Living with FAP: Consult with Oncologist/GI Surgeon

Monday, February 11, 2013

Consult with Oncologist/GI Surgeon

OK...this is the latest (detailed) update in the never ending saga of living with FAP: I met with the oncologist/GI surgeon (Dr Vohra) at ECU & have to say that I...love...her! She treated me like I was a human & not another “case”. She even told the medical student that I probably knew more than she (the oncologist) did about FAP/Gardner's Syndrome. She was amazed at my many GI (gastrointestinal) surgeries that I've had because it’s common for a doctor to see patients with just 1 of them but not 1 patient with all of them (subtotal colectomy with IRA, a resection, total removal with a j-pouch & temporary ileostomy & a Whipple)…I even got to show her my scar. LOL

Anyway, Dr Vohra gave me the biopsy results from my scopes (upper & lower) 2wks ago which showed that while I had NO malignancies, I definitely have adenomatous (pre-cancerous) polyps in my stomach, in the upper portion of my small intestines (where my duodenum used to be), AND in the lower portion of my small intestines (where my colon used to be). (So much for that other gastroenterologist in Wilmington with his very dismissive “that doesn't happen” attitude.)

I also got an education in how the GI tract was designed to work. Since I lost my pyloric valve in the Whipple procedure, if food backs up in my small intestines, there’s nothing to prevent it from going back into my stomach or just staying in my stomach before emptying (Delayed Gastric Emptying or DGE). She explained that while the stomach produces digestive juices, it’s not intended to have food in it on a long-term basis as the small intestines were designed to do. This especially explains the continual problem I’m having with inflammation & ulceration at the anastamosis site which is where Dr Cameron connected my jejunum (portion of the small intestines after the duodenum which was removed during the Whipple) to my stomach (ie…gastro-jejunum anastamosis). This continues to happen off & on regardless of the super-duper meds that I take to suppress gastric juices. It’s also 1 of the reasons why there’s a high chance of malignancy at this site…things just aren't meant to come in contact with stomach tissue like that.

Then, we had a discussion about various options including close monitoring through scopes or surgery & of course, which type & when. She said that determining a treatment plan for me would not be an easy decision to make because of the fine line between putting off surgery for as long as possible (because the cycle will just repeat itself) & getting it done before a malignancy develops. Another possibility is just resectioning the anastamosis site because that would delay the need to have a repeat Whipple…just like before when all of the stuff that plugs into the duodenum was disconnected from the duodenum & then reconnected to the jejunum except this time, it’d all be disconnected from the jejunum & the reconnected to the next part down. It’d be just as serious & dangerous as the 1^st Whipple, & I definitely do not want to repeat that again. Wow…who knew that I could be Whippled twice? Not me & I hope that I don't have to, either!

She will call my gastro from NOVA (Dr Brown) as well as my current gastro at ECU (Dr Kandil) to get their input. She will also present my case before the “Tumor Board” that meets every Friday morning in order to get additional input. She said that she probably wouldn't present it this week because she wants a fair amount of time to present the case so that the facts don’t get rushed through & end up with a hasty decision.

As of now, she is also inclined to recommend that I have an endoscopy every 3 months (sooner if additional issues arise) & a colonoscopy of my non-existing colon every 6 months. She suggests that I have an outline tattooed around the “troubled” portion of my stomach so that it’s easily identified in follow up endoscopes. Tattooing this area will also help to determine if the adenomas are spreading or if they’re staying isolated in that one area. Have you ever heard the term “Never say, ‘Never’”? Well, for those of you who know me well, I’m quite content to be tattoo-free & NEVER want to get one…that’s the need for me to rebel against what everyone’s doing just because “everyone’s” doing it…I’d much rather be an individual. Well, I find hilarity in the idea that I just might be getting a tattoo after all…even if it’s on the inside where no one else can see. It’s definitely a reminder that God is in control & that He has a sense of humor. I will be placed in yet another rare group of those with an internal tattoo, AND I’ll be able to honestly say that I have a tattoo where the sun doesn't shine. ;-)

When it’s determined that surgery can be put off no longer, she suggests only removing the troublesome portion of my stomach & nothing else but also advises that I should be prepared for the worst just in case something happens during surgery which results in having all of my stomach removed which is always a possibility when performing any type of stomach surgery.

Finally, she agreed with Dr Kandil’s suggestion that I meet with a small bowel transplant surgeon in the Raleigh area because there is a very strong possibility that I will need this in the future to prevent short-gut syndrome.

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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.