Living with FAP: Post Scope Follow-up with Gastro at ECU

Wednesday, February 27, 2013

Post Scope Follow-up with Gastro at ECU

Today, I took the very long drive from Camp LeJeune to Greenville for a follow-up appointment with my gastro, Dr Kandil. I think I was the only patient he saw today…the office was totally empty. The other 2 times I’d been there, the waiting room was filled with people, and there was all kind of activity going on in the exam area. Today, it was a ghost town…except for the 2 receptionists and a couple of nurses walking the hallways. As usual, he gave me a friendly “hello” and a hand shake. Then, he got right down to business. He reviewed what we knew going into the last set of scopes, what was discovered during the scopes, the pathology reports, and the options. He reported that my Whipple procedure was done fabulously (there was no doubt about it since the #1 Whipple surgeon in the world, Dr John Cameron at Johns-Hopkins, did it) and that I actually have 2 different locations where my stomach empties (who knew?) and that these 2 locations meet up at the top of my small intestines. This made a lot of sense because I’d seen a picture of a scope where it looked like there were 2 tunnels, and I was scratching my head trying to figure out what I was looking at and eventually just blew it off. He also said that my j-pouch was gorgeous and that other than a few tubular adenomas (pre-cancerous polyps) that he needed to remove, it should last a long time. He also said that outside of the GJ-junction (where my stomach is reconnected to my small intestines) and my j-pouch, he found NO other adenomatous polyps. AND...he attributed the polyps at the GJ-junction to the stomach and not to the small intestines. THAT IS GREAT NEWS!! He also admitted that it’s rare to have a patient like me and that he’s at loss as to what to do because this is uncharted waters, and he doesn’t want to make a mistake because it’d be at the expense of my life.

So, these are basically the options available:

1. Remove all of my stomach with a gastrectomy and hook my small intestines straight to my esophagus

2. Remove a portion of my stomach…the section with the most adenomatous polyps

3. Wait until things get worse and try to do surgery before a malignancy develops

4. Commit to coming in once a month for an endoscopy in which he’ll take the time to start removing some of the polyps that are lining my stomach taking a section/area each month. The method used would be similar to uterine ablation but instead of using hot liquid in a balloon, he’d burn a small section with hot gas. The area would heal easily, and then, the next month, he’d do another section but also be able to check on the areas already done.

After thoroughly discussing these options and once again having him admit that he wasn’t sure which one to do because they each have pros and cons, he asked me what I thought. I acknowledged that none of the options would be 100% perfect, but that I’d really like to keep my stomach as long as possible…especially because it would be nice to enjoy eating. Since the current game plan involved scoping every 3 months to keep tabs on things until Matt got back, I figured we could use the time to see if his idea worked. I know it’ll be a pain to go there every month…I’ll need a driver and someone to cover the kids and the dog, etc, etc, etc; however, it is certainly worth a try. The worst thing that will happen is that I’ll have a gastrectomy once Matt gets back which is the current plan anyway. So I don’t see much of a chance to lose anything by at least trying. He said that when the polyps did grow back that hopefully there would be only a dozen or so at a time which is a small quantity to handle the removal of…even 100 wouldn’t be as bad as the wall-to-wall stuff I have now. (I eventually hope to scan my photos and share with you the freakishness of my stomach.)

He’s going in front of another tumor board to get their input on our game plan, but I already have a date for my next endoscopy which is Tuesday, March 12 at 0930. That should be perfect because I can get the kids on the bus before I have to leave. My friend Alina has volunteered to take me each month, but I’m going to see if I can get a couple more friends who can do it so that there can be a rotation of driving every 3-4 months instead of monthly.

We also talked about small intestine transplant. He said there’s no reason for me to have it done, but that he still wanted me to see the specialist so he was going to put in the referral. I asked a bunch of questions and found out that if I did have a gastrectomy, there would be no concern for esophageal reflux and acid because acid production is done in the stomach so once it’s removed, then the acid goes away. I also asked about stomach and colon transplants. He said that you can actually get your stomach all the way through your small intestines transplanted…pancreas, gall bladder, etc…all included. The stomach is removed right after the esophagus empties into it and the new one is attached in the same place. Now, while that sounds like it’d be a great option, there are some serious drawbacks. The first is that it is a transplant so the anti-rejection drugs would need to be taken for the rest of my life and all the precautions for avoiding infection would need to be a part of my life also. On top of that, even though the donor wouldn’t have FAP, once the organs are transplanted into my body, the FAP mutation would take over the new organs, and they, too, would start to grow adenomatous polyps. So, I’d be right back at square one which would result in eventually having organs removed again. (Wouldn’t that be something crazy to say...that I had a Whipple procedure twice or tmy pyloric valve removed twice or my gall bladder, etc? Yeah, once was enough...no thank you.) I’m glad it’s an “option” but am not really interested in it.

He also wants me to talk to their nutritionist…she has a doctorate…in order to help me make sure I’m eating as healthily as possible. That is something I’ve been wanting to do for a very long time…not sure when it’s going to happen, but I’m glad that it’s in the works.

So, that’s where things stand right now. I guess he’ll give me the input from the tumor board when I go for my endoscopy in 2 weeks.

Thanks for the continued prayers…I truly appreciate them.

Love & hugs,

Steph<><

1 comment:

Anonymous said...: Just started reading your blog, I too have F.A.P. Had my colon removed in 1999 when I was 24, had my Whipple in 2012. How are things going now?; August 8, 2016 at 7:42 AM

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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.