Living with FAP: May 2012

Wednesday, May 30, 2012

Kids' Double Scopes at Potomac Sentara

Pre-scope post: We're getting ready to go for scopes squared, squared (endo and colon for the 1st "squared" on both of my kiddos for the 2nd "squared"). These 2 will have a very LONG ROAD ahead of them because they're already "burned out on Jell-o!" Poor guys...I know that feeling, but I didn't get it after 2 rounds of having to eat it instead of regular food. I’m hungry for them.

Post-scope post: We found out in October that they BOTH have the same pre-cancerous colon disease that I have. They had an initial colonoscopy in December so the doc wanted to do another one in 6mos for a comparison, and then we decided to add the endoscopy as well in order to have a baseline on the polyps at both ends. I'll get the biopsy results at a follow up appointment when we'll also discuss all aspects of today's findings...especially Dr Brown and Matthew are interested in trying to put off colon removal as long as possible for them. They both did fabulously well. I am thankful for all the love and prayers.

Tuesday, May 29, 2012

Prep-Day for Kids' Scopes

Today was the colonoscopy prep day for both kids. I had a lot of “fun” reminding them about the medical definition of “clear liquids” and then making them drink the “junk”. Thankfully, they had "Suprep" which is only 8ozs tonight and 8ozs tomorrow morning, taken in 2 oz increments...AND we could mix it with thawed freeze pops for flavoring as long as what was used didn't have red or blue in them.

This was so "crazy", too because it reminded me of when I was 12 and received my first colonoscopy. There was no junk to drink back then...not Suprep and especially not "Go-lyely" (which makes you go anyway BUT lightly). In the space of a few weeks, I had a rigid sigmoidoscopy in my doc's office, a barium enema at a lab, and then finally a colonoscopy. I remember having to take clear liquids for THREE days for each of these...plus when I had my colon surgery. I survived it all...especially the barium enema series which required me to drink that chalky stuff in addition to having it added in at the other end. Somewhere along the line, I also remember drinking a bottle of magnesium citrate for something, too. YUCK!! Thankfully, it wasn’t until after Matt and I were married that I got to experience Go-lytely, and since I already had most of my colon removed by then, I had to drink less than 1/2 of it which was bad enough...but I did survive.

They had a combined total of 16ozs of bowel-emptying liquid to drink, and now, they're DONE! AND despite some initial drama about drinking it, none if has come back up...well, at least not yet. Now, we get to repeat this step at 5am. My poor kiddos...I cannot imagine being woken up at such an early hour to drink this stuff...but at least it smells better than some of the junk I had to drink when I was their ages.

As of right now, I can honestly say that my kids are not full of xxit AND that for the first time in a LONG while, my #2's #s does not stink! Now that may be a little bit TMI, but I have learned that this is all just a part of life so either you take what you have and go with it and live it to the full or you give up living which means you might as well be dead. Now, while living a “gutless life” isn’t always fun or easy, I am blessed to be alive and to have avoided gastrointestinal cancer so far. I’m also thankful for continued advances in medical technology that will enable my kids to have it even easier than I did.

Anyway, tomorrow will be their 2nd round for colonoscopies (their 1st was back in December when they didn’t need to drink any junk) but only their 1st for endoscopy. This will give us and Dr Brown a chance to compare their base line scopes to the one today and will establish a baseline for the upper.

So for anyone who's reading this, I appreciate your prayers and encouragement because I know that WE will ALL NEED it at FIVE-AM when they need to wake up and drinking the 2nd dose of stuff...hopefully, they won't have to drink much because they already have clear returns.

As my old colon-rectal surgeon used to say, "Bottoms up & say 'Ahhh!'"

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.