Living with FAP: Update for Saturday 02/16

Saturday, February 16, 2008

Update for Saturday 02/16

My PCM changed my meds, & I’ve slept all night long the last 2 nights…I feel like a new woman! It’s amazing what more than 4 hours of sleep can do for you. I had a busy day yesterday volunteering in Cassidy’s class for a little over an hour, getting my haircut (best one in years!) & shopping for the kids & Nolan (my new nephew).

I go back to Dr Cameron in Baltimore on Monday…what a way to spend Matt’s day off. The Goodings are taking the kids for the day so we don’t have to take them with us (Praise the Lord!). I have an upper GI (drinking chalk/barium) at 11 to test my stomach’s emptying & then my appointment with the doc is at 2pm. My stomach is emptying properly as far as I can tell. I’m eating & drinking a lot more than I was, but I don’t get hungry b/c of the TPN…my body is getting all it needs via IV so it doesn’t feel the need to be hungry. (So, basically when I eat, it's b/c I'm forcing myself to eat...I have no desire to do so.) Please pray that it empties the way Dr Cameron wants it to so I can get off the TPN, return to a normal diet & get my PICC line removed (& take a REAL shower).

The kids are doing fine in school & may attend next year as well. Caelan is receiving about an hour & 15 min each day of special ed services to help him catch up with his academic delays. Cassidy is learning to be patient, wait & take turns. She enjoys going to art classes. It’s certainly easier on me not teaching 2 kids reading & phonics. I am happy that they’re doing just fine in their new environment.

Also, for those of you who are family or family-friends & haven’t heard. Michael & Kim officially became parents on the 13th. Nolan Michael Pertuit was born via c-section. He weighed in at 8lbs 6.5ozs & about 20” long. Both sets of grandparents are in Dallas right now enjoying the precious new bundle of joy. All are doing just fine & should get to go home tomorrow. Michael created a web-page complete with pix that you can check out a www.pertuit.org. More pix are in the gallery at www.pertuit.org/pics/index.php. You should check out the new parents…they’re so cute!

Anyway, thanks for your prayers & encouragement. I pray that all is well with you & yours.

Love,
Stephanie<><

One last note: Happy Birthday, Mom!

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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.