Last Thursday during our young adults group at our home, a sudden and intense pain struck me. Right away, I knew I was not going to be able to control the pain at home. Doubled over and under excruciating pain, it was time to go to the hospital. Fortunately, our friend Rain was over at the time and agreed to stay with the girls while we raced to the emergency department.
With a unique health history, even at Kate’s hospital it is important to be able to give the doctors important information to get them up to speed. Here are some of the important details I am prepared to give:
- History of Gastric Cancer – There is usually no need to go into the family history, CDH1, etc… especially because I am usually in too much pain to explain it all.
- Total Gastrectomy in March 2014 with a bowel resection in September 2014 – Important to let them know I do not have a stomach and my second surgery due to the infected Meckel’s diverticulum.
- History of Chronic Bowel Obstructions – usually gives them context for the most likely reason why I am here.
- Extremely Allergic to Aspirin – new for 2017, as I discovered in March when I went into anaphylactic shock after taking two Excedrin for a headache.
- Per my surgeon, the protocol: X-ray, Pain Management, Nausea Management, call the surgeon, NPO for a couple days – one of the most helpful things a doctor has given me is a list of clear instructions to give the emergency department. So far, this protocol has worked great. Again, I cannot underline enough the importance of being your own health advocate. I start with an X-ray because I have been exposed to a lot of radiation over the past three years. X-ray’s can also indicate a bowel obstruction pretty easily with less radiation. In this case, this is exactly what it revealed. Pain and nausea management is pretty self-explanatory, but the pain associated with a bowel obstruction is at least a 9 out of 10 for me on the pain scale. If after two/three heavy dosed pain-meds I still cannot walk or stand up straight, this is a good indicator I will most likely not be able to control the pain at home. NPO is short for nothing by mouth and limits my diet to clear liquids for a couple days to give my bowels a rest and a chance to get things moving again.
After the start of a small bowel obstruction, I try and up my intake of liquids and start walking. For a couple days I feel as bloated as Baymax from Big Hero 6, but once I am well enough, I will get on my bike and do some light exercise. Getting outside and moving is more for my morale than anything else, but I believe activities like walking also help get my bowels moving again. While bowel obstructions are an annoying aspect of life without a stomach, when I have setback, I will try and enjoy everything I can. On this video blog, I take you on a short recovery ride through Old Almaden on a pretty frosty morning. Hope you enjoy it.
Graces,
Steve
Steve Dang 
Steve, I am sorry to hear that you are having so much pain due to bowel obstruction after TG. Is this common and did you have bowel issues prior to TG? Thank you for responding to me on the FB CDH1 support group. I hope that you are feeling better soon and would love to meet you while I am at Stanford for my TG 12/28/17 “if” you are well. I was hoping to have contact with other patients of Dr. Norton’s. I was told at my genetics appointment that they would put patients in touch with me but I have not heard from anyone except for your response on FB.
I have heard or read that the first 2 days are pretty rough after the surgery, is that true? My 11 year twin bots want to come down for my surgery as well. My husband will be staying in Palo Alto but I am thinking that the boys should stay with relatives I have in the Bay Area and see me maybe on day 2. My mom says they should wait until I have made through surgery and am with it.
How did you do with eating after surgery? Any tips?
Thank you and feel better soon!
Sincerely,
Christine Dyer
Thanks for the message – I never had bowel issues prior to my TG, it’s just the way my body is sometimes, I usually can feel it happening for a few days and can manage before it gets really, bad, but on rare occasions it hit me pretty bad. I would love to come and visit you, probably a day or two when you are out of surgery and have some recovery time. Keep my posted, maybe you’ll feel well enough for me to come and visit on that Saturday or Sunday. Yea, sometimes Nicki at Stanford is really busy, but I’d be happy to connect with you some more.
First 2 days are really rough. You’re in a significant amount of pain, but after they remove the NG tube, you start feeling a lot of better. I would say after surgery you will need to keep the eating to a real basic diet of white bread, potato chips (lays, for whatever reason I could always keep down), and sip very small amounts of water. For the first 6 months it is a very big adjustment for your body, but afterward, you will find your eating normalizes a lot.
-Steve
Thank you and feel well soon! I have had bowel issues off and on for years and GERD that has gotten worse so I hope the bowel does not get worse but I guess I will soon see.
If you do not mind telling me what is your family history with gastric cancer and CDH1? Gastric cancer-signet ring cell runs in my dads family (Spanish ancestry) and we have traced it back to my dad’s mother’s father, my great grandpa. My grandma died at the age of 52 after 7 weeks from diagnosis and there have been several other family members that have died from it. I believe the first knowledge we had of it was when my dad’s cousin was diagnosed at the age of 42 and suffered for over a year before dying. They found the gene in the autopsy of her stomach and then her mother got it and the lobular breast cancer and died as well. My dad’s sister was the one that did all the research and went to Stanford first over the summer but she was positive for lobular breast cancer so had to have a double mastectomy this summer and reconstruction in September. My dad was also positive but their brother was negative. I am the first of my siblings and 1st cousins to get tested and will be the first in my family to have the surgery. Crazy and scary but I am so glad to have the knowledge and power to do something before it is too late. I just hope there is more that can be done for prevention before my boys are of age.
Talk to you soon!
Absolutely agree with knowledge being the power to doing something before it’s too late. My grandma, aunt, dad and sister died of Hereditary Diffuse Gastric Cancer, although they died before they knew about HDGC and CDH1. My dad was 38 when he passed, my sister was 21 when she passed. When I got diagnosed I was 29, so splitting the difference between my dad and my sister, it was a big deal that I acted upon this knowledge immediately. I am glad I did because they had found cancer all over within one of the layers of my stomach in post-surgical pathology.
For my two girls, I want them to get tested when they are in high school and if they come up positive, then they can elect to get the surgery hopefully between high school and college. We are starting to have some of these age appropriate conversation now.