Living with FAP: April 2012

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

Thursday, April 19, 2012

Double Scopes for Me

My scopes went well today. The worst part of the whole day (besides not being able to eat) was the sore throat from the 30+ minutes of the endoscopy. I had no polyps in my j-pouch so I don’t need to repeat that one for another year. I had 10 adenomatous (pre-cancerous) polyps in stomach which were removed and sent for biopsy. The results will be ready in a couple of weeks.

Because of the adenomatous polyps in my stomach, Dr Brown recommended that I have a repeat endoscopy/EGD in 3-6 months. Since we’re moving this summer, I’ll have to wait until after the move and talk to the new doctor at LeJeune.

I was able to talk to him and got him to agree to doing an endoscopy on the kiddos when they go for their colonoscopy at the end of May. This will give us a baseline for each of them and also make sure there are no problems in that area yet. I know of a few people whose young children already have adenomatous polyps in the stomach and duodenum which is not good at all. I want to be smart and catch it early if they have it…it’s always best to be proactive with FAP!!!

Thanks for the prayers and thanks to Marianne for being my chauffeur today.

Wednesday, April 18, 2012

Kids Say the CRAZIEST Things

This morning, I reminded my kiddos that I was having both of my scopes tomorrow so I was having clear liquids today and wasn’t going to cook...leftovers for them. We proceeded to have yet another conversation on what constituted “clear liquids”. Of course, Caelan had to push the limits by asking if vodka was a clear liquid. I didn’t know if that would be allowable and wise, but he said that if it was, he would drink that for his next scope in May because it would help the prescription stuff he needs to drink go down better, AND it would make him goofy enough that he wouldn’t need to be sedated. [Ruthie Ruppert, how’s that for your “Crazy Boy”!!] Anyway, I’m thinking that if vodka is a clear liquid that maybe I could have a glass of wine for “dinner” tonight.

Facebook comment from my dear, sweet friend, Ruthie: “I need to have a talk with that boy and expose him to a wider range of “clear liquids...such as RUM!!! Cruzan Rum from US Virgin Islands for example, is a wonderful clear liquid. As I was reading your post I literally have wet eyes from cracking up! I can totally hear him! By the way, “Reis”ling for you prior to your next scope! Good luck today, friend. Wish you didn’t have to go through it but this experience does allow you to have a testimony to help others. You are a blessing to many. Prayers that you don’t have too much discomfort and the scoping goes well.”

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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.