Remicade experience

Update

2007-10-24T21:46:00.000-05:00

I went back to work full time in August.
End of the year crunch was in September and I survived that....

I still have not completely recovered, mostly because of difficulty breathing and pain in my back.
The former is probably due to asthma that I had...which is now more forceful with the additional scarring and less volume.
The latter is likely due to my muscles being weak and my spine slipping out of proper position.

I'm flying to present at a conference in a couple weeks. 5-hour flight...needless to say, I'm a bit nervous.
I know that I should be fine, but I still get winded easily and I worry about what could happen at high altitude.
Probably not a big deal...more anxiety than anything I guess.

Recent Insomnia

2007-06-25T16:57:00.000-05:00

I've had insomnia for the last few days. The earliest I've been able to fall asleep is 3am...and last night I couldn't fall asleep until 5:30am even though I didn't sleep during the day.

I'm starting to think more and more that my insomnia is a withdrawal symptom.
Honestly, the only reason I'm not 100% sure is that my ego would like to believe that I'm smart enough and strong enough to avoid becoming addicted to anything. Even if it is mild like in this case...it's not like I have the DT shakes or anything.

Why do I think this?
I was on Dilaudid (intravenous) for three weeks; I always took it to go to sleep, otherwise it wasn't happening.
And I'll say this...I can COMPLETELY understand how people can get hooked on IV drugs. In my case, I felt a euphoric rush within 30 seconds. Brain rush, etc.
BTW - Dilaudid is 8 times more potent than morphine on a milligram basis...which is why the following mg's seem low.

When they put me on the oral medication, I didn't get that rush. And it didn't seem to work as well.
I was on the Dilaudid oral for two weeks before I stopped it cold turkey mid-last week.

I'll say this. Except when I was first given the narcotic, I did not take it as often as I could. Especially since I was getting a euphoric reaction to it. And then I asked them to cut the dosage to the point where it still worked. I was able to take up to 2mg every 3-4 hours. Typically I asked to take 1mg...2mg if it was really bad. And I rarely was asking them for painkillers before my time was up. When it was early, maybe a handful of times over three weeks, it was because I asked for 1mg and it wasn't enough. One time it was really bad and the doctor allowed them to give me up to 4mg. I took it at that dosage once and then dropped back to 1mg several hours later.
I acted this way because addictive behavior runs on my Mom's side of the family...and since I take my health issues from her side, it's likely I have the same tendencies. It's one of the reasons I don't drink. (And probably a big reason I'm such a control freak with my actions)

When I got home I was using this pain medication because that was what was prescribed. I could take 2 tablets every couple of hours, but I only took one...and only when I needed it. Sometimes I only took one or two a day.
However, I always took it when I was going to sleep. Why? Because my ribs hurt a hell of a lot more when I was lying down...even if it was on the other side it still put pressure on the ribs they spreaded as well as the muscles they cut. Plus, the staples were bothering me as well.

Even though I was very rational about how to deal with the Dilaudid. I don't think it is a coincidence that I have been having trouble sleeping since I stopped taking the Dilaudid. Especially since I always took a dose to drop the pain down so I could sleep. Another warning sign is that 1 pill didn't do the trick with the pain. (I never went to two pills, because I recognized that tolerance was a warning sign. In fact, I stopped taking them about the same time I realized this.

Looks like I will be calling my Primary Care Physician tomorrow to figure out what to do.
Probably the only thing to do is just ride it out. Looks like I will be working from home most of this week.

Saw thoracic surgeon today

2007-06-20T23:29:00.000-05:00

He's the type to run in and out in under 60 seconds. But I got a copy of the Operative Report to find out what they did.
He's thrilled with my progress and I don't need to see him anymore.

So here is the report, minus the description of the procedure

PREOPERATIVE DIAGNOSES
Left empyema versus lower lobe abscess

POSTOPERATIVE DIAGNOSES
Both of the above mentioned, left lower lobe pneumonia having matured into an abscess with perforation under the left diaphragm, and signficantly trapped left lower lobe excavating the left lower lobe along the basilar component and not involving the superior segment

PROCEDURE
A bronchoscopy (negative), left thoracotomy with partial parietal pleurectomy, decortication of remaining left lower lobe excising the basilar component of the left lower lobe with [staples and sewing] and removal of the remaining debris with cultures taken both of the pleurial fluid, the abscess cavity, and the tissues submitted for frozen and final pathology (no evidence of malignancy)

Three chest tubes were placed for drainage

FINDINGS
No air within that portion of the affected lower lobe but indeterminate and more likely empyema than abscess, but always possible since the empyema is secondary to pneumonia process. The endotracheal and endobronchiad anatomy were perfectly normal bilaterally with no undue secretions. No masses noted.

Aside: according to the pathology report, the tissue removed was 13x6x6 cm and weighing 161 grams.
Seems like a lot...
The abscess on the lung was 5x4 cm

Update

2007-06-20T02:00:00.000-05:00

I can't seem to sleep tonight, so I'm catching up on things I've meant to do.
I think my stay in the hospital really messed with my sleep. I'm so used to being prodded in the middle of the night every hour or two that I can't seem to get back to a normal sleeping pattern.

So I've been out for two weeks and the side still hurts. Of course, they gutted me like a fish and used rib-spreaders...and peeled my lung like an onion...so what should I expect?

I am starting to go back to work on a part-time basis. I need to be productive to have my morale improve. We will see how this goes on a day-by-day basis. I can work from home at times, so that helps.

Got my first bill from the first hospital. Note that I spent 17 days with conservative therapy and then transferred to the other hospital where they did the major surgery (11 days).
17 days, most of which in ICU, totals $77,000. My cost is $150. Thank God for insurance. Had I been on my student insurance last year I would be responsible for 30%.

My guess is that when all is said and done, the total hospital bill will be $175,000.
No big surprise that the leading cause of bankruptcy in the US is medical bills.

One major plus is that my colitis seems to be under control.
Without taking immunosuppressants.

Granted, I am taking prednisone...but even that has been reduced to 20mg per day.

At this point there are minimal to no signs that I have UC. I don't know why or how, but I am grateful.
Perhaps I'll be able to avoid surgery after all.

The downside of Remicade

2007-06-04T22:42:00.000-05:00

So here is why I haven't posted in a month.
May 7th I was taken by ambulance to the hospital because my breathing was short and thready and my chest was in a lot of pain.

I didn't think it was a heart attack, but did think I was having an allergic reaction to the Remicade, so I had them take me to the hospital where my GI is the head of their depatment.

Turns out that the large amount of immunosuppression allwed me to get pneumonia and pleurisy and a nice lesion on my lung. This plus being anemic doesn't work well.

One day in intermediate care (in between intensive care and normal hospital) and I reverted to the way I was when I came in. I honestly thought I was going to die. A move to ICU, broad spectrum antibiotics and breathing therapy (useless), x-rays, CT scans, and an eventual thorocentesis (where they missed three times...yes, you are awake) didn't fix it. So after 19 days at hospital #1 (17 in ICU) I was transported to a hospital where they had a thoracic surgeon on-site.

I was supposed to have a VATS procedure done (video assisted thoracic surgery). However, the fluid, giant pus-ball and the fact that they had to peel back more lung than expected resulted in a much larger open cut. Roughly 40-50 staples and three chest tubes to get at all the areas.

Needless to say, it's been a rough month.
I'm now home recovering. Colitis is a mess. Not sure what we can do at this point but take the whole colon. If it is colitis.
You see, in the treatment the flex-sig showed growth more common to Chron's Disease. In which case surgery is a bad option.
I'm going to see the GI (and about five other doctors) next week. Colonoscopy and biopsies to be had in the next two months.

A lot of scary decisions to be made. But at least I don't feel like I'm dying (like I did at two points in the hospital).
And at this point I need to get over the pleurisy/pneumonia. That's my main focus.

Sorry to be the bearer of bad news, but Im one of the rare cases of the bad, bad things that can happen when taking Remicade.

Remicade treatment postponed?

2007-05-06T20:15:00.000-05:00

I've been off the blog for a while as there has been a lot going on.

On the negative side, I got sick on Wednesday. Actually, it probably started as side-effects to the Remicade treatments and turned into something worse. In the middle of the night I was experiencing severe chills, then night-sweats. When I woke up there was extensive muscle and joint pain. Toward the end of the week it was bad enough that taking anything more than a shallow breath caused pain from my left shoulder to my back. Having had asthma in the past, I know not to panic in these situations and I can ride through it. However, it's not a good situation to be in.

Since Wednesday and Thursday were research presentation days to the entire company, I was on my feet for most of the day...outside in a tent. Also, I started a gluten-free diet on Sunday...so I've been taking in less calories (less energy). I thought these might be the causes of it. However, between Friday and Saturday I developed a fever of 101.5; in fact I got incredible chills and saw purple veins in my arms and legs...like I had been in the early stages of hypothermia. Very strange...and it doesn't help that I live in the basement. Many layers of clothing took care of the chills...but I was kept up most of the night with pain in my left shoulder.

After talking with the on-call doctor on Saturday morning, I learned two things:
1) Aches, pains, chills, night-sweats are common...especially right before a Remicade treatment.
2) The fever is a concern, but on its own is not a terrible terrible thing. If it doesn't stop before my next treatment I'll have to cancel.

To me, any fever is of great concern as I can count the number I've had in he last five years on one hand. And only once as it gone above 100.5 (my normal base temp is 97.5). I've also been sweating constantly for the last couple days...which is annoying.

On the positive side, before all of this happened I was feeling good enough to ask out someone I have a bit of a crush on. I can't say it is a date, as the last I heard (a couple months ago) she had a boyfriend. I'm expecting this to just be a friendship...and I'm ok with this. She was up to going to a concert in a couple weeks...and the next day I felt and looked better. It's amazing how much out emotions support (or detract) from our health.
On Tuesday I learned that she would be out of town and couldn't make it...
Is it a coincidence that my health dropped off the next day? Who knows.

The presentations to the company went well...though I learned that the science behind what I presented was flawed. Seriously flawed. But since I was just showing a proof-of-concept for my piece, it's ok.

Friday GI appointment

2007-04-21T07:32:00.000-05:00

Needless to say, my specialist was concerned when I left a message explaining how limited the beneits were.
At the time I would have a day or two of benefits and then it would revert to the way it was.

This week I had a breakthrough...and I'm going to start playing around with my diet more. I think it will help.
The thing is it was obvious that the Remicade was helping; my GI was impressed that my back cleared up in three days. He expected that it would still be there two months after the fact as that is the traditional time it takes with conventional treatment.

In the end, he's happy with the progress. And I am now as well.
Apparently only 40% of Remicade patients see full impact within the three initial (ramp-up) treatments.
Most of the 60% see improvement, but not enough to call it a full recovery. Of these, most continue to see benefits and will improve up through six months of treatments. Apparently the benefits keep ramping up as time goes on. It's not a one-and-done analysis.

In short, IF YOU DON'T SEE BENEFITS RIGHT AWAY, FEAR NOT. It make take some time.

He's talking about eventually getting off the Asacol and Imuran as these are doing little compared to the Remicade.
That would be great.

In the meantime he's decreased my Prednisone from 30mg to 20mg daily.
Whether my blurred vision is because I'm overdue for a new eyewear prescription (been 3 years) or the prednisone is up in the air. In any case, I hate the impact the corticosteroids are having...and I want off.
So lower is good.

In all...a promising visit.

Why I've been off the blog

2007-04-19T21:02:00.000-05:00

After a few days of feeling good...things went back to the way they were.
I was fairly sure that it was diet-related. Something was bothering my system...but I wasn't sure what it could be.

A couple days ago, the night before an all-day training seminar with few breaks, I decided to start buying some liquid drinks to supplement my diet. I figured I would eat less solid food and have more liquids. I'm not even sure why I tried it...

In the meantime I set up a GI appointment for this Friday to talk about what we should do.
Of course, today was a great day...and it seems like my new diet has helped a lot.

The problem is that I'm eating the same things I had on Monday and Tuesday.
Why break a good thing?
So it's Chicken Caesar Salads (or just salad)...and a mexican rice/cheese/chicken/lettuce/tomato dish from a neighborhood place.

I know that I should have a more diverse diet...but I can't complain with the results.
I'm not sure if there is gluten in Caesar dressing...but I'm wondering if my cutting out gluten (or another thing) has repaired things?

I mean...things aren't perfect, but they are a far cry better than they have been.
And considering my social anxiety issues (which made training hell for the first three hours)...and the Virginia Tech tragedy...this has been a pretty stressful week. Things should be worse.

Go figure.

Things improving

2007-04-12T22:10:00.000-05:00

I'm not going to say that things are great...but today was the first day in months where it didn't feel like I was suffering all day.

No more blood, which is a good sign. And it seems like things are slowly coming together.
Whether this is true, time will tell. But it is exciting.

I'm in the process of planning presenations and conferences to go to over the next month...and it is nice to say that I might feel comfortable about _doing_ these things.

The day after...

2007-04-11T18:18:00.000-05:00

Warning...for those who don't want details, skip this one...

My current issue is with severe proctitis.
I used to have pan-colitis and you could see an old ulcer on my scope from that condition.
To treat the proctitis, they put me on Canasa suppositories (in addition to Imuran and Asacol)...and things have gotten worse since that period. Is this because of the colitis worsening...and the resulting inflammatory issues? Or is it a reaction to the Canasa. Even corticosteroids, which I've never needed, failed to help.

The last two weeks since my first infusion were not inspiring, but only because I was thinking about it in the wrong way.
My lesions on my back cleared up in three days. And now that I have an official diagnosis (Sweet's Syndrome) that links it to the colitis...we can sufficiently say that the Remicade helped this.

My colitis, on the other hand, was not getting better. The frequency was better, but there was a lot more blood and mucus and very little solids. I thought the Remicade wasn't helping, but then realized that there were so many systemic issues going on that it may take more time than normal.

So after my second infusion I was curious to see how things changed. In addition, because I screwed up, I ran out of Canasa as well.
Last night and this morning seemed to be the same or worse...except there was a lot of air as well. But this afternoon I saw a marked improvement. It was a lot better all around. This makes me think that last night and this morning my colon was blowing all the old garbage out of my system. This seems to make sense as my back went through the same process...soon after the infusion the skin started molting off all the "bad skin" and left the "good skin" behind. I suspect that this is what is happening to me internally.

Not to mess with what is working, I think I'll call the GI tomorrow and let him know I'm not taking the Canasa for a week...just to see what happens. hen maybe try it for a few days to see what happens. I need to know if the Canasa is aggrevating it or not. It would be good to know.

On the plus side, if this afternoon is a barometer of things to come, I expect to see improvement over the next couple days.
And this gives me hope.

Infusion #2

2007-04-11T17:53:00.000-05:00

I know there was a promise to keep better track of what happens during an infusion, but I was out of it.
So there will be some fictitious additions to this based on what I remember from both procedures.

My appointment was for 1300, so I was brought back a little before then to get weighed. They have to mix the treatment according to mg/kg...I think I'm at a 5mg/kg dosage, but I could be wrong.
I'm not sure how other infusion areas are set up, but mine has three padded chairs next to each other. No beds, but there are footrests and the ability to raise your feet. So it's like an expensive Samsonite chair. I bring in my computer to just surf on the neighborhood wireless network with my non-IV hand.

At 1300 I was given a Zyrtec capsule and two Tylenol Rapid Release tablets. One of the side-effects of the treatment is a headache...and there is always a risk of an allergic reaction. These tablets are meant to minimize the effects.

At this point you get the "Tell us if you have a headache, itching, feel nauseous, etc."
Of course, I developed anxiety issues this past year. It's hard for me to tell the difference between anxiety and these symptoms...but, OK, I'll do my best.

At 1310 the IV was put in. A big prick this time, probably because I was clawing the desk and didn't keep my fingers straight.
At 1311 I'm noticing that my hand is hurting more and more...and blood is coming up the tube because the IV isn't flowing yet.

At 1312 they connect a saline bag and the pain in my hand drops off. As always, I get that bitter smell in the back of my throat when the saline is connected.

Some infusion places will not have a separate bag for the saline and Remicade. The reason my place chooses to do so is that it allows them to turn the Remicade off and have something flowing if need be. In addition, they can add things to the saline bag if need be.

At 1315 they check my blood pressure (116/83) and connect the Remicade. The flow is set to the lowest setting and it takes FOREVER for it to drip all the way down the line.

They wll check your blood pressure every 15 minutes or so. As time goes on they will increase the flow rate. (I've heard that some places don't ramp up like this and flow in at a constant rate)

At 1335 my BP is stable (115/78) and they increase the Remicade flow.
The weird thing is that I can feel the change in flow once it hits my hand. Either my veins are sensitive or I'm good at deceiving myself. Either way it's kind of cool.

At 1345 my infusion specialist is again mentioning how tired she is. How it's so quiet.
In our place there is a small television with a DVD player, so I suggest that she put in a movie. I was going to sleep, but I'd rather have good care...so she put in a movie and was more awake the rest of the day.

1350, 1415, 1435, 1500 my BP was checked and...depending on how full the Remicade bag was...the flow rate was increased.
At 1415 I started feeling a little nauseous and dizzy...but I was sure it was because I had little to eat that day and was a little anxious. (Sure enough, after the treatment I ate and felt better)
Pretzels and water didn't seem to help. Do you think they would get mad if I brought in a cafe mocha and a biscotti?

At 1515, two hours in, the Remicade treatment is done. They switch over to the saline bag which takes another 15 minutes to flush out.
As a warning, you may feel a cold burn when the saline comes in...I'm not sure if it is the difference in flow rate or what.

At 1530 I sign my papers and head out the door...glad to know that I only have to pay $20...and my insurance company is picking up $4975.

Is this better or not?

2007-04-06T21:56:00.000-05:00

I've noticed that my symptoms are worse over tha last several weeks, but the frequency is reduced.
It seems to lend support to the celiac disease diagnosis...because the Remicade wouldn't do anything to help that.

I've also noticed that my asthma has returned. I haven't used the inhaler in a few months and I've needed it three times this week. However, the flowers are all coming out...so it could just be my allergies to pollen that are flaring that up.

Ack...too many variables...

I'm at that frustration point where I just want answers. And solutions.
But this too shall pass.

Podiatrist appointment

2007-04-05T16:39:00.000-05:00

Well...the running goals may be delayed indefinitely.
I've had swelling in my right foot and ankle for the past four years; it started with a pop when I stretched in the middle of the night and I couldn't put weight on it for two days. The original diagnosis was oblique tibial tendinitis, but they never did an MRI.

My new podiatrist seems to think it is a cartilage tear and is scheduling an MRI and is sending me to an ankle specialist.

I should be disappointed. However, this is why I am doing all the preventative care now. We'll fix it and then I'll be better prepared to handle the wear and tear.

Needless to say, I'm chomping at the bit to get back to some vigorous exercise...
These diagnoses can't come soon enough.
In the meantime, I am cleared to speed walk with an ankle brace...

Anxiety, UC and goal setting

2007-04-04T18:13:00.000-05:00

I mentioned in passing that a year ago I was diagnosed with social anxiety. I'm assuming that UC only enhances this condition, but it isn't the sole cause of it. On my other blog I have listed all of my anxiety-related issues, so I won't rehash them here.
I will say that I spent a lot of my life pursuing goals as a way to keep my mind off of the fact that I was terrified of people. Interestingly enough, those goals allowed me to become my university student body president and captain of the debate team.

President, captain, terrified to ask a woman out on a date.
Spoke to thousands in a single setting, loved competing on the pitch, invited to represent the university, but always felt off in social situations.
Go figure.

My recent bout of anxiety started coming out right about the time I obtained a full-time job and quit my RAship in grad school.
It was a perfect situation...the job I hoped to get AFTER my PhD...and the company would support me in getting my degree.

Soon after starting I went from feeling queasy in meetings to outright panic attacks. Start to finish it took a week.
I couldn't get a haircut because I was shaking so much when I tried to leave the house.
But why? Great job, great pay, great benefits. I loved my new job and was excited...so what was the deal?

I think that getting what I was looking for caused all of this to come out. No longer was I focused on the prize...I had it. There was nothing to distract me from my unhappiness about my social anxiety issues. Especially with dating. And with other things.
So I eventually had to face things head on.

I probably need to do more to address these issues, but I have made some strides in the past year. I was dating a little bit and was exercising on a regular basis.

Then the flare-up hit and I haven't been on solid ground since January.
It's hard to try and date under optimal conditions; when things are out of control (and it is still bad) I feel like Sisyphus. And I'm not cleared to exercise until the diagnoses come back. That plus the prednisone makes me feel "not so pretty."

And yet I decided to buy tickets to concerts this summer, assuming that things will be better. And I'm planning on asking out someone to said concerts (by purchasing two, I force my own hand)...

I think it is hope that gets us by. I believe that some therapy (Remicade, gluten-free diet, etc) will eventually work. I believe that I'll figure out the social anxiety as well. Given enough time and effort, I think these things sort themselves out.
At least I hope so...

Things improving or so I hope

2007-03-31T22:04:00.000-05:00

It was an interesting morning. Summer tickets were on sale for the local outdoor theater, so I went there at 9am for a 10am ticket window opening. According to everyone I know, I should have been tenth in line. I was about 110th.
Considering how rough my colitis has been the last couple days, I wasn't thrilled about standing outside for a couple hours. However, even though it was a rough morning...it was a decent day.

And based on how I'm feeling (and bathroom visits) it may be that the infusion is kicking in. It's encouraging to say the least.

Earlier this year I decided I was going to run a 5K this year. Even in my most fit condition, when I was swimming 8000 meters a day, I never ran more than 1.6K. And this was before I had knee surgery, shin splints, and tendinits in my ankle.

But lying on the couch the past couple months has changed my perspective on things. Avoiding strenuous exercise has only seemed to worsen these conditions. I've lost knee flexibility and my tendinitis is worse. I'm guessing that the hair on my shins will never grow in...

I feel like I need to challenge myself physically. Back before I hurt my knee I could swim forever and bike quite a distance. I was writing my schedule for how to train for an Ironman triathlon. This was 15 years ago and it still bothers me that I never followed through on this goal.

Now...I'm not crazy enough to think that I can do an Ironman anytime soon. But I do think that I need to challenge myself. And in doing my research there are Ironman triathletes who competed with an ostomy bag. Granted, they were doing this before the surgery...but I haven't (thankfully) needed surgery.

So here is the deal that I've made with myself:
Assuming that I can get the colitis in check...and that my primary care, podiatrist and any other specialist that need to sign off agree to it...I'm going to embark on the following training plan...
August 2007: Enter or volunteer at a super-sprint triathlon (400m swim, 13km bike, 3km run)
November 2007: 5K run
January 2008: 10K run
March 2008: Sprint Triathlon (750m swim, 20km bike, 5km run)
June 2008: 21K (half-marathon)
August 2008: Olympic Triathlon (1.5km swim, 40km bike, 10km run)
November 2008: Marathon run

Obviously, this is aggressive. It's assuming no setbacks and that I will not be taking night classes to train.
My primary physician will sign off if I'm healthy. The big question is...can I get my ankle and knee to take this?

I don't see another option. If it breaks, we can fix it. But I realize that I need to be in better than average shape to handle these swings in health. (And I'll feel a lot better about myself as well if I'm in shape)

Perhaps the infusion has made me loopy, but I'm optimistic about this

Surprisingly

2007-03-28T20:33:00.000-05:00

When I was just sitting in the infusion chair for a couple hours, I didn't have any negative thoughts.
I imagined that I would scroll through all the things I have had to cancel as of late, but I was in a positive state of mind.

I'm still ticked that my trips back to Chicago and Northern Minnesota to speak at colleges and visit family and friends had to be cancelled. Also not thrilled that I had to drop my classes as well.
But in the end, it's given me some perspective to get healthy and re-energize old goals that I thought were buried. So this is good.

The Infusion Experience

2007-03-28T20:11:00.000-05:00

I haven't talked about what the experience was like until now. I needed a day to just process everything that happened. On Monday afternoon I wasn't even scheduled and the next thing I knew I had to clear my schedule for the next day.
I couldn't even arrange rides to and from, so I had to take a taxi. (A little disappointed the roommates didn't volunteer to take me, but anyway...)

Here's an attempt to recall everything that happened...

I had an 11:30 appointment, so I was called back at 11:15 to get situated. It was a small room with three padded chairs, a lab station, and a computer station. The full-time infusion nurse was there working on myself and finishing up with someone else. As someone who was recently diagnosed with social anxiety disorder...being in a closed space like that with no ability to leave was a little daunting. After an hour I managed to relax.
(As an aside, I wonder how much of my anxiety is driven by my UC...in college I wasn't social but I taught myself to speak in public, eventually becoming captain of the debate team and student body president. So getting panic attacks in social situations seems a bit odd)

I was given some Zyrtec and Tylenol to alleviate any potential headaches and allergic reactions. I should have been given the paperwork/releases to sign, but she seemed a bit preoccupied and forgot.

Fortunately for me, I have pretty easy veins...so putting the IV in (while not pleasant) wasn't painful. The only thing that bothers me is that I can't move my hand when it's in there. As a result, my hand feels like it is paralyzed...even though it isn't. How much of this is mental, I don't know. Fortunately, I had a blanket and pillow to prop up my arm so it was in a comfortable position.

She then started a bag of what seemed to be saline/dextrose and let that drip for a while.
The Remicade was then started. There is a nozzle that controls the flow and it is set on the minimum to make sure that the body can handle it. It seems to take forever for it to drip...and then travel through the tubing.

It was at this time that she realized that I hadn't signed the paperwork. Ever try to sign your name with an IV in yout writing hand? Not the easiest thing...

About every twenty minutes you get your blood pressure checked. Because there was only one machine...we had to detatch and reattach every so often. A bit annoying if you ask me. Also, if she had to leave the room to get something for me...that left no one for the other person. At one point her IV ran out and blood started running up the tubing until she stopped it herself.

Other than the occasional blank-out, I was well-treated. Snacks, drinks, ability to watch a movie on the tele, footrests, etc.
Once the other patient left, the conversation got boring...
Thankfully I had my computer and was able to poach the wireless internet connection.

All in all, I didn't have any negative experience with the infusion. There is no bruise on my IV hand. Other than a little fatigue, all was fine. (And who with IBD isn't tired from time to time)

I'll try and better document the next procedure with more details...

The Day After

2007-03-28T19:27:00.000-05:00

I had a hard time getting ot of bed today and had more cramping then usual. However, once out the door I felt a little better than usual. It was a little easier to focus at work.
I don't know if this is a placebo effect, wishful thinking, or if things are improving. I guess it is a wait and see.

One weird effect during the infusion process is that my blood pressure was way lower than usual at certain points.
As in 108/64
I'm guessing it wasn't a problem as she didn't think twice about it. Could be that the cuff wasn't on clean as well.
But going from 118/78 to 108/64 isn't too big of a drop as long as it didn't stay there...

Recovery

2007-03-27T19:41:00.000-05:00

I don't know if it was the infusion or the fact that I didn't sleep well last night (and got up early for work)...
But I slept for a couple hours when I got home.

Still sleepy, but feeling OK.
Back to work tomorrow...

BWI

2007-03-27T11:16:00.000-05:00

Blogging While Infusing = BWI

Trying to type with only my off hand is a bit tricky, but I'm getting the hang of it.

A little sleepy from the Zyrtec the gave me (along with the Tylenol)...but it's been easy so far.

Two more hours to go.

Monday doctor appointments

2007-03-26T18:01:00.000-05:00

I didn't get to see the dermatologist from my previous visit. For better or for worse, I saw my traditional specialist. He seems to have a different opinion as to what is going on, so that's a little frustrating. Then again, it's all in the same family...so they aren't going to do anything until the biopsies they took today come back in a couple weeks.
Apparently the skin issue are neutrophilic blisters.
Doing a little research makes me think that
Linear IgA Disease might be it.

Making matters worse, my dermatologist strongly recommended that I research what a gluten-free diet would entail. If it is one of their list of "possibles"...I'll have to go gluten free. Aahhh!
I'm a Midwestern boy...land of cheese and grains. Switching to such a diet would be extremely difficult (and depressing).

I'll have to comment on this in greater detail at some point...but I will say that I don't like getting blood drawn at an office. I much prefer going to the hospital and having it done by someone who has been there for years. I'd like to say I was pleasantly surprised, but they didn't get it in my right arm and had to try again in my left. Taking six vials was a bit much as well...

Fortunately, I have a week and a half before I have to revisit the needle. Or so I thought.
I got a phone call today saying that my GI specialist wants me to start the Remicade immediately.
So I am having my first infusion tomorrow at noon.

Keep your fingers crossed...

Finally, word from the dermatologist

2007-03-23T17:13:00.001-05:00

I've been chomping at the bit awaiting word from the dermatologist. I didn't expect the biopsy to be done, but I couldn't understand why it was taking so long for the cultures. I mean, all they do is put it on a petri dish and grow it in an oven for a day or two. It shouldn't take weeks.

I think my dermatologist can sense when I'm at my wits end. She called me this afternoon when I was leaving work. Long story short, she was trying to get some info from the lab dermopathologist and couldn't get a confirmation on the biopsy.
She did find out that this is an inflammatory skin issue, not an infection. I'm not surprised. Neither is she.
Although she couldn't get an official diagnosis, she could confirm that it was not life-threatening, but was a "nuisance".

We obviously have a different definition of "nuisance". Pain that keeps me up and a blistering, ulcerating rash on 40% of my back exceeds this.

She seems to think that it is Sweet's syndrome. My back looks a lot nastier than the one in the picture...and the lesions are much larger and all interconnected. Ick.

In any case, the standard for treatment is prednisone...which I am on. However, I probably need to go from 30 mg per day to 80 mg per day. It looks like I'll have to do this until the Remicade kicks in.
Can you spell "moonface?"

On the plus side, it seems that all is coming together. And when this happens, relief is not far around the corner.
I'll have to have another set of biopsies on Monday...but it looks like the Remicade treatment is a go.

--- UPDATE on 3/25 ---
Enclosed is a more accurate depiction of the skin inflammation I have. Apologies for the graphic image, but as I indicated...this was to be a more clinical blog. It is amazing that this (and mine) were both negative for infection and whose biopsies registered as "normal" inflammation.

purpose

2007-03-22T18:00:00.000-05:00

I had to stop writing on my other blog because it was so depressing.
Watching your health deteriorate for a few months, knowing it is all immune-system related, and not getting all the doctors on the same page can be frustrating.

I'm hoping that this blog will allow me to continue writing (which I like), but from a more clinical aspect. I'm not looking to turn this into another whining area.

Still T-minus two weeks until my first Remicade infusion. It's the last option, even though my last scope only showed two inches of inflammation.
I'm also grateful that my workplace has allowed me time off to rest. I work when I can and I don't when I can't. Considering I haven't been there a year, I have a lot of internal pressure to get in there and show what I can do. But on days like today, it's best for me to stay home.
I'm also grateful that my insurance is picking up almost the whole Remicade treatment. It's an expensive IV treatment that takes about 2-3 hours to infuse. Had I elected to stay in graduate school, since I dropped out of my classes this Spring, I would have been kicked out of the dorm...lost my RAship (paycheck) and because the insurance was terrible...been heavily in debt. I would have been looking bankruptcy square in the jaw.

So, while this has been one of the worst starts to a year that I can remember...things could be a lot worse.

As for what Remicade is/does...I'll post later

Intro

2007-03-22T15:34:00.000-05:00

I've been an Ulcerative Colitis patient for the past five years.
For those of you who have gone through this, I can't say that I have had the most severe case. Except for the initial diagnoses (which took two scope procedures over a year), I never had to be put on prednisone.

Until recently.

The immune system is an interesting thing. Over the past two months I've had some interesting phenomenon that by themselves are scary, but don't loom large on the health picture.
Two months ago I developed an apparent abscess on my skull, got shaved like a dog, and then found out that taking Percocet every two hours wasn't doing anything for pain. Thankfully, not a brain tumor...but it was nerve damage that went away after taking a neuropathic pain medicaiton for a couple days.
About a week later, a couple pimples on my back turned into lesions the size of a silver dollar. They've only grown larger in the past week while the biopsies are being analyzed. The dermatologist thinks it is Sweet's syndrome, while the gastroenterologist thinks it's pyoderma granulosum. Not that it matters...

In the meantime, my colitis is as bad as ever.
Fully maxed out on Asacol, maxed out on Imuran...and so they are putting me on Remicade.

At this point in time I've set up my first infusion for two weeks from tomorrow. In the meantime, I'm hoping to get the biopsy results back because you can't have an infection and take this medication. A month for biopsies? Apparently.
Hopefully they will get on the stick and get it done. My derm appointment to take out the stitches is on Monday.

In the meantime, I'm rarely working a full day because of all the fatigue and other symptoms. And the fact that the lesions are now covering 40% of my back doesn't help either.