Living with Crohn's disease

Here is a tiny glimpse of what Bruce deals with when he is in a Crohn’s flare-up, which has been the case for the past 17 months. He was diagnosed nearly 10 years ago, and we learn something new every time he gets sick. Click the link above, and listen to the voices of those living with the disease. Perhaps their stories will give you a little bit more insight into Bruce’s situation.

And if you click to Bruce’s blog, please know that he’s really a nice guy; he’s just gotten a little angry lately as he’s been confined to the house, with only the dogs, the TV and the Internet to keep him company.

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4:22 p.m.

Bruce and I drove away from the back door of the hospital at 4:22 p.m. That’s 5 1/2 hours after the doc said he could go home.

It’s 6:30 p.m., and I have dropped off his prescriptions, filled the car with gas (can’t expect these lower prices to last forever!), gone back to the store and picked up his new meds and a few soft foods, and I’m back home ready to work for the rest of the evening. My two busiest days at work are Tuesday and Wednesday, so please pray for my strength and endurance. Now that Bruce is home, I have to actually go to the office the rest of the week. I’m sooooo tired.

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The doc was in at 10:45 this morning and said Bruce could go home. At 1:30 I said to Bruce, “Gee, it’s taking them forever. They haven’t even removed your port yet.” He reminded me that last time he didn’t go home until 7 p.m., but I reminded HIM that the doc didn’t give that order until 4 p.m.

At 3:30 today, I went and asked a nurse what is the average wait time for a discharge to be processed, and she said it depends on when the discharge nurse sees the order.

She checked on it and discovered that Bruce’s chart had been put back in the rack and no one had seen the discharge order!


Tonight I will let you know what time we actually got to leave this place. (Too bad we can’t get them to deduct a few thousand off our bill because of this. Believe me, I’ve tried to get charges reduced because of hospital incompetence. It’s a losing battle.)

In the interest of fairness, I should say that overall we have been treated well here. We know these things happen, but we are so ready to get home. Our furbabies will be happy to see Bruce, and I will be glad to have him there with me tonight.

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The doc was just here. He wants to skip the Humira today, send Bruce home and try him on the new drug, Cimzia. That will require letters, insurance approvals and ordering, plus we’ll have to visit the doc’s office for the injections about once a month. We did the Humira injections at home by ourselves, but that will not be the case with Cimzia. Let’s pray that the new medication works. Of course Bruce will also be on his two maintenance drugs (which he has taken for nearly 10 years), plus steroids and antibiotics for a while.

The hospital staff still has to come by and take the port out of his chest (where he’s been getting all the medicine and nutrition) and do all the discharge paperwork, so it may be this afternoon before we leave, but things are looking up.

Thanks for the prayers, but please keep them coming.

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Monday morning hospital update

Factoids from the beginning of Week 2 in the hospital:

  • It’s 10:15 a.m., and still no word on the Humira.
  • The doc said yesterday that he would be in around 11 a.m. today. I will update you if there’s anything to tell (maybe that he will discharge Bruce if all goes well with the Humira???).
  • Bruce’s last bag of IV food will run out in the next hour or two, and he’ll probably be off of all IVs after that. It’s a sign they’re getting ready to kick him out. That doesn’t guarantee he’ll go home today, but they’re weaning him off stuff …

The challenge once we’re home will be to keep his weight up. I have trouble getting him to eat at home. When I call him from work, the last thing I usually say is, “Eat!” Left unsupervised, he would starve to death. I’ve often said, “I live to eat, and Bruce eats to live.” That crazy skinny man!

I don’t get it. Do you?

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Sunday morning hospital update

I was just about to write that the doc hadn’t been in today, and in he walked.

He’s going to ease Bruce off the IV fluids (actually, they’ve been doing that already, although they did give him the lipids again this morning) and give him a dose of Humira today, along with Benadryl to ease the typical injection-site reaction from the Humira. He’s also increasing one of the maintenance drugs Bruce has been on for nine years — the one that, in my opinion, started the downhill slide for Bruce when the doc tried taking him off of it in January 2007 because it puts him at higher risk for cancer. (We now have a cancer insurance policy.)

He said Bruce can possibly go home Monday, unless he starts getting worse again with this new drug therapy — in which case, he’ll consult with the surgeon again.

The doc just came back in and said the hospital pharmacy doesn’t have any Humira, so it may be Monday before they can get any. (We have also discussed the newest Crohn’s drug, but I imagine they would have to order that one. His partner has used it on some of his patients, with promising results.)

Still a waiting game. Keep the prayers coming.

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Friday afternoon hospital update

The GI doc was just here (2 p.m.). He’s keeping Bruce in the hospital until “Sunday or Monday.” Then he’ll switch him to oral antibiotics and steroids.

Doc mentioned trying the newest Crohn’s drug, which would be a maintenance medication. The disadvantage of the new drug vs. Humira, which we injected at home every two weeks, is that the new drug is administered at the hospital. Bruce had inconclusive results with Humira. Because he had just had surgery, which we believe was what finally did the trick on the last fistula, we never could tell whether the Humira was doing any good. Also, he had an injection-site reaction every time he had a dose of Humira. The area would swell and itch. We would be willing to live with that if we thought the Humira was really helping, but the doc is ready to try the new drug in a few weeks. More on that later.

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Friday hospital update

Bruce slept almost seven hours last night! He was “in and out” during Michael Phelps’ Olympic events but managed to see him win his sixth gold. After that, he was “out” and didn’t wake up until 5 this morning.

He has gained 10 pounds since Monday. That should be “good news” but is a little worrisome (to me, anyway) because it’s so rapid. He lost 6-8 pounds last week (in about six days) and gained 10 in four days this week. Rapid weight loss and gain is hard on the ticker (and other systems). Also, a lot of the gain is in fluids (he calls himself a water balloon). But praise God he is gaining.

His blood sugar just now (11:45 a.m.) was 182. The nurse just left the room, probably to go get another insulin shot for him.

Bruce started eating solid foods at lunch Thursday and has done pretty well with it.

The surgeon visited Thursday evening (right after I went home to feed the dogs, just as I knew he would). He said he didn’t think surgery was indicated at this time but that he would see Bruce in his office after he’s discharged from the hospital. The doc can see Bruce’s butt better in his office, with the proper lights. So that’s an extra charge for an office visit because he doesn’t have a good enough light in the hospital.

The gastroenterologist hasn’t stopped by yet today, but I imagine he will start talking about sending Bruce home. My guess is that Bruce will go home Saturday.

Bruce is always very sick when he comes to the hospital, but, as is often the case when he has a roommate, the roommate is sicker. (He wrote about that in February.) And this roommate has never been hospitalized before, so it is a whole new world for Mr. G.

We have become the “experts” in how this whole thing works, although I hope we are humble enough to realize that’s not really true. We have learned a lot about how this hospital works (at least the daily care part of it, where you learn the nursing staff’s names and they learn yours, you build trust and care, you share family news, such as the announcement of the nurse’s week-old baby, whom he hates to leave every night when he comes to work — the part that makes the difference between pill-pusher/pill-taker and true caregivers and care receivers), but we know we have a lot more to learn. We have obtained a lot of medical information in these nearly 10 years since Bruce’s diagnosis, but we are not doctors, not pharmacists, not dietitians. Not medical researchers. We have daydreamed about pursuing advanced medical degrees so we can help understand and fight this horrible disease. We have seen firsthand, many times, how there are just not enough hands to take care of everyone who needs it.

But we try do our part, giving small bits of information, even comfort, to the “new guy,” who sees this all as one big mystery. We hope it helps.

As for my part, I try to remember what a comfort it is to be in the care of the One for whom none of this is a mystery.

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Thursday hospital update

First, let me say that my prayers go out to the family of Bill Gwatney, who was murdered yesterday at his office at the Arkansas Democratic Party headquarters in Little Rock, and to the family of Timothy Dale Johnson, the man who killed him and was shot to death by police.

As for Bruce, here are a few random pieces of information:

My husband is so in tune with his body. He knows the difference between the lipids dripping down through the IV (the fats make his bottom parts more supple and less painful when he has to visit the potty) and the bag with sugar and insulin. He gets the lipids only every two days, so since they took that off last night, he is having more pain on his bathroom trips. With the non-lipid bag, his mouth is drier and he has more pressure in his abdomen. And, even though he’s getting carbs, he’s more lethargic. He usually can tell the difference quickly in a change in medication or nutrition. His body systems are a delicate balance, and it is amazing what he knows about it. Now, if only he could figure out the cure for Crohn’s disease.

He had a really low blood-sugar reading yesterday, but we are now convinced the test was done incorrectly. The pharmacist said Bruce would have been trembling and disoriented if the reading truly had been 56, yet he didn’t feel anything out of the ordinary.

The lowest the blood sugar has been this week on the IV fluids is 142. The high was 232 around 6 p.m. Wednesday. He has had several insulin shots this week. This is a new experience for us. He hasn’t had these issues on any previous hospitalization.

This is Bruce’s sixth hospitalization since he was diagnosed with Crohn’s disease in December 1998. It’s the fourth hospitalization since May 2007.

Last night, around the time of the staff’s shift change, we heard a bit of drama two doors down. First there was unintelligible yelling, followed by, “Security! Security!” and more yelling. I peeked out to see several nurses and a couple of visitors outside the room. Turns out, one patient was trying to sleep, his roommate’s visitors had had too much to drink and were being too loud, the sleepy patient asked them politely, then later a little more forcefully, to be quiet, and it escalated from there. They had to move one of the patients to a different room.

We hear and see a lot of funny and strange things here at Springhill. I could tell you some hospital tales. I’m debating about one in particular from last summer’s hospital stay. Not sure I can tell it in polite company, especially if you’re reading this while eating breakfast.

I’ll report more later. The surgeon is supposed to visit today, but the gastroenterologist doesn’t think he’ll want to cut on Bruce’s butt this time (he did in December). If no surgery is ordered, Bruce will probably go home Friday or Saturday loaded up with prescriptions for antibiotics and steroids.

Keep prayin’.

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Wednesday morning hospital update

Bruce had a difficult night.

They took him downstairs for the CT scan between 7 and 7:30 Tuesday evening. That went OK, but he had some “lurching” in his torso, probably from the solution he drank, while they did part of the scan. Lurching is my word for it after he showed me what happened (I don’t want to call it a convulsion, although it certainly looked like it). He would probably have a more eloquent description. He usually does.

At 8:45 p.m. he asked for pain medication (unusual for him). He immediately started feeling sleepy but was still awake when I left an hour later. The nurse was in and out a lot during that hour, changing his feed bag, answering some of my concerns about the spikes in his blood sugar, taking his vitals, etc.

This morning he told me the pain shot had made him feel strange. He also had to have nausea medication, which made him feel strange in a different way. He didn’t sleep much and looks and sounds weak this morning.

On a positive note, he ate most of his breakfast (oatmeal, a cherry ice cup and a small carton of 2 percent milk, which he said tasted strange). He didn’t drink his apple juice, but the nurse said she was impressed that he ate as much as he did. He has gained 3 pounds since Monday (up to 133 today), but I think a lot of it is the fluids coursing through him. He usually gains weight in the hospital but starts losing it again when we go home.

He said his tongue is furrier today, but in his opinion when they start getting rid of the fungus in his mouth, his abdominal symptoms get worse. He thinks the fungus wards off bacteria elsewhere in his body.

The human body is a strange thing, and Crohn’s disease is a mysterious disease.

The pharmacist just came in and said he’s adding insulin to the next feed bag and will adjust a couple of other things. The pharmacists have been very attentive, and I appreciate their diligence.

Keep prayin’.

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