Living with FAP: Initial Visit with Dr John Cameron

Wednesday, October 31, 2007

Initial Visit with Dr John Cameron

Well, after a lot of insurance/doctor chaos yesterday, the referral to see Dr Cameron went through around 11am this morning while I was waiting to have the CAT scan done. It’s amazing that Tricare approved Dr Cameron’s request for the CAT scan even though they hadn’t approved my visit to him…sometimes, insurance companies make no sense. (For those of you who were aware of the situation and prayed, thanks so much. I was blessed by the Lord’s peace.)

Anyway, Matt and I left around 7:15 am and got there just before 10am. Traffic wasn’t too bad for DC rush hour; however, in some spots, it was just ridiculous.

Dr Cameron said that the mass isn’t dangerous right now and doesn’t even show up on the CAT scan b/c it’s flat. He explained the Whipple procedure and how there’s really no such thing as just resectioning the duodenal area which is about 1 foot long. Usually, the very beginning of the duodenum is left attached to the stomach and with the removal starting right above the bile and pancreatic ducts through to the end of the duodenum. He said that in my case b/c of the location of the mass at the beginning of the duodenum right after the stomach empties into it, he would have to remove 15% of my stomach (most people’s stomachs are 2 times the size actually needed), my whole gall bladder (he said that once the valve is removed, there is nothing to stop infection from entering the gall bladder and stones start forming in about 4 months and the whole thing has to be removed anyway), a small portion of the pancreas where the pancreatic duct attaches to the duodenum (I guess there’s no valve-system to worry about) and the whole duodenum (not able to save any of it even though only a portion of it is the problem).

He advised us of my 2 options:

to have the surgery now
to have endoscopies of the area every 6mos w/ biopsies of the area to check for changes in malignancy and then do surgery when it turns malignant

His own personal recommendation is to have the surgery…no use in putting off the inevitable and risking cancer (and chemo); however, he advised us to talk to my doctor. Dr Brown is supposed to call me Friday morning to talk about it. It was Dr Brown’s recommendation that I see Dr Cameron to talk about the procedure so I’m sure he’s going to advise me to have the surgery. It will probably be scheduled sometime after Thanksgiving.

We discussed length of surgery and recovery time. Since I am small and thin w/o a lot of abdominal fat, the surgery will only be 4½hrs (instead of 5½hrs). There will be a mandatory 8-day stay in the hospital. Then b/c of the distance from Quantico to Baltimore, I’ll be required to stay in Baltimore (I guess at a hotel) for 4-5 days when I go for a follow-up appointment. If all is well at that time, I’ll be allowed to return back to Quantico. He also said that I’ll have no dietary restrictions…just to use wisdom and avoid anything that may cause discomfort or problems…he really didn’t expect it to be an issue. I wouldn’t require any medication for diabetes either since I’ll be keeping most of my pancreas, and I’m not a borderline diabetic. His only real concern was my ability to maintain my weight. I figure I don’t really have a choice…the surgery needs to happen before it turns malignant…either way, I’ll eventually have to see how my body responds to having a slightly smaller stomach…hopefully, in time, it’ll stretch out some. I am trusting God to take care of me andthis whole situation…His hand is obviously upon it. I’d be foolish to say “no”.

So, basically, I’m looking at about a 2 wk stay in Baltimore away from Matt and the kids. Matt will do what he can so he can stay with me right after the surgery and then throughout the week. Of course, there are concerns about taking care of the kids at home and me at the hospital and then the hotel (it’s not like I’ll be ready to run around and get my own food or anything like that). I’m trusting the Lord to work that out as well.

Thank you all for your continued prayers and emails/phone calls with encouragement and support. Also, for those of you who wrote to say that you’re praying even though you haven’t responded to the emails, don’t worry…I know you’re praying and appreciate your prayers.

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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.