Living with FAP: Update

Sunday, January 27, 2008

Update

I’ve been getting a lot of emails and questions about how I’m doing so I thought I post another update.

I think things are finally starting to move along. I can eat food portions the size of a plum and hear my tummy rumble a couple of hours later. I’m still hesitant to eat more than that. I’ve tried chicken, beef, different casseroles and guacamole (avocados are easy to digest). I’ve also had ½ a pb and j sandwich (yeah!). I’m up to and maintaining 107 lbs (with the continued help of TPN).
I’m still having bouts of cramps although it’s not as often.
I’m also having trouble sleeping. I can fall asleep just fine, but once I wake up, it’s hard to get back to sleep…the TPN pump is just too loud at 3am! Please pray that I sleep until 5:30am each night (or should I say morning).
I’m still experiencing shortened attention span. I’m also pretty impatient & bored (especially with the kids gone). I have a couple of typing projects to do which are usually right up my alley & feel like doing neither of them. I’ve been convicted by the Lord to be content with my position right now b/c He is in control & has me just where He wants me. Please pray that I stop wishing things were “normal” and that I see Him through this all.
My daddy is doing well…still tired and moody at times, but eating up a storm…especially ice cream since he’s not so sensitive to cold stuff. He goes for some type of scan in a week or so.
The kids are doing well in school. I met with Caelan’s CSC team to develop his IEP (individualized educational program); he qualifies for an hour of help/day. I can’t wait for them to get started & see some results. He may also be evaluated by the new OT (occupational therapist) at the school. Matt went to the school for Caelan’s birthday to have lunch & was impressed to see how calm Caelan is in class (without being drugged as was suggested by a well respected doctor)…there’s no way he could have ADHD. The developmental pediatrician was not happy with any hints of opposition on our part…“medicate, medicate, medicate”. I’m glad we chose not to. We may go for a 2nd opinion this summer.

Thanks for your continued prayers and support.

Love
Stephanie<><

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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.