I’ve been following the advice and comments from social media groups for gastrectomy and CDH1 mutations. I received a lot of helpful advice but I would put one item on the priority list that no one had mentioned to me. The weight comes off quickly and I’m surprised at how quickly 5-10 lbs can disappear if I get sick for a few days. One of the reasons I don’t like looking in the mirror is seeing the oversized clothes drooping off of me. I have been waiting for my weight to stabilize before going out for new clothes. So what do you do in the interim? BUY A NEW BELT. Interestingly, no one had suggested this. Perhaps I’m in the minority and most people are happy to rush out and buy new clothes. Or maybe their old belts had enough extra holes. For those who are more like me, my advice… start with a new belt. It helped to extend the life of the clothes I had in the beginning. It may not have looked great but the clothes felt better and my shirt tails stopped pulling out. Eventually, there is only so much you can let your waist line fold and cinch before it starts looking real bad. Not to mention all that fabric that at one time just surrounded my thighs but now hangs in an empty space. And my shirt collars are sagging. So when is a good time to invest in new clothes? For me it was when my son mentioned that I was “Rockin’ the baggy look”. I started with some new clothes for work. Three inches smaller at the waistline and a half size less for shirts, fitted vs. regular fit, and I’m no longer carrying all that extra fabric. While I still have trouble recognizing the person on the other side of the mirror, at least he is dressing better. I will be looking out for those Labor Day/Back to School sales this weekend.
A quick up date from my last post. My GI physiology is back to normal. (It’s the nature of my life these days; if you know me, you probably know more than you want to about my bowels.) I have been able to get 5 lbs back in the last 10 days. Much of that is probably from rehydrating, but I take what I can get.
That’s 11 more pounds in a week! The latest twist began about 5 days ago. You know that sour patch commercial with the the line “first they are sour, then they are sweet”? Invert that and you have my world. The only thing different I did 5 days ago was eat about 8 gummy fruit snacks. They weren’t sour. I was craving something sweet. Took a snack bag and before I opened it looked for the nutrition label. Unfortunately, it was on the box not the individual pack and I thought “how much sugar can there be?”. Turns out 9g. First they were sweet, then it got sour. The next day my GI tract began clearing everything. Not quite the same as the dumping syndrome I experienced previously. That is usually a one and done experience. Everything I have eaten the past few days is running right through me. I think most of the weight loss is due to water loss and once my body corrects, I can put most of what was lost back on. I have cut out eating anything with more than 3g of sugar. Keeping a drink with me at all times to stay hydrated. Not sure that the one pack has caused all the trouble. I’m beginning to think I may be fighting a small infection. This is more like what I experienced when I ate something bad. There are signs that my my digestive tract is reverting to normal so with luck I will be back to normal soon.
Since he was in kindergarten, I have been hearing how much Conor looks like me. I never had red hair but that does not seem to matter. For after school programs, parents or guardians are required to show ID when picking up their kids. Countless times I would have my driver’s license ready to show to some teacher who I never met before and be greeted with “I don’t need to see your ID. You must be Conor’s father. He looks just like you.” This continues even today. I have come to accept the majority opinion that Conor inherited a lot of my genes. However, would it be too much to ask that he not inherit one mutated gene? For the past week I have been praying that he inherited my normal copy of the CDH1 gene. No reason to have the mutated copy of this gene. No one would know the difference. Eventhough, I have made it through the toughest part, and things continue to improve, I wish no one would have to go through this experince. Unfortunately, I did not get what I wished for. The news is devastating. It’s reliving the sadness of my brother’s diagnosis, his death, the news that my niece has the same CDH1 mutation, my news and surgery. I know I don’t get to choose how my genes are split or which ones are inherited. This is my fault. However, in time I will accept this as something I could not control.
Hope everyone had a nice 4th of July Weekend! It started out good. Had barbequed chicken and a few bites of steak along with a few bites of corn, and sweet potato fries. These days things change quickly. Around 8:00PM I started to get cramping on the left side of my abdomen. Pain was dull and diffuse. Lasted about 90 minutes. That duration was consistent with what I read about dumping syndrome. Thought I may have drank to much sugar to stay hydrated on the hot day. Now I understand why the recommendation is Crystal Light. Had nausea but nothing came back up, dry heaves. Woke a few times during the night with cramps and nausea. Felt light I needed a bowel movement but nothing happened.
Friday, Kiley had a college tour of Univ of Delaware. I was feeling okay so went with her and Sue. Ate most of a Nutrigran bar for breakfast and had about 8 oz of diet ice tea. The day was hot but I managed another 8 0z of water as we walked around campus. Stopped at the creamery. It was very good but I realized there was a lot of sugar in that one scoop of ice cream so I stopped after the second bite. As we drove home I started feeling the cramping and nausea again. Still no bowel movement since Thursday morning. Sue and Kiley had lunch at Honey Grow, but I couldn’t eat, any food or drink made me sick. The rest of the day/night was trips to the bath room, nothing but dry heaves and more cramps. Thought I was constipated so took a laxative.
Saturday was no different. Spent most of the day in bed. Ate 1/2 a protein bar, 1/3 a cup of yogurt, and drank a few ounces of gatorade. Lost 6 lbs since Thursday (163). Took another laxative before going to bed.
Sunday Morning, woke at 3:00 AM the pain was getting much worse. After 2 hours, I couldn’t take it any more. Woke Sue at 5:00 AM to take me to the ER at Chester County Hospital. They are part of Penn Medicine so they can access all my surgical related records. Had a brief emotional break down, because I really did not want to be back in a hospital. After about 30 minutes of waiting they took me back for an abdominal x-ray. About an hour later they got me a room in the ER. The x-ray didn’t show anything so they ordered a CT. The good news was that the pain had subsided by this time. The bad news was they brought me about 600 ml of contrast to drink. The first 300 ml in 15 minutes. I’m already nauseous and now they want me to drink more volume in 15 minutes than I normally drink in an hour. Sue coached me along. The bloating was painful. Sue tried to convince me that is was less painful than the cramping but I’m not so sure. After a 10 minute break, I managed the other 300 ml of contrast over the next 40 minutes. For those who haven’t had a CT with IV contrast, they tell you that you might feel a warming sensation throughout your body from the contrast. Lying in the cold CT room with only a hospital gown, I’m wanting that warming sensation, but it never came.
So when is dumping syndrome not dumping syndrome? When it is a kidney stone. Never had a kidney stone, nor dumping syndrome. I was so focused on my GI system and lack of bowel movement, that I didn’t think it would be something else. The pain caused the nausea and since I don’t get hungry anyway, it was easy to not eat. The doctor thinks the stress has caused my bowels to slow down and they should be fine. The stone is small (3mm) and should pass on its own. Not sure if this is because my metabolism has changed or because my diet has changed. Hopefully an isolated incident. Sue was a trooper and stayed throughout the 7 hours in the ER. I did tell her I would be fine on my own and would call when done.
With the stone near my bladder, I no longer have any pain so I’m eating again. The “damage” to weight is done. I will back off on the exercise and try to gain some of it back. Still waiting on that bowel movement, but since I didn’t eat much on Friday or Saturday, it may be a while before things start moving again.
Next step… back to training karate. I’ve been reading about people who had total gastrectomies and how they are returning to work and activities 3-4 weeks after surgery. How is that possible? Training for me started to slow down in January when Brian first told us about the CDH1 mutation. It slowed down more when I learned I carry the mutation. I didn’t train at all in April. Monday is an all rank class. I figured I could go and train as a white belt and ease my way back into things. Elijah taught the class. At my healthiest, I often struggle to get through one of his classes. It was a good class. The pace is was not a problem. I focused on the movements, not worrying about speed or power. I know my technique was sloppy and there was no way I was doing that kick and dropping to the floor in kanku sho. In my world, any exercise is good. I bowed out for a 10 minute break about 45 minutes into the class and was able to return for the last 15 minutes. Not too bad considering I’ve was taking breaks every hour during anatomy lab last week. I feel asleep in the family room when I got home. Woke, made my way to bed and sleep through the night. Similar to taking naps after my walks in the weeks post-surgery. Clearly that level of effort is enough to deplete my energy. My plan is to try and train twice a week for now and build up some strength and endurance. Who are these people returning to their normal lives in such a short time?
I suppose it is only natural to have set backs. I need to remain focused when eating. The last 2 days I had plugging 3 times! Fell into the mode of eating normally, which is too quick when there is no pouch to hold food. One of these was me trying to have some soup before going to teach a 3 hour lab. Even with everything being soft, I was chewing, but took in too much volume in about 15 minutes. This was about a quarter cup which still blows my mind that I couldn’t handle that much. What’s more frustrating is that I lost those calories and it was about an hour before I could eat again. I took a protein bar up to lab and ate that slowly over several breaks. The others were both cases where I felt comfortable and ate to quickly. That turned me off from eating for the rest of the evening. I’m not suprised that I let my guard down and fell back on my old habits. Should have realized that 50+ years of eating habits won’t disappear in 9 weeks. I’m back to setting my timer as a reminder to pause between bites. The discomfort from the plugging and the thought that I spent time eating and got zero calories has got me back on track.
Stepping on the scale keeps reminding me of the Stephen King novel “Thinner”. I don’t think I’ve insulted any gypsies and I haven’t eaten any pie since I’ve had surgery so I’m ruling out that I’ve been cursed. Members of the support group I’m in say to not worry about the number as long as you are healthy. I’m not worried about the number, I’m worried that the number is still going down, now below 170. Getting my weight stable is my only medical goal. I’ve been cleared for increasing physical activity. The only restriction is to not lose weight.
Started looking more closely at labels. 26 Cheez-its are 150 calories and 28 almonds are 170 calories. The almonds take up less volume, so the better option. Not good that I have to think this way. Also, you can get about 12g of protein from yogurt, but I realized that I was selecting a brand with less sugar. If I’m eating yogurt I want the maximum calories. I was also drinking G2 and crystal light which were recommended. The experience of drinking water without a stomach is a topic for another time. If I’m trying to get down 64oz of liquid volume in a day I need more than 40 calories so I need to figure out how much protein powder I can add and keep it palatable.
I appreciate those who tell me, I don’t look different as much as those who have said, the weight loss is noticable. Not worried about how it looks. Focused on how it feels and if it is healthy.
Made it through my first week back at work… sort of. I thought 3 hour labs would be a challenge. Made sure I had a protein bar with me. Fatigue hit an hour but 10-15 minute break and I was okay. Also, the week caught up with me. Did not have much energy. I guess weekends are still for napping. PCOM was kind enough to give us July 5th off in addition to the 4th. Should be able to handle a 3 day week.
I’m 8 weeks post surgery and today is my first day back at work. My focus today is being grateful to all the those who encouraged, offered thoughts and prayers and supported me to get to this point. I’m blessed to have so many people continue to reach out and check in on my progress. I continued to receive flowers, and other gifts at home to brighten my view. Visitors, texts and phonce calls were greatly appreciated. For now… Thank you, Thank you, Thank you.