Living with FAP: Jane Wayne Day

Thursday, April 26, 2012

Jane Wayne Day

OK…this post has nothing to do with a procedure or a doctor’s appointment, but it does have a lot to do with living with FAP. Right now, TODAY, I am getting my Warrior Wife gear on to head out to TBS this morning where I will have the privilege of experiencing my FIRST ever Jane Wayne Day. I get to share it with some of the BEST Warrior Wives ever…Marianne Cecchini, Liz Boring, Ruthie Ruppert, and Teri Twigg! (I will be missing some of my other FAVORITE Warrior Wives who couldn’t join us: Emily Urquidez, Sherry Hietpas, Of course, it’s raining, but I can’t wait!!

Yes…it is really true…in all of the years that Matt has been in the Corps, this is really, truly my FIRST Jane Wayne Day EVER! There was a Jane Wayne Day during TBS, but I was pregnant with Cassidy and still recovering from j-pouch surgery. There was no way that I could picture myself going at that point in my life…too many uncontrolled variables for me.

At Heath's office waiting to get started on our adventure

POST JWD UPDATE: IT…WAS…A…BLAST!! What an experience! It was way more than a typical Jane Wayne Day because today was the LIVE trial run for tomorrow’s Marine Day where members of Congress come out to see what the Marine Corps does. There were a lot of extra things available to experience…way bigger than Jane Wayne, for sure. Now, after experiencing it, I have to admit that I do not envy my husband’s Marine Corps career…not one bit! All of that gear was H-E-A-V-Y!! If I could have shot the different guns and weapons without the bullet proof vest and heavy Kevlar helmet, it would have been a lot easier, but for (understandable) safety reasons, that was not allowed. It made for a very awkward experience. I do not know how those Marines do it!

Now, onto the living with FAP portion of this experience: There were LOTS of port-a-potties available, but I didn’t need to use one except to empty my bladder. YAY! What a success!! 11 years ago, I could not have even dreamed that a day like this would EVER happen to me. It was unfathomable that I could or even would go somewhere like this. All I can say is, “PRAISE THE LORD! Thank you for the improvements along the way and for bringing me to this place where I can enjoy myself on an outing like this.”

Mega thanks to Ruthie and her hubby, Heath, for taking photos for us. I ♥ these ladies and the Marine Corps!

Shooting a BIG gun

All geared up & ready to go

Warrior Wives with their guides at the end of the day

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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.