Living with FAP

Tuesday, May 7, 2013

Office Visit 05/07/2013

I had a follow up (in between scopes) appointment with Dr Kandil today. I have to admit that the drive to Greenville is LONG...2 hours each way for a 10 minute appointment, but Dr Kandil is amazing! He is concerned about ME and how to treat ME. I have NEVER had a gastro examine me so thoroughly...I have no idea what he's looking for or what he expects to find, but he checks my pulse points in my feet, my neck, etc; he feels for lumps under my skin (prone to cysts and bone tumors due to FAP/Gardner's); he listens to my stomach, heart, and lungs; pokes and prods my abdomen. We talk about the uniqueness of having FAP and how doctors sometimes just don't know what to do with cases like mine because as 1st and 2nd generation survivors, we're creating a new frontier and changing what was previously known about FAP...all in the space of 10 minutes.

At the end of today's appointment, he decided that he was more concerned about the formation of adenomatous polyps in my j-pouch. He said that the adenomatous polyps in my stomach are pretty much contained to a certain area that he's keeping track of to make sure that they don't spread from that area in a short period of time or that they grow in size too quickly. He'd like to repeat the endoscopy in 3 or 4 months but really wants to re-scope my j-pouch. Right now, it's scheduled for the first week of June...before the kids get out of school and before we do any traveling this summer.

There is still uncertainty as to whether or not I'll have my stomach removed sometime in the next year, but as long as the adenomatous polyps are contained, Dr Kandil is in support of waiting as long as possible to do it. He's glad that the ball is rolling for me to be seen by the small bowel transplant surgeon at Duke...just to talk about my case and what's involved in having some small intestines added to my system for IF and WHEN it is needed in my future. Thanks to FaceBook, I already know TWO ladies who have had it done...that is what does make technology amazing...all because of God who is awesome!

Thanks for your continued support and prayers.

Tuesday, March 12, 2013

Operation Save My Stomach--Scope #1

Today was the 1st in what I thought was going to be a series of monthly endoscopies (EGDs) over an unknown period of time to help me keep my stomach for as long as possible. I had hoped to have a better idea of the time frame...like 6 or 12 or 18 months after today's procedure, but I do not. What I do know is that the game plan has changed…again, & I’m fine with that. Dr Kandil has spent a lot of time talking to others to get their input as well as doing additional research. In the process, he has realized that while I do have a lot of polyps (both real and fake), all results so far have come back without any cause for suspicion, and the area of real polyps is small. So, basically, the situation isn’t really as dire as he previously thought and doesn’t warrant doing something as drastic as scoping me each month. Just going under anesthesia each month presents a challenge. On top of that, “burning” areas of my stomach will only remove the polyps from the surface of my stomach, but it will not actually get the roots which means that traces of the adenoma will be left behind via the roots. On the other hand, going in and removing a bunch of them for biopsy will remove the roots, but he won’t be able to cover as large of an area. Another thing he learned is that while I do have some adenomatous polyps which do have a 100% chance of turning malignant in time, the time over which that happens is a lot longer than other areas of the GI tract like the colon & duodenum which are already removed in me.

So, I’ll go back in 6 weeks for a follow-up to see if he’s found anything new to try as well as to get the biopsy results. Of course, he will call sooner than that if anything unexpected is found in the report. Then, I’ll have another scope done 3 months from now with the plan to continue doing this for as long as possible.

Thanks to Linnea Ransom (my chauffeur) and Robin Cooper (potty break for Brownie), Thanks also to you for reading this blog and for your continued prayer and support as I continue to live my life on this journey of living with FAP.

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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.