Living with FAP: Update from doctor's appointment

Friday, October 26, 2007

Update from doctor's appointment

I saw Dr Brown (the gastro) today. He is referring me Dr John Cameron at Johns Hopkins. In fact, Dr Brown’s office just called to give me the phone # & said he’s already talked to Dr Cameron, & he’s waiting for my call…of course, since it’s lunch time, the office is closed. Anyway, the mass is basically on 1 side of the duodenum (the place where your stomach empties into your small intestines). The duodenum is where chemical digestion takes place…it’s where food is broken down so it can be absorbed by the rest of your small intestines. It seems that I’m going to be losing most of that area. The process is called a Whipple procedure/bypass. The size of the mass & where it stops is what will affect the surgery. If it stops before the bile & pancreatic ducts plug into the duodenum, then less reconstruction of the area will be needed. If it happens after, then either they’ll remove the gall bladder &/or pancreas or have to redesign where they plug into my body. If that happens, the surgery takes about 8-9 hours (YIKES!!).

I asked Dr Brown about the calcification of the pancreas & the other stuff that brought me to the hospital. He wasn’t sure what was causing all of that but thought that Dr Cameron could take care of it while he was in there. Please pray for wisdom & an accurate diagnosis by Dr Cameron so all of this stuff can be FIXED & HEALED. Basically, Dr Brown did say that if I hadn’t gone in with this undiagnosed issue, the ulcerated mass would have been malignant by the time I got my scope in January. So, praise God for the unexplained pain.

Anyway, Dr Brown suspects that Dr Cameron will want to see me & do his own evaluation/testing so I probably won’t have surgery for another 2-3 weeks…right around Thanksgiving. Recovery time will depend on what actually happens in the OR as well as how long it takes for my system to adjust & start working. Based on several past experiences, that could be 2-3 weeks. (I am praying that the Lord intervenes & causes everything to work quickly & smoothly…but then again, I pray that His will be done & accepted.)

On another note, I learned a lesson the hard way. I didn’t take the Zantac last night before going to bed…I felt “fine” & thought I didn’t really need it. (You know…like maybe it was in my head.) Well, Caelan woke me up at 3am to ask me if I thought his daddy could tuck him back in bed (he didn’t want to wake me up & get me out of bed…I guess to him it’s just better to wake me up & leave me in bed while Matt tucks him in…go figure). Anyway, I immediately realized I was in pain so I took the meds & managed to pass out again in spite of the pain. When I got up at 6am, the pain was gone. I don’t plan on repeating this lesson a 2nd time!

Thank you for your continued prayer, support, phone calls & emails of encouragement.

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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.