Crohn’s disease

Friday hospital update

Suzy Taylor Oakley Crohn's disease, health, medical

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.

Thursday hospital update

Suzy Taylor Oakley Crohn's disease, God, health, medical

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’.

Wednesday morning hospital update

Suzy Taylor Oakley Crohn's disease, health, medical

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’.

Tuesday hospital update

Suzy Taylor Oakley Crohn's disease, dogs, friends, God, health, inspiration, medical

The anticipated CT scan hasn’t happened yet. In fact, the doc hasn’t been in yet to order it (it’s nearly 11:30 a.m.).

With the big bag of “food” on his IV pole, Bruce’s blood sugar shot up last night and they had to give him insulin. The second time they checked it, it was OK, but the pharmacist was in a few minutes ago and said that if it shoots up again, they can inject the insulin directly into the bag. Oy.

What’s worse (in my opinion) is the pain when he goes to the bathroom. With all the undescribable things going on down there, he said that when waste tunnels through the fistula (yes, he has another fistula), it feels like acid being poured on his skin. Down there. The nurse was telling us about her hemorrhoid surgery several years ago and commented, “Can you imagine how painful it is to have a shot in your rectum?” And Bruce replied, “As a matter of fact, I can.” (Several times a day, he can.)

Yes, it is extremely painful. And it’s really scary. He also thinks another abscess has formed, and that’s not the same as a fistula. Different problems, both difficult to treat. And he has ulcers in his mouth, not to mention a yeast infection (also in his mouth — thick, furry coating on his tongue, causing him to eat less) brought on by antibiotics used to treat infections. Some of the medicines he takes are ones that counteract other ones. All a big fat hairy scary mess.

So please keeping lifting him up in prayer. We thank you for all the prayers you’ve already said for us.

On a side note, Bruce wanted me to say something we’ve been wanting to tell people for several months. We have thanked you face to face or by proxy at times when you’ve given us food, money, visits, lawn mowing, TLC to our dogs (Mike Tyler especially loved on our furbabies during his visits), etc. And we’ve e-mailed you in groups or individually to say thanks. But we haven’t done what Miss Manners would have us do, and that’s send actual thank-you notes — through the mail, not electronically.

It took us a long time just to get most of the notes written, but we still haven’t gotten to the next step and addressed the envelopes. They’re sitting on the table downstairs. It’s not just a matter of having the time to do it, it’s that anything nowadays is an emotional (and physical) drain. Both of us have fought low-grade depression, mental and physical exhaustion and the accompanying inertia, and have put off way too many things in the past several months, although I suppose that’s a subject for a post on another day.

But to those of you who have helped, in ways big and small, know that your thank-you has been expressed in our hearts — even written on a card — and someday we might actually mail it.

Suzy and Bruce.

Hospital update

Suzy Taylor Oakley Crohn's disease, family, health, medical

We’ve checked in at Springhill, and Bruce is downstairs having a central line put in. They’ll give him his meds and nutrition through a port in his chest instead of his arms. He usually perks up within two hours after he starts getting IV fluids, so maybe he will feel better before bedtime. His weight today is 130 (he’s 6 feet tall), so that’s about an 8-pound loss in less than a week. But not as bad as the low of 118 last summer.

Keep saying prayers. I’m doing my work (and this post) from the hospital this week and can receive e-mails, so feel free to get in touch. He welcomes visitors and calls.

How now brown blog

Suzy Taylor Oakley Crohn's disease, dogs, food, nature

I told you I would have trouble with brown. I struggled to find pictures I had already taken. I didn’t want to go around my house looking for something to take pictures of (I thought of photographing something I deal with daily — dog poo on the carpet — but Bruce didn’t think that was such a good idea), so the file photos I scrounged up will have to do.

I made this pumpkin cheesecake on Thanksgiving Day for a family from church when I was making money baking for people. The pecan praline topping was a little runnier than I would have liked but so good I wanted to drink it all up!

Click to see the apple pie I referred to in Crust-ophobic no more.

And saving the best for last: Below is Pepper in her sunny spot in the office. She appears mostly “black,” but if you look at her closely in the sunshine (in real life, not in this photo), you realize she’s really just very dark brown. And then there’s the obvious brown, which is the reason I chose her for Brown day.

pepper on Brown day

Want to know why I post more pics of Pepper than Salsa? Salsa is in perpetual motion. I told Bruce she is self-winding. In most of the pictures I try to take of her, she’s just a big blur. I still want Whitney to take family pictures of all of us for Christmas cards; we’re going to need someone professional to take the pictures while we try to corral the furbabies.

Whitney and I tried year before last to schedule a photo shoot but could never work it out. And last year Bruce was sick, and we didn’t really want to take Christmas card pics of him in his bathrobe on the couch. However, he used just such a picture for his blog.

Tomorrow is pick your own color. I’m going to surprise you.

The seton is gone

Suzy Taylor Oakley Crohn's disease, family, health, inspiration, medical

If you haven’t talked to me lately (or you’re not a medical professional), you have no idea what that means.

While trying not to gross out all my readers, I haven’t said too much in blog posts about Bruce’s rear end, but this is what we’ve been dealing with for a year. I have been telling people one-on-one about the most recent manifestation of his Crohn’s disease – the fistula in his bottom, which sent us to the hospital for six days in December, or the third time in 2007.

On Dec. 19, he had surgery on a perianal fistula. The surgeon sliced it open, drained the pus (sorry) and inserted a seton. As if Bruce’s bottom hasn’t been sore enough, this seton (a knotted string) has caused even more pain and trouble during bathroom time – and, of course, during sitting, walking and even sleeping time.

The string was supposed to work its way out naturally as the fistula healed. We have returned for follow-up appointments with the surgeon every 10-14 days. On those visits, the surgeon has added rubber bands to tighten the seton and speed healing. After those visits, the pain is a lot worse for a few days. The last two or three times, the doc has said, “It’ll probably come out before your next visit.” But each time we returned, he kept having to add bands. A month ago, when he added the seventh and eighth rubber bands, he said that was a record. Then two weeks ago, he added two more – 10 rubber bands in all.

This week Bruce could tell he was really close to giving birth to the thing, but it just stubbornly hung on. It must have been like a pregnant woman in her 10th month!

And Friday was the visit at which the doctor was tired of waiting. So he sliced it out of there.

I had to leave the room.

Doc used a numbing agent, but it was very mild and the procedure was still painful. And the numbing agent wore off before we even got home. Bruce was in a lot of pain – and still is, but it is better now that he has rested for a few hours and taken some pain medication, something he would never do before last year. I mean, I couldn’t even get him to take ibuprofen for a sprained ankle. But he has taken his pain meds this year, many times without prompting.

He hurts, people.

But the string is gone, and we’re glad.

We had been joking about getting rid of the “string up his butt,” and for days I had my headline already written – “No strings attached” – but it didn’t seem so funny after I saw him nearly crying yesterday (okay, he actually cried for a few seconds, but I’m not sure he’d want me to tell you).

So, if you read his blog and he writes nobly about how strings up your butt can make you philosophical, believe him.

But also believe me when I tell you that philosophical is not the only thing he has been feeling lately.

And, for those of you who have been asking, we are still waiting to hear whether Monday’s CT scan revealed another fistula. His GI doc is supposed to get the results “in 3-5 business days.”

CT scan

Suzy Taylor Oakley Crohn's disease, family, health, inspiration, medical

Bruce will have a CT scan Monday afternoon. We are to be at the hospital by 1:15. Please pray for him.

He has had a sore, swollen area on his hip for several weeks that he keeps mentioning to the doctors, and they simply say it “didn’t show up on the scan.”

But that was two months ago, and the area on his hip is troublesome. He is still trying to heal from the fistula they did surgery on in December, and this other problem could be another fistula. It also could be a pulled muscle. Without getting too graphic, I’ll just say that he has such a sore bottom that when he sits on the potty (which is fairly often), he tenses up to 1) make everything “come out ok” and 2) keep the pain to a minimum, so he possibly has strained a muscle in that area.

So he mentions it every time he has an appointment with the doctor-of-the-week, and they usually tell him nothing showed up on the CT scan. But it has been worrisome for far too long, so today the GI doc scheduled a scan.

Even if it turns up nothing, at least they can tell us it isn’t another fistula.

If you click through to the Crohn’s & Colitis site, you’ll have to scroll a bit to find the explanation of fistulae. They are found mostly in the intestinal tract, but one doc said he had seen them as far down as the thigh.

A fistula is evil and scary. Please pray that this is a muscle thing, not a waste-tunnel thing.