Living with FAP: February 2009

Thursday, February 26, 2009

Follow-up to Endocapsule

Well, evidently, even though the equipment showed that everything was working with the endo-capsule, it wasn't. The camera recorded for about 46 seconds before it stopped recording which means that when the nurse checked the equipment before I left & it showed that everything was in order, it really wasn't. I need to have the procedure done again but have to wait until the manufacturer sends a FREE replacement capsule...I'm certainly not going to have my insurance pay for the procedure twice when it was the manufacturer's equipment that was defective. Dr Brown's office said it may take a few months to get all of it straightened out.

Saturday, February 21, 2009

A Totally Unexpected SURPRISE!

My parents showed up at my house this afternoon...just out of the blue. Matthew was in on the whole thing. Evidently, since they've surprised my brothers with unexpected visits, they decided to do the same for me. I was absolutely floored. My neighbor Erica was in on it also...she was supposed to get me out of the house before they got here so Matthew could straighten up, but I was tired so I took a nap & told her that I'd meet her around 5pm. Around 4:30, there was a knock at the door. The kids went to answer it & just stood there not saying anything. I went over to see who it was & there was my mom & behind her was my dad. I was so confused & shocked...all I could say was, "What are you doing here?" They'll be in through Wednesday...the day after Mardi Gras. We're going to have a New Orleans party on Monday night complete with gumbo, jambalaya & king cake.

Tuesday, February 17, 2009

Task Force East

Matthew checks in as the XO (Executive Officer) of Task Force East (TFE) today. Only the main leadership is working right now. The Platoon Commanders check in in a few weeks. The rest of the guys check in sometime in March. They will be deploying to somewhere in the mid-East sometime this summer to do some unspecified job for the Marine Corps. (Don't you just love all the details? Yeah, me, too.) A year ago, I could not have fathomed his being deployed...I was still going through so much junk from the Whipple procedure. What a difference a year makes! I'm in New Orleans right now...yesterday was my mom's 60th birthday. Since I came in last year for my dad's, I wanted to do the same for my mom...I just wish it could have been a surprise. I am very glad that I can eat, because a year ago, I was still battling delayed gastric emptying (DGE).

Tuesday, February 10, 2009

Endocapsule

I had an appointment with Dr Brown this morning to do an endo-capsule swallow. He wanted to try this alternative to having a scope of my j-pouch because this would give him a picture of my small intestines as well as my j-pouch. I brought the kids to a friend's house, went to the appointment, got hooked up to the gear and swallowed the GINORMOUS capsule. The nurse made sure everything was in order & that the equipment was working and then off I went to live life as the camera goes through my system, taking pictures along the way. I returned around 4 to have all the equipment removed. The results should be back in about 2 weeks.

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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.