Living with FAP: A Post Just Because It's One of "Those" Days

Sunday, November 27, 2011

A Post Just Because It's One of "Those" Days

Living with FAP is definitely unusual. Most people who in the j-pouch groups on FB have pouches because of UC or Crohns so they went from having bad potty issues to better potty issues. The same thing with Whipple survivors...most had pancreatic cancer or other issues where those organs weren’t working so the Whipple improved things for them. When you have FAP, you go from no problems to lots of problems. Don’t get me wrong...I am thankful for the opportunity to be proactive and avoid cancer, but it’s a much harder transition when you go from normal to abnormal with the snap of the fingers (aka surgery) with no downward spiral.

I have definitely been de-gutted (several times) and Whippled (once) and think that while the Whipple was the easiest surgical recover (incision, etc), it was definitely the longest recovery (internal, emotional, etc). I cannot even imagine having to go thru chemo after this surgery...there is no way I’d have survived. Anyway, this Tuesday will be 4yrs since my Whipple and things are still adjusting. We homeschooled until after I had my Whipple. After that, I was barely able to focus on getting myself through the day so my hubby made the decision to put them in base school. That has been a blessing although I miss having them home with me and using every moment as a teachable moment.

Fatigue is definitely an issue. I go for Venofer infusions every 8wks. I was on oral iron capsules, but my body just wasn’t absorbing it so my gastro told me to stop taking it. I also have issues with delayed gastric emptying (DGE or gastroparesis) which is really strange since I no longer have a pyloric valve due to an adenomatous polyp in the duodenum right by the pyloric valve which caused the surgeon to remove that portion (5%) of my stomach. You would think that things would flow straight through, causing me to battle with gastric dumping, but it’s just the opposite...especially as the day goes along.

We had our kids (boy 12 and girl 10) DNA tested and found out that they both carry the gene which makes them the 4th generation in my family to have FAP. I’m 3rd generation and got it from my dad. He has 2 siblings with FAP and 1 without it. He inherited FAP from his mom who died of colon cancer. Our family’s history probably goes back even further than that in the generation count, but since medical technology wasn’t great in the early 1900s and before and since information like that wasn’t discussed in families back then, we don’t know who else died from colon cancer that would have been associated with FAP. Anyway, they’re both scheduled for their 1st scope on 12/15. I will be surprised if my oldest has no polyps and am even thinking that maybe my youngest will have them already. My hubby is a Marine and we’re due for orders next summer. I told him that the next house will have to have FOUR bathrooms if he ever expects to use a toilet without waiting in line!

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Eating with a J-pouch

OK, I am not a trained expert in the area of diet & nutrition; however, I do know what I have learned from experience. Most of your dietary adjustments will come from trial & error. When you eat something, pay attention to whether or not you have bathroom issues after eating it. If the item causes any problems, then avoid it next time, eat it in moderation, or just know that when you eat it, you can expect to spend a lot of time in the bathroom. Sometimes, it just depends on how much you want to eat something that will determine if it's worth the price you'll pay later.

Also, remember that everyone is different. Just because something works for me doesn't mean that it will work for you. I know people who say anyone with a j-pouch should stay away from nuts; however, I can eat them & have no problem.

Foods That May Cause Problems with a J-pouch

Chopped (frozen) spinach: It causes the same problems as shredded lettuce. It's weird because fresh raw spinach works like a charm.
Crushed pineapple: I don't know what it is, but I have to make sure I eat this in moderation.
Items high in fat like whole milk & Oreo cookies go through you very quickly & you'll be spending some extended time in the bathroom.
Lettuce, especially if it's shredded, causes lots of problems...maybe it's too much roughage. Raw fresh spinach is the perfect substitute because it causes a lot less problems & is healthier to eat!
Watermelon: It's just too fiberous & bulky. It's a shame too, because I really like watermelon & so do my children, but I don't get it very often because I just can't eat it (not even in moderation), & it's just too tempting when it's in the house.

Healing a Sore Bum

Colon surgery brings many changes…especially in the areas of diet and BMs. Depending on what you eat and how your adjusted plumbing reacts to various foods, you may be spending a lot of time in the bathroom which leads to a very sore bottom. This is due to frequency of going as well as to not having the colon available to absorb the digestive juices. Instead, the digestive juices (along with the rest of our output) come in direct contact with the skin on your bottom…skin that was not designed to handle the acid. In time, things will adjust and get better. Your body will handle foods better. You’ll learn which foods cause problems so you can avoid them. Your pouch will expand which will require fewer trips to the bathroom. Your small intestines will start to absorb some of the digestive juices. The skin around your bottom will also toughen up a little. Bottom line is that what you’re going through right now will not last forever. Don’t get me wrong…things will never be “normal” again, but they also won’t stay this “bad” forever.

If you're having an especially bad day (or days) & find yourself spending a lot of time in the bathroom, here are some tips to help with a sore bottom:

Peri-anal bottle: This is a squirt bottle usually given to women after having an episiotomy, but it’s also used for other things. If you had an ileostomy, you should have received one to empty out your bag. This is an important item to have readily available in the bathroom. Fill it with very, very warm water…as hot as you can handle on your skin. As you potty, use it to squirt the water onto your bottom in order to get the digestive acid off your bottom as soon as possible…BEFORE the “rage” begins.

Balneol: This is an over-the-counter peri-anal cleansing lotion that neutralizes the acid on your bottom. Even if you are using the peri-anal bottle to squirt as you go, some acid will remain on your skin, but Balneol neutralizes it. You can get Balneol from most drug stores (like Walgreens & CVS), but sometimes, you may have to ask for it at the pharmacy counter. Some places, like CVS, even have their own version of it for $1 cheaper than the name brand. Either one will do the trick. You can apply a drop or 2 to your TP after you are finished pottying and wipe it on your bottom to neutralize any acid that’s leftover from the peri-bottle. For more information, check it out at www.balneol.com.

Calmoseptine: You should also have a GOOD barrier cream. Calmoseptine works way better than using Desitin or even Boudreaux's Butt Paste (which is an amazing diaper rash ointment). It is camphor-based cream that works as both a healing agent as well as a barrier on your skin. It can be purchased in both a tube and a tub (I prefer the tub) and is available over-the-counter, but you may have to ask for it. I must admit that it’s a little on the expensive side but so well worth the price! You can learn more about it at www.calmoseptineointment.com.

Soft TP: I think this is pretty self-explanatory...your bottom will thank you for it.

Other helpful tips: In the beginning, you may want to air dry your bottom after using the bathroom…it will get very sore from chronic use. Another thing that helps is to soak in a tub of warm-hot water…as hot as you are able to sit in. When you’re done, you can also use a hair dryer on the cool setting to dry your skin. Once it’s dry, be sure to apply Calmoseptine to the skin.