Living with FAP: Kids' Scopes at ECU

Tuesday, October 23, 2012

Kids' Scopes at ECU

After spending most of the day yesterday introducing the kiddos to Go-lytely which is anything but going lightly, we all survived their nasty tasting experience. This morning at Zero-dark-thirty, the kids and I went to Greenville because their double scopes were scheduled with their new peds gastro, Dr Folashade Jose (pronounced like “Jo-say”) and the colon-rectal surgeon, Dr Mark Manwaring. Dr Jose wanted him present so that he could also have a good 1^st hand view of what’s going on in their guts with FAP.

Since Matt was busy with more pre-deployment work ups, I got to go solo. Well, on the way to Greenville at 0400, something happened to me that I managed to avoid both times in Quantico (6mos and 5yrs) and 3yrs in Cherry Point. I was coming around a bend in the road on 258. It was dark and slightly foggy…well, because it was 0400 in the morning and it’s supposed to be dark. Anyway, I saw the outline of an adult deer so I slowed down to give it a chance to finish crossing, but then, out of nowhere, her baby came running across after her and ran right into my van!! It was such a dark 2-laned section of the trip that I didn’t even stop to inspect our car…I was concerned that someone might come behind us and accidently hit the van. My heart was so heavy for that poor baby deer, and I certainly did NOT tell my Squirrelly Girly about what happened…thankfully, she was watching a movie on DVD. I kept praying and asking the Lord to let that poor baby deer survive unscathed. Amazingly, there was no damage to the van, and when we were coming back, we didn't see a deer carcass on the road so hopefully that means the deer was OK and not hurt.

We arrived at the Women and Children portion of Vidant Medical Center in one piece and without anyone having to stop for a potty break along the way. I was thankful that the fabulous staff gave the kids beds next to one another in pre-op so I didn’t have to split my time running back and forth between them. I’m also so thankful for my friend, Jodi Schlather, who made the 2-hour trip to Greenville to help me for an hour or so when I had 1 in pre-op and the other in post-op, and then she turned around to make the 2-hour trip back to Jax. Now, THAT is a dedicated friend and such a BLESSING to have her as my Sister-in-the-Lord AND -the-Corps!

This portion of Vidant Medical Center was AH-MAY-ZING! The staff was phenomenal. The kids not only SURVIVED their colonoscopy prep yesterday but they also survived their IVs, anesthesia and both scopes today! They were amazing sports and such troopers. The medical staff was giving them complements galore…especially since there are, evidently, adults who do not do as well as my 2 did! This should make them set for at least a year before having to repeat this experience and at least 2 yrs before having any type of surgery. YAY!

We made the long trip back home…after getting them some real food and making several potty stops on the way home. They were both tucked in bed by 7:30, and I'm getting ready to go to bed now so we can all recover from sleep deprivation.

They are scheduled for a follow up with Dr Manwaring and also Dr Jose in 6 weeks…and Dad will be joining us so he can FINALLY meet their fabulous docs!

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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.