Living with FAP: March 2008

Monday, March 10, 2008

Post Retreat Update

I’ve had quite a few emails asking about my retreat up to White Sulfur Springs. I’m sorry to say that it was primarily uneventful…no instant healing or snap back to reality. I felt quite out of place knowing only 2 of the 30+ women that were there. I am not the social butterfly that my husband is (opposites attract) plus the fact that I was severely depressed…it’s very hard to talk & socialize when you’re sad & numb inside. The ladies were very nice. I did have some fun. It snowed on our way up there…it was very beautiful. On Saturday, I got to play some games with some of the ladies while others climbed the indoor rock-wall & sledded down the hill (they tried talking me into going, but I just didn't feel like it). After awhile, some of the wives my age joined us in the games.

Eating was very hard. Some of the meals weren’t the best choice for me…I didn’t think of that possibility at all, but I made the most of it. I even won 2 prizes because I didn’t eat any of the chocolate cake.

The speaker was good & friendly (she ran into me at the commissary on Friday & recognized me & stopped to talk). I needed to hear her message about keeping my focus on Jesus. I guess I just had some unrealistic expectations. Somewhere during the ride home, things chilled out a little inside of me. Matt says that he can tell I am getting better & not as irritable…just without any pep & he misses my pep. I start my weekly iron IV infusions tomorrow so I am quite concerned that this will add to the sluggishness of my small intestines. I just wish the docs could find a combination of medications that would work…it’s hard to eat when you already feel full & I don’t want to go back on TPN.

So, anyway, I am home & happier than I was before the retreat. Please just continue to pray for me.

Love,
Stephanie<><

Just Another Recovery Update

Hello, All…

Well, I thought I was on the road to recovery, but evidently, I’m still sitting in the parking lot. My hunger and appetite have not returned. My stomach is working a lot better; however, my small intestines are now quite sluggish. I am on 2 different prescriptions to try to get things moving. It is quite frustrating and discouraging to want to get better & heal but to have things happen that are out of your hands. My weight is fluctuating again and has dropped a few pounds. I am trying to drink Ensure and Carnation Instant Breakfast in addition to eating, but when things are not going anywhere, it’s not always easy to fill up.

Also, because of the surgery, my iron absorption is low. I start weekly iron IV infusions at Potomac Hospital to see if that helps bring my levels back up. I am very concerned that the iron IV will add to my sluggish small intestines.

Please continue to pray for my appetite to return and for my full healing. Also pray that I will not be distressed or discouraged by the situation and will be able to give God all the glory along the way.

The kids are doing fine in their school environments. They have adjusted very well and enjoy playing with their classmates. I miss having them at home terribly; however, it is nice to run errands or go to the doctor without them in tow.

Thank you for your continued prayers.
Stephanie

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.