Wednesday, May 30, 2012
In the midst of a large storm, beyond obvious concerns of physical and possessional safety, I found myself repeatedly concerned with bowel safety. Making silent appeals to the universe for the power to stop flickering and remain on without further difficulty and for the weather to remain mild enough that we may remain at home without danger to ourselves in fear of not having access to a restroom.
Do you ever find yourself with such concerns?
When growing up, our home had a well rather than using the town's water and everytime the power went out, so did our ability to use the restroom. If we had enough weather notice to suspect power interference then we would fill several gallon buckets of water in order to restock the toilet tank. Depending on the length of the power outage I would then be forced to flee to city to stay with relatives.
Even to this day, in spite of having access to city water, I still find myself worrying about power outages in relation to restroom access.
Or the fear of the house becoming so damaged from a severe storm resulting in leaving the property or becoming trapped in the house and injured like so many that are viewed on the news channels. Think of the additional injury of being found in a compromising situation due to SBS or other health issues brought on by crisis situations or fleeing for safety without adequate accomodations or when necessary.
Perhaps these are silly or irrelevant concerns to others, but to us with our lives constantly being assaulted by health concerns and bathroom habits, is it a surprise that even during times of potential crisis that we concern ourselves with the most basic needs?
Sunday, May 20, 2012
There are so many activities and hobbies that I enjoy that I want to participate in but sometimes I just can't. Sometimes walking inside from the car is a difficult task in itself much less any real physically strenuous activity.
The evils of food, that wonderful tasting, life preserving particles of food create infuriating, excruciating obstacles. How I hate thou!
Due to having a total colectomy and the majority of my small intestine removed, I have Short Bowel Syndrome and must take medicine to help keep my stomach and bowel calm and controlled in order to function. In addition to SBS issues, food also causes severe stomach pain, cramping, and a delightful soundtrack of very loud stomach rumblings that you can even see move across my stomach like some alien life form trying to break forth from my abdomen. Granted, the rumblings and pain have improved some since the subsequent years after my last two surgeries. My stomach noises could easily be heard across a very large room and once caused my professor to literally jump in the air in fright. I previously absolutely could not allow myself to eat any ethnic foods due to debilitating pain for the period of 1-2 days. Now I am able to eat a variety of foods as long as I'm wise about my intake.
My itinerary isn't planned out by what I want to do but what I think I will be able to do, depending on how my stomach and intestine is reacting to the food I've eaten. And not just the food I've eaten recently or even anytime during that day, but what I've eaten the day before. You see, there are an extreme amount of variables related to food that affect my body and it's performance. I must consider:
- How do I feel the day before the activity
- What did I eat the day before the activity - best to eat something light and small
- Am I having a lot of stomach pain and cramping
- What time do I need to wake up in the morning in order to allow my stomach/bowel medicine to start to work
- Mustn't eat breakfast if it can be helped
- If my medicine still hasn't started working, I must weigh the benefit vs the harm of eating breakfast as sometimes breakfast will cause my medicine to kick in but other times it will make my bowel worse thus the debate
- Don't eat anything else until after the activity and drink very little fluids until afterwards
- Stand and walk as little as possible until activity has started
- Take sitting breaks as frequent and as long as possible during activity in order to prolong ability to participate in activity
If any of these variables come into play, the activity is frequently very difficult to participate in and enjoy.
I need to make a distinction, that my diet habits to help control my health issues and to feel good are not bound by the same diet recommendations of Crohn's and Ulcerative Colitis.
Those with Crohn's and UC frequently are recommended to following certain diet protocols as certain foods will increase or agitate inflammation causing symptoms to worsen.
For me, food in general is upsetting to my body. I feel my very best when I don't eat. When I don't eat I am not struck with stomach pain and cramps from eating or SBS issues. Only problems are that I really enjoy the taste of food and one must eat to survive.
So I try to eat light, non-greasy, small portion foods whenever possible as these do not upset my stomach and bowel as much as a heavy, large meal does.
I don't know if there is another that experiences the same issues with food in the same way as I do, although I imagine it is similar to Crohn's and UC flare ups. But either way, it makes the day very hard to plan.
Tuesday, May 15, 2012
For those of you that are new to the world of FAP, you must first understand the genetic disease.
Briefly, Familial Adenomatous Polyposis is a rare hereditary genetic mutation that predisposes an individual to colon cancer due to hundreds to thousands of precancerous polyps developing in the colon at an early age. Those with FAP develop significantly more polyps and at an earlier age than those without FAP. If the FAP polyps are not treated, the individual will inevitably develop colon or rectal cancer. Due to the dominant hereditary nature of FAP, the offspring of an affected individual has a 50% chance of inheriting FAP.
There are associated manifestations of FAP as well. These include:
- Congenital hypertrophy of retinal pigment epithelium (CHRPE)
- Osteomas, supernumerary teeth, odontomas
- Desmoids, epidermoid cysts
- Duodenal and other small bowel adenomas
- Gastric fundic gland polyps
- Increased Risk for Gastric Cancers and cancers of the Thyroid, Pancreas, Liver, Central Nervous System, and Bile Ducts
- Attenuated FAP is characterized by a significant risk for colon cancer but fewer colonic polyps (average of 30), more proximally located polyps, and diagnosis of colon cancer at a later age; management may be substantially different.
- Gardner syndrome is characterized by colonic polyposis typical of FAP together with osteomas and soft tissue tumors.
- Turcot syndrome is the association of colonic polyposis and central nervous system (CNS) tumors.
To learn more about Familial Adenomatous Polyposis visit these resources:
- Hereditary Colon Cancer Foundation Patient Guide to FAP
- National Organization for Rare Disorders FAP Report
- Medscape Familial Adenomatous Polyposis Report