Living with FAP: Trip to the hospital

Saturday, October 20, 2007

Trip to the hospital

I’ve been having abdominal pain off & on for the last 6 yrs or so…sometimes daily, sometimes not. The cause has never really been identified or diagnosed. Well, Sunday around 1am, I woke up with the burning pain, & it lasted for 2 hours. The same thing happened early Monday morning. It persisted off & on during the day on Monday…I just thought I must have eaten something that was causing trouble…not uncommon when you’ve had your large intestines removed. It happened again early Tuesday morning…I actually contemplated going to the ER at the time but didn’t. I called my gastroenterologist’s office (I didn’t really like him but hadn’t gotten insurance approval to see a new one yet), & they couldn’t get me in for a whole week. I called the clinic on base & couldn’t be seen until the next day. Based on my symptoms, the clinic told me to go to the ER. My friend Amy Stark took the kids, & another friend (Kathy Tart) took me to Potomac Hospital & stayed with me until Matt was able to come up later that night. Initially, the triage staff thought I had reflux (which I denied) but ordered some blood work & a GI x-ray. The x-ray came back fine; however, my lab work showed that my lipase & amylase were elevated…indicators of pancreatitis. They decided to admit me to the hospital & ordered an ultrasound of the pancreas, liver & kidneys. They all checked out fine, but based on the blood work alone, I was admitted for acute pancreatitis. A CT scan was ordered & showed that I had some spots of calcification on the top of my pancreas…a sign of recurring pancreatitis which was news to me. Pancreatitis is the inflammation of the pancreas & is very, very, very PAINFUL…like having 3rd degree burns on the inside of your body. OK, for those of you who know me well, I have a strong threshold for pain, but I doubt that it’s that strong. They’re thinking that maybe I’ve had chronic mini-bouts of pancreatitis…little, quick flair ups but not full blown attacks. Soooo, the testing continued. I had an MRI, then a 1½ hour x-ray of the gall bladder to test for its functioning (a bili-something-or-other). Both of these tested out fine. The gastro that was being consulted (Dr Josovitz) wanted to do an endoscopy with a view of the pancreas & the gall bladder at the duodenal area (beginning of the small intestine where they all kind of come together) which requires the use of a special scope is required that he wasn’t qualified to use it; however, one of his partners, Dr Brown, was. Dr Brown is the gastro I was trying to switch to! (Praise the Lord!)

Anyway, I had the scope this afternoon. Dr Brown wasn’t able to identify the source of the burning; however, he discovered something that became more important than determining the source of my burning pain. He found a mass at the opening of my duodenum. (The duodenal area has a very high malignancy rate which means that things can quickly & easily turn cancerous.) I had brought my copies of my GI records, including pix of previous scopes. He was able to compare it to the one I just had in February…the mass wasn’t there, but it looks like it may have been forming. He took some biopsies & should have the results on Monday. We have an appointment to see him Friday am. He’s going to make arrangements for me to be seen by specialists at Johns Hopkins (in Baltimore…just about 2 hrs away). Regardless of the biopsy results, the mass needs to be removed, & the surgery won’t be simple. Hopefully & prayerfully, Tricare will go along with Dr Brown’s plan.

I have been released from the hospital & am now home (& will be crashing into bed shortly); however, I don’t know how long I’ll stay here…I’m hoping it’s just the combination of the anesthesia from the scope this afternoon & the car ride home, but I’m nauseated…hopefully, a little rest & the phenergan will work wonders. It’ll be very nice being back in my own bed.

Everyone here has been just WONDERFUL! Matt was given the last 3 days off school. We’ve had numerous offers for food & childcare from base friends, Matt’s conference group, our church & the Baptist church where we do AWANA. I’ve had some visitors & tons of phone calls. My friend Becca Jaworski (we were friends back in TX & they’re stationed here now) has Cassidy spending the night at her house tonite…she should be having tons of fun reuniting with Nico. Another friend (Alayna Hudson) is a nurse in the ICU at Potomac…she came to visit me each day & was able to give me positive feedback concerning the internist & gastro that were assigned to me. I really feel like I am just where the Lord wants me to be.

As soon as we know what’s going on, I’ll give y’all an update. Until then, your prayers will be very much appreciated…the next few months will be quite interesting. This isn’t the 1st time that I’m going down an unknown path where I have no power or control; however, I do know that I serve Jehovah Rapha (the LORD who heals) who is omniscient, omnipotent & omnipresent. He loves me like none other & is holding me in the palm of His hand. Please pray for Matt & the kids as they go through this as well. Also pray that I am able to relax & rest & trust Yahweh & not be concerned with all my motherly duties that will be on the back burner.

Thank you in advance for your prayers.

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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.