Can I just say "OUCH!"

I was feeling hopeful – and may be a bit smug – when my latest Prednisone taper was down to 5 mg daily, and I was still feeling relatively well when I had a couple of days with no Prednisone.

Then it happened.

This morning I woke up with that familiar, intermittent, right-upper-quadrant pain. I had to bail on today’s plans (sorry Samantha!) and spend the morning in bed. I called the pharmacy and got more Prednisone – started a 40 mg dose this morning that will taper down yet again.  And I took some bisacodyl laxatives (15 mg spread throughout the day) and some good, old-fashioned chocolate and lots and lots of liquids – clear and full. Hopefully, that combo staves off an obstruction. Tonight, it seems to be working.  Pain is as absent as solid food. And things seem to be moving through OK.

After my nap and a trip to the pharmacy I got on the phone.

It turns out that I hadn’t heard back from the surgeon’s office to get an appointment because they hadn’t yet received my medical records requested from my other to doctors. (I know. It seemed a little extreme to me too, that they won’t even schedule me an appointment until the information gets there.)

So I called my GI doc and my family practice doc offices and asked them anew to send the information to the surgeon. I even gave them a name to put the fax to the attention of (Awkward grammar, huh?) and recited the fax number, making sure they got it. Tomorrow, I’ll call the surgeon’s office again to find out if the info came and try again to set up the appointment.

I wonder how far ahead they’re scheduling at this point. I’ll keep you posted!

Take care of yourself,

Beth

Crohn's Disease Chronicles: OK, OK. I'll go see the surgeon

OK, OK. I'll go see the surgeon

It's been a busy time with little energy to focus on coping with Crohn's disease. So I'm grateful the Lord blessed me to feel so well during the weeks leading up to my daughter Megan's wedding. 

I attempted a couple of times to taper down the Prednisone dose to nothing. But every time I'd get down to about 10 mg daily, the pain  and bloating would start back up, and I'd have to up the dose again. Dr. Cutler told me to take the dose that is necessary to control the symptoms. It got me through. 

The wedding day was glorious. I am so happy for the newlyweds. And other than needing to watch what I ate, I felt almost normal.

Prednisone, of course, brings its side effects. I feel hungry more often. I have to shave more, and my face and abdomen are rounder. Then there's the neuropathy in my hands and feet. I'm tapering again, and I'm down to 10 mg again tomorrow. Fingers crossed.

After I saw Dr. Cutler last month, he suggested that I make an appointment with Dr. Sklow, the surgeon who removed part of my bowel seven years ago. Dr. Cutler wants Dr. Sklow's take on whether he thinks the small portion that remained inflamed should be removed, and on if he thinks that cutting adhesions outside of the bowel is a good idea. Of course, messing with scar-tissue adhesions carries the risk of creating more scar tissue and adhesions. 

With the wedding imminent, I haven't called Dr. Sklow yet. I didn't want to deal with it yet. But now with the wedding a week in the past, I need to call and set up the appointment, and get the other docs to send Dr. Sklow my records. And, Dr. Cutler gave me an order for some lab tests that I've also neglected. One of them has to be done at a hospital, which makes it just that much more complicated to get done. But now it's time to do it. 

OK, OK, I'll get back to paying more attention to this stuff. 

I hope you are well!

Take care,

Beth

No surgery! At least for now. :-)

The big test was yesterday -- the double-balloon, retrograde enteroscopy. It's a colonoscopy on steroids. The balloon allows the scope to creep through the small bowel after it reaches the colon's end.


Of course, the prep for the test on Labor Day was the worst part. My family eased the pain by taking me to breakfast while I could still eat solids, before 10 a.m. Then, liquids the rest of the day as well as the not-so-yummy laxative mixed with Gatorade. I don't think I'll want blue Gatorade again for a long time. :-( The rest of it -- the diarrhea as the prep did its job -- wasn't that different from a day when I'm having a Crohn's flare. 

But the findings of the test were better than I expected. No imminent surgery! Hooray! Here's what the report says:

1) Ulcerated tissue in the ileocolonic anastamosis, ? focal recurrent Crohn's
2) Normal neo-terminal ileum
3) No evidence of obstruction

The examining physician (Martin Radwin) recommended:
1) Await biopsy results
2) Follow-up: GI clinic in 2 weeks
3) Low residue diet

So what does that all mean? Some of it may be obvious, but here's my take.

1) Most of the bowel was visualized, which included the entire colon and 250 cm of small bowel, reaching the proximal ileum. Part of my ileum was removed during the 2004 surgery. The doctor doing yesterday's test reported inflammation at the site where my colon and small bowel were joined (after the scarred and impassable 50 cm were removed) during the surgery in 2004. The rest of the bowel observed showed no sign of problems internally.

2) The other issue was outside of the bowel. The doctor struggled with getting the scope through "exaggerated small bowel bends suggesting extrinsic adhesive disease." In other words, tissue outside of the bowel that was probably disturbed during the surgery in 2004, is squeezing some of the doubling-back loops that are normal in the small bowel, making the bends tighter than normal. Think of a garden hose that gets kinked. Water can still pass through, but not at the same rate or velocity it would have if the hose were loosely curled on the lawn. 

Either or both of these problems could have caused the bowel obstruction last month. After a month of Prednisone(a steroid to decrease inflammation), any associated inflammation was probably markedly decreased by yesterday's test. But hopefully, what Dr. Radwin did see along with the results of the biopsies he took, will give Dr. Cutler the information he needs to help me set a treatment course that has the best chance of prolonged wellness. 

My appointment to follow up with Dr. Cutler is on Friday, Sept 16. Until then, I'm just trying to stay out of trouble. More Cimzia shots tomorrow. Ouch!

Be well and take care!

Beth

These balloons don't sound fun.

Waiting and trying to keep my symptoms in check -- that's the focus at this point.

The hospital sent me home August 10, feeling more like a dirty, stinky, limp dish rag than a person. The hospitalist had prescribed a cardiac diet as I left, though the high-fiber part of that would have been quite harmful. She got the low-fat part right anyway. I went with what the hospital GI doc had recommended -- low-residue, low-fat, mostly mechanical soft diet. I hasten to add, though that the staff at St. Mark's Hospital took great care of me, even though it wasn't any fun.

At home, slowly, I regained strength, tiring a little less rapidly with each day.

About 10 days after discharge from the hospital, at my follow-up visit with my GI doc, Christopher Cutler, we had a plan. He gave me a choice between two diagnostic tests: a capsule endoscopy or a double-balloon, retrograde enteroscopy. He said he'd rather have a live professional with the scope doing the enteroscopy, so he could biopsy and visualize directly whatever there is to see inside my small intestine's lumen so there was no risk of missing it as could happen as a capsule endoscopy zooms by. So I opted for that.

Trouble is, the earliest appointment is Sept 6. So I'm on Prednisone to keep symptoms minimal until then, using Ondansetron (an anti-nausea med) and liquid Lortab (narcotic pain reliever) to quell pain when it happens (like it did today). When the pain occurs, it means the obstruction is back or building again, and I revert to liquids for nourishment until it passes. Hopefully, I can prevent another emergency. And I'm trying not to worry about what the test results might show. 

If scar tissue from inflammation is the culprit, there's a chance it could respond to being dilated from within, opening up the narrowed passage to prevent future obstructions. Dr. Cutler believes, based on the information he has so far from the tests in the hospital, that the problem is more likely mechanical (meaning that it is a permanent sort of obstruction whether inflammation is active or not) than inflammatory, although it is apparently made worse with inflammation. If nothing is found inside my bowel to explain the obstruction, it's proably being caused by something pressing the bowel from the outside -- something like an adhesion from the surgery I had in 2004. If that's the case, the decision of whether to venture another laparoscopic surgery will be complex, since more surgery can just cause more adhesions. 

Sigh.

Meanwhile, for the past few days, I've felt pretty well, until today. Prednisone tends to give a false sense of well-being. Although it makes sleeping almost impossible for me without a sleeping pill, it gives a caffeine-like energy in the daytime, now that my endurance is getting better. At the same time, it numbs my feet, lower legs, hands, tongue and face. And it makes me kind of clumsy. Soon, if it follows the all-too familiar pattern it has in the past, my face will get fuzzy and moon-shaped. My tummy will start building up extra fat layers again. And eventually, my muscles strength will wane. Hopefully, the time between now and the test won't be long enough to realize all of those yucky side effects.

Enough already. I'm grateful to be home with my family and back at work. And I can walk around the neighborhood without exhaustion. I even started sewing an new quilt top. And most of the time, I'm not in pain. That's a good thing!

Take care of yourself. Be well.

Beth :-)

The suction tube is gone! Next - surgery or not? We'll see.

The naso-gastric suction tube is out! 

I was terrified, but Kim, my RN, did a great job of reassuring me and pulling it with skill and speed to minimize the gag reflex and pain. I am happy to say that my throat seems to remember how to swallow correctly without it! Hooray!

I still have a sore throat, but it's a 3/10 instead of a 6/10 in intensity.

Today's bowel X-Ray showed that attempting oral fluids should be safe, so the GI doc consulting said if my system could handle clear liquids without my abdomen becoming distended or painful again, and without vomiting, the tube should come out. If not, the tube would be our tool to decompress any new pressure. 

Now that the n-g tube is gone (I won't miss it!), I'll have full liquids tonight, and advance my diet slowly, to catch early any obstruction that may develop. If nothing happens and I feel OK, I get to go home and follow up with my usual gastroenterologist, and discuss with him the possibilities of further investigation into how to treat the apparent scar tissue that could be responsible for this most recent, and other past partial and full obstructions -- some of which have resolved without hospital visits. 

It seems there's a good chance I will need some sort of surgery, as the area affected is very near the site where I had surgery in 2004. This obstruction behaved more like a mechanical, or scar-tissue-like problem than an inflammatory problem, though both issues may have contributed. If my diet while in the hospital can't successfully progress to normal food without obstruction-like symptoms, surgery will be imminent, if I understand the physician correctly. (Keep in mind that sometimes I don't, especially when Morphine is in my system.) That would mean I'd have surgery before leaving the hospital.

Tonight, I'm just ecstatic to have the naso-gastric tube gone and to be hearing good news from the X-ray results. Tomorrow I'll deal with whatever the new day brings.

Thanks for reading. Take care of yourself.

Beth

This Bowel Obstruction Sucks

I'm writing this post from St. Mark's Hospital, attached to a naso-gastric tube about the size of a garden hose (at least it feels like one). It's emptying everything it can find that wasn't able to pass beyond the bowel obstruction in my small intestine, plus any new stomach secretions. A cute 4-year-old neighbor who visited me with his parents this afternoon identified the stuff the tube is dumping into a clear plastic container as chocolate. If only.

An IV is dripping hydrating fluids and steroids into my vein to try to calm the inflammation in the tissues where the obstruction is. Sometimes, pain killer joins in the mix. And, when I'm in bed, velcro-fastened anti-embolism wraps take turns inflating to encourage blood flow and discourage blood clots in my calves. Suffice it to say that getting ready for a trip to the bathroom or a walk in the halls takes a lot of work.

After steroids calmed a preview of this in early July, cramping with intermittent watery stool returned a couple of weeks ago. Some days were worse than others, as usual. In fact, I had several good days. I even did three hikes in Zion National Park and went to three plays last week. But the bad days were hauntingly similar to the way I felt July 2. So my GI doc ordered a CT Enterography to show details of the small bowel, looking for any strictures (narrowed areas) or other problems that could cause the pain. After fighting for a couple of days with the insurance company about paying for the test, employing help from both the HR specialist at Dave's company and a high-up customer service person at Blue Cross, we set it up. 

The day before the appointment, the cramping climaxed and something broke free, gushing until I felt empty. The good part is that I was pain-free afterward. The confusing part was that I was tempted to cancel the CT because I felt better. But since the problem had recurred multiple times, including twice in the same month, I kept the appointment at St. Mark's, since it is a participating provider on our health plan. Afterward, I awaited results. The appointment was Thursday.

Enter the weekend, of course. When emergencies emerge.

Friday night was a little uncomfortable, but nothing to write home (or a blog) about, comparatively speaking. But Saturday, the cramping started kind of early. We were going to the Farmer's Market so I didn't eat breakfast. I didn't want any inconvenient bowel activity. Until we smelled the waffles at the little shop across the street. I had to have a cinnamon-peach waffle. It was glorious! And I didn't feel much different after I ate it than I did before.

So I ate a small sandwich at lunch time and kept drinking lots of water. The cramping came and went, and I still never went, if you know what I mean. We had plans to take the kids to dinner. I love Ruth's Diner in Emigration Canyon, and resolved I'd order something small and be just fine. But as we waited for our table-is-ready pager to go off, the cramping intensified. My abdomen felt distended with every swallow I'd had all day. I felt more and more unpleasant (and probably acted that way, too) as time to order neared. So I ordered a decadent chocolate malt pudding. I could limit the amount I ate; chocolate pudding is free of fiber and chunks; the chocolate and fat might just start things moving. Besides, it's yummy, and was the only thing on the menu that looked good to me. 

Man, that's weird at Ruth's Diner. I'm going to have to go back as soon as I can eat good stuff again. :-)

It was yummy, but I couldn't eat much. The cramping and distention increased. I wasn't good company. Probably not the funnest Saturday family dinner ever for everyone.

On the way home, we discussed whether to go to the hospital for help. After, I called the GI doc on call, who agreed to try to help me stay out of the hospital. He called in heftier steroids for me, along with some anti-nausea stuff and pain control liquid. But he warned that a fever or vomiting should send me to the hospital. Dave and Jeff gave me a priesthood blessing (I love having faithful Mormon Elders around). Dave rushed off to the pharmacy while Megan helped me change into comfy jammies and got me a blanket. She also encouraged, that "maybe you should just go to the hospital." When Dave returned, that's what we did.

Megan was right. This obstruction needed suction to relieve the pressure building behind it. Although, now that the distention and pressure are gone, my throat hurts most. If you've ever needed a naso-gastric tube for suction, you know what I mean. If not, I hope you never need one. The hospital doctor explained that the tube would collapse under the suctioning pressure if not so fat and stiff. Bummer.

Interesting, though, that my stomach and duodenum contents managed to obstruct even the mighty nasogastric tube this afternoon. A bunch of sticky, white granules tenaciously held together, preventing anything behind them from passing. "Have you been eating sand?" the CNA asked. It was actually a bunch of the granules that fill every Pentasa capsule I take. If they're actually glopping together and contributing to the problem instead of decreasing inflammation, they're going to be fired, just like the Cimzia if it doesn't start working soon!

I'm calling my GI doc in the morning to discuss it. Well, after a bit of telephone tag, with the medical assistant, maybe I'll get the message to him anyway. My health plan doesn't cover any of the hospitals where my GI doc, who is a participating provider, is on staff. Of course.

I'll let you know what happens.

Say well!

Beth :-)

OK Cimzia, you have until the NAHC conference, or you're fired!

The Cimzia injections were due on Thursday, but I put them off until Friday, because I had tickets for the midnight showing of Harry Potter and the Deathly Hallows Part 2. Just in case any side effects showed themselves, I didn't want to take a chance of missing or not enjoying the movie. It was great, by the way. My daughter, Amy, and I went back and saw it again at 11 a.m. on Friday. Good times.

So Friday, I took the two Cimzia injections. They hurt, as usual, but other than that, I didn't notice any side effects. In fact I haven't noticed ANY effects AT ALL from the Cimzia yet -- good or bad. Maybe it's too soon. Or, maybe it won't be something that works for me. Any differences I've had in GI symptoms since starting the Cimzia can't be attributed to it, I don't think.

Cimzia didn't prevent the flare up on July 4th weekend -- the one that I got the Prednisone to bring under control. And the symptom relief is directly attributable to the Prednisone, in my opinion. I was grateful for those feeling-better days. Since last time I wrote, I've eased back into solid foods. I went to a bridal shower and family reunion, and ate normal food (well, some of it anyway), and enjoyed it! Hooray! And I drove three hours each, to and from Idaho, without any emergency, don't-know-if-I-can-make-it-in-time rest stops. And GI symptoms didn't make me miss one minute of the Harry Potter finale movie. Mostly, I've been free of cramping and diarrhea until today. And it hasn't gotten that bad so far. Relatively minor at this point, other than needing to stay near a rest room for a couple of hours tonight. 

In October I'm giving three 90-minute presentations at the National Association for Home Health and Hospice convention in Las Vegas. I've presented and taught on a national stage before, and have managed to avoid any embarrassing problems. You know, like having to run from the stage with hundreds of eyes following my unsuccessful attempt to get to the rest room in time (one of my nightmares, of course). But it's always required some extremely careful planning. Liquids only, intense prayers and anticipatory antidiarrheal meds on the day of my presentation seem to do the trick. But I worry that one of these times I won't be so blessed.

Even more important in October will be my daughter, Megan's wedding day. I would dearly LOVE to feel great for that!

Wouldn't it be nice if, by October, the Cimzia actually DID work, and I was symptom-free and feeling like a relatively normal person by then? For that I would be truly grateful. On the other hand, if the Cimzia HASN'T made a significant difference by then, I think I'll fire it. 

OK Cimzia, did you hear that? You've got three months to make a difference! Or else!

Take care,

Beth

Looking up

It's day 9 of the Prednisone taper, which means I'm down to two pills daily. I only have a few more doses. And it's a good thing. The old familiar side effects are creeping back. My feet, hands and mouth have that fuzzy, numb feeling that steroids always bring on for me. My voice is a little hoarse. My attempt to sleep without a sleeping pill last night? Not good. I finally gave in at 4:30 -- took a sleeping pill and turned on Harry Potter and the Sorcerer's Stone. I was finally asleep on the couch before he met the Hogwart's Express. But my GI system is fairly calm right now. No pain. No diarrhea. No obvious tummy swelling. That part's good.

Of course, that could also have something to do with my hesitancy to swallow anything more fibrous than a piece of white bread or banana. Mostly, I've been sticking to full liquids -- instant breakfast, butternut squash soup, frozen lemonade, frozen yogurt shakes -- and squishy stuff -- hard-boiled eggs, potato salad (sans celery and onions), rice, noodles and such. Yesterday I got really daring and ate a hamburger, which I chewed the heck out of. It tasted good, though, and it didn't give me grief later. It's so hard to tell whether I feel better because I'm not running bulky food through my system or because of the steroids. 

Probably both, of course. Before I started this course of Prednisone at the first of the month, nausea and pain were nearly constant. Right now, not so much. 

Of course, there could still be a stricture of sorts that I don't know about.  But for now, it's not bothering me. I fantasize that if I just never eat raw vegetables, whole grains, anything with a peeling or that requires a lot of chewing again, I'll be fine. I can live without those things, right? Maybe I have to. We'll see. 

For now, I'll just take it a little at a time. The Prednisone ends Monday morning. The next Cimzia dose is due Thursday. I am praying for continued direction and working on confidence to keep following doctor's orders to be the healthiest I can be.

OK. No raw veggies (blended or not) for a while.

In fact, no solid food since Friday at noon, when some vegetable soup led to pain and an overwhelming exhaustion. I sent an email to my boss a little after 3 telling her I had to stop for the day. I went to bed and stayed there, ice on my tummy. The Lortab didn't help much.

In addition to pain and exhaustion -- nothing, which is really not that good. I've been there before. It sometimes means an obstruction that could land me in a hospital. Yuck! And once I get to the hospital, they hold me hostage and drip steroids into my veins while I pace the halls for three days until the blockage resolves. Something I would rather avoid. To say nothing (but I will anyway) about how much more the hospital costs. A tapered run of Prednisone pills costs less than $3. Three days in the hospital with an IV can cost almost $20,000.

Which makes more sense to you?

Then there's always the chance it won't resolve if I wait too long to get help. Then it could mean surgery. No thanks.

When I realized where I was headed I called my GI doc to see if he would prescribe a short, tapered run of Prednisone to compliment a liquid diet to nip it in the bud. Unfortunately, it was the Friday before the 4th-of-July weekend. None of the doctors were in the office, and mine was out of town. Good for him. Bad for me.

When the medical assistant called me back, she told me that the doctor on call couldn't prescribe Prednisone for me, since he isn't familiar with my history. Understandable, but disappointing. He said I needed an office visit, or if the symptoms got "really bad" (I wouldn't have called if they weren't) I should go to a hospital emergency room.

Hooray. Just what I wanted to hear.

When the GI specialists couldn't help me, I left a message at my primary-care physician's office. Thankfully, the medical assistant called me at about 6 p.m. to tell me she'd called in a Prednisone prescription from my doctor.

Hooray! (This time I mean it!)

Prednisone has its drawbacks when used long-term -- insomnia, weight gain, false hunger, "moon face", facial hair. But sometimes it's just the ticket short-term to prevent an emergency, quickly quelling inflammation.

I took the first dose last night. After the second dose this morning, the Lortab can handle the pain and things are moving a little. Crisis averted, I hope. I'll try something solid for lunch, pray, stay hydrated and see what happens.

Fingers crossed!

Thanks for reading,

- Beth

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. 

Low Fat AND Yummy

I like dessert.

This is a bummer, since high-fat foods usually trigger GI distress symptoms for me. So I search diligently for lower-fat versions of yummy things. I find that if I keep the percentage of the calories from fat below 30% in whatever I am eating, I feel better than when I don't. And although tempering fat grams by making sure to eat them with fiber is generally a good-health tip, it doesn't work for me, since high fiber is another one of my triggers.

Here are some of my low-fat dessert favorites:

Frozen yogurt - with or without toppings. But if I REALLY want higher-fat toppings, I make sure the yogurt is non-fat and that the yogurt portion WAY outweighs the topping. It is amazing how a little peanut butter topping can dress up a bowl of chocolate frozen yogurt. Also, read the labels on toppings to use at home. I'm often surprised by the low fat ration in some hot fudge and caramel toppings.

Chocolate-banana smoothie made with fat-free milk, Instant Breakfast, ice cubes, frozen banana and a little honey or agave nectar. Sometimes this is breakfast.

Low-fat chocolate cookies with vanilla chips - The only fat in this recipe is in the vanilla chips. Yum.

Fortune cookies--yummy and usually fat free.

Slush made in my ice-cram freezer from Torani syrup and water (1/2 ratio).

Angel food cake with berries and fat-free Cool Whip.

Jello pudding (I like chocolate and vanilla) made with fat-free milk, served warm with fat-free Cool Whip.

Tapioca pudding made with fat-free milk

Ginger snaps

Gingerbread cookies with royal icing (the crunchy kind made from egg whites and sugar)

Meringue tarts filled with fat-free pudding or fruit and fat-free Cool Whip

Meringue cookies

100-calorie snacks (pricier, but great in a hurry once in a while)

Cinnamon or orange rolls (especially the ones my sister-in-law Glenda makes) without icing, or when I add my own, fat-free icing

Rice Krispie treats

Low-fat apple crisp or peach cobbler with fat-free Cool Whip or vanilla frozen yogurt

Banana chocolate chip cookies (more fat than the chocolate ones, but still a low fat ratio)

Fat-free brownie muffins

Reduced-fat pumpkin or banana bread

Yogurt-dipped pretzels

OK, there are some days when I REALLY want a chocolate candy bar. Most of them have way more than half of their calories in fat. But there are a few exceptions.

The lowest-fat chocolate bar I've found is a York Peppermint Patty or Junior Mints.

Next in line is a Three Musketeers bar (not the mint kind).

Then, a little higher in fat than 30%, but way lower than most other candy bars, is Butterfinger. The fat content can be diluted by having it with another fat-free calorie source (like a glass of fat-free milk).

A lot of candy is completely fat free, including most hard candies, Gummi Bears, Swedish Fish, Smarties, Sweet Tarts, and many others.

Now you know how I keep from feeling deprived - and why I don't weigh less.

Life can still be yummy with a few adaptations. :-)

Comfy, Not Frumpy

Nothing I am wearing is hurting me today!

So far, anyway. The day is young.

That may sound strange to some, though maybe not to you, if you also suffer irritable bowel disease (IBD) symptoms. It is rare for me.

Usually, the waistband hurts me, or I continually adjust my bra to try to find the magical way it should be fitting so that it doesn't hurt. Or my arches are sagging painfully in not-supportive-enough shoes. I rarely wear a watch anymore, since the watch band can intensify wrist pain.

One of my challenges with Crohn's Disease is that the fashion industry expects people to be the same size all day long. So classy comfort is usually an oxymoron. Except when it isn't.

Last night, Dave and I went to the mall just for kicks (I know! Isn't he great!?). I found the most comfortable capris ever on the clearance rack in the Christopher and Banks store! They are snug without being tight. The fabric is a nylon-rayon-spandex blend that looks a lot like a polyester-twill blend. They hug gently through the hips with a gradual curve to the waist, with a wide waistband-yoke combination that shares the tension equally though the waist and hips. So far, they move with me when I stand, walk or sit, without any of my usually ever-present adjusting. The cut is flattering. They don't look frumpy! Even my 22-year-old daughter nodded her fashion approval. If there had been more than one size-8 pair, I would have bought more.

Most slacks that don't bind me too much around the middle require constant tugging to keep them up, unless I wear a stretchy belt (A belt that doesn't stretch is out of the question). Then, the belt can hurt if it's tight enough to work. Pants that are tight enough to stay where they should be cut into my middle. But only when I sit, or when my abdomen swells a bit in the afternoon as it usually does once I've downed a few solid foods during the day. So they'd be OK if I stood all day, kept to liquids, and avoided symptom flare-ups (heh). Smoothies for breakfast usually stave off the expanding gut for a while in the morning. But eventually, a girl's gotta eat!

Several pairs of pants and skirts that I can sometimes wear hang in my closet. Most fit loosely. All have elastic or otherwise stretchy waistbands. They range from size 8 -- a good fit on a good day, as long as it stays a good day -- to size 14 -- for less-optimistic days when I need to allow for the afternoon owies. Unless I'm sticking to liquids for the day (when that works) I can usually expect my tummy to swell a couple of sizes or so by late afternoon or evening. Others slacks in my closet are from maternity stores. These are my go-to gear when I wake up with abdominal pain.

Before I found the pants I bought last night, Dave and I walked into a maternity store to see if they had a good sale on slacks or skirts that would work for me. The clerk took one look at us 50-somethings and asked who we were shopping for. "Just browsing," I answered. I'm used to getting funny looks when I try on maternity clothes. Maternity stores don't realize that they could make a fortune branching out into a comfy clothes line for non-pregnant women.

Unless pants and skirts have lots of give in the waistband, I don't even consider them. Most often, the clothes that look best are the least comfortable, of course. Those that look best spend a lot of time on their hangers. I wear them for a few hours, or on particularly low-symptom days. The rare combination of something stylish that also is pain-free is a thing of beauty!

Bras are a whole other story. If I didn't feel so exposed and sluggish without one, I'd swear them off. Instead, I have many almost-comfortable bras at home. Some of them are OK for a few hours in the morning. But in the early afternoon, once my abdomen starts swelling, I readjust repeatedly to try to quell the pain. On those days, I can't get the torture-device-masquerading-as-a-fashion-foundation off fast enough when I get home. Then I put on something over my blouse to conceal details.

The Saturday before Mothers Day, Dave took me to Tanger Outlets' Hanes store at Kimball Junction to let me pick out some Mothers-Day-gift clothing. I started with bras. I tried on at least two dozen over about an hour, discarding immediately any that hurt as soon as I put them on, and settling at last on three that I decided to try. So far, my favorite of the three feels good for longer each day than the other two. But it has spontaneously unhooked itself twice. Not a desirable talent in a bra. The other two -- one is too binding on my rib cage, and the other , well, the jury is still out on that one. I also found a classic black shell dress -- no waist band -- and a complementary jacket. A magically comfortable-while-sophisticated outfit.

Except that it takes on a frumpy look without a bra's support beneath it.

On days when I'm not going anywhere, sometimes I wear overalls without a bra and nobody's the wiser (except those of you who now know my secret). Too bad overalls aren't considered to be high-fashion, power clothes appropriate everywhere. Mine don't look hideous. But they're certainly not sophisticated or beautiful.

So I'm always seeking comfortable clothes. Consequently, I have several pieces in my closet that seemed OK at first, then ended up disappointing me. And I'm WAY excited when I find something that works. Feeling yucky, does NOT translate into wanting to look that way. But fashionable clothing that doesn't inflict or exacerbate pain is way more rare than it should be.

And somehow, I don't think I'm the only one with this problem.

What comfortable, non-binding clothes that also look great have you found?

Medications I Take

Just thought that I should list my medications, in case anyone is looking to compare their treatment with others':
Cimzia
Pentasa
Azathioprine
Canasa
B-12
Ondansetron
Lortab
Flector pain patch
Alendronate
Loperamide
Simethicone
Niacin
Multiple Vitamin
Iron
Amytriptilline
Melatonin
Zolpidem

Too Good to Last

I was a little too smug the past two days. I really did feel good, so I squeezed a lot in, not knowing how long it would last.

Last night, Crohn's made up for lying low for a bit. It returned with a vengeance in the night.

But I am glad it waited until AFTER I finished planting my vegetables, took an outing with my Sweetie, Dave, assembled a new charcoal broiler and had a family cook-out on our spruced-up-for-Mothers-Day deck. All while the rain stayed away. It was great!

Then came last night, with more time in than out of the bathroom between 10 p.m. and 2 a.m. Pain. Diarrhea. Blood. Finally, sleep -- a couple of hours each before and after my 6:30 a.m. Sunday meeting.

Today -- simple smoothies and water to drink only for most of the day. A few more episodes in the bathroom, less bleeding than last night. Wearing a loose-fitting dress for comfort today.

Then, normal food for dinner, which hasn't given me trouble so far. Fingers crossed.

Hopefully, this fatigue, which is certainly profound, abates before I need to start work tomorrow. Going to bed early tonight.

So Far So Good

OK, two days after my first dose of Cymzia, the jury is still out, of course. But so far, no terrible two days of extra-profound fatigue and feeling yucky as expected. Hooray!

In fact, I slept quite well both nights, and woke up better rested than usual.

I'm guessing that I was already so tired most days, that any additional fatigue translated into more success sleeping at night. So it's all good as far as immediate side effects go.

As far as relief -- don't know yet. Yesterday wasn't my worst day ever, thank goodness. But there were a few hours of sort of intense pain. It didn't keep me awake, though. And I didn't need a pain pill. This morning, I awoke at around 6:30, even though it's Saturday. I tried to go back to sleep, without much success, so at a little after 7, I got up and finished planting my garden. I think I'd just had enough sleep and was ready to get up.

It's not a feeling I'm used to having in the morning. But I'll take it.

The sun is shining and the day is warm. We're going to eat dinner out on the deck that Megan and Jeff fixed up for me for Mother's Day. It's beautiful!

:-)

Will Cimzia Work for Me?

So, I'm trying it.

Experts say it could kill me -- double my chance of developing lymphoma. And, it will definitely suppress my immune system, making me more susceptible to infection. They say that choosing it is a matter of deciding that not trying it would, in the end, be worse.

So I've decided to take the plunge.

"Some people go sky diving for fun," Pharmacist Greg patiently explains on the phone. "It is certainly a high-risk activity. I would never do it for fun. But if I were in a plane that was crashing, I would choose to jump with a parachute instead of going down with the plane."

I am a woman, wife, mom, sister, daughter, aunt, future grandmother, neighbor, church volunteer, amateur chef-at-home, nurse, writer, teacher, national conference presenter, auditor, caregiver, mediocre gardener and homemaker, home-spun quilter, traveller, baseball fan, political enthusiast, theater and music fan -- and I have Crohn's Disease.

Yuck. That last one isn't my favorite identity. But in the 12 years since I found out why my gut interferes with so much of my life, it has taken away more and more of my ability to fulfill and enjoy other roles in my life the way I wish I could.

I might as well warn you right now that if potty talk and body-function words offend you, this should stop reading now. I'm not going to mince words or clean up the messes this ridiculously messy problem creates.

A little bit about Crohn's disease -- and my version of it. The Crohn's and Colitis Foundation of America (CCFA) defines Crohn's disease as "a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon." (http://www.ccfa.org/info/about/crohns)

For me, Crohn's disease means I usually have cramping, painful diarrhea multiple times daily. Sometimes I've been unable to get to the toilet in time. Fatigue is a constant annoyance. Periodically, I develop partial food blockages in my small intestine that hurt worse than my normal diarrhea, but continue to build up pressure and pain instead of being relieved a bit by a trip to the bathroom. Those episodes usually end in extremely hard-to-pass stool, followed by familiar explosive, watery diarrhea. Afterward, my abdominal muscles ache for a couple of days from the exertion, and I am exhausted for a while. Sometimes there's a lot of blood in the toilet when I finish.

I've given up on contact lenses because of the sore dryness in my eyes, and I suffer a lot of sleepless nights from joint pain, and from just plain sleeplessness. Slacks and skirts MUST be loose-fitting, preferably stretchable around the waist, or they bind and hurt more as the day progresses and my gastrointestinal (GI) bloating increases. Panty hose are impossible to wear. And I'm forever seeking clothes that feel comfortable, or at least don't hurt, but also look good instead of frumpy. Hard to find.

And for the past three years or so, worse lately than ever, pain under my right rib cage, feels like someone punched me -- hard. I've been searching for the ever-elusive comfortable bra that won't amplify the pain. The high-abdominal pain seems worse when I eat solid foods, so I drink a lot of smoothies, instant breakfast and pureed soups early in the day, hoping to stave off until night the need to take a Lortab. And I've spent a lot of money to find out that my heart, gall bladder, liver and pancreas are completely healthy and normal, according to test results.

Here are some medications I've already tried: Historically, steroid therapy helped my GI symptoms some, but caused me severe peripheral neuropathy and myopathy. Roughly ten years ago, I used Remicade infusions with some success, but ultimately had to stop because of the cost and resistance from my health insurance company. Over the years, I've taken Mesalamine in the forms of Asacol, Pentasa and Canasa with some relief at times. Simethicone to minimize gas and Loperamide to decrease the diarrhea are musts if I'm leaving the house. Loperamide takes the edge off in the evening if the pain has been too intense all day. Ondansetron decreases the nausea and cramping a little when I get desperate during the day. And sometimes, a little peppermint tea will sooth -- especially when I'm feeling deprived because I would really rather have a hot-fudge sundae.

Yesterday, I took my first dose of Cimzia, a new medication that I hope will help. A home-health nurse came to my home to get me started. The day before, Fedex delivered a huge, styrofoam box containing my first three doses, due two weeks apart before switching to monthly. Bubble wrapped and cold, thanks to two still-frozen ice packs, were three boxes holding two pre-filled syringes each.

Yes, each dose requires TWO subcutaneous injections. The reason?
The fatty tissue just under the skin can only tolerate 1cc of medication at once. And Cimzia is viscous. The first injection in my leg REALLY hurt and created a bumpy bleb under the skin that took a while to smooth out. And it took a long time to inject. The second one, in the more abundant fat of my abdomen, was a little less painful, but still hurt.

I waffled for several weeks about whether to start Cimzia, because of the potential long-term problems the drug could cause. Analyses of Cimzia's clinical trials generally state that lymphoma occurred about twice as frequently in Cimzia's clinical trial subjects when compared to the population at large, though it still occurred in less than 1% of participants.

But there's more to the story.

First, the clinical trial literature doesn't generally specify how long the study lasted. And if Cimzia effectively controls Crohn's disease symptoms, I could be using it for the rest of my life. Or until it causes other problems. Or until a cure or a better treatment is found. Clinical trials don't generally last more than several months or a few years. So  long-term effects of the drug are less certain.

Second, I know that young men are usually over-represented in clinical drug trials, since experimenting on child-bearing-age women is a bad idea. I am none of those things -- young, male or of child-bear age. So I wondered how effects of my starting Cimzia at age 50 might differ from study results. So I asked Pharmacist Greg about this, too.

Greg reminded me that the thymus gland, chiefly responsible for immune-system development in young people, atrophies and disappears roughly around age 30. And the clinical study literature did specify that study subjects who contracted lymphoma during the study were younger than that. He said that although nobody knows for sure, susceptibility to lymphoma in response to immunosuppressant drugs like Cymzia might be greater in younger people because of the way it affects an active thymus.

Greg also reminded me of the risks of enduring inflammation that is ineffectively controlled. Over time, accumulation of scar tissue that increase risks of bowel obstruction, continued difficulties with absorbing nutrients, and potential liver damage from drugs I'm now using, have a far greater chance of taking a toll on my health, well-being, and quality and length of life than does Cimzia. He was quick to add, of course, that if I happen to develop lymphoma, the statistics won't matter to me.

I asked how long I'd need to take Cimzia to find out if it will work for me. The literature suggested around two months. So, he said, if it doesn't work, I could simply stop taking it, which would reduce my exposure to it, and hopefully, the risk.

So I decided to chance it.

The story was a little different when Brandie, my home-health nurse came. Having treated several Crohn's patient's with Cimzia, she warned me of a side effect that wasn't in any of the literature. She said that Cimzia usually causes increased fatigue and feeling ill for a couple of days after the injection. And she said that the patients she sees generally haven't experienced effective treatment results from Cimzia for several months. One patient stuck with Cimzia's monthly injections for a year before giving it up without feeling better. But she said most of her patients eventually feel a lot better. They're not cured, but they can carry on normal activities if they are careful about reducing stress, exercising, sleeping enough, and taking their Cimzia on time.

I hope to be one of the success stories. And I hope it doesn't take several months to find out if I will be. So far, yeah, I was tired last night. But instead of being a problem, I slept quite soundly -- through a loud thunder storm that woke up my 22-year-old daughter sleeping across the hall. And I slept an hour longer than planned this morning. Today, I feel maybe a little less fatigue than usual. Probably because I slept well, is my theory.

Anyway, we'll see. I'm hoping for the best. And my plan is to write about it here. Maybe it will help someone.