Living with FAP: October 2012

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!

Friday, October 12, 2012

EGD with Gastro in Wilmington

Yesterday, I had a WILD, CRAZY, and EXCITING HOT DATE with my hubby who took me to Wilmington to have my 20+ endoscopy. I was hoping and praying that this new gastro would be able to remove ALL of the adenomatous polyps (pre-cancerous growths) that he saw in my stomach along with whatever else he might have found in my upper GI tract. HOWEVER, that was NOT the case.

Going into the EGD (a specific type of endoscope), I wasn’t too sure about having him as my doctor. He just didn’t give me any warm and fuzzy feeling at my first appointment and seemed to act like he knew better than I. Well, for this appointment, I had the added benefit of having my hubby with me to observe the interaction and give me feedback.
Going into the scope, I reminded him about Dr Brown’s concern regarding that 1 area in my stomach where tubular adenomas have recently turned up as well as the beginning signs of dysplasia. At this point, I don’t remember his response because the “happy juice” was kicking in. I think the nurse put the hard, plastic circle thingy in my mouth to start the scope.

I am very thankful that I was able to have that Handsome Man of Mine around as a witness for when I came to and was able to talk to the doctor about the scope. Matt said I had a very coherent conversation with the gastro. I pressed him for specific info about my area of concern as well as about previous problems with ulceration and swelling at my GJ (Gastro-Jejunum) anastamosis site (where Dr Cameron reconnect my stomach to my small intestines). Matt said when I brought it up, he blew me off and changed the subject. But, it seems that I was a persistent little patient because I kept bringing up the subject…even going so far as to pull out the 2-inch thick binder out to show him pictures from previous scopes. He finally told me that my stomach was just riddled with polyps and that whether they were hyperplastic (fake) or adenomatous (real…pre-cancerous) was beside the point because “there were too many of them” because my stomach “was carpeted with them” and that, regardless of the quantity, it didn’t really matter “because adenomas NEVER grow there” so he wasn’t really concerned about it. He wanted to move on to the next subject, but, evidently, I wouldn’t let it go because this is MY HEALTH and MY LIFE…NOT HIS. Matt said at this point, I became even more animated and tenacious as I strongly told him that it DOES happen because I have pathology reports to prove it for both me AND my 11yr old daughter. As I tried to show him the binder, he (the doctor) rolled his eyes at me and changed the subject.

Now that I'm home and have my memory back and am looking over my copies of the scope, he only gave me a total of 4 pictures...NONE of them are of my stomach at all. There's 1 of the esophagus (which is a non-issue), 2 of the jejunum, and 1 of the GJ anastamosis (which looked good this time). That's…it. NO shots of my stomach at all, whatsoever. I’ve been having an EGD at least once a year since 1994 (or maybe 1995), and I have NEVER not gotten pictures of my stomach…that includes the awful gastro that I saw in New Bern who told me I didn't need to be scoped at all but agreed to do it two times because I wasn't taking "no" for an answer. At least he gave me shots of my stomach & anastamosis site, AND, compared to the Wilmington doc, the New Bern doc was fabulous. His actions were unbelievable and so unprofessional! Guess who will NOT be going back to him. I know that there are lots of “bonuses” to living with FAP; HOWEVER, seeing a bad doctor is NOT one of them! Needless to say, I will NOT be going back to him…E-V-E-R!

I know I don't usually vent like this on here so I want to take a moment to say just how thankful I am for those who pray to the Lord for me...family and friends, but I am especially thankful today for my fellow sisters-in-Christ who went before the throne to pray to our Father on my behalf. I also want to say that I know that no matter the outcome, HE is in control, and He does have a plan. I’m especially thankful for the assurance I have of an eternity in Heaven with Him...along with a new, disease-free body.

Update: Sometimes, I never know how others see me or what God uses in me to speak to others. A fellow gutless brother who is really "triple family" because he is also the cousin of my BFF, Caroline, as well as my brother-in-Christ, posted the following on my FB wall: "Steph, You are Hupernikao--which is Hebrew for 'more than a conquerer' which is what YOU are, Strength and Honor, my friend." Well, often times, that is soooo NOT how I see myself. I am thankful for times like this when God gives me a glimpse of the potential He sees in me. I could not be silent about this issue if I wanted to, but reading stuff like this encourages me to keep sharing my story about living with FAP and to continue encouraging and helping others who are going through similar situations.

To God be the glory!

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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.