I’m making the switch from Remicade to Humira for my crohn’s disease.

The muscle aches, which we attributed to an allergic reaction to Remicade, went away mostly.  However, after my 3rd Remicade treatment, the achey joints returned (maybe some slight muscle pain, but mostly just joints).  It was my elbows, fingers and wrists, ankles and knees.  For the most part, after about 5 weeks, all that remains of the aches are one elbow and both knees – consistently anyway.

Doctor today seemed like he was thinking about suggesting another round of Remicade… but then just said, lets just do Humira, I think that’s what we should do… Are you ok with it?  Oh, yes.  Definitely ok with it.  I certainly don’t want to feel these aches and pains… not feeling confident to carry laundry up from the basement for fear my knees will give out.. or carrying a couple bags of groceries makes my arms feel like they’ll fall off.. while I am happy to not have the abdominal pain, I didn’t plan to trade it for other pain.

The tail bone pain I was feeling before the holidays is completely gone. I actually wouldn’t have given it any thought, except he asked about it today.  So, I’m assuming the abscess was small and insignificant enough it just went away.

So, humira.  I will go to the doctors office and a nurse will show me how to do it.. from then, I will adminster the shots myself at home.  They assured me it’s easy to do – but I also don’t want to mess it up, as it’s so expensive.  No pressure.  But really, I think giving myself a shot will be a cake walk compared to going and sitting for hours at the hospital while they give me an iv of remicade.. yeah, I really don’t mind the switch.

Now, keeping fingers crossed Doc can push the change through my insurance.

I don’t know why I seem to be so unable to grasp the pain involved with crohn’s disease.  For some reason, I keep thinking that “this time”, I will get better.  Honestly, I think deep down, I believe one of these times, medicine or treatments are going to actually make my crohn’s disease “go away”.  That one day, the doctors will say something like “Oh gee.. we thought you had crohn’s disease, but really it was just a little inflammation and now it’s gone.. you’re cured.”

I admit it.. I do think that sometimes.

And then, I tell myself that no.. I had the colonoscopy, I’ve had the bloodwork and the various CT scans.. I take the medicine and I still hurt, I still have inflammation, hell, an abscess no less… I tell myself this is real, wake up.. take your medicine, take your norco, stop feeling sorry for yourself and just accept that this is the way it is. period.

But, when I wake myself at 3:30 in the morning, whimpering in pain… and have to drag myself out of bed, to the kitchen for pain medicine.. knowing a warm bath is the mostly likely thing that will get me through the next 45 minutes until the pain medicine kicks in… well.. it’s hard not to whimper some more, shed a few tears, say a few ‘damn it’s and yes.. feel sorry for myelf.

Do others have it worse off that me?  Oh yes.. with crohn’s, colitis and various other illness.. I know.. and please, I do feel for everyone who suffers pain.  But, I feel sorry for myself too.  Wahhhh.  I’m depressed, but not like wallowing it.. I am on an anti-depressant, it helps but I wouldn’t call it my “happy pill”.

Not to mention.. I’m a little scared.  What if this abscess is filling back up.. that would just so suck.

I had, for a few minutes, actually considered taking the catheter out myself.  I was glad the dr called me and was able to set up an appointment with the hospital (even though I am not happy with that hospital and I’m not exactly one of their favorite patients).. and she explained how we needed to have another CT Scan to ensure the abscess had drained and actually collapsed.  If it hadn’t collapsed, the chance of recurrence was greater.. and well.. it’s not something I’d like to have to go through again, just because I was being my typical taurean self (i.e., bullheaded).

Well, at the hospital, they were quick and friendly, well, maybe “friendly” isn’t the right word.. they were professionally polite, answered my questions and otherwise, did their job.. they even offered pain medication, should I feel any discomfort [snort].

I had to drink fruit flavored contrast dye before the CT Scan.. the scan was quick, though I had to lay on my back.  On a fairly hard table, with a tube (I don’t *care* how thin the tube was, it was NOT suppose to be there and it was NOT comfortable!) in my tush, laying on my back wasn’t a joy by any means.. but my grumpy self made it seem much worse than it was, really.

That was done and I was sent back to the lobby with my current read (Breaking Dawn, the 3rd in the Twilight Series) until the dr had a chance to review the scan.. which he did, and much to my relief told the abscess had drained completely (which I knew, since I was attached to the bulb, bleck) and had collapsed.. so he could take it out (had it not been drained/collapsed, I’d have had to go back early the next week and try again.. oh, I’m telling you.. relief!).

I asked if it would hurt and he explained how it would happen.  When they insert the tube, it’s just a straight flexible piece of tubing… but they need it to “hook” or what he referred to as “pig tail”, so it stays inside the abscess.  To do this, there is a string inside the tube, which, once inserted, the doctore pulls to tighted and the tip curls around.  To take it out, the tube is cut and the “pig tail” releases it’s curl and then, easily slides out.

Now.. had I been bullheaded and impatient enough to remove the catheter on my own, I imagine it would have been much more painful than going to the doctor – I doubt that pig tail would have felt very pleasant.. (of course, now I know….. you know.. future reference and all that – cut the string!).. But, having the other CT Scan to ensure the abscess was closed was an essential part of the healing process too.

So it’s out, it didn’t hurt and I don’t even think I’ll get a dimple in my BUTT-ox from the whole thing.  Talk about short changed on that one.  I still have lower abdomen pain.. I guess I keep thinking they are going to do “something” and all the sudden I’m going to get better and feel normal again – whatever that is.  On the upside, the pain is nothing like it was.  My doctor is suppose to call me after she reads the CT Scan results herself and we’ll have a follow up.  She said she wants to get me on something stronger.  I suspect that will be remicade.. which I’m leary of.. so I better get my question sheet out and start making a list.

I left the hospital early on Tuesday, against their wishes… and immediately got in contact with my Doctor.

I spoke with the assistant on Tuesday evening and then again on Wednesday afternoon.  This morning (thursday) my doctor called to tell me I needed to come in so she could show me how to care for the catheter.  But since I already knew what do to and had been doing it all.. she had the assistant call and schedule another ct scan.

This time, they want to see how much the abscess has gone down.  For her to order the catheter to be removed, the abscess must close off.  This is to help prevent re-infection.  It’s also possible the catheter will need to be moved, if part of it hasn’t drained.

I’m actually glad she called and took a few minutes to explain things… I was reaching a point I was tempted to take the catheter out myself.  But understanding why it needs to stay in place for as long as it does, and knowing if it did not heal I’d have to do it all again.. well.. that’s enough for me to be patient about this.

And as mad as I was at the hospital, I am actually going back to them to have this follow up done.  I will be taking my own pain medication with me, for sure and won’t bother to ask for any if I am in pain.

So far, since having the catheter in place, I feel so much better.  I don’t have pain when I walk, sit, or when I’m bumped.  Of course, the catheter placement is uncomfortable and I have been taking percocet to relieve it.  But it’s a different type of pain.

If it’s not removed tomorrow.. we’ll make arrangments for next week.  I’m hoping for tomorrow, but not holding my breath.

On Monday, I was told I needed to have an abscess drained which was getting bigger and the main source of all my current pain.  The doctors assistant made an appointment for the following morning at 7:30.  The assistant didn’t have any other information for me, but told me the hospital would call to confirm.. so I could ask any questions I had at that time or even reschedule if I needed too.  The only thing she knew was I needed to have a driver with me… which we both took to indicate I’d be going home.

I never received a phone call… and, that was the start of how the whole next day went.  One goof or over-look after another.  The experience at the hospital was terrible..

The procedure itself wasn’t bad. The doctor doing the drainage explained what he was going to do – because my abscess was way down in my pelvic cavity it was difficult to get to.  He explained that an abscess is a huge infection and thought maybe I should stay at the hospital for a night for observation.

He was going to take a tube through the muscle in my butt cheek (he was funny – he said “BUTT-ox”, but it was how he said it that got my giggle) guiding it by a CT scan.  From there, they were going to leave a drainage tube in it to allow for the infection to completely drain.  He told me it would be painful, but they would give me medication to make it as easy as possible – that scared me.. I’d been in pain all morning and was ready for a break.. so to hear the procedure would be painful really stressed me out.

After all was said and done, I don’t remember any of it – twilight sleep, how nice… so pain wasn’t an issue during the procedure at all.

Originally, I agreed to stay in the hospital because I felt it would be the safest thing to do under the circumstances.  I’d have better pain control, and hey.. I’d even have my own room and a/c.. But, when I started have issues I had to rethink whether being there, or being at home, would be better for me.

First, I had no pain medication all morning – not since 11 the night before.  I was hurting.  Since I didn’t receive a call from the hospital the night before, we didn’t know where to go.. our first stop was the information desk.. who said she didn’t have anything listed for me and to go to Radiology… Radiology said I wasn’t suppose to be there to go to Same Day surgery.. Same Day said “Oh, that’s how you spell your name! It’s hyphenated! I couldn’t figure it out on the phone yesterday.” (.. I now know who dropped the original ball, don’t I?)  And then, she sent me down to the lab for blood work.. and told me she’d see me later..

In pain and walking all over the darn hospital because no one bothered to clue me in ahead of time.

Just a short time later I was back in Same Day .. and let them know I was in pain.  Bob let them know I was in pain.. my mom, who works there and assured me that their main concern is making their patients comfortable, also let them know I was in pain.. To no avail.

I didn’t go back to have the procedure done until about 9:30.  So for 2 hours at the hospital, I hurt.

About 1 o’clock, the twilight medication they’d given me started to really wear off.. so I was started to feel pain again.  Considering the Doctor doing the drainage told me how painful it would be, I thought they’d have pain medication on the ready for me. So far, not.

Bob brought me lunch.  The nurse gave me a little 1/2 sized can of soda – this was the only thing they gave me all day – not even ice water.

The container the drain was hooked up to leaked all over my gown, the bed, my underwear.. After I ate, I got up, cleaned up, got a new gown.. when my nurse came back I told her what happened and she wanted to know if anyone helped me.. she’d been on lunch and someone was suppose to be there with me.. um.. no.. never saw another nurse, other than the ones who stuck their heads in the room to see what I was eating (not one, btw, asked if *I* was ok).

At 2:30 or so, they took me up to a room, didn’t offer any ice water, didn’t ask if I wanted anything, just told the other nurse I’d eaten and didn’t need anything (I didn’t want anything anyway, but it would have been nice if someone had asked me).

The nurse asks me 100 questions I’d already aswered at least once before, but I think it was twice.. I kept dozing off – ice water would have been nice.. pain relief would have been even nicer.

A resident doctor came in and wanted to know why exactly I was there.. I told him about the drainage and he said yes, he knew that, but WHY was I in a room?  He thought I was doing an in and out procedure.. I thought so too.. I asked him about pain med, he asked me if I had problems with my crohn’s.. I was livid, my mom laughed at him and told him that’s why we’re there.. I asked him if maybe he should take a look at my chart.. Apparently, there was nothing IN my chart.. they didn’t even know who I had for a regular doctor.

At this point I was mad.. more than mad.  I was ready to go home.  Apparently, the dr who didn’t the procedure didn’t write up anything for pain (I was later told he actually DID, but it was overlooked – and it was for vicodin anyway.. which wouldn’t have helped.. ), and the nurses were trying to get ahold of the dr who’s care I was now under … finally, at 3:20, I was given pain reliever.

But, it was a done deal. I was going home.  I wasn’t going to stay there and beg for pain medication, have to track down a nurse for water.. and after everything, did I at this point really think they had my best interests in mind?  No.

So, I had a nurse tell me how to take care of my drain from home, and I left, against doctors orders.  If insurance doesn’t pick up the bill, the hospital will eat it, because they’ll never get a dime from me.  And I won’t be going back to that hospital again.

Note:  I didn’t even mention the nurse who thought I had lovely veins.. she was so excited to get good veins.  what a joke.

Well… I had a Dr appt today with the newest dr on my list (Dr Akram).. She’s from the Mayo Clinic, deals exclusively with Colitis and Crohn’s and was very attentive.  She listened, she watched and she touched.

She also told me that when I was in the hospital in June the CT scan done then showed an abscess.  This was the one the GI ‘surgeon’ specialists were flipping out over, ready to do surgery… but then the GI Specialists, says to hold off on it..

I went back to the dr (different dr than today) 2 weeks ago and had to ask if maybe antibiotics might be helpful to get me through because I was in pain, getting the same sick-symptoms back.. maybe?  Because if not, I will likely end up back in the hospital…

I was given flagyl and cipro, upped the prednisone to 40 mg/daily until todays appt.. as well as sheduled the CT scan.

Dr Akram today tells me the CT scan showed the abscess in June has gotten bigger.  No doubt about it.  It must be dealt with in way of draining.   Very quickly I was set up for an appt for tomorrow morning.  They are going to do a drainage catheter using a CT scan and I’m to “bring a driver”..

I don’t know anything else, as the hospital didn’t call to confirm anything today.  However, my sis assures me I will feel SO much better, as it will get that infection out of my body and allow it to start healing up.  She used to do these types of procedures (she was the “camera girl” as well as many other medical assistants).

I will post details as to what the procedure is about after it’s done.  But I plan to take it easy tomorrow.. hopefully I won’t feel too terrible.  For now, I think I’ll go take a pain pill and get to bed.. it’ll be an early up and about day tomorrow.