Living with FAP: May 2008

Thursday, May 29, 2008

What Is a Whipple Procedure, Anyway?

I am often asked this question so I thought I'd take the time on the 6-month anniversary of my Whipple procedure to explain what it is.

The Whipple Procedure (aka pancreaticoduodenectomy) is the worst surgery to ever have (even worse than something we generally consider to be serious like open-heart) and is most commonly given to people who have pancreatic cancer. Not that long ago, a Whipple procedure had a very low survival rate because most patientts either died from the procedure itself or from complications post-surgery. I am so very blessed to not have had pancreatic cancer and am so thankful that I had a doctor who was able to be proactive which enables me to still here today.

In my case, I had a "Classic Whipple" which means that I lost a portion of my stomach (5% which includes my pyloric valve), my entire duodenum (1st 12-18 inches of small intestines; it absorbs most of the vitamins and nutrients your body needs), my gall bladder (the gall bladder duct plugs into the duodenum and if they just hooked the gall bladder straight back to the small intestines, gall stones would develop and it would have to be removed in 6-12 months anyway), my pancreatic duct (where the pancreas plugs into the duodenum), and the tip of my pancreas (because it had become hardened or something like that because I'd been having acute attacks of pancreatitis but didn't know it). After that, they cut a hole in the pancreas in order to pull the jejunum (the portion of the small intestines after the duodenum) through the pancreas so it can still do its job. They then hooked up what's left of the small intestines to the remainder of the stomach so that it can empty as food is digested. And, BAM! there you go...a new life with a whole new learning curve and with always finding and adjusting to the “new normal” in life because it can change frequently. So, right there, that's at least 6 surgeries plus a lot of other things that have to do with rerouting blood vessels and all kinds of technical and complicated little things like that. (The operative report is like SEVEN pages long.)

So, after surgery, you get to spend at least a day in ICU so they can closely monitor you, blah, blah, blah, blah, blah. I'm not trying to make light of the situation, but it really is quite complicated so if you want more info and a real education on the GI system and anatomy, you can check out the following links: http://en.wikipedia.org/wiki/Pancreaticoduodenectomywww.surgery.usc.edu/divisions/tumor/pancreasdiseases/web%20pages/pancreas%20resection/whipple%20operation.htmlwww.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/treatment/surgery/Whipple_procedure.php

During my recovery from the Whipple, I lost 20lbs in less than a month...and I didn't have 20lbs to lose to begin with. Thankfully, I never went below 100 lbs which is the "magic number". Once you go below a 100 lbs, things get even more tricky/complicated. Anyway, I just barely hung and avoided a whole bunch of new issues.

Every day was a struggle, but I was able to keep my focus on Christ, and He enable me to get through each moment as it came and has used it to make me who I am.

I am so thankful that medical technology has made such great strides in the success rate of a Whipple Procedure. I am also indebted to those Whipple pioneers who did not survive the surgery and to the families that lost their loved ones to the horrendous surgery. They enabled more and more of us to survive and live longer lives as Whipple Warriors.

Tuesday, May 20, 2008

On the Upswing!

Hi, All…

I just wanted to post a quick update to let you know that I’ve pretty much recovered from my surgery. All of the weird problems I had after surgery like short attention span (along with inability to focus & read; lack of desire to type), fine motor problems (like inability to write legibly, slow typing), extreme fatigue, digestive issues, depression, insomnia, blah, blah, blah, have gone away. Tomorrow (Wednesday) is our 14th anniversary. We are going out Friday night for a movie & dinner to celebrate. I can remember a time just a few weeks ago where the thought of eating out for our anniversary was quite inconceivable. When I think back to how I was before I started to heal, I must have looked like a zombie. It’s amazing that once I started healing, things progressed very quickly. I still don’t have the feeling of being hungry very often, but I am eating whatever I want, whenever I want pretty much without any problems. As far as I know, my iron is still low, but that should be on the upswing soon. I weighed myself this morning & was 103.6 which is an improvement. I am very grateful & thankful.

Prior to my surgery, we thought we’d be moving to Camp LeJeune this summer; however, after all the post-op problems I was having, we decided that it wouldn’t be very smart to move…especially to a remote place like Jacksonville, NC. At the time, we didn’t know that the Lord would have me healed way before Matt’s graduation. However, I really believe that He used this entire situation to have us stay here in Quantico. Everything has truly worked together for the good of our family…even having to put the children in a DOD school. They have made leaps & bounds. Cassidy is excelling in math & is reading way beyond her grade level. They both enjoy their art classes, & their teacher has told me how creative & talented they both are. Caelan is doing well in his special ed reading class & has really started clicking on a lot of things lately…including his SRI & DRA tests that show he is reading at grade level (but still below his age level). Reading is still a chore for him, & he has to work very hard at it, but it’s amazing to see him doing it. I am quite confident that with another year of assistance, he’ll be sailing through & ready to return to homeschool. Of course, that will be another major change in our family, & I’ll have to cut back on my volunteering, but hopefully & prayerfully, I’ll be ready when the time comes.

On another note, Matt graduated from EWS 2 weeks from this Thursday. To celebrate, we took a short trip up to NY to visit our friends from Cherry Point (the Bells). We had a blast going around NYC. I ate at a couple of restaurants & didn’t even worry about what I was going to eat. It was very nice. It was great picking up where we left off with our friendship…of course, it wasn’t enough time, but it was delightful. (On a side note, my 2 were enthralled with the Bells’ new “toy”, aka their adopted baby Sam. They wanted to hold him all the time.) After such a short visit, we were sad to have to come back home & not be able to hang out & catch up longer; however, the kids had to return to school & Matt had to start his new summer job at OCS.

Anyway, I just want to offer thanks & praises to the Lord for His provisions & healing hands. I also want to thank you for all of your concern, support & prayers. I wouldn’t have made it through all of this without them.

Love,
Stephanie<><

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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.