Hi readers! It has been a long time since I have posted about my health. Here is a life update filled with pictures and videos.
But now it's time to get real.
On February 25, I am saying goodbye to my stomach. It was actually supposed to be June 25 of this past year (2018). I was all ready! See this was in March!!!
((Had CT because I was experiencing discomfort in my upper right quadrant, and he wanted to be sure my gallbladder wasn't an issue. It wasn't. Good thing or I would be getting that removed,too!I guess it's still a possibility in case opening me up shows something different))
Before this could even be decided (the June 25 date), I had to have a pelvic laparoscopy to address my tumor pain to be sure nothing was there. Feb 2018 was the lap. Aside from a random surgical staple, probably from my C section, nothing was noteworthy and date was finalized. Leave was approved. Everything was set.
But then when our landlord told us he wanted to sell his place (as described in that first link in beginning of entry), we couldn't afford the surprise move with my reduced paycheck. So I postponed. About a year later (November 2018), I scheduled for February 25. It's really happening! Again, leave approved, insurance approved....just waiting.....
The idea of losing my stomach was first brought up here after an endoscopy showed a lot of erosion to acid reflux and how the antacids I was on were not working. Since then (2011!!!!) I have developed an almost asthma like condition thanks to aspirating reflux (I only take zantac now which helps way more than the PPIs ever did). The idea of a TG was again brought up in 2012 or eraly 2013. And then in this entry here after having Oliver (2014). And again in 2015. And again in 2016. And again in 2017. Suffice to say, it's been on my radar for a very long time.
My surgeon has moved hospitals since he last cut me open. I followed him. He is now Chief of Surgery! Finally, only recently, in the last year and a half, decided to go through with the surgery. I stalled for the longest time due to PTSD from my PG recovery as described here as I confessed it probably lead to an eating disorder
As I described in my last update (see first link in very beginning of blog), I think a lot of my psychological issues resolved due to life just being ...better. But I also have strong motivation-- to survive the impending surgery! I am almost 100 pounds!!!
I really did not want to do this. Recovery sucked. The idea of being cut open again sucks. But the idea of being alive for Oliver and John and being able to enjoy my life again far outweighs the suck. 1-2 years of blah is nothing compared to the 60 or so years I have left to live.
But anyway, November 2018, we tried again with rescheduling
So here is a list of Questions with answers to them.
Q: WHY IN THE WORLD ARE YOU DOING THIS?
A: 1) To increase my quality of life, which sucks right now due to reflux/nausea attacks.2) to save my esophagus from further damage and possibly esophageal cancer down the road. I also have GISTS which can also become cancer (very rare, but it can happen). So. Chop chop.
Q: HOW WILL YOU BE ABLE TO EAT?
A: By chewing food and swallowing it.
Q: HOW DOES EATING WORK WITHOUT A STOMACH?
A: Believe it or not, people can live quite normal, healthy lives without a stomach. The main role of the stomach is to digest all the nutrients with acid...nutrients therefore entering bloodstream/body absorbs them, maintains them. WITHOUT A STOMACH, food still digests and absorbs in gut, but it happens FASTER and therefore absorption isn't as good, which will be explained below. The trick is- more frequent, smaller meals to maintain nutrients/calories!
Q: What are the consequences of eating without a stomach?
A: Malabsorption. Nutrients/vitamins/minerals will not absorb nearly as easy. I will need to supplement. This gives a good overview of how I will need to take care of my body.
Q: What are some consequences of malabsorption
A: Here is the list:
1. Being grossly deficient in vitamins such as calcium, magnesium, vitamin D, iron, folate, b12 which can cause any of a number of things such as Energy loss, hair loss, tooth decay, all around malaise of not on top of things. This site is also a good resource for how TG patients need to take care of themselves post surgery. Those whose bodies respond well to the smaller, frequent meals, who can eat without getting sick, whose bodies respond well to the supplements go on live GREAT, normal lives. There is a chance the body just does not respond, (rare but it happens), and this terrifies me.
2. Weight loss. Thanks to a great thing called Dumping Syndrome. Or just not being able to keep foods down. Or if the esophagus just stops working like mine did in my PG recovery.
Q: How long is recovery?!!?!?
A: My surgeon contends 6-8 weeks. But I have my full FMLA 12 weeks approved so I can learn to eat and space meals and see how my body reacts to certain foods before I return to work.
Most people go back to work full time with no issues. Some have to move to a part time basis depending on line of work and energy level. I anticipate being able to go back to work full time with no issues with one caveat: no more really late hours for a long time. But we'll see. Maybe I'll surprise myself.
Q: What is recovery like?
A: 7-10 days in the hospital. Nothing to eat or drink. Ice swabs only. Post op day 4 or 5 (once I start passing gas) they will start tube feeds. I can be discharged as long as I take tube feeds well and POOP.
I will be on tube feeds for a few weeks. Once I go home, I can't eat anything still until I get a swallow test which is usually about one week post discharge. Then I can do clear liquids for a week. Maybe I am remembering incorrectly and that I can at least have clear liquids prior to the swallow test. I guess I will find out. But it starts with clear liquids, then regular liquids. Then soft solids for a couple of weeks while slowly introducing other foods. I might get a different timeline post op, but this is the general time line. My surgeon is rather conservative in the recovery period. Some people are eating before being discharged! My surgeon wants the area to heal fully. He has a 100% success rate with this approach. Trying to eat eat earlier can cause tears and who wants that???
Q: What can't you eat anymore?
A: Everyone is different. The consensus among TG patients is avoiding sugars and foods high in carbs. These foods cause dumping and nausea. Sometimes it gets better over time. Sometimes it doesn't. Some people can't eat dairy anymore. Some people can't eat meat anymore. Some people can't eat meat OR dairy anymore. some people can eat everything. some people can eat [[insert food item]] one day and can't the next. It's a big life changing surgery and I won't know the extent until I start eating again.
I have a lot of anxiety about my recovery...what I will be able to eat, keeping my weight, NOT DYING. Leaving Oliver. Scaring Oliver. Dying on Oliver and John. I worry that they will see things that scans have not been able to see. I am scared I have cancer again. I am scared I can still get it again. I am scared this surgery will inadvertently kill me.
But I know a LOT of people who have had this and are doing GREAT. I therefore have a lot of personal experience support. My surgeon is also very helpful and knowledgeable. There are lots of resources online for post TG eating like this that will help me navigate my way in life without a stomach.
Blast from the past pics : (what i am SO looking forward to this second time around)
As my operation approaches, i will update. As of now, I am enjoying food and trying to gain.
Thanks for reading, friends and fam!
But now it's time to get real.
On February 25, I am saying goodbye to my stomach. It was actually supposed to be June 25 of this past year (2018). I was all ready! See this was in March!!!
((Had CT because I was experiencing discomfort in my upper right quadrant, and he wanted to be sure my gallbladder wasn't an issue. It wasn't. Good thing or I would be getting that removed,too!I guess it's still a possibility in case opening me up shows something different))
 |
| With my handmade stomach, made by my ex-flatty from college |
Before this could even be decided (the June 25 date), I had to have a pelvic laparoscopy to address my tumor pain to be sure nothing was there. Feb 2018 was the lap. Aside from a random surgical staple, probably from my C section, nothing was noteworthy and date was finalized. Leave was approved. Everything was set.
But then when our landlord told us he wanted to sell his place (as described in that first link in beginning of entry), we couldn't afford the surprise move with my reduced paycheck. So I postponed. About a year later (November 2018), I scheduled for February 25. It's really happening! Again, leave approved, insurance approved....just waiting.....
The idea of losing my stomach was first brought up here after an endoscopy showed a lot of erosion to acid reflux and how the antacids I was on were not working. Since then (2011!!!!) I have developed an almost asthma like condition thanks to aspirating reflux (I only take zantac now which helps way more than the PPIs ever did). The idea of a TG was again brought up in 2012 or eraly 2013. And then in this entry here after having Oliver (2014). And again in 2015. And again in 2016. And again in 2017. Suffice to say, it's been on my radar for a very long time.
My surgeon has moved hospitals since he last cut me open. I followed him. He is now Chief of Surgery! Finally, only recently, in the last year and a half, decided to go through with the surgery. I stalled for the longest time due to PTSD from my PG recovery as described here as I confessed it probably lead to an eating disorder
As I described in my last update (see first link in very beginning of blog), I think a lot of my psychological issues resolved due to life just being ...better. But I also have strong motivation-- to survive the impending surgery! I am almost 100 pounds!!!
I really did not want to do this. Recovery sucked. The idea of being cut open again sucks. But the idea of being alive for Oliver and John and being able to enjoy my life again far outweighs the suck. 1-2 years of blah is nothing compared to the 60 or so years I have left to live.
But anyway, November 2018, we tried again with rescheduling
So here is a list of Questions with answers to them.
Q: WHY IN THE WORLD ARE YOU DOING THIS?
A: 1) To increase my quality of life, which sucks right now due to reflux/nausea attacks.2) to save my esophagus from further damage and possibly esophageal cancer down the road. I also have GISTS which can also become cancer (very rare, but it can happen). So. Chop chop.
Q: HOW WILL YOU BE ABLE TO EAT?
A: By chewing food and swallowing it.
Q: HOW DOES EATING WORK WITHOUT A STOMACH?
A: Believe it or not, people can live quite normal, healthy lives without a stomach. The main role of the stomach is to digest all the nutrients with acid...nutrients therefore entering bloodstream/body absorbs them, maintains them. WITHOUT A STOMACH, food still digests and absorbs in gut, but it happens FASTER and therefore absorption isn't as good, which will be explained below. The trick is- more frequent, smaller meals to maintain nutrients/calories!
Q: What are the consequences of eating without a stomach?
A: Malabsorption. Nutrients/vitamins/minerals will not absorb nearly as easy. I will need to supplement. This gives a good overview of how I will need to take care of my body.
Q: What are some consequences of malabsorption
A: Here is the list:
1. Being grossly deficient in vitamins such as calcium, magnesium, vitamin D, iron, folate, b12 which can cause any of a number of things such as Energy loss, hair loss, tooth decay, all around malaise of not on top of things. This site is also a good resource for how TG patients need to take care of themselves post surgery. Those whose bodies respond well to the smaller, frequent meals, who can eat without getting sick, whose bodies respond well to the supplements go on live GREAT, normal lives. There is a chance the body just does not respond, (rare but it happens), and this terrifies me.
2. Weight loss. Thanks to a great thing called Dumping Syndrome. Or just not being able to keep foods down. Or if the esophagus just stops working like mine did in my PG recovery.
Q: How long is recovery?!!?!?
A: My surgeon contends 6-8 weeks. But I have my full FMLA 12 weeks approved so I can learn to eat and space meals and see how my body reacts to certain foods before I return to work.
Most people go back to work full time with no issues. Some have to move to a part time basis depending on line of work and energy level. I anticipate being able to go back to work full time with no issues with one caveat: no more really late hours for a long time. But we'll see. Maybe I'll surprise myself.
Q: What is recovery like?
A: 7-10 days in the hospital. Nothing to eat or drink. Ice swabs only. Post op day 4 or 5 (once I start passing gas) they will start tube feeds. I can be discharged as long as I take tube feeds well and POOP.
I will be on tube feeds for a few weeks. Once I go home, I can't eat anything still until I get a swallow test which is usually about one week post discharge. Then I can do clear liquids for a week. Maybe I am remembering incorrectly and that I can at least have clear liquids prior to the swallow test. I guess I will find out. But it starts with clear liquids, then regular liquids. Then soft solids for a couple of weeks while slowly introducing other foods. I might get a different timeline post op, but this is the general time line. My surgeon is rather conservative in the recovery period. Some people are eating before being discharged! My surgeon wants the area to heal fully. He has a 100% success rate with this approach. Trying to eat eat earlier can cause tears and who wants that???
Q: What can't you eat anymore?
A: Everyone is different. The consensus among TG patients is avoiding sugars and foods high in carbs. These foods cause dumping and nausea. Sometimes it gets better over time. Sometimes it doesn't. Some people can't eat dairy anymore. Some people can't eat meat anymore. Some people can't eat meat OR dairy anymore. some people can eat everything. some people can eat [[insert food item]] one day and can't the next. It's a big life changing surgery and I won't know the extent until I start eating again.
I have a lot of anxiety about my recovery...what I will be able to eat, keeping my weight, NOT DYING. Leaving Oliver. Scaring Oliver. Dying on Oliver and John. I worry that they will see things that scans have not been able to see. I am scared I have cancer again. I am scared I can still get it again. I am scared this surgery will inadvertently kill me.
But I know a LOT of people who have had this and are doing GREAT. I therefore have a lot of personal experience support. My surgeon is also very helpful and knowledgeable. There are lots of resources online for post TG eating like this that will help me navigate my way in life without a stomach.
Blast from the past pics : (what i am SO looking forward to this second time around)
 |
| Post Op day....wanted this pic to see my tubes haha |
 |
| Up and walking less than 24 hours post op |
 |
| Not looking forward to this "look" again (might be lucky and not need the NG) |
:
 |
| PG sugery scar goes to belly button. When I had my NF tumor removed, they went around belly button.Also, below marks are not stretch marks but yoga pants marks bc they were tight after eating dinner haha. Interested to know how much different this scar will look. |
As my operation approaches, i will update. As of now, I am enjoying food and trying to gain.
Thanks for reading, friends and fam!
You are one of the strongest women I know. That's great you've got such great support, and thank you for keeping all of us updated!!
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