Living with FAP: December 2012

Wednesday, December 12, 2012

Kids' Post-scopes Follow-up

Today, we were blessed to wake up before 6am in order to make the long drive to Greenville WITH Dad so he can meet the kids’ gastro (first appointment) and colon-rectal surgeon (2^nd appointment) AND get the results of their scopes back in October. This time, Dad got to drive, AND we managed to not even spot any deer along the way!

At both places, the nurse was only ready for 1 child even though both were on the schedule. When I asked about the other child, in both instances, the nurse looked confused before going to get the info on the 2^nd child. At the surgeon’s office, Matt was curious to know why this happened again. I’d already told him that it wasn’t normal for multiple children in a family to be facing colon surgery like this and the nurse agreed with my statement. Gotta love FAP, right? ;-) Anyway, both docs agreed to do both scopes again in a year…once Matt returns so he can help and not stick me with running back and forth between the kiddos. Both docs also agreed that (barring no problems) surgery can be held off for a few more years...I’m still hoping to do them at the same time. AND there’s a definite possibility of doing an IRA (not the retirement account but an ileo-rectal anastamosis) instead of a j-pouch. YAY! That’s another thing I ♥ about these 2 docs...neither discount my medical history and experience with FAP since the age of 12...gotta ♥ docs like that who recognize the difference between book knowledge and personal experience. I also found out that the colon surgeon knows the gastro I’m going to be seeing for a 2^nd opinion in January. The doc has a good rep and hopefully won’t blow me off like the other doc I saw in Wilmington.

Once again, the doctors and staff of ECU Physicians managed to AMAZE us!

Best part of the day for the hubby and kiddos? Getting to eat breakfast at Krispy Kreme in between the two appointments.

A Non-FAP Post to Celebrate Our Hero

WARNING...this is a LONG story that is not related to FAP at all, but sometimes, it's good to just share a story like this. We often say that it’s never a dull moment at the Reis house. We have one more story to support that statement as well as to show just how much WE ♥ OUR MARINE WHO BECAME A TRUE LIFE SAVER and HERO YESTERDAY!

Thanks to this crazy pre-dep exercise AND thanks to the military automatically switching to heat even though it’s been HOT here. My Handsome Warrior of Marines was in the right place at the right time and did the right thing for the right reason...a total GOD-thing. So, at 0-dark-30, he was in the admin office with all of the windows open (because of the heat being on in spite of the warm weather) when he heard a faint, strange noise. He went to investigate and found a young Marine (younger, taller and heavier than he) who had given up on life and decided to hang himself from the 2nd floor of his barrack’s balcony in the building next to Matt’s. Matt (all 5’6” and 150ish lbs of him) ran over and tried to lift the guy up to relieve the pressure from his neck while screaming for help. The duty came out and was instructed to go upstairs to pull the guy up. A couple more Marines came out to help the duty while another one was instructed to get Matt’s CO who is bigger and taller than Matt. Matt helped position the CO’s shoulders under the Marine’s feet and then ran upstairs to where the Marines were still trying to pull the guy up. Somehow, Matt reached way down over the railing, got a hold of the Marine and pulled him up and over the railing. (I do NOT want to know how he did this because from his description and that of the CO, it sounds like he had a huge portion of his body hanging down over the railing without anyone holding onto him.) He got the Marine on the ground, untied his makeshift noose, felt for signs of life (there were NONE) and administered CPR. He said it took about a minute or so before the guy responded. When the revived Marine realized what was going on, he wasn’t happy and tried to JUMP off the 2nd floor. Matt had to grab and restrain him. When the MPs showed up, he and the CO brought the guy downstairs with Matt still bear-hugging the guy who was getting very close to fighting him in order to run away, but the CO muscled up and stood in front of the guy as if to say, “Don’t mess with me!” Then, the MPs took over and brought the guy to the hospital for help.

Unbeknownst to him, Matt’s unit immediately started the award process for his heroism. His XO called me around 1130 to let me know that Matt had saved someone’s life (no other details were given) and that he was going to be awarded at 1330. A friend lent me her car. I hurried up and got the kids from school (after their fire drill was over...no checking kids out during a fire drill...again, NEVER a dull moment) and had to repeatedly say, “I don’t know” to all of their constant barrage of questions. When we arrived at the end of the Post and Relief Ceremony (his unit was switching its Sergeants Major) but before he saw us, he was told that after the Post and Relief Ceremony was over, he was to report front and center and that his wife and kids had arrived. He knew something was up but thought the CO was going to share what had happened. He had no idea that he was receiving an award (medal) for heroism. The CO recounted the whole story from his point-of-view which was the 1st time I'd heard the story. Since even though I'd spoken to my hubby earlier that morning, he hadn't said anything because he was still trying to process what had happened. Even after this, he was quite humble and simply said that he'd like to think that anyone would have done the same thing just because they were Marines.

Needless to say, we went out to dinner and celebrated our HERO. ♥

Here are some photos from the ceremony. Photos and captions are courtesy of the USMC. You can read more at http://www.dvidshub.net/image/800814/quick-decisive-action-saves-marines-life-camp-lejeune#.UT3vWxyThgs#ixzz2NF801hyZ.

Col Dwayne A Whiteside (center), the commanding officer of Combat Logistics Regiment 2, 2nd Marine Logistics Group, and Sgt Maj Lanette N Wright (right), the sergeant major of CLR-2, stand ready to present a Navy and Marine Corps Commendation Medal to Maj Matthew D Reis (left), the adjutant of CLR-2, during a ceremony December 11, 2012, aboard Camp LeJeune, NC. Reis received the award for his exceptional situational awareness and immediate action while responding to a disturbance at a nearby barracks

Col Dwayne A Whiteside (right), the commanding officer of Combat Logistics Regiment 2, 2nd Marine Logistics Group, pins a Navy and Marine Corps Commendation Medal on the chest of Maj Matthew D Reis, the adjutant of CLR-2, during a ceremony December 11, 2012, aboard Camp LeJeune, NC. Reis received the award for his exceptional situational awareness and immediate action while responding to a disturbance at a nearby barracks.

Col Dwayne A Whiteside (left), the commanding officer of Combat Logistics Regiment 2, 2nd Marine Logistics Group, shakes the hand of Maj Matthew D Reis, the adjutant of CLR-2, during a ceremony December 11, 2012, aboard Camp LeJeune, NC. Reis received the Navy and Marine Corps Commendation Medal for his exceptional situational awareness and immediate action while responding to a disturbance at a nearby barracks.

Col Dwayne A Whiteside (center), the commanding officer of Combat Logistics Regiment 2, 2nd Marine Logistics Group, talks to the Marines and sailors of CLR-2 during an award ceremony aboard Camp LeJeune, N.C., December 11, 2012. Early in the morning, Maj Matthew D Reis (right), the adjutant of CLR-2, responded to a disturbance at a nearby barracks, which resulted in Reis saving the life of another Marine.

Maj Matthew D Reis, the adjutant of Combat Logistics Regiment 2, 2nd Marine Logistics Group, listens during a ceremony aboard Camp LeJeune, NC, December 11, 2012, as the commanding officer talks about the disturbance Reis responded to early in the morning. Reis received the Navy and Marine Corps Commendation Medal for his actions.

Maj Matthew D Reis, the adjutant of Combat Logistics Regiment 2, 2nd Marine Logistics Group, speaks to the Marines and sailors of CLR-2 after an award ceremony aboard Camp LeJeune, NC, December 11, 2012. Reis received the Navy and Marine Corps Commendation Medal for his exceptional situational awareness and immediate action while responding to a disturbance at a nearby barracks.

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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.