoms. This disorder seems to vary quite a bit from person to person. The clinic appointment was an all day affair. While there I met with a GI Specialist, a Psychologist, a Nutritionist and a Dietitian. The GI Specialist seemed to think my GP was due to my Diabetes which would mean that I would probably have this for the rest of my life. The Nutritionist however believed my GP was caused by a virus which would mean that it may go away someday. Of course I'm rooting for the Nutritionist to be right!
Without going into too much detail, the doctors were very thorough in evaluating my individual case. I would recommend if you have Gastroparesis and are in or near the Pittsburgh area to give the Gastroparesis Clinic with Allegheny General Hospital a chance. They all looked at my test results and the journals I brought with me which reflected what I was "eating" and my daily symptoms. My biggest complaints were severe diarrhea, incessant nausea, extreme bloating, gas and vomiting. So they felt that the caffeine I was in-taking was a big contributor to my diarrhea issues. Turns out they were right. I drink a lot of homemade ice tea, so I started making it half decaf and half regular.
The Psychologist felt that part of my issues were stress related and offered some holistic alternatives such as Hypnotherapy, Bio-Feedback, Meditation and I'm sure there were others that I am just not recalling right now. I initially saw her every three weeks for awhile starting with the Hypnotherapy and it really helped me to feel better. Unfortunately the trips to get there did not. I had to discontinue the appointments because I got so stressed every time I had to make that dreaded trip into Pittsburgh that it defeated the good the appointment would do for me. The Psychologist was Barbara Jean Nagrant, PhD and she was wonderful. Too bad she wasn't closer to me. I am horrible with directions and do not know my way around Pittsburgh AT ALL. This results in full blown anxiety attacks for me which also made all my symptoms flare up. This was a 4 hour round trip for a one hour appointment. It was a no brainer to stop the appointments, but if you are near or in the Pittsburgh area I highly recommend her. She did however give me a copy of a daily meditation CD by Belleruth Naparstek. I have since purchased additional meditation CD's by Belleruth Naparstek.
Although they offered some good advice, the bottom line was it was up to me to figure out how to take in more calories and protein without getting sick. So I have taken a proactive approach and have formulated my own personalized Comprehensive Management Plan which I talk about in another post.
I can not blame the Gastroparesis Clinic completely, it is just the nature of GP. Unfortunately there is no one plan of treatment that will work for everyone. There are different degrees of GP and not all GPers (people who have Gastroparesis) have the same symptoms. This disorder seems to vary quite a bit from person to person. The clinic appointment was an all day affair. While there I met with a GI Specialist, a Psychologist, a Nutritionist and a Dietitian. The GI Specialist seemed to think my GP was due to my Diabetes which would mean that I would probably have this for the rest of my life. The Nutritionist however believed my GP was caused by a virus which would mean that it may go away someday. Of course I'm rooting for the Nutritionist to be right!
Without going into too much detail, the doctors were very thorough in evaluating my individual case. I would recommend if you have Gastroparesis and are in or near the Pittsburgh area to give the Gastroparesis Clinic with Allegheny General Hospital a chance. They all looked at my test results and the journals I brought with me which reflected what I was "eating" and my daily symptoms. My biggest complaints were severe diarrhea, incessant nausea, extreme bloating, gas and vomiting. So they felt that the caffeine I was in-taking was a big contributor to my diarrhea issues. Turns out they were right. I drink a lot of homemade ice tea, so I started making it half decaf and half regular.
The Psychologist felt that part of my issues were stress related and offered some holistic alternatives such as Hypnotherapy, Bio-Feedback, Meditation and I'm sure there were others that I am just not recalling right now. I initially saw her every three weeks for awhile starting with the Hypnotherapy and it really helped me to feel better. Unfortunately the trips to get there did not. I had to discontinue the appointments because I got so stressed every time I had to make that dreaded trip into Pittsburgh that it defeated the good the appointment would do for me. The Psychologist was Barbara Jean Nagrant, PhD and she was wonderful. Too bad she wasn't closer to me. I am horrible with directions and do not know my way around Pittsburgh AT ALL. This results in full blown anxiety attacks for me which also made all my symptoms flare up. This was a 4 hour round trip for a one hour appointment. It was a no brainer to stop the appointments, but if you are near or in the Pittsburgh area I highly recommend her. She did however give me a copy of a daily meditation CD by Belleruth Naparstek. I have since purchased additional meditation CD's by Belleruth Naparstek.
Although they offered some good advice, the bottom line was it was up to me to figure out how to take in more calories and protein without getting sick. So I have taken a proactive approach and have formulated my own personalized Comprehensive Management Plan which I talk about in another post.
Sunday, October 21, 2012
My Comprehensive Management Plan
It took some time to figure out a Comprehensive Management Plan that works for me. When I first started getting sick it seemed like everything I ate made me sick. Once I was diagnosed I started searching online for solutions to make me feel better. Instead what I found was an overabundance of negative information. I read stories about people who were dependent on feeding tubes to survive. People who were so ill that they were unable to function at all, that had to leave their employment because they were simply too sick all the time to go to work. At the time I was having very little luck in figuring out what to eat. I was terrified that I was going to end up like these poor people I had been reading about. However through my search I was able to find Crystal Saltrelli, she is amazing. She has Gastroparesis herself and has become a Certified Health Coach. Her website is http://livingwithgastroparesis.com/ and she can also be found on Facebook. She offers very positive and effective advice and has written a few books on how to effectively live well with Gastroparesis. She also has numerous videos on YouTube that offer great advice and recipes.
I had to start out slow. When I was symptomatic all the time I mainly relied on meal replacement drinks for my nutrition. I tried all kinds before finally settling on Glucerna, vanilla flavor. Mainly because I'm a diabetic and some of the others had too much sugar for me. I could munch on crackers, toast or biscuits to help sustain me. But on my worst days that was all I could "eat". I tried several protein shakes and have yet to find one I can really tolerate. I have a new one that Crystal Saltrelli recommended, by PlantFusion, but I haven't tried it yet. Of course I do take a multi-vitamin and have since added a B12 supplement. I have found that the gummy vitamins are more tolerable, my favorite is VitaFusion brand. Then I slowly started adding new things when I felt well enough to try something new. I learned the hard way that you HAVE to go slow or you'll end up sick and not sure which food you tried was causing it. So I started a food chart with what foods I knew I could tolerate and became my "go to" foods during flare ups. In the beginning stage this was my Safe Food List:
One day my work place had an opportunity for us to sign up for a free 10 minute massage which led to a free 30 minute massage that led to me giving Nardone Chiropractic & Wx a chance. They were awesome! I started going 3 times a week and received a 30 minute massage, a chiropractic adjustment and then a workout session with the trainer. Dr. Nardone also introduced me to Zypan a wonderful digestive enzyme that has allowed me to be able to eat chicken again. Dr. Nardone also suggested I try eating a beet daily to help with my digestive issues. I can't even begin to tell you how much this has made a difference. I buy fresh beets, organic when possible, peel them cut them up into chunks and then boil them. I puree them with a little brown sugar. It looks like purple pudding and it is delicious. By eating beets I now have regular bowel movements and let me tell you after dealing with diarrhea for over a year on a daily basis this was a huge accomplishment! He also told me to stop eating French bread that it literally turns into paste in your system. I haven't eaten it since. Dr. Nardone and his team are great and they have done wonders for me. My experience has also helped me to implement a daily workout routine. Check out www.nardonechiropractic.com if you are in or near the Benwood, WV area. I highly recommend them. Thanks to Nardone I have added the following to my Safe Food List:
Another important part of my Comprehensive Management Plan is my daily Yoga routine followed by a workout of either stretching or cardio. I try to alternate the stretching and the cardio routines from day to day but the Yoga I do daily. I also take a 25 minute walk during my lunch whenever I get the opportunity. Exercise is a great way to minimize my symptoms and it just makes me feel better, more relaxed and happy.
By suggestion of Barbara Nagrant, PhD I implemented a daily meditation routine at bedtime. I have a couple different meditation CDs by Belleruth Naparstek that I listen to at bedtime every night. I now sleep better than I ever have in my life. Stress tends to exacerbate my symptoms so anything I can do to minimize or eliminate stress is a positive thing.
So let's break it down, my Comprehensive Management Plan consists of the following:
Of course this is my story and these methods may not work for everyone but the combination of Yoga, exercise, meditation and finding ways to eat healthy, whole foods has made a tremendous difference for me. I used to be Symptomatic 90% of the time and now I am 90% symptom free!! So even if this plan isn't right for you please don't give up until you find what is right for you.
I had to start out slow. When I was symptomatic all the time I mainly relied on meal replacement drinks for my nutrition. I tried all kinds before finally settling on Glucerna, vanilla flavor. Mainly because I'm a diabetic and some of the others had too much sugar for me. I could munch on crackers, toast or biscuits to help sustain me. But on my worst days that was all I could "eat". I tried several protein shakes and have yet to find one I can really tolerate. I have a new one that Crystal Saltrelli recommended, by PlantFusion, but I haven't tried it yet. Of course I do take a multi-vitamin and have since added a B12 supplement. I have found that the gummy vitamins are more tolerable, my favorite is VitaFusion brand. Then I slowly started adding new things when I felt well enough to try something new. I learned the hard way that you HAVE to go slow or you'll end up sick and not sure which food you tried was causing it. So I started a food chart with what foods I knew I could tolerate and became my "go to" foods during flare ups. In the beginning stage this was my Safe Food List:
- Glucerna
- Carnation Instant Breakfast
- Ensure
- Crackers: Saltines, Town House, Ritz, Club
- Chicken Broth, homemade (Andrew Lessman's Cure All Chicken Broth recipe)
- Toast, French Bread (I have since eliminated this food.)
- Biscuits
- Potatoes, baked or boiled, no skin
- Enlive Apple Juice box
- Organic White Grape Juice
- Applesauce
- Nutella
- Peanut Butter
- Olive Oil
- Butter, whipped, made from Olive Oil
- Pineapple
- Yogurt, vanilla
- Sweet Potatoes
- Carrots, cooked
- grapes, juiced and strained
- strawberries, juiced and strained
- HMR 500 Chicken Soup
- Cheeses: swiss, colby, cheddar, mozzarella and parmesan
- Vocelli's cheese sticks
One day my work place had an opportunity for us to sign up for a free 10 minute massage which led to a free 30 minute massage that led to me giving Nardone Chiropractic & Wx a chance. They were awesome! I started going 3 times a week and received a 30 minute massage, a chiropractic adjustment and then a workout session with the trainer. Dr. Nardone also introduced me to Zypan a wonderful digestive enzyme that has allowed me to be able to eat chicken again. Dr. Nardone also suggested I try eating a beet daily to help with my digestive issues. I can't even begin to tell you how much this has made a difference. I buy fresh beets, organic when possible, peel them cut them up into chunks and then boil them. I puree them with a little brown sugar. It looks like purple pudding and it is delicious. By eating beets I now have regular bowel movements and let me tell you after dealing with diarrhea for over a year on a daily basis this was a huge accomplishment! He also told me to stop eating French bread that it literally turns into paste in your system. I haven't eaten it since. Dr. Nardone and his team are great and they have done wonders for me. My experience has also helped me to implement a daily workout routine. Check out www.nardonechiropractic.com if you are in or near the Benwood, WV area. I highly recommend them. Thanks to Nardone I have added the following to my Safe Food List:
- Chicken, baked or grilled
- Cream of Chicken soup
- Spinach, cooked
- Beets, cooked and pureed
- Beets, juiced
Another important part of my Comprehensive Management Plan is my daily Yoga routine followed by a workout of either stretching or cardio. I try to alternate the stretching and the cardio routines from day to day but the Yoga I do daily. I also take a 25 minute walk during my lunch whenever I get the opportunity. Exercise is a great way to minimize my symptoms and it just makes me feel better, more relaxed and happy.
By suggestion of Barbara Nagrant, PhD I implemented a daily meditation routine at bedtime. I have a couple different meditation CDs by Belleruth Naparstek that I listen to at bedtime every night. I now sleep better than I ever have in my life. Stress tends to exacerbate my symptoms so anything I can do to minimize or eliminate stress is a positive thing.
So let's break it down, my Comprehensive Management Plan consists of the following:
- Start the day with a Yoga routine followed by a 30-60 minute workout.
- Eat a beet daily.
- Eat small amounts of food, generally 1/2 -1 cup at a time.
- Eat organic when possible.
- Eat whole foods and avoid processed food.
- Take 25 minute walk at lunch time 3-4 times a week.
- End my day by listening to a meditation CD before going to bed.
- Avoid stress.
Of course this is my story and these methods may not work for everyone but the combination of Yoga, exercise, meditation and finding ways to eat healthy, whole foods has made a tremendous difference for me. I used to be Symptomatic 90% of the time and now I am 90% symptom free!! So even if this plan isn't right for you please don't give up until you find what is right for you.
Thursday, October 18, 2012
Gastroparesis, the diagnosis...
About the end of May 2011 I started getting really sick EVERY time I ate. I could not figure out what was going on. I had my gall bladder out about 4 years prior to this and what I was feeling was sort of like what I dealt with when my gall bladder stopped working but worse. It didn't seem to matter what kinds of food I ate, I tried sticking to a bland diet but that didn't seem to make any difference at all. I would get really nauseated, have vomitting, extreme bloating, heartburn, diarrhea and would belch A LOT. My belches would smell like rotten eggs. It was really gross. This would happen after eating just a little bit of food and would last for days. Eventually I got to where I just stopped eating because I would rather go hungry than to feel that sick. I am a diabetic so going without eating was wreaking havoc on my sugar. I would also get severe pain through my diaphragm and in the sternum. The pain in the sternum would feel like a vice grip that was wrapped around me from front to back and was being tightened, as if to smash my rib cage inside itself. The pain would be excruciating and could last anywhere from 15 minutes up to 2 hours. I came to know this type of pain as attacks and discovered they eventually pass. I also now have medicine specifically for this type of attack when they hit. It is just dealing with them while they happen that is really hard.
But I am getting a little a head of the story... So I broke down and went to my Doctor. Initially he thought possibly Gall Bladder Disease, Pancreatitis or some type of blockage. He said that we needed to see what was going on in there so he referred me to a GI Specialist for an Endoscopy. The Specialist told me I showed some signs of heartburn but other than that there was nothing wrong with me. He prescribed me Prilosec for the heartburn but said as far as the rest there was no physical reason why I was getting sick. I cried and cried and insisted that there was something wrong with me. I love food! I mean look at me, I'm a big girl! There was no way I was intentionally making my self sick or that this was in my head. When I first got sick I weighed 230 pounds. This was another reason I felt that the GI Specialist wasn't taking me too seriously. I was too overweight to be as sick as I was telling him I had been. So the Specialist ordered a Gastric Emptying Study on me even though he didn't think I had a real problem. He said my symptoms could be related to how my stomach empties.
So I went for the Gastric Emptying Study which consisted of my eating a radioactive egg sandwich and then they took snapshots of my digestive tract as the radioactive material moves through my system. The normal stomach should empty half of its contents after approximately 90 minutes. My test results showed that my stomach would empty half of its contents after approximately 485 minutes. I have severe slow gastric emptying or Gastroparesis.
The day the GI Specialist's Assistant gave me my diagnosis, yes his Assistant not even the doctor himself, was horrible. She simply told me what my test results were (the numbers, like that meant something to me, I was clueless) and that it meant I had Gastroparesis. (What the hell does that mean!?) She gives me a prescription for Reglan and proceeds to tell me that my case is beyond their scope of ability and they are referring me to the Gastroparesis Clinic at Allegheny General in Pittsburgh. I am given this information like she was just giving a weather report and then smiles and tells me to have a nice day. What!!?? So I leave with more questions than answers and go home to jump on the internet and find out what this news actually meant. At first I was just dumbfounded. Learning that basically my stomach is suffering from a paralysis and no longer works! That there is NO CURE! That I may never be able to eat normally again!! This is insane!! I've never heard of such a thing. NO!!! There MUST be some sort of mistake!!!
I am aware of the side effects of Reglan and have chosen to not take it. This drug can cause Tardive Dyskinesia which is uncontrollable muscle spasms, commonly facial muscles, that don't go away. There is a great risk of having it for life. I was prescribed Domperidone (not FDA approved in the United States) by the next specialist, but it did not work for me. I had to have it shipped from Canada by my doctor since it is not FDA approved in the US. So I do not take any medications for Gastroparesis itself. I do take meds at times to alleviate the symptoms when they get bad. I've been prescribed Zofran and Phenergan for the nausea. I've also found that Nauzene, an over the counter chewable, works good to alleviate the nausea too.
So the next doctor I meet with tells me that he concurs that I do have Gastroparesis but he believes I also suffer from Sphincter of Oddi Dysfunction (SOD). So he orders some additional testing and ultimately confirms the suspician of Sphincter of Oddi Dysfunction (SOD). Unfortunately the treatment for SOD involves surgery which many times results in Pancreatitis. So he prescribed Hyoscyamine which can be taken at the onset of an attack. This doctor prefers to hold off on any type of surgery until it is absolutely necessary. However, he referred me to a group of specialists which are part of the Gastroparesis Clinic who seem to think that eventually I will have to undergo the surgery, that the attacks will come more often and last longer. Great! Something to look forward to. However, with the progress I have made I haven't had a pain attack, not one, in about 5 months.
Beyond the medications the doctors told me to try to stick with low fiber and low fat foods. To juice or puree foods so that I could digest them more easily. They recommended meal replacement drinks and that I just had to try until I found what foods I could tolerate. Basically trial and error. They suggested I limit my caffeine intake as diarrhea was one of my primary symptoms. This actually made a huge difference. I love Ice Tea but I now make it half & half, half regular and half decafinated.
I have come a long way since my diagnosis. What I once thought of as the worst thing in the world I now look at as the best thing that could have ever happened to me healthwise.
But I am getting a little a head of the story... So I broke down and went to my Doctor. Initially he thought possibly Gall Bladder Disease, Pancreatitis or some type of blockage. He said that we needed to see what was going on in there so he referred me to a GI Specialist for an Endoscopy. The Specialist told me I showed some signs of heartburn but other than that there was nothing wrong with me. He prescribed me Prilosec for the heartburn but said as far as the rest there was no physical reason why I was getting sick. I cried and cried and insisted that there was something wrong with me. I love food! I mean look at me, I'm a big girl! There was no way I was intentionally making my self sick or that this was in my head. When I first got sick I weighed 230 pounds. This was another reason I felt that the GI Specialist wasn't taking me too seriously. I was too overweight to be as sick as I was telling him I had been. So the Specialist ordered a Gastric Emptying Study on me even though he didn't think I had a real problem. He said my symptoms could be related to how my stomach empties.
So I went for the Gastric Emptying Study which consisted of my eating a radioactive egg sandwich and then they took snapshots of my digestive tract as the radioactive material moves through my system. The normal stomach should empty half of its contents after approximately 90 minutes. My test results showed that my stomach would empty half of its contents after approximately 485 minutes. I have severe slow gastric emptying or Gastroparesis.
The day the GI Specialist's Assistant gave me my diagnosis, yes his Assistant not even the doctor himself, was horrible. She simply told me what my test results were (the numbers, like that meant something to me, I was clueless) and that it meant I had Gastroparesis. (What the hell does that mean!?) She gives me a prescription for Reglan and proceeds to tell me that my case is beyond their scope of ability and they are referring me to the Gastroparesis Clinic at Allegheny General in Pittsburgh. I am given this information like she was just giving a weather report and then smiles and tells me to have a nice day. What!!?? So I leave with more questions than answers and go home to jump on the internet and find out what this news actually meant. At first I was just dumbfounded. Learning that basically my stomach is suffering from a paralysis and no longer works! That there is NO CURE! That I may never be able to eat normally again!! This is insane!! I've never heard of such a thing. NO!!! There MUST be some sort of mistake!!!
*Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.
* Wikipedia
* Wikipedia
Oh, the denial!!! It took me quite some time to wrap my head around the fact that this was real and I had to deal with it somehow. So I started looking for solutions to my dilemma online. I found a lot of discussions and forums where people were just SO negative and loved to tell the horrors of what they were dealing with. I was reading about people ending up on feeding tubes and such and thought NO. This is NOT going to be my story. And it is not. With the help of Crystal Saltrelli and all the great information she has availble I have formed my own Comprehensive Management Plan that is working wonders for me. I will go more in depth about my Comprehensive Management Plan in another post.
So anyway...
I am aware of the side effects of Reglan and have chosen to not take it. This drug can cause Tardive Dyskinesia which is uncontrollable muscle spasms, commonly facial muscles, that don't go away. There is a great risk of having it for life. I was prescribed Domperidone (not FDA approved in the United States) by the next specialist, but it did not work for me. I had to have it shipped from Canada by my doctor since it is not FDA approved in the US. So I do not take any medications for Gastroparesis itself. I do take meds at times to alleviate the symptoms when they get bad. I've been prescribed Zofran and Phenergan for the nausea. I've also found that Nauzene, an over the counter chewable, works good to alleviate the nausea too.
So the next doctor I meet with tells me that he concurs that I do have Gastroparesis but he believes I also suffer from Sphincter of Oddi Dysfunction (SOD). So he orders some additional testing and ultimately confirms the suspician of Sphincter of Oddi Dysfunction (SOD). Unfortunately the treatment for SOD involves surgery which many times results in Pancreatitis. So he prescribed Hyoscyamine which can be taken at the onset of an attack. This doctor prefers to hold off on any type of surgery until it is absolutely necessary. However, he referred me to a group of specialists which are part of the Gastroparesis Clinic who seem to think that eventually I will have to undergo the surgery, that the attacks will come more often and last longer. Great! Something to look forward to. However, with the progress I have made I haven't had a pain attack, not one, in about 5 months.
Beyond the medications the doctors told me to try to stick with low fiber and low fat foods. To juice or puree foods so that I could digest them more easily. They recommended meal replacement drinks and that I just had to try until I found what foods I could tolerate. Basically trial and error. They suggested I limit my caffeine intake as diarrhea was one of my primary symptoms. This actually made a huge difference. I love Ice Tea but I now make it half & half, half regular and half decafinated.
I have come a long way since my diagnosis. What I once thought of as the worst thing in the world I now look at as the best thing that could have ever happened to me healthwise.
Wednesday, October 17, 2012
Hidden Struggles
I ran into an old high school friend the other day. Mind you high school was 21 years ago and I have not actually seen this friend for at least 20 years. She asks about my recent health struggles and says something along the lines of, "well you seem to have your weight under control" as she smiles. I just smile and laugh and say, "oh I actually need to lose some more weight". We laugh it off and say how good it is to actually see each other again (as we only "talk" on Facebook). Little does this well meaning friend know that I have actually lost 35 pounds with my struggles in learning to live with Gastroparesis. So even though I am still quite over weight, it certainly doesn't mean that I haven't really been truly sick!
Sometimes we forget that even though we can't see the problem someone else is struggling with, it doesn't mean the problem isn't real and it doesn't have devastating effects on that person. I really don't think my old friend meant to be mean by her comment but it seemed that maybe she believed that I had not really been as sick as I had claimed.
I am doing amazingly well right now, but it has been a hard road to get to this point. At one point I was making regular trips to the ER because I would get so dehydrated from extreme vomitting and diarhea. For quite a while I was sick all the time, symptomatic every day. I've really had to work hard at figuring out what works for me and I am still discovering new things every day. I have learned SO much by reading Crystal Saltrelli's blogs, websites and Facebook posts. Crystal is an amazing person with so much information to give and she delivers it with such positivity. Because of Crystal's advice I have developed my own Comprehensive Management Plan that has worked wonders for me. I am currently living 90% symptom free!
Sometimes we forget that even though we can't see the problem someone else is struggling with, it doesn't mean the problem isn't real and it doesn't have devastating effects on that person. I really don't think my old friend meant to be mean by her comment but it seemed that maybe she believed that I had not really been as sick as I had claimed.
I am doing amazingly well right now, but it has been a hard road to get to this point. At one point I was making regular trips to the ER because I would get so dehydrated from extreme vomitting and diarhea. For quite a while I was sick all the time, symptomatic every day. I've really had to work hard at figuring out what works for me and I am still discovering new things every day. I have learned SO much by reading Crystal Saltrelli's blogs, websites and Facebook posts. Crystal is an amazing person with so much information to give and she delivers it with such positivity. Because of Crystal's advice I have developed my own Comprehensive Management Plan that has worked wonders for me. I am currently living 90% symptom free!
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