And Veggies are Supposed To Be Good For You!

My garden is flourishing. At least for a garden planted by me. I've harvested some beautiful lettuce, spinach and snow peas. They looked and smelled so wonderful when I was out there picking them last night, that I just had to try a few.

I was having a pretty good day -- only a few urgent trips to the rest room, and comparatively little pain. So I decided to chance it. I ate a couple of crisp, fresh lettuce and spinach leaves, and two snow peas -- stringy parts removed. I chewed thoroughly, enjoying the flavor. 

I thought that I might get a way with it. I felt pretty well through the evening and overnight I slept better than usual. I was sneakily noticing these subtle improvements, as I watch for signs that the Cimzia might be working to quell my Crohn's symptoms. But I didn't want to celebrate too soon. You know, thinking of it in a superstitious way, that could jinx the whole thing. 

Then, this morning the consequences came. I recognized my indulgence, though I thought I'd chewed my vegetables better than I actually had, by the looks of things. A bit of bleeding too. But not much pain. And the diarrhea didn't continue all day. Just for a while in the morning, in an unusually self-limiting way. 

So maybe the Cimzia is starting to work. I hope so.

Tonight, I drank my fresh veggies in a green smoothie with frozen blueberries and bananas. It tasted good. I hope it spends enough time inside to do me some good.

If not, I'll be sharing more garden veggies than usual with family and friends. Someone should enjoy those luscious greens!

We'll see. 

- Beth

Up in the night

It's one of those nights when mind and body won't let go of the day and allow sleep to work its magic.

I complain about insomnia, but sometimes quiet solitude is a blessing.

I'd rather be sleeping, of course. But since I'm not, I can take the time to write a bit. Or to read what I didn't find time to read during the day. I played my turns on the Facebook Scrabble games I have ongoing with my son Zachary in Philly and my sister Dawn in West Valley. I'm even contemplating a bit of sewing. I'm four quilts behind on the wedding gifts I owe to my sweet nieces and nephews who put up with my well-intentioned plans that take months or years to morph into actual quilts. I want each of them to have one, though. So I'll do what I can.

Today I was grateful to be working at home. My frequent treks to the bathroom would have created a much bigger problem in an office or on the road today. Here, my work hours are flexible. And my laptop is portable, so I can move closer to the restroom when I need to. I wasn't really uncomfortable through it all today. Just sort of wiped out, the way most people probably feel after struggling with diarrhea.

It's under control, at least for now, thanks to Loperamide and a liquid dinner. But the audible rumbling and gurgling emanating from my tummy is warning me the calm won't last. I feel hungry, and I'm tempted to go snack hunting in the kitchen, though I'm not sure I want to stir things up again and become a frequent flyer up the stairs like earlier today (or technically, it was yesterday). It's hard to imagine eventually sleeping, though, with this hunger.

Either way, I'm going to be awake a while. Hopefully, you are snuggled and snoring in your bed!

Time for a mid-night snack. :-)

- Beth

A good day follows Cimzia dose#3

Last night I injected Cimzia dose #3. Somehow, the two injections weren't as painful as some of them have been. I'm happy about that.

Then, last night I felt WAY tired, but couldn't go to sleep until long after crawling into bed. And I slept in about two hours this morning because I felt too tired to get up. Of course, that could have something to do with having the day off today. Gotta take advantage of opportunities to sleep in, right?

Today, I'm still a little tired, but I've had a pretty good day so far. I even felt sorta like normal person when I came out of the bathroom a little while ago. Huh.

Could the Cimzia be working?

Too early to judge, of course. I've had good days before that were followed by more bad days. I am just grateful for the good ones as they come. And, of course, I'm hoping for more good days to follow!

I'll keep you posted!

Thanks for checking in!

Beth :-)

Cimzia Slows Healing

Since starting the Cimzia injections, I've been watching for any noticeable changes.

Of course, I'm hoping for positive changes. Like no more pain and diarrhea would be nice. But from what I hear and read, such differences this early would be unusual.

One thing is different, though. And the first time it happened, I assumed it was a coincidence. Now I'm seeing a trend.

Breaks in my skin look worse for longer, and heal more slowly than they used to before I started using Cimzia.

The first was a scrape on my knee I got while gardening the Saturday after my first injection. I accidentally knelt on a sharp rock that drew blood. Of course, germ phobic that I am, I cleaned it and applied antibiotic ointment every day. The next day, I bought a knee pad for gardening.

Normally, a small ding like that might hurt for a day or two, then develop a scab, and disappear altogether within a few more days.

But this owie hurt for more than a week, and the skin around it got sort of puffy and red. I kept an eye on it because it looked like it was threatening infection. But it didn't get worse. After two weeks, it stopped hurting and finally got a scab. Now, 3 1/2 weeks later, it's just a small discolored area on my knee.

Then, even though there was virtually no bruising with a blood draw I had on Memorial Day, the needle's entry point remained tender and visible for a week. Weird.

Then, a few days ago, I bumped my forearm on something sharp. It bled a while. I cleaned and dressed it. I've been applying ointment and bandages until today. I still hurts, surrounded by reddish, skin that's a little puffy, and it hurst if it gets bumped.

I know Cimzia decreases the immune system's ability to identify infections that need to be fought. So I'm keeping it clean and watching this new sore to make sure it eventually heals. It makes sense that if Cymzia delays the inflammatory response, that sores can't heal as fast, since they depend on inflammation to kick-start healing.

I've officially seen evidence of this now.

If only I felt as great as my labs look!

Have you ever been disappointed to find out that part of your body is healthy and working great?

Sounds weird, I know. But I was sorta bummed this week that my lab results for my metabolic panel and celiac disease check came back looking pretty normal. So did the results of a long, arduous test to find out if my gall bladder was working as it should. 

Of course all of this is good news. A healthy gall bladder, liver and pancreas are all to be celebrated. And now we know for sure that eating wheat is not the issue. Problem is, now I know that none of these is to blame for the increased pain, nausea and generally yucky feelings that have persisted for months. It's probably just my Crohn's flaring again in a new and unique way, as my MD surmised. 

If this intense, upper-right quadrant abdominal pain were attributable to a diseased gall bladder, I could get it removed and feel better. Right? I always hope that sometime my symptoms will end up being caused by something reparable. Something that  modern medicine knows how to cure.

But instead, I just still need to be patient while waiting to see if the Cimzia injections will make a positive difference. 

Sigh. 

Now, if only my joints would stop hurting so I could sleep for a while.

Sorry about this. I tend to complain a lot (as if that is something new) when I'm really, REALLY tired. Especially since a lot is happening tomorrow (Oops! That would be today at this point!) that I'd like to enjoy.

Thank heaven for caffeine. :-)

Can We Talk?

In spite of the dearth of comments in response to my blog posts, I know a few people do view it.

Hopefully, some of you also read it.

What very few have done so far is to post comments.

Now, I realize that discussing one's bowel issues is daunting. So, my blog will let you post anonymously. Nobody (not even me) will know who wrote your message.

And maybe what you write will help someone else who reads it.

Besides, there's something liberating about getting problems and opinions out in the open -- even if nobody knows it's yours.

So, be brave. Post a comment once in a while if you have a thought or experience to share.

But don't stop reading if you don't want to post. It's not as much fun to write for nobody!

:-)

Pain & Fatigue

OK, so maybe there was no "ultra-fatigue" in the immediate wake of my second round of Cimzia injections on Friday. But last night and today it showed up.

In spite of exhaustion, I couldn't sleep last night (or should I say this morning?) until after 3:30 a.m., when I finally downed 1/2 of a Zolpidem (generic for Ambien) and curled up downstairs on the recliner. 

Some middle-of-the-night, together time with my daughter, Megan, was a welcome diversion when I would have been tossing and turning in bed otherwise. Then, once I did lie down, head, shoulder, neck and hip pain kept me awake with my eyes closed for too long.

I failed at napping this afternoon, too. After 45 minutes shifting from one position to another, sleep wasn't coming. 

So I got up. Both times.

Cimzia's literature lists joint pain as one of its top-three-most-common side effects. It's true that the pain is worse since the injections Friday morning. But joint pain often interferes with my sleep. So I don't know how much to attribute to Cimzia.

I wonder if the uber fatigue that the Cimzia nurse warned me about results from missed sleep due to joint pain in most Cimzia users. Or do those side effects usually occur in isolation? 

Hmmm. Watching for a pattern. And hoping for less pain and more sleep tonight.

Cimzia Dose #2

Cimzia dose #2 was due yesterday, but I put it off until today. The nurse said that one day early or late is fine.

Yesterday was a very crappy (and I mean that literally) day. 

It was a lot like a bowel prep for a colonoscopy -- you know, where you take a laxative and drink quarts of a not-so-yummy concoction to make your colon squeaky clean so the Dr. can see the inside. Yuck.

A few loperamide pills quelled it after a few hours. Later, the pain in my abdomen, shoulders and neck got under control with 1/2 Lortab and a split Flector pain patch. I'm sure I'll pay later for the loperamide indulgence. I'm drinking lots of water today to try to stave off painful plugging later.

So, this morning I injected both syringes of Cimzia for my second dose. I really hope this stuff works, so that injecting that thick fluid into my abdominal fat is worth the pain. I shouldn't be such a wimp, though.  

So far, the only side effect was the pain going in and the tenderness at the two injection sites for a couple of hours. No ultra-fatigue so far.  In fact, I feel good so far today. We're taking the kids out to dinner tonight. It'll be fun. I love time with the fam.

And hopefully, the day-after-the-dose I'll feel as well as I did after the one two weeks ago.

Hard to Swallow

Be careful what you swallow.

Eight weeks into experimental-drug injection treatments for a Crohn's Disease study, I swallowed an endoscopy capsule just like the one I'd swallowed before starting the treatments. Late that night, the resident who was comparing the before and after photos called me.

"The photos show another capsule just kind of hanging out in there," she said.

Each capsule was the size of a larger-than-normal vitamin, and was flashing when I swallowed it. When the endoscopy capsules got stuck, the investigators booted me from the study and sent me to a GI surgeon.

After surgery, I remember trying to focus as the surgeon excitedly showed me and Dave (my husband) photos of my bowel, pulled through a laparoscopic wound where my naval used to be. He explained that he made me a new belly button. "I gave you an innie," he said. 

"This is classic Crohn's," he said, and asked to show the pictures to his medical students. He described the surgery -- removing the two capsules, and 50 cm of bowel. He said that nothing wider than a strand of yarn could have passed through that diseased section. 

Three days in the hospital was the plan -- 14 dicey, groggy, painful, central-line infusion, blood transfusion-filled days were what I got.

I remember Dave watching World Series games on the small TV bolted to the wall in the room as I drifted in and out of consciousness. And I remember the beautiful flowers friends and family sent that ended up smelling like old broccoli by discharge day. But the details are fuzzy. 

That was 7 years ago, five years after my Crohn's Disease diagnosis. 

The surgeon said I may have eventually needed the surgery later. But there is no way to tell for sure. As it was, the surgery and hospital stay were free of charge. And they compensated me for the time missed at my new job.

Not that I'd ever want another bowel resection, free or not. I don't think I'll be part of any more drug studies either, though I am grateful for those who are.

And I won't swallow any more flashing indigestibles.