To be honest with you, this is the hardest thing that I ever have had to face. My food intake is getting to the point where it can barely sustain my existence. I know the question of starving to death, which would take months and be extremely painful unless I can get a doctor that believes in salient treatment, where they sedate you to death. That is the more humane way to go. It is hard to think about saliant treatment . who is going to keep my stories for my grandchildren about magic and dreams?
I hope I am here, but I get a lab report telling me that my B6 should be 30, but Dr. Patel said that it was in the hundreds. My iron is high to. I went over the diet and I think I should make an appointment with the dietitian to find a sustainable diet. My blood pressure has been very high.
My lab work was good this last week, but for the high B6 and the iron being high, I think it is time to adjust my diet, but I have been reading and the only thing that crossed over was white bread and egg, fully cooked of course. I have been on this diet for a month now and things have been good. The water I was drinking had mega doses of vitamin B 6 , so I can’t drink it anymore. I have to find something else to add taste to water.
I am getting my affairs in order and I am writing a letter to my surgeon, begging him not to do this operation until it is proven in a lab.
Sorry this is short, but I am tired,
Keep me in your prayers,
I haven’t been posting lately because my health has taken a sideways turn. My primary doctor did a three month blood work up and my iron is now sky high and my vitamin B6 is off the roof. Normal is 30 and mine is in the hundreds. My doctor called the next day to check on me and I was still trying to wrap my brain around this new information. I looked up iron toxicity and vitamin B6 toxicity and I have been having the symptoms for weeks. I downloaded a list of each of the vitamins and minerals that I had too much off, to see which foods to back off of. I added a list on vitamin K because I have been bruising a lot and when I get my nerve injections, sometimes I bleed just a bit too much.
I sat down and compared the lists and basically, the only things I can eat are white bread and eggs (not too many). What to do, what to do. I left my grocery list mostly blank and put a big question mark about what foods to back off on and which I can eat. I backed off of the vitamin B6, but my number were still way to high. Now, I gave up on gatorade because it has so many bad sugars and now, after checking the label, I have to give up my flavored water because, for some reason, they put mega amounts of vitamin B6. I guess I have to bunker down and develop a taste for tea. I am hoping that this information will make it so I can try to eat a more regular (for me) diet. I showed the list to my care provider and she asked me what I was supposed to eat. I asked to question back to her. We put our head together as much as we could, but for some reason, I got a craving for black caviar. I haven’t had it in years. I bought some, and some soy cream cheese and crackers and my sparkling soda and I toasted all the wonderful things that have gone on in my life. I also have to accept that I may go to my grave with unfinished business.
Food is getting painful to eat and I know the progression of this situation, especially if you have gastroparesis of the upper intestines. That is why my upper intestines never tried to adapt to becoming part of my limited stomach. It just never happened. I don’t think the surgeons in this area, or anywhere else for that matter, know all there is to know about how the stomach will react to certain assaults. In my case, the surgeon took so much of my stomach because it was his theory that he could cure gastroparesis in the stomach by removing most of the stomach. He told me he had another patient with gastroparesis that had the surgery and is now doing fine. I didn’t think to ask, what effect, having gastroparesis in my upper intestines have on the failure or success of the surgery. In my case I would say that the theory is flawed and more consideration should be taken when you have an all ready emaciated patient if there recovery will will compromised by health. I told my GI doctor before the surgery, I didn’t think I was strong enough to withstand the surgery, but he assured me I would be fine.
I was told I should sue my doctors, but I don’t believe they did this to me maliciously, but it hurts just a bit when my other doctors or doctors at the hospital ask me why they took so much of my stomach. I can’t answer that question anymore. I had such faith..even my eye doctor has commented on how my life was shorted by the surgery. That is just a fact. I am going to write a letter to each of the the surgeons and let them know how I experienced them and I want them not to ever do a gastrectomy, vagotomy unless it is life threatening. I want them to read my blog and see what my days are like, good and bad. I especially want them to know what it has been like to face the fact that my lifespan has been shortened. I have two beautiful grandsons that I would like to see grow up. That is why I do so much research on diet and read all the labels.
So, I bought a jar of black caviar and enjoyed my evening snack while I considered what I wanted to say to the doctors and I am preparing myself for the fact that neither of them may respond at all. I enjoyed my treat as I started my letter. It is not going to be easy, but I don’t want the surgeon to say that he did this operation on a 58 year old woman and she is doing fine. The fact is, he doesn’t know how I’m doing and I just feel that he needs to know before doing this operation again and what information about absorption, etc. he/she needs to make available to the patient, so they can make an informed decision.
So, Bon Apetite and a toast to seeing my grandchildren next week and may the spirits that be allow me a few good days so I can enjoy them.
Talk to you soon, take care of yourselves,
To say that I have the dumping syndrome, is not to explain what that is going to mean to the rest of my life. I heard one nurse say that I would never have a normal meal again. At that time, it was almost impossible to wrap my brain around it, but I had excellent doctors. I take every medication known to man and I adjust my diet to include fiber, but it doesn’t seem to matter.
The emptying process has a pattern to it. For aproximately two weeks, I’ll be doing fine, but then the emptying syndrome takes over and the legnth of that process takes about two weeks as well. At times the pain would get so bad that I would want to curl up in a ball and get through it, but there were things to to. I had a family.
Something in my stomach smells so foul, that I lose my appetite and I don’t enjoy the food I eat. I have been vomiting lately, but I am not alarmed because I know it is part of the process. Even when I enjoy the food, if I am in the middle of the emptying syndrome, it doesn’t matter. Every passing of gas is so foul, that the humiliation is almost unbearable. People can tell it is you, esecially since you will pass a small amount of bowel when you passed the gas and the smell stays with you. Even cleaning up with baby wipes doesn’t take the smell away until you take a shower. Unfortunately, that wouldn’t be an option since I had several bowel movements a day.
It’s not just the inconvenience or the limited diet or the pain, it is the humiliation of occurrances out in the public. I can’t stop eating, so it is almost like force feeding.
For days, I would wake up in my own feces and the cramping in my stomach would tell me to run to the bathroom, that the emptying is not done and it is a very painful process, since . This is a daily occurance. That is one of the main reasons that I don’t get out, I would be horrified if an accident were to happen. It has happened before and I am still humiliated when I think about it.
I have to accept the fact that I need to learn to live with it and not feel so panicy when I am cramping so severly. I also have to accept that the dumping syndrome, no matter what I do, will last for about four to five days every two weeks or so. Perfume is not the answer. I don’t seem to be able to digest anything very well lately.
I am doing the best I can do and I am sticking to one hundred pounds even. At least I am not losing. It has been a hard week, so I will talk to you soon. I have to go through my food journal to see where I may have indulged. I will talk to you soon,
I have become a woman of accessories. Some are for the cramping pain of my limited stomach and my intestines. Others are for what that cramping might have been predicting. Explosive diarrhea or bowel incontinence, where each passing of foul gas produces an accident. Sure, they make panty liners and adult diapers for urine incontinence, but what about people like me? The best I can do is wear a panty liner to absorb as much as it can, until I can get to a restroom. I often travel to a doctor’s appointment with a change of clothes. Sitting on a plastic cover on the car seat is a must. I have become reintroduced to baby wipes for the same purpose and oh, don’t forget that gentle lotion to prevent rashes. At times, it all seems overwhelming.
It’s back to the drawing board for me. There must be something in my diet that is triggering this response or I must have gone overboard and not estimated correctly, eight ounces of food and caused the dumping syndrome.
Since I have several different health issues that cause diarrhea, factoring in the dumping syndrome has been a difficult challenge. Prescriptions, over the counter medications and food supplements from the health food store help to a degree, but in the end, it all comes down to diet. Eating a bland soup with crackers sooths the stomach and intestines until soft foods can be reintroduced. Jelly on my muffin is replaced by peanut butter. Every time, and it is often, that I am told that I am low in something, I am on the Internet finding foods that are rich in that particular vitamin and my next stop is in my cook books. I still struggle with my symptoms, but not as often as I used to have them. I am finding it very difficult to handle bowel incontinence. I have had severe diarrhea while I was out in public, so I don’t leave home much. I don’t eat dairy or fruit products, but instead I have changed my foods to soy products and vegatables. I have more good days than bad days with my new outlook oncooking and eating food. Absorption problems still haunt me, but I am maneuvering around the challenges. My hope is that I might help someone and make things easier than things were for me. Talk to you soon!
My name is Elaine. I am 58 years old and live on the central coast of California. Since I was 14, I have suffered from bleeding ulcers. In my fifties, I developed gastroparesis in my stomach and upper intestines for which the doctors never found a cause. A year and a half ago, I had a rather large ulcer, which would intermittently bleed. My doctor gave my ulcer seven months to heal before he referred me to a surgeon.
When I heard the term “partial gastrectomy, vagotomy”, even though the surgery itself was explained to me, I had no idea what life changing challenges I would be in for. After the surgery, it started with the explosive diarrhea, which I was later told by my doctor that it was the “dumping syndrome”, a predictable complication of the surgery. I discovered by trial and error that my stomach could handle eight ounces of liquid or food, but staying in that range still wasn’t the answer entire answer. In my case, the anti diarreha medications weren’t working, my bowels became incontinent so I was prescribed a powder to bind food together and then I was tested for lactose and fruitous intolerent of which I am both. I also had bouts of being low in sodium, potassium, vitamin D, iron and I am waiting to see what comes next. I was eventually referred to a dietition.
From my first appointment with my dietition, I have kept a food journal that not only keeps track of the food I eat, but what symptoms I have afterwards. I eat every hour and a half…small meals. Still with a high carbohydrate, high protein diet, I still seem unable to gain weight, especially with the lack of fruit and dairy, but I am becoming creative. I am 5’4″ and weigh 94 pounds. Trial and error… There is only so much I can eat in a day with my limited stomach, so I am learning to make the most of it and hopefully, I won’t have the predictable diarrhea to defeat my purpose.
I have asked allot of questions of my health care proffessionals and gastric bypass surgery is not all that different from the surgery that I had, except that they are left with more of a stomach and they are basically healthier to start with, but some struggle with the absorption problems that dietary supplements cannot solve due to the stomach’s lack of ability to digest.
There is so much more to share and even more to learn. Talk to you soon.
In California, they call them Community Health Centers (CHC). Apparently, the idea is going National because I heard Dr. Sanja Gupta talk about them on CNN. The truth of the matter is that in the Center, (Clinic), you have a choice of one doctor if you live in a rural town like I do. This doctor could be what they call a traveling doctor, and be there for a length of three months, or you might get a doctor with a longer contract, but they are all temporary. Right before I started writing this blog, which I wanted to be positive, I transferred from the clinic in my town, which was convenient for me, to a Clinic in a City thirty minutes away. I did this because I received the most unprofessional, negligent, abusive treatment that I had ever experienced in the health care field in my adult life . This doctor certainly crossed the line and I left the Clinic. I called the powers that be to get complaint forms, but I have yet to muster the strength to fill them out and send them in. I called the program administrators and I was told there was no time limit. Since I am disabled and I cannot drive and my bowels are, at times, incontinent, the prospect of having to travel further to receive health care sometimes seems logistically impossible, but my new mantra is what ever I have to do.
I haven’t written in my blog in awhile because I was beginning an experience with a new pain doctor. He is Harvard trained and is a minimalist, so he and I are going to get along just fine. He gave me injections in the back of my head, my temples, and right above my eyebrows. My entire head felt numb. For four glorious days after the injections, I did not have a headache. I almost don’t know how to write that, because I have never gone a day without a headache since long before I can remember. I am told that the time between the injections will increase as the pain relief does. He also put me on a medication that is meant to prevent migraine headaches and also prevents seizures, which I also have.
I was also waiting to see my new primary doctor. She had been my physician back in the early nineties, but I didn’t remember much about her. When I was speaking to the doctor I was losing, I asked her about the two physicians that where available, which one would she pick. She described the female doctor as being motherly and although I didn’t remember her that way, I followed my doctor’s recommendation and went with her. I even brought up the subject of salient treatment and my doctor said my new physician was against suffering and would therefore be for it if it came to a point that I could not tolerate food and I would therefore starve to death, which is very painful and inhumane. That particular doctor saw how hard it was for me to go from weighing 96 pounds and unable to walk through a grocery store without defecating from one end of the store to the other to get to the restroom, to where I am teetering today. Maybe there has been a change in this doctor through the years , but time proved that not to be the case.
This entire blog has been about my struggle to find a balance in my pharmaceutical needs, my dietary needs, vitamins and minerals, and the delicate levels of electrolytes. I learned in my research, that diet plays a large part in balancing nutrients. I could avoid getting iron IVs, which takes sitting basically in one position for six hours. But, there were those occasions where I needed vitamin or mineral supplements or other types of medications that have come to bepart of my routine. My new primary doctor believes that I can do without many of my medications. She looked at me and made a point to say in amazement, how do you take all those pills. I tried to explain how hard I worked to find a balance and I felt like she just dismissed me. So, I feel as though I have been fighting since I first got sick in 2005. I am not sure how much fight I have left. It hurts to eat, but like I told the doctor, I’m not going to do anything about it. My mantra is what ever I have to do. I am scared and hopeless all rolled up into one ball.
Take care and I’ll write again,
My food journal has become vital to me. There was a period of thirteen days that I didn’t have any sort of a bowel movement. The bit of stomach that I do have left and my intestines stretched with each day, causing me to look like a pregnant grandmother. I decided that measuring it would be helpful, but although it was informative, it wasn’t much help in regulating my bowels. If I waited the thirteen days, the dumping syndrome would be brutal. I had to find a way to regulate my system myself, through my diet, to avoid the grueling pain, since I am unable to take laxatives.
There are numerous forms of fiber. The poison that I picked was a cereal that has been around since I was a kid. Somehow that is a comforting thought, giving me a false sense of trust. But truly, the trust was in me. I decided on the massive portion that I ate the first time, and its consequences, although, how would I know?. Between sprints to the bathroom, I lay exhausted in bed. That, in itself, is depressing. It is hard to stay positive when you look in the mirror and are shocked by the sunken face that stares back. After the fibrous assault was over, I eased myself back into eating food. Hummus, for me, is very helpful, but we are all different. Eat the gentlest things that sound appetizing to you, and that you know your body can tolerate.
The second attempt at regulation was far more successful. I still ate my trusty childhood cereal, but in a much smaller portion. Then, I had to be aware of the food that I ate after the fiber. These had to be easy to digest foods. All the while, I had to be conscious of what was on my list of approved foods. These are foods that I tried from a list that provided me with a particular vitamin. Some were down right unappetizing, others didn’t agree with my GI system, but there were those that I could tolerate. Then, the approved foods started to make me feel stronger. I just had to be vigilant about the size of my stomach. This I grew to understand was an indicator.
I waited for nature and/or gravity to take their course, but to no avail. My stomach was beginning to reach the “baby bump” size. My, what a picture. My little ole body literally looks like it has been rode hard and put away wet…and pregnant too? Oh my Lord! According to my calculations of the gastroparesis in my upper intestines and what affect that might have on the process, I needed to eat a small portions of my childhood cereal, every three days. That is my rhythm. It is not always foolproof, sometimes the respite in between is practically non existent. These are the hard times. Somehow though, I have accomplished the desperate need to gain weight and I am still here to plead the case of my two grandsons, they want to grow their hair out long. Colten 11, wants the George Harrison cut and Justin 8, has a picture from his Mohawk to a full head of hair in his imagination. My son is starting to soften up, which is a good sign. I was a hippie, I don’t know what happened?
Achieving the balancing act is very empowering. I have gone to a couple big box stores without the severe anxiety that I normally experience. I have had accidents, so the unsuccessful experiences are hard to overcome, but I have reluctantly done it. I so clearly remember being mortified and that will probably stay with me for a long time. I may have more embarrassing experiences, but I desperately want a life. I don’t drive anymore, so I have to look into public transportation, but the fear of an accident and not being able to get to my house, paralyzes me, so I procrastinate. What would I do? Without help? I long to just go to the lake park and walk around, watching the parents with their children.,the ducks and the geese, fighting for food in the water, just be. I wonder if that will ever be a reality for me. Meanwhile my thoughtful care giver drives me to the lake with a loaf of bread and we have a time.
I have almosst conquered the four walls and that is a part of regulating too. One can only read for so long. Personally, I have to mix it up. I have ankle/wrist wieghst that help my body get stronger. I have my yoga mat and my relaxation/meditation tapes the fuel my mind and stretch out as much of the pain as I can. I have herniated vertibres, so it helps some, but not much. Yoga seems to be good for my body though. I don’t have a schedule since I don’t know how I will be feeling on any given day, so I adapt. I guess in the end, we all do.
Do the best you can with what you have, I’ll write soon,
After coming out of a particularly rough emptying cycle, I feel as though I am dying. I am weak, spent, deflated, wanting to curl up in a ball of pain. I can get through this too, I tell myself. In ways it is good that I live alone because I would feel so embarrassed, panting with each movement, barely able to walk. At first I drink a child’s supplement because it has less sugar than those for adults. The intestinal cramping starts, but is less severe. It takes less time to lie on my side and massage my stomach until it passes or eventually calms down to actually feel relief.
There are foods that I have found I can easily digest, so I have a bit of one of those, just to get some nutrition. I feel a little stronger and I add another food that is a little more complex. I try to be patient with myself and take my time, because if I don’t, I’ll go right into another emptying cycle. I can’t let that happen, so I have to be careful. It is such a juggling act. Everyone is different and we each have our individual pallets to develop our preferences for taste. I have been ill for so long, I have come to see food as my enemy. I have found that watching these cooking shows and trying their recipes, have made me see food as something to be savoured and enjoyed. I am finding that the “presentation” on the plate is very important, so I am experimenting.
I start feeling stronger and I take a long, hot shower and I shave my legs and condition my hair. Afterwards, I put on one of my fragrant lotions and I spray on some perfume on and usually get into my favorite night gown and robe. I burn my candles and I light some incense to help sooth my intestines, which feel raw and swollen. Sometimes I prefer a candle light bubble bath. For me, southern cooking is my comfort food. In my research, I have found how I can make those dishes with just a little twist or substitute and I can still slink back and enjoy. Even as skinny as I am, I have been known to unbutton the first button on my pants for some chicken livers, mashed potatoes and corn on the cob and maybe some cornbread. It might be magic, but comfort food can always be tolerated.
Historically, I know I have two weeks to eat those six small meals without trouble and get as strong as I can with a hopeful bonus of gaining weight. It still hurts when I eat, but it is a pain I can bear. That is when I put one of my aprons on and pretend I am on a cooking show, having to say yes Chef when I feel challenged by a cake that won’t rise fast enough. Now I look at ingredients differently, such as an eggplant that I have cooked the same way for 30 years,but now I have a recipe for smoky eggplant served with….etc.. I am excited by all the possibilities. Before, baking was my thing, but now I strive for excellence. LOL
I am still being teased about my gardens. I have a cement patio that I have a plant holder on that you can put up to eight plants on. I also have two gourgeous lavender plants on each side. Taking care of them gives me joy because I am connecting with another living thing. Upstairs I have a gerainium, a lavender plant and a beautiful honeysuckle plant that has coral flowers. The hummingbird family loves it. I have a bench on my balcony and I just sit and watch the stars while I smell the flowers. I know I am alive. I can still experience the good. Hope fills my soul.
Take care of yourselves. I’ll write again soon.
Since my grandsons went back to Oregon, I have been fighting a deep depression. I only get to see them maybe twice a year. On the phone, the older one will carry on a conversation, but the younger on is too antsy at his great age of eight, so keeping in touch is a challenge and I am more of a hands on Grandma. I got the pictures back from their visit and my care provider, Alicia, got some great shots. One of my favorite pictures is where Colten, Justin and I are sitting on the floor and Colten is talking. Justin and I are intently listening to him, fully engaged in the conversation. There are a great couple of funny shots. The first one shows the three of us with our butts sticking up in the air looking for a “Big Bug” that Alicia announced was behind the couch, so there we were…investigating at a safe distance. The second shot shows the three of us lounging on the couch after our “rightous kill”.
Continuing with our photo shoot, Alicia put a fleece sheet on my bed and the three of us pounced on our new home with pizza, juice, ice cream and lot of napkins. There is a great picture of us not knowing anyone was looking, so we are eating with gusto. The looks on our faces were extremely proud and canabalistic. We had TWO kinds of meat, Justin kept saying. We were proud to gourging ourselves on Grandma’s fleece sheet. It was thick and soft, perfect to watch movies on and EAT! Woops, almost forgot the angelic strawberry iced cookies from my favorite store. MMMMMMM The two boys are good for my appetite.
I had eaten a wheat cereal that has a lot of fiber in it so I wouldn’t have bowel problems while the boys were here. Maybe I couldn’t garantee it, but it was less likely to be a problem and I would be able to eat small bits. Alicia and I had a plan B and the cereal worked, but a little too well and I was still very weak when the boys got here, but they never new that. My care giver did, but not the boys. We played, talked and thoughoughly enjoyed each other all day. One of the pictures I have from their visit is Colten with the electric harp, just as he is looking up. He is 11, but he looks like a rocker that has been on the road awhile and he is hung over himself. Not a good image, but a realistic scenario.
As I sat there and watched the boys check out the school supplies that I got them, I was in a lot of pain, but not enough to take this day from me. I try not to let it take many, but there are those days that refuse to ge ignored. Not Today! They weren’t too rough on me, but you know boys, they have to show they are “strong”. They wore me out, but at the same time I wish the day would never had to end. I have a photo album for that day that I hope gets back to them…my boys.
Since their visit, I have been trying to get back to the routine of cooking with fresh ingredients and listening to my meditation tapes to get my stomach nice and relaxed so I can stuff it. Lying on my side as I massage my stomach while it digests (this helps a lot). I backed off on the B6 and iron so we’ll see where I stand now. It should be pretty stable. I do what I have learned is best and my blood work tells me if I am succeeding. Sounds like some sort of game…I wish.
This is my life, you take care and I will write again soon,
I think I have officially crossed the line from being an aching client to a professional patient. I have files in my cabinet of all my previous and current doctors. Past blood studies, X Rays, MRIs on every part of my body imaginable, and reports from specialist in San Fransisco. My primary doctor is trying to help me as much as she can before she leaves to take on a Hospitalist job at two of the local hospitals. She has changed my pain doctor and my endocrinologist because she has concerns about my current treatments. I will still be in the same clinic, but I will greatly miss her. I hope my new doctor is half as good as the one I have now. I have been blessed.
My current primary doctor was concerned about some vertical color panels on my fingernails. She said sometimes it is an indication of melanoma. The physician’s assistant took a look at it and talked to me at great length and scheduled a biopsy. It was supposed to happen in a week because my grandchildren were coming. The PA wanted me to be seen by the doctor and when I got there and saw that the lobby was full, I looked over at my care provider and said, “I bet this appointment is a bust”. It sure was. The doctor came in the room and after 30 seconds, said nothing is wrong with me, I just have eczema of the nail. I looked it up on my computer and printed out the various nail diseases. I am not hoping for cancer, but I darn sure don’t have crumbling nails that pull away from the skin and have red dots on them. I had none of those symptoms. I just want to know what I do have. Is that too much to ask? I am frustrated at the kind of doctors that don’t listen to you and they dismiss your concerns. I am getting a second opinion on Monday with a doctor’s assistant that I know and trust.
My two grandsons, Colten and Justin, are my heart. The love that I feel for them makes me feel like I will bust. Since I saw them both before school, I bought all kinds of schools supplies in cool colors. I also got them a plastic brain and heart that looked like they came from a meat department and I let the boys pick which one they wanted. We did CPR with the heart when we discovered that it took air well are re-inflated. If you picked the brain, you could decide if it is normal or not….or the lack of a brain can have all kinds of interesting twists. We had great fun. I had also bought the latest Alice in Wonderland and we watched that while we ate pizza. Then, there was the game that I always buy for them to take home. I bought the game “operation”. Is that irony? My illness bleeds into my attempts at fun. But, we had fun playing operation and I didn’t want the day to end. Neither did they.
I had my care provider, Alicia, there in case I had problems because I had just finished a rather difficult emptying syndrome. Toward the end of our visit, I got shaky and my blood pressure went up, but the boys never knew, and that is the way I wanted it. I knew things were going well when the youngest asked me to please take out my teeth “one more time”. Of course I did it, but both of the boys regretted it when I went after them with what looks likes fish kisses. They hate the noises I make.
My oldest grandson, Colten, is 11 and got his first electric guitar with amp and ear phones so he won’t disturb the family. I have his autograph in a teddy bear frame. He didn’t have his guitar with him, but I have an electric harp that comes with rhythms. Both of the boys had a lot of fun with it and Colten sang, timidly at first, but after I heard him and told him he had a good voice and sang out loud. I confess. I am the loud grandma that will play hide and seek with you when she can. Listens to you when you talk about your life and your dreams and you want them to know that all things are possible. You should have seen us play the game of life. We had a pay check, but we also had taxes and student loans. They both learned a lot in a fun way. I want them to remember me that way.
My care provider says that I act a lot better than I feel. I think I do that on purpose. I am fighting against the isolation that I wrote about before. I don’t want to be alone. I don’t think any of us do. But, when I am having explosive diarrhea all day and I am weak and dehydrated, there is no choice except to be isolated. At those times. I take a long showers and use all my fragrant lotions and put on something that makes me feel pretty. Me and me alone. I arrange all my little meals into a chef’s plate, make myself feel special and then find something that I would like to do. My illness limits me, but there are still possibilities. We all have passions inside us and mine seems to be rumblingin my gut and believe me, I listen to it. My surgeon may have shortened my life, but I am going to enjoy every minute I can. Last month I had 19 good days out of 31, that is better than the sixteen I had the month before. Those days are tiny celebrations, even if they are for only one. I am worth it. Keeping a food journal has been vital for me.When my iron was getting dangerously high and so was my vitamin B6. I found the sources and made adjustments or eliminated them. It also helps when you have to look back, if you put what vitamin is in which food. I learned the hard way. Read those labels, it is so important.
Before I took control of my health, I just went from pill to pill, but now I know I can eliminate some pills by diet, but others, I need help and there is no shame in that. I hated iron IVs that take six hours and now, through eating foods with iron in them, my iron count is good. I wish it worked with potassium and sodium. But, we do the best we can do. No matter if you had a gastrectomy, vagotomy or a gastric bypass, the issues are very similar and I imagine the emotions are too. I figure if I eat right and excersise when I can, I am doing the best I can for my body. My breathing exercises calm me down and help me focus, so I can heal. I listen to jazz to put a twinkle in my soul. We have to do what works for us. I have to remind myself that my beauty is in my heart.
Treasure yourself and your loved ones and I will write soon,
Most people really don’t want to hear what you are thinking or feeling, so you give them a short “I’m okay”. You see it in their face and you have certainly been there before, so you maneuver around the truth to make it all sound so perfectly pleasant in that cheery voice of yours. You’ve gotten good at it, but you can’t seem to feel good about it. Explaining your limitations has become a roadblock to anyone ever getting close to you. You can see people visibly cringe.
A chronic, debilitating illness can be a very shameful thing in the eyes of the person afflicted. Nephew’s die, sister’s are buried, sons feel abandoned, and grandsons wonder why you don’t come to see them and you carry all of this in the whisper of a scream that you “want your life back”. In my case, migraines are triggered when my emotions are all knotted up. The kind that make you put ear plugs in to avoid sound and put a blanket over your blinds to keep the slits of the sun out, phones are turned off and you pray for sleep.
All the reasons for my actions or lack thereof twist and turn in my head like a tornado. There is no peace. I hear the words that I should feel more positive, but it is hard to feel that way if you face a fear that has been taunting you for months and you agree to go into a large grocery store with your care giver and you end up experiencing uncontrollable, explosive diarrhea from one end of the store to the other. Oh, my care giver was good about it all, but the ladies that came in the restroom to the foul smell that was me were all appalled and I don’t blame them. I wear a panty liner and sometimes depends, but those are really designed for urinary issues.
One of the biggest privileges that I have had to “temporarily” suspend is driving. That took every last bit of independence that I had left. Since my gastrectomy, vagotomy, I have had a mirad of electrolyte problems, such as sodium or potassium that would land me in the hospital. The iron in-deficiency is usually handled out patient. Since any one of these things can make me have a seizure, I took myself off the road until I am stabilized or….who knows.
So, if you know someone who has not been well, look into their eyes when you ask them how they are. You may find wisdom and humor woven into the conversation.
Talk to you soon,
I just got through a rather lengthy, painful emptying syndrome. But that is the rhythm. My caregiver and I went through my food journal where I also put if I had diarrhea or not, to see how many good days I have. It was 16 out of 31 days. That is a disheartening fact. I have to figure out how to have more than 16 days.
Since my system hadn’t moved in 13 days, I have to figure out how I am going to have a bowel movement every three days. We haven’t figured out how, but we have ideas. We are thinking that we are going to shorten the cycle. Perhaps a great deal of fiber should be consumed every three days to makes my system move.
These past few days were horrid. I knew when my intestines swelled to the point that I appeared nine months pregnant. I knew I was due for a hard time, but not like this. We are keeping track of everything that happens to me. I wish I could tell you differently, but I am still weak from the emptying period. I may have 16 days, but we haven’t documented how many of those 16 days I am recovering from the ordeal.
The fact is, I lost 7 lbs. in two days. I stayed running distance from the bathroom until I felt safe enough to get on the scale. I weighed 100 lbs. again. I can’t seem to get past that number. Everything I eat seems to go toward the emptying process. Perhaps the three day fiber will be the answer. It has to be in my diet because I was told that is all the doctors could do about my lack of a stomach. It has been a year and two months since I had the gastrectomy, vagotomy and I am still struggling. It is hard to feel positive when you have been through so much. I feel like I am ready to die. I can’t give up because of my grandsons, but it is so hard making it through one day. It is all so hit and miss and everyone is different. My GI doctor did the tests to find out that I was fructose and lactose intolerant and I was both. That has been a challenge. I am hoping things get better.
I haven’t figured everything out, but I think I am on the right track. I think diet is the the key and I need to keep up my food journal and now keep track of how often I have a bowel movement. I try not to think of the prognosis for someone without a stomach, but it stares me in the face.
I hope the emptying cycle is done and I can get around more freely. Sometimes, I feel as though I can’t go through the extreme cramping that w happens when I eat food, but I need to find the right food. Yesterday, I went shopping and I loaded up on smoked oysters for their iron. I averted an iron IV before, maybe I can do it again, since I have been getting signs that my iron is low. I wish I had words of wisdom for you, but like anything else, every case is different. I just keep on eating the fresh foods that hold the nutritional content that I need, and hope that someday I will find an answer.
Sorry, I was so down beat, but I have been and still am, very weak. Take care of yourselves and I will talk to you soon.
In 2005, after I had just recovered from yet another large ulcer, I was still feeling unwell and was severely nauseated. It was the first time I had it since when I was pregnant forty years ago. The nausea put me down like a rock. Days would go by and I wouldn’t be able to have a bowel movement. The food would just sit in my stomach and it felt as though it was fermenting in my body. The longer this went on, the sicker I got. Most of the time I was on my bedroom floor, crouched over a bucket, vomiting. My GI doctor did some more testing and diagnosed me with gastroparesis (paralyzed stomach/slow emptying) in my stomach and small intestines.
In 2009, when the surgeon was explaining that he could cure my gastroparesis by taking off more than half my stomach in a procedure called a partial gastrectomy, vagotomy, I was so shocked at the amount of stomach that he wanted to remove that I was trying to be calm and understand his theory of curing gastroparesis, which excited me. But I wasn’t thinking. I wasn’t thinking that I had gastroparesis in my small intestines as well and I didn’t think to ask what that fact might do to the outcome of the surgery. I’m not even sure that he knows, after all, it is a theory, that he reassured me was thus far successful. I wish I could tell him what his failures are like.
At first it seemed fine, but eventually the nausea came back. From before the surgery, I had a prescription for the same anti nausea pills that they give to cancer patients. Somes days it barely touches the nausea and I don’t have enough of a stomach to contract, it is hard to vomit. Sometimes, it comes in small amounts at a time. I still have my bucket, my cold compress for the back of my neck, ginger candies from the health food store or ginger ale, licorice sticks to suck on and mint tea. I just recently found someone that makes lavender and eucalyptus lotion that when you apply it to your large muscles, it melts away the feeling of heaviness and the aroma of the lotions eases the nausea quite a bit. The rooms just spins and spins. These are all signs that the emptying syndrome is near, not to mention the intestinal area or what you might think of as your stomach, is so swollen that it looks like you are nine months pregnant.
That is where I am right now…within running distance of my restroom and all my accessories. I have the cleansing spray, the baby wipes, the healing lotion and the room spray that I sometimes carry around with me. Oh, the joys of deflating stomach. My clothes fit so much better then and people don’t look at me like I am another senior that is pregnant. They may even think they saw me on the magazine next to the cash register. I just shake my head and crazy scenarios go through my mind. I have to keep myself amused to keep strong. I’ll write again soon, take care of yourselves and your tummies.