Living with FAP: EXTREME FRUSTRATION

Tuesday, October 30, 2007

EXTREME FRUSTRATION

I still do not have the referral for tomorrow. In fact, I was told that it will not be ready until AFTER my appointments tomorrow. It was too late to talk to Dr Cameron’s office to see if he’d see me anyway so I left a message. The bottom line is that we have to leave as if I’m going to be seen for both appointments. Once Dr Cameron’s office opens, we can call & let his secretary know what’s going on & see if he’ll see me anyway. The referral will happen so he can get paid…it just won’t come through BEFORE I see him.

The bottom line is that the new PCM was leery about referring me to a doctor she knew nothing about. She felt that ethically, she couldn’t do it & that Dr Brown (the gastro) should do it. I did not find this out until 4:15…my appointment was for 3:15. A whole hour was wasted when I could have called my case manager & talked to her. Instead, I was talking to her after 4:40. Actually, the PCM’s office had problems with this earlier in the morning but never called me to talk about it. (ARGH!!)

On another note, I am very, very blessed that Amy Stark watched the kids for what seemed to me to be the never-starting & then quickly-ending doctor’s appointment. I certainly didn’t think the kids were going to be there for as long as they were. She was very gracious about the whole thing. I don’t mind other people watching my kids; however, I feel like she was taken advantage of b/c of the whole situation at the doc’s office…I certainly do not want to wear out my welcome or my friendship before this even gets started.

In any case, while I wasn’t pleased about the situation & I was having a pain attack at the time, the PCM did offer some help & insight. 1st, she prescribed me Aciphex to help with the burning (the downside is that it’ll take a few days to really work but should help if I don’t have surgery until after Thanksgiving). She also went over the photos of my previous scope & agreed with what Caelan & I found…there’s evidence that this was going on in 2003 (OK, it’s pretty bad when an 8-yr-old can look at a picture & say, “Mom, it looks almost like this” as he’s pointing to the most recent scope). The PCM also noted that my scope from 2001 shows the signs of the start of this ulcerated mass…I have been complaining since 2001 of the burning pain (which has now greatly intensified). I was surprised by Dr Bataille's memory & attention to detail b/c she remembered something I told her about my dad’s history when I was in the hospital. I guess I’ll have to wait & see if today was an isolated incident or if it’s likely to repeat. If it happens again, my case manager already said that we’ll have to switch to another PCM.

Anyway, I feel much better now than I did earlier; however, I’m thinking that

I just took my 2nd dose of (yucky, yucky) steroids for a CAT scan I may not have tomorrow.
I’m getting up to leave before 7am & driving through DC rush hour traffic to Baltimore for a visit I may not even have.
I’ve arranged for 3 different people to watch my kids so as to not put too much of a burden on any 1 person.
I’ll have WASTED 3 days with the kids, spent tons of time on the phone & driving around to get things ready & all I have to show for it is a house that’s a TOTAL wreck at this point
Matt may have taken off for nothing & he is really, really busy with this presentation for Friday (you can also pray for that).
I KNOW something is wrong. I WANT the pain to stop. I WANT the situation to be fixed before it gets worse.

Thank you for reading through this email. I hope it doesn’t sound too bad or like I’m having a pity party or anything like that. I just really, really feel like I’m standing at the entrance to where I want to go (right now, it seems like the Promised Land to me) & need to go through the entrance but am being told that (through no fault of my own) I can’t get in just yet. I don’t even know how to pray for the situation b/c I have no clear indication as to whether this is a “God-thing” or an attack by Satan. All I know is that He is able, & I am an impatient sinner.

I pray that we all have a blessed night of rest & lots of opportunities to praise Him tomorrow.

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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.