Thursday, June 28, 2007

Mouth Hungry

I don’t know how to tell this part of the story, so I will do my best and hope that it becomes clear by the end.

I’m not sure when it happened but over the last several years there came a division of the word hungry and all that it implied. There is the normal “Stomach Hunger” I feel when I need food. These hunger triggers come around 11:30am for lunch and around 4:30pm for dinner. There is the “Tired Hunger” that I feel when I am tired and don’t need food, but rather a nap. This hunger trigger comes around 3:00pm and 10:00pm. And finally I have a state that I now call “Mouth Hunger” which can strike at any time of the day or night, though it is always stronger in the evening. This is an eating trigger where my mouth is salivating and I have the desire to eat despite being full or having already had my meals for the day. This will often lead to binging, when my eating becomes frantic and uncontrollable.

"Mouth Hungry" has been happening to me for a long time now and I can trace it back to the last time I came off Prednisone. It also seems to come directly from the primitive Reptile part of my brain that says; “I must eat food whenever it is available”. Intellectually I know, and am aware of what I am eating, and when I am eating. I also know and understand when I am overeating or binging (again two different things), but the power to limit intake is simply overwhelmed. When "Mouth Hunger" occurs, it seems part of my mind is hijacked by it, and as a result, when I find myself overeating or binging, I can even provide rational justifications for it.

So how does this all tie in? Well, the surgery is the key. It is the tool that installs the limit. My stomach, which I will now refer to as the pouch, holds only 2 – 4 ounces of food. By the end of the first year, the pouch will hold 4 – 6 ounces. If my intake is larger than that I will experience one of the following consequences; vomiting, diarrhea or I will tear the pouch open. These are consequences that I do not wish to experience, especially the last. So the surgery puts into place the tool that allows me to limit my intake where I was unable to do so previously.

Does the surgery take away the hunger? Yes and No. I currently do not have any "Stomach Hunger" triggers for food; this has most likely resulted from the drastic change to my eating style.

The first thing I do when I wake up is start to drink water. I am required to get into my system about 1 ½ - 2 liters of water daily. Easy, for a normal stomach, but with my pouch being so small I start my day with drinking about 700ml first thing in the morning. This takes me about 1 – 1 ½ hours. Then I have to wait about 15 minutes before I eat my breakfast. Currently, my breakfast is about 1 cup of well processed, strained foods; ¼ each of cream of wheat, apple sauce, milk, and Minigo™ cheese. Eating this takes about 1 hour and most of the time, it is way too much food for me to comfortably eat. I say comfortably because a large part of this process is to bee keenly aware of “full signals”, and to stop eating when they occur.

Half an hour after I finish eating breakfast, I start to drink water again. My goal is to get about 350 ml down, 2 ounces at a time, until lunch. I try to have lunch between 12:00 – 1:00. I go through, the same process of eating about 1 cup of well processed, strained foods over the span of 1 hour. Currently, I am eating soups that my parents made for me, but eventually I will start cooking for myself again.

Half an hour after that, I try to finish the remaining 350ml of water and then, before you know it, it is dinner time. As you can see, there is really no time for my stomach to every really “feel” hungry.

As for the “Tired Hungry”, well I don’t feel that either. Again, because I spend most of the day drinking water, and grazing.

“Mouth Hunger” is a completely different story. I had my first experience with it last night around 10pm. I was getting ready for bed and, in my usually way, I was watching a bit of TV before settling in. Lo and behold, a commercial for Kentucky Fried Chicken came on. Now, first you must understand that I do not eat Kentucky Fried Chicken at all. In fact I can tell the last time was over one and a half years ago when I had a single Big Crunch sandwich. The commercial was showing Chicken Fries. Why did the Chicken Fries trigger this response? I don’t know, but my god, my mouth just started to salivate and I just wanted to crawl into the screen and devour it all.

I knew in my head that there was no way I had space in my pouch to even put one mouthful of that Kentucky Fried Chicken Fry in, but did I ever want to eat. In the past, I would have gotten up and had a snack, but this time I could not. The limits that the pouch placed on me convinced me that I should remain in my bed and suffer. And I did, suffer, that is. I could have been walking, reading, on the computer or any number of other things and I would have still been thinking of those damn Kentucky Fried Chicken Fries.

What does the future hold? I don’t know. I am working at developing a positive mantra that I can say to myself when I get "Mouth Hungry" and I will probably include some type of Behavior Modification, but I am not sure what it will look like in the end. That’s the adventure!

Tuesday, June 26, 2007

Where to Begin - Part 2

Where to Begin - Part 2

For some people there may be a question as to why I have put myself through such a drastic, life altering experience. I wish I could tell you that it was only because I was fat. Unfortunately, the answer is not that simple. For those curious enough - read on.

I was never a thin girl. Rather I was one of those “Botticelli” women, with the rounded hips, belly and full breasts. I started to gain weight in High School, but things settled out when I was around 25. By that time I was between 150 – 160 lbs. I went to the gym 5 days a week and did a 2 hour work out; one hour of weights and one hour of Aqua fitness. I looked good, felt great and was ambitious.

I had decided to move to Toronto to finish my Degree in Early Childhood Education and after 2 years in University and one working in a Day Care, I found my perfect job as a Parent Worker with the Toronto District School Board. However, the 6 months leading up to me landing the job was hellish. I experienced constant leg and joint pain. I either had extreme diarrhea or constipation. I was always nauseous and had little or no appetite. I went to the doctor’s office almost every week and they could not find anything wrong with me.

In January 1990, I woke one morning after having a terrifying nightmare. I had been dreaming that the doctors were amputating both of my legs due to cancer. I was in terrible pain and it seemed nobody believed something was happening to me. My partner at the time, Scott, took me to the Toronto East General Hospital and I swore that I would not leave that hospital until somebody found out what was wrong with me.

Once in Emergency, I waited there for 2 days while they ran every test they could think of; ectopic pregnancy, appendicitis, cancer, ovarian cysts, bowel obstruction, gall bladder stones, kidney stones on and on and on. Finally, they admitted me for no other reason than my white cell count had gone through the roof.

Then I developed a fever of 105°F for a period of 5 days. I don’t remember much about that other than the nurses bathing me, with what felt like freezing, water, then changing my sheets a lot, being really cold or way too hot, and just being really tired and wanting to sleep. I remember at one point thinking that it would be okay if I fell asleep and died. I was just too tired to fight anymore.

I guess the whole time this was going on the doctors were still running tests because one day the fever broke and I started to feel more like myself. My new partner in health, my gastroenterologist, Dr. Appell, come in one day and told me I had Crohn’s disease. I started to cry. He said that things would be okay, that Crohn’s was a treatable disease. I told him that that wasn’t it, I was crying because there really was something wrong with me, and it was not just in my head, and that now I would be able to get help.

What I didn’t realize was that the cure was just as bad as the disease. I was put on a drug called Prednisone, a steroid. When I was on the drug I would gain about 100lbs and when the Crohn’s would flare up I would loose about 60 – 80 lbs.

Eating while on Prednisone was bizarre. The drug made me so hungry. I am not talking about the “oh I think I am hungry” pains one gets but the “my god! I am so hungry, that if I don’t get food now I will eat my own arm” hungry. I had absolutely no sensation of fullness and while I was on the drug I ate almost constantly. I also retained lots of fluids and puffed up like a balloon.

A cycle of yearly admissions to the hospital began. Every year around January I would start to get sick and end up in the hospital in February on massive doses of prednisone. Sometimes the stays were short 1 - 2 weeks sometime longer; the longest being 6 months.

Now let me jump in here and tell you that the body does produce about 7mg of prednisone naturally. But I was taking 100 – 150mg a day for almost 5 years straight. The worst part is that when anyone takes the drug orally, the body stops producing it so when one tries to come off the drug one often experiences a flair up of the illness that the drug is treating.

Now you do the math. I was no longer 160 lbs. Rather I was close to 270lbs. My partner, Scott and I had separated. My life had changed too drastically for him to handle and both of us were miserable in the relationship. After the separation, I had my last major stay at Toronto East General and it was on this occasion that I was put on a new drug called Mercaptopurine. It is an immune system suppressant. The logic was that Crohn’s disease is in response to an overactive immune system - so the body attacks itself. If the immune system is suppressed enough then the Crohn’s become inactive, though a chronic condition that is still potentially fatal, with occasional flair ups. After a year of getting back on my feet, with the help of many friends (special thanks to Linda Watters), I faced the world wondering when I was going to get sick again.

I watched that February roll by without needing a hospital stay. Two years passed and I was still fine. I went to Dr. Appell and we agreed that I was lucky enough to have found a drug that put the Crohn’s in remission. The tests confirmed it. I had old scars in my large bowel, but no active Crohn’s Disease. I was ever so happy. I mean, there were still restrictions on the food I could eat (like no canned tomatoes, alcohol, fruits with high levels of citric acid) and occasionally I did experience flare-ups but basically I was healthy.

Then in the summer of 2001 I realized that I was experiencing excessive thirst and urination. I had found out in 1996 that taking prednisone could cause Diabetes and I suspected that that was exactly what had happened. I was right.

My then partner (one day husband) Chris and I went through the testing stage, the pill stage and the insulin dependent stage together. But it was only while I was on insulin that I started getting really good control over my sugar levels. Unfortunately, the medications I was adding to my regime plus the insulin were causing me to gain more weight. I began to struggle with high blood pressure, cholesterol and developed a heart mummer. Viral infections (like colds and flues) caused my body to become less sensitive to the insulin I was taking. Soon, I was taking huge amounts of NovoRapid (a fast acting insulin taken with every meal) and Levimer (a slow acting insulin taken once in the morning and once at bedtime) which controlled my sugar levels less and less.

I became really depressed and at 38 began to think of what I could do to get my life back. I had ideas, but nothing really panned out. At 39, I was so depressed that I confessed to my endocrinologist, Dr. Pike, that I was at my wits end and really didn’t know where to turn. I was close to 300lbs and just sinking emotionally. He suggested the gastric by-pass surgery. I ran with the idea.

And now you are up to date on how I got here, keeping this blog and explaining why I have gone through such a drastic, life altering experience.

“What was my weight before the surgery”? You ask. A girl should never tell, but I will. I was 312 lbs. It has been 2 weeks of preparation time and 6 days since the surgery and I am now at 290lb. I am no longer taking insulin and some of my medications. I’m on my way. Not bad, eh?

Sunday, June 24, 2007

Surgery Day to Discharge Day

I have finally been discharged from the hospital and arrived home on Friday, June 22 around 2:00 pm. The last four days have been a real adventure.

Tuesday, June 19 - Surgery day
I had packed all my bags the night before and though I was ready to go, I was still very frightened. If you were to ask me if I wanted to do this, I would have told you No. If you were to ask me if was going to do this, I would have answered Yes. The fear never left me and in all honesty, I don’t think that it leaves anybody.

Anyway, my husband Chris, my parents and I arrived at the Humber River Regional Hospital at 10:00am. I had expected to have some waiting time but that was not the case. Immediately I was taken in to the registration room where I was questioned about all the data I had given from all previous visits. They put an IV line in and it was at this time that they finally allowed Chris to see me again. I was feeling a bit shaky, but having Chris there to tell me jokes really helped.

My friend Jane had arrived while I was registering and since the nurses only allowed one person in the waiting area at a time, Chris left and she came in to say hi. It was really good to see her. Jane is one of those people that has an amazing outlook on life. She has the ability to laugh and carry you with that laughter.

My parents then came through, reassuring me and went back to the waiting room with Jane. I had been really worried about my parents being at the hospital. I was concerned that I wouldn’t be able to put on a strong front for them and I certainly did not want them to worry more than they already were. But it turns out my concerns were for nothing. Jane was able to keep them company and chat with them while Chris and I waited to be called down to the operating room.

When the doctor called me in, I did cry as I left Chris. I was afraid but at the same time sure that I needed to do this.

The operating room was cold, I guess mostly because I was dressed in a flimsy hospital gown, but the staff was great. I reminded them that I was the only one to be asleep during the surgery; an attempt at humor, one that, I’m sure, comforted me alone. They quickly put me out and I don’t remember anything until I realized that somebody had taken all the moisture out of my body and stuffed my mouth with cotton.

Apparently the first thing I asked for was “Ice”. I remember being very hot too. Later I found out that Jane and my Mom spent the next 4 hours cooling me down with cold face cloths.

I remember bits of conversation, me saying something and then Chris saying “Your right. That didn’t make any sense”. Apparently, after I responded to the conversation around me I realized that I was actually responding to something that was going on in my head and started making funny faces in response to my own comment. Chris, with his great sense of humor, was actually putting me at ease with his jokes. It may sound really weird, but the little jokes helped. I knew that people were around me and that they were listening to me.

I remember Jane kept saying that “You don’t have to talk with your eyes open”: Again, every time I tried to say something I would open my eyes and loll my head around because my eyes could not focus on anything.

Eventually everybody left and I continued to sleep. At 11:00pm I finally woke up enough to phone Chris and tell him I was okay. Then back to sleep I went. I slept solidly through the night except, of course, for the nurses waking me up every two hours to check my vitals.

Wednesday, June 20
Basically, I had two goals. One was to walk and the other to eat & drink water.

Walking does two things; it prevents blood clots and helps move the gas that they pump into the abdomen for the surgery out of the muscles. Once my family arrived, Chris took me on short walks about every 1- 2 hours. My body was sore but the painkillers helped. In fact walking itself didn’t feel to bad, standing up to start walking was the killer. There are five holes in my abdomen that they used to insert the tools, camera, light and gas. Two of the holes are about ½ inch long. The other three are about 1 inch long and heavily bruised. These were the areas that hurt the most when trying to stand.

I was given broth for breakfast, cream of chicken soup for lunch and cream of broccoli soup for dinner. I had absolutely no appetite, but I was able to eat about ½ cup of everything. The food was not too difficult to eat, but drinking water was a completely different story. Every time I drank water, whether it was cold, room temperature, or hot, I would experience pain just at the end of the esophagus and began burping water and then minutes later that would progress to hiccups. Hiccups hurt! That is all I have to say about that.

Dr. Hagen decided to keep me in for an extra day, until I could drink water without ill effects.

My friend Shelna came for a visit. Shelna is one of my closest friends. I have known her for over 10 years now. She has a great sense of humor and loves teasing me about my foibles. We have a lot of common interests; knitting, gardening, and cooking to name a few. We really work on having an honest and supporting relationship.

Shelna brought me a few gifts and then she too, took me on walks.

At around 8:30pm everybody left for home.

Another patient joined me in my room late in the evening, around 7:30 pm. She had had the same procedure done four weeks prior. However, she had developed a stricture at the bottom of her pouch and anything she ate or drank would cause her to vomit. When the doctors tried to widen the stricture, the pouch tore and she had to be operated on a second time. She was saddened by what was happening, but she, her sister and her husband were able to maintain a good attitude about it.

Thursday, June 21
In the early hours of the morning, my roommate began crying. I couldn’t blame her; in fact I was surprised that she had held out so long. She was in a tremendous amount of pain and knowing what she was going through, I would have been crying hours ago.

I am not one to sit with a “wait and see” attitude. So I got myself out of bed and told her I was keeping her company. That I would talk about my family to help her keep her mind off things. Now I don’t consider myself to be any kind of story teller. Shelna is much better at it then me, but I blathered on about my siblings, my parents, and life in general. She too, began to chat and soon the pain medication began taking effect and the nurses bustled around her and I went back to bed.

At 10:30am her family arrived with a small teddy bear for me and a card from the gastric by-pass support group that she belonged to.

My day progressed normally. My family returned to visit, I walked and tried to eat and drink, and even tried to play a couple of games of crazy eights. By 7:30pm I was exhausted and told my family to go home. I was so tired. I just wanted to sleep. However this was not to be.

By 8:00pm my roommate’s blood pressure had dropped and her temperature was going up. The doctor came in and increased her fluids. An hour later her blood pressure was still very low and her pulse thready. The doctor then opened the incision and tried to see if there was any leaking of the pouch into the abdomen. She was repacked with gauze and more fluid was pumped into her. An hour later, she had still not responded. The doctor then decided to take her into the operating room to open her up and see what was going on. At 1:30am she was wheeled away, and I only heard later that she was out of surgery and in ICU.

Friday, June 22
By 7:00am I was a wreck. I had not slept a wink and was emotionally devastated by what had happened to my roommate. I could not calm myself down and I just wanted to go home. Visiting hours were not until 11:00am, but I called Chris and asked him to come to the hospital and just sit with me. When he arrived, I just broke down and cried. Fear, doubt and abject terror filled me. I couldn’t do anything else but cry.

After I calmed down, Chris and I talked, walked, and I tried to eat – but I could only focus on waiting (impatiently) for Dr. Hagen to come in to discharge me so I could get the heck out of there. The irony of the situation was that every other morning Dr. Hagen had made his rounds by 7:30am. Today this would not be the case. Since he had been called in early in the morning to tend to my roommate’s problems, he would not return until 12:30pm. Finally he did give the go-ahead for me to be discharged, and then everybody who I had been waiting to talk to showed up at once. The Nutritionist arrived, as did the nurse who was to check my blood sugar, as did the nurse who was to check my vitals, as did my lunch. It took me another hour to get out of the hospital and I was ever so happy to leave.

I was to make an appointment to see Dr. Hagen two weeks later in his office. The Nutritionist was going to call me in two weeks to discuss moving my diet to pureed foods and my blood sugar was within normal ranges.

The drive home was hell. Take notice, if you every have this procedure done, ½ hour before you leave the hospital have the nurse give you painkillers for the ride home. There is just no way to get home without extreme pain if you don’t take something. (Oh, and a special tip of the hat to the city of Toronto for their extremely bumpy roads).

Once home, I took a bath and slept for an hour.

My parents were busy in the kitchen cooking all the food (soups) I would need for the next two weeks. It was a relief to know that I would not have to worry about it. The rest of the evening was spent chatting and discussing the best procedure to pound my medication into powders.

Saturday, June 23
I took my parents to see the community garden that Shelna and I work at. We didn’t do any work; I really just wanted to show off how big my garlic had grown. We returned home by 11:00am and my parents left immediately. Chris and I napped.

The day went well. I was in little pain and felt fine.

We had been invited to a party that evening but I was not in any shape to handle the ride or the late hour, so I gave Chris the cell phone and told him to go. He left at 5:00pm.

I watched my recorded episodes of Coronation Street and around 9:00pm I went upstairs to check my email. At 9:30pm I was overcome with chills and the shakes. I decide to go to bed and hoped that everything would calm down. By 9:45pm I was not any better and decide to call Chris and ask him to come home. He said no problem; he would be home in 45 minutes. About 10 minutes later I heard somebody in the house. I knew that it couldn’t be Chris and to my surprise, my next door neighbor Anneke shows up! Chris, realizing that it would take him a while to get home, had called our neighbors, Anneke and Neil, who are very good friends of ours, and had Anneke come over to check on me until he arrived home.

Once Anneke left, Chris ground up my painkiller medication and I took it with applesauce. I then started feeling too hot, so we began tracking my temperature. I had been given instructions that if my temperature went to 100° F I was to go to the emergency room at Humber River Hospital. My temperature fluctuated between 98°F and 99.7°F over the next few hours and when it finally dropped back around normal at 4:00am Chris went to bed in the spare room and I slept through the night.

Monday, June 18, 2007

Things I have noticed

I have been on the path of obtaining my surgery date for a while - 2 years actually. This process involved a referral to a gastric by-pass surgeon by my current endocrinologist. From there I had appointments with the gastric by-pass surgeon (Dr. Hagen), a heart specialist, a social worker, a dietitian, and another endocrinologist. All of these appointments took 1 year to complete. Upon completion, they, as a group agreed, that I would be a good candidate for the surgery. Then I was told the waiting list for a surgical date was another year.

While all this time was passing I participated in a few programs that I hoped would help me understand my eating. I was involved for several months with the Eating Disorders Program at Toronto General Hospital. {Toronto Hospital, Toronto General Division 200 Elizabeth Street Toronto, Ontario M5G 2C4 Tel: (416) 340-4156 Eating disorder - Outpatient service}
This program was geared towards people who suffer from bulimia and anorexia. Neither of these were my problem. I am a binge eater and thus the program, though it gave me some coping tools, did not really help me.

I also participated for six months in the Toronto Rehab program that focuses on healthy hearts. Since my relationship to exercise is directly related to my weight (and health) I thought "why not?".

I have been involved for several years with Sheena's place too, participating in programs that I thought would help me.

I have found that the culmination of all of these programs have brought me closer to understand what is going on. However, the most important thing that I have come to realise is that the "why" does not matter at all. Rather it is the "what do I do now?" question that becomes paramount. I may never understand why my relationship with food is the way it is, but as I understand its' influence over me, I can begin to take control over how I eat.

Now, since I have obtained my surgery date (Tuesday, June 19, 2007), I have begun to seriously consider whether or not I could help others who are going through the same thing. I have decided to post some of the internal work I have done in regards to my relationship with food. These are things about myself that have crystallized for me and I wanted to track them.

I have realized that the pace at which I eat food is directly related to a fear that my food will be taken from me. I know that sounds really bizarre because I am a grown woman and who really, in their right mind, would take food away from anybody. It is an irrational fear, but one that seizes me and dominates my behavior long before I actually realize that I am hunkered down and eating at an incredible rate. It is also tied into the fact that I am aware that I either should not be eating this item because it is an unhealthy food or that or that the amount is way too much. I have begun looking at behavioral tactics to deal with this.

Drive to Eat
I have realized that I have a drive to eat that is unrelated to the desires of my stomach. In other words. I eat when food is presented to me not out of impulse (because that would mean that I would have awareness and control over the impulse) but rather because of a reptilian drive to eat for survival.

Satisfaction and Satiation
I have realized that I usually eat without satisfaction and rarely feel satiation when I eat. This pushes two buttons. Without satisfaction, rather than stopping and eating something more satisfying, I continue to eat the same thing waiting for satisfaction to dawn on me.The second button is that without satiation, I will continue to eat until I feel pain. Outside of pain, I almost never know when I have eaten enough.

I have a screwed up mind's eye view on portions. I can measure out a half a cup of food onto my plate and know that it is a half a cup of food. But, when I look at it, it looks like the scrapings of leftovers that amount to no more than a teaspoon or so. The fear this vision instills borders on terror. Thoughts like "I will not have enough food' or "I am being denied food" send me into a tail spin of overeating.

Where to Begin

As my 38th birthday approached, I discovered that I had also stumbleded upon my mid life crisis. I was not happy with the politics of my job (not the job itself) nor was I happy about my weight and the consequences of it. I began to map out a five year plan which included, upgrading my education, relocating to Nova Scotia, and losing just over half of my body weight. As the plan developed, the main focus was weight loss. This blog, though it will deal with many subjects, will mainly deal with the steps that I take to lose this weight,