Living with FAP: January 2013

Wednesday, January 30, 2013

First Round of Scope swith Dr Kandil

Yesterday, I had a double scope with my new gastro, Dr Hassam Kandil. In the last 2 years, I’ve had a polyp grow at the base of my anus (not actually IN the pouch because the anus is still part of the colon), and I’ve had some real (instead of hyperplastic or fake) ones growing in my stomach. Because of this, he wanted to go as far down into the small bowel with the EGD and as far up into the small intestines in the other direction with the colonoscopy to make sure no adenomatous polyps were growing in the small bowel. I was not prepared for what he showed me after they were done. Here’s what was found:

1. It appears that the adenomatous (real…pre-cancerous) polyps in my stomach are growing and increasing in number. They look very differently from the hyperplastic (fake) polyps that have been growing in my stomach for the past 18+ years. Of course, we’ll have to wait for biopsy results to confirm the exact type of polyps these are.

2. I also have what appear to be adenomatous (real) polyps at my GJ anastamosis (gastrojejunostomy...basically where my stomach and small intestines were reconnected during the Whipple procedure). The adenomatous polyps are on the stomach side of the anastamosis (not on the small intestines side), and I’ve had issues with inflammation and ulceration at this location before. Again, we’ll have to wait for biopsy results to get confirmation.

3. He found several small polyps in my j-pouch which appear to be hyperplastic. Once more, biopsy results will confirm if this is true.

4. The good news is that no polyps were found in the rest of the small intestines that he was able to reach.

He wanted me to schedule a follow up appointment in 2 weeks to discuss the biopsy results. Based on what he saw; however, he was going to put in a referral for me to see a surgeon about the possibility of having that portion of my stomach removed. This morning, when I called to make my follow up appointment, I was told that he didn’t have an opening until the 27th of February. His nurse said that he was fine with not seeing me until then because he’d already set up an appointment on the 11th with an Oncologist/GI surgeon to talk about the next step. His nurse also said that if any of the biopsy results were to come back with unexpected info, I would definitely get a call from him before then. Either way, all of the records will be in the system for the surgeon to see.

SIGH…often times, living with FAP seems to be a never-ending, uphill battle...like always getting the short end of the stick. It is rarely a dull moment.

BTW...MEGA THANKS to my fellow Warrior Wives, Alina, Jodi and Megan for taking me (Alina), keeping my kids overnight (Jodi) & letting the dog out (Megan). I appreciate it so much!

Wednesday, January 23, 2013

Second Opinion with a NEW Gastro at ECU

Today, I took the trip to Greenville to meet another gastroenterologist. His name is Dr Hossam Kandil. He's from Egypt and has the lightest blue eyes I've ever seen. They are just gorgeous and in such stark contrast to his olive-complected skin. Anyway, I met him and think he will be a great doctor for me. He knows a lot about FAP but conceded that I probably knew more than he did. He listened to my medical history and my concerns. He did a physical exam which I think was probably the most in depth one any gastro has ever done on me...even Dr Hoang (UNTHSC in TX) and Dr Brown (QVA). Of course, any type of exam would have been more than the doctor in Wilmington who didn't even poke me or listen to my heart beat.

Dr Kandil wants to repeat both scopes...he's not willing to go off of the previous gastro's scope in October. I have an appointment scheduled for next week and will need to make arrangements for the kiddos and dog...and of course, a chauffeur for me.

He also recommended that I see a small bowel transplant surgeon just because that is something that may be necessary in my future, and he'd like me to be as informed as possible for whenever the need arises...proactive planning instead of reacting to the situation.

He also knows the kids' pediatric gastro and the colon-rectal surgeon so that will be a good arrangement for them to share info regarding our cases with one another.

I am really excited about this now...reminds me of Quantico when I had the first gastro for a few months and wasn't impressed with him before switching over to Dr Brown. I am thankful for this new option and will not mind the drive since it ensures that I have great care.

Subscribe to: Posts (Atom)

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.