Colonoscopy time!

It's been 4.5 years since my last one.  So the time as come.

I was hoping to be able to get whatever Rx laxative pills I took last time, but I guess Kaiser no longer uses them.  I refused to drink the gallon on saline, and told the GI that I needed a different way.  (It's physically impossible for me to drink it.  After glass 2, I start throwing up.)  This time around I'll be using the MiraLax method.  I think it'll be pretty good, because I'm only drinking 64oz total, and only 32 in one sitting.

The MiraLax method goes like this:

• Clear liquids (as always)
• At the start of prep take 2 Ducolax
• Mix 7 doses into 32oz of yellow, green, or clear Gatorade.
• Drink, drink, drink.
• The next day drink another 32oz+7 doses.
• Then drink Magnesium Citrate (I'll likely skip this step, because I probably won't need to do it.)

That will all be on Thursday and early Friday.  My sister is having an endoscopy and colonoscopy at the same day, nearly the same time.  We always did like to do things together.

Magnesium Citrate

Everything was going along fine, for a really long time.

I stopped nursing, so I was able to start taking my Adderall (as prescribed) again.  Only this time it had an unforeseen side effect.  Constipation.  I've never really been constipated before, since Crohns provides the opposite problem.  But this time around, it's been an issue.  I already drink a lot of water (75+ oz daily), and I exercise.  I probably could eat a little better.  I started taking Miralax.  No help there.  I took ducolax on a few occasions.  It helped sometimes, but not others.  And it's habit forming, so you can't take it for very long.  Most recently, I went on Friday, then nothing all weekend.  Or Monday.  I emailed my GI today, and he recommended two bottles of Magnesium Citrate, four hours apart.

I found MgC at the dollar store, and started to drink it in the car.  The taste wasn't wholly unpleasant: like a strong lemon soda, which an odd after taste.  It almost immediately made my stomach hurt.  The bottles were 10oz.  I drank about 8oz of bottle #1.  Within the hour the constipation was gone... and boy howdy, was it gone.  I'd guess I've probably made 12+ trips to the bathroom in the last 5 hours.  It feels like colonoscopy prep.  I think the effects are finally starting to taper off.

I think my GI may have been trying to kill me (two bottles in fours hours?!).

So now I'm formulating a plan so I don't have to use that second bottle.  It likely includes continuing lots of water, and having a bowl of lentils everyday.

No news is good news

It's been a while since I've been on here.  Mostly because everything is going well.

I went through the pregnancy and delivery with no issues from Crohns or Humira.  (Though, I somewhat suspect that my Humira injection may have sent me into labour.  But that's just a theory).

My GI has been monitoring my blood labs, and everything looks fine.  He wants me to continue with once weekly Humira injections as my treatment.  I was hoping to possibly cut back to twice a month, but I'll follow his recommendation.

A colectomy in the family

This has been a rough week.

My dad was hospitalized from bleeding (from his crohns) about a month ago.  He got well enough to be released.  But he never really was well.  The month at home was filled with stomach cramps, bloody diarrhea, and high fevers.

Things got worse, and I was checking in with him every day.  He wasn't doing well.

Last Saturday he called me at 6:10am.  He'd been bleeding rather heavily since 2am.  He asked me to dive him to the ER, since he was pretty shaky and worried about passing out.  I went and got him, and we got to Good Sam around 6:45am.  He got fresh frozen plasma almost immediately, and saline.  Later he got a bag of blood.  He finally got admitted around 1pm.

Things stayed about the same in the hospital.  More bleeding, more transfusions, not much pain, or fevers.

His GI (Dr Balaa) did an emergency colonoscopy on Tuesday.  The whole colon was in bad shape.  Two sections were very bad, and one was kind of bad.  Dr Balaa suggested a full colectomy, because my dad had pretty much run out of options.

 (He was diagnosed in 2005, and has run through lots of different medications (steriods, TNF, 5-ASA, and cancer drugs).  He responded well for about 5 years to 5-ASA (Pentasa), but for the last 2.5 years has been having problems.)

I emailed my mom (a retired RN) the pictures from his colonoscopy, and she agreed that he looked pretty bad.  The surgeon (Dr Youn) can to visit on Wednesday to discuss the surgery, and why it was a good idea etc.  It was pretty much settled from there, surgery was the best choice.  I was thinking the surgery would be laproscopic, as many surgeries are now.  But this was going to be huge, major surgery, with an incision from ribs to pubis.  He's in a weaken state (he's down to about 140 lbs at 5'11"), and he had pulmonary emboli in 2005.

In talking about it with him on Wednesday night, he was determined it was the best choice (as was I, and everyone else), but he was, rightly, scared.  He got teary, and talked about final wishes that weren't in the Trust.  That was hard.  I don't mind talking about the Trust or death planning.  But the fact that it was actually a real possibility.  Plus I have no memories of seeing my dad cry.

Thursday the nerves were a little more calm.  We found out his surgery would be at 3:30pm.  And Dr Youn came to talk to us (specifically me, Aaron and Ginny (my dad's girlfriend)), on Thursday night, and spent a long time, answering all our questions.  I like Dr Youn, he seems really capable, knowledgeable, and friendly.

I took Friday off of work, because I knew I wouldn't be able to concentrate.  I did pretty well about not freaking out in the morning.  I started to cry on the way to the hospital in the afternoon, but then my sister called and cheered me up a little.  I got there a little before 1, and just hung out.

Around 2, the anesthesiologist, Dr Steve (I didn't catch his last name), came by and met with us.  And then at 3:20 he was whisked off to the OR.

Aaron came right after my dad left.  He was bummed about missed him, assuming they'd start right on time, or (more likely) late.  He helped me move my dad's stuff, and then sat with me in the waiting room.

Time didn't go by as slowly as I thought it would. I brought lots to do (magazines, sudoku puzzles, snacks, laptop, etc).  Ginny came around 5:30, and my dad's friend Charlie came around 6.  So we sat around, and waited, and chatted a little. At 6:45 Dr Youn came out and told us all had gone well.  The colon looked pretty bad, with 2-3cm ulcers all around.

He was in recovery for almost 2 hours.  Then we followed him up to his room.  Then was where I lost it more.  It's terrible to see someone you love in pain, and know there's nothing you can do.  Though, he did say some funny things in his semi-lucid state.

Now, I've just sitting here, watching the results on the vitals machine.  BP is good, pulse ox is good.  But his heart rate is too high much of the time, especially when the pain is present.  It'll go up to 125 bpm, then when he's ok, it'll go down to 98 bpm (still high).

They're getting ready to set up an EKG to make sure everything is ok.

A change of venue.

I'm 19 weeks pregnant today.  I feel like I'm finally starting to look pregnant.  

As many of you know, Humira usually gets injected in the fat on the belly.  And to do the injection, you need to be able to get a decent pinch of fat/skin.  Well, my belly isn't too pinchable anymore, so today I moved my injection site for the first time.

I reread the directions, since I'd never done that before.  And the directions don't actually show instructions for the thigh.  So I went to youtube, and found a helpful video.  

I was pretty nervous, which is bad, because I'm prone to vaso-vegal reactions (fainting), and I'm home by myself.  So I made sure my blood sugars were up, which helps a bit.  Took some deep breaths and pushed the button.  At first it hurt less than the belly, then just as much.  But in the end, I think it may have been a little less painful.  And I didn't faint or get light headed.  (Bonus!)

I'm glad this worked out, since I'll been needing to do this for the next 21 weeks or so.  I got a couple other options from the doctor, but they were less optimal.  I was also given the option of the saddle bag area, or the back of the upper arm.  The issue with these locations is that I can't access them myself, so Aaron would need to help; and he's not too keen on that.  He did it once before, and hopes to never have to do it again. 

Crohns+pregnancy

I've been pregnant for a few months now.  Though, I've only known for about a month.  I guess I'm slow to come to the party.

I'm right somewhere around 12-13.5 weeks.  I guess things have pretty much been ideal.  My guts have been behaving.  I've had some indigestion, some nausea, but nothing terrible.  No flare ups, no cramping or anything.

I'm still taking the Humira weekly.

So not much to report, which is good.

Traveling with Humira

My little sister graduated from college this year.  (Actually, she graduated in December, but the ceremony was held a week ago).  I fly back to the East coast once or twice a year.  Previously, my Humira-day didn't overlap the time that I was gone.  On this trip, however, it did.

Humira needs to stay refrigerated.  It's not like many drugs you can just toss in your bag, and be on your way.  

My dad did the research for me, and found that the Humira company will supply a travel kit.  So I called up to get one of those.  It consists of a small insulated style lunch bag that holds a cold pack on both sides.  The rep warned that the cold packs need to be frozen solid, or the TSA will take them away.  

I was a little nervous going in, I didn't want my (expensive and needed) Humira to get taken, or get too warm to be useful.  

In the end, there were no issues.  They didn't even look in my lunch bag.  By the time I got to Virginia, the cold packs were a little squishy, but still cold.

All is quiet

All is quiet in Crohns Land, as of late.  When you have crohns, this is what you want.  Nothing to report.  No pain, no weight gain or loss, no side effects and normal blood work.  So all is well.

We've also been given the green light for trying to get pregnant.  Hopefully, sometime in the not too distant future, this blog can be about crohns and pregnancy.

Using Humira (in pictures)

My box of 4 Humira syringes (One month's worth).

One pre-packaged syringe.  

My set up.  I always close myself in the bathroom, to keep the cats and dogs from messing me up.  I lay everything out on the toilet lid (sometimes I bring a snack too).  This is the syringe and an alcohol wipe.

Me getting ready.  (Gotta psych myself up)

You have to get the little bit of air out of the top.  This one is prepped.

Clean the area, then stab away.  (I'm not quite this fat, but I sit slumped so I have a good place to stab into). (At this point you're suppose to pull the plunger back to make sure you didn't hit blood, but I always skip this part).

The after; hard to see.  A red dot, and some Humira leaking out.

A used sharp.

My make-shift sharps container.  (Those aren't all mine, the little white ones are from my dad's Forteo)

All is well

I've actually been feeling good for a while.  I was really skeptical that Humira was going to work.  Especially since nothing else did.  But once a week Humira is working great.  I have no symptoms and no side effects.

This is what the syringe looks like, but it's not my picture.

My dad (after mucking with Pentasa dosages and ending up in the hospital) has been taking Humira twice a month, and having very good results too.  He's having a couple minor side effects, but is happy with the results.

I'm not looking forward to buying my first dose of the year, since my drug deductible has reset, so it'll cost $250-300 for the first dose, but then $35 a month after that.  I'm pretty pleased to have such a low drug deductible.

Actually I'm pleased with my insurance in general.  I often thank God for my insurance.  It costs almost $300 a month through my employer (I work for a small company), but it's very worth it.  Especially since I never know when I'll need specific care.

Oh, and other good news.  My blood work is completely normal.  Every test was well within range!

And the better news, if I can stay well for a few more months, I'll have the all clear to start trying to get pregnant!     

Tiny update

I finished the Prednisone. Yay.  But I'm still having little flare ups, moderate pain.  But I'm getting the "crohns bumps" some weird skin ulcers that I had the first time around.

So my GI is having me switch to Humira once a week, instead of every other week.  I'm not too thrilled, but it could be worst.

Plus I love Kaiser.  A month's worth of Humira (4 syringes) costs me $35.  The regular price (without insurance, I guess) is $3660 for the same amount.  Yikes.  Also, the Humira is cheaper than Asacol was (at $55 a month).

For some reason, Kaiser switched from the Humira pens to the syringes.  It's not much different, but it's a little more difficult.  The pens are one and done.  The syringes have a few steps.  And they make me shakier.  I'm not great with needles.

Calm before the storm?

Nothing much to report on the Crohns front right now.  Just a couple quickies:

• 2.5 more weeks of Prednisone and I'm done!  Yay, yay, yay!  I've (thankfully) stopped eating everything in sight.  There are only 2 remaining side effects: bloat and hair.  I'm retaining water like no one's business.  My fingers got so fat I stopped wearing my rings.  My face is still a little puffy.  And the 8lbs I worked so hard to lose are back.  Some of that is water, some is fat, from me stuffing my face.
• As of last week, my ALT was almost back to normal.  The range high is 36, and I was at 42.  I did another blood draw today, so hopefully it'll go down more.
• And, the best news of all, I got my Adderall back!  So now I'm not tired all the time.  Yay!

Quick update

I've been taken off most of my meds.

My ALT levels (which should max out at 36) are at 278.  Something in my liver isn't happy.

I'm down to Humira, Celexa and Prednisone.  No more Asacol, 6MP, Adderall or Pepcid.

I'm concerned that a major flare up is just down the road.  But I'm more concerned about dying from a non-functioning liver.

I just had a blood draw on Wednesday.  I have to go back and do another one tomorrow at 6.15am.  Then we go from there.

Prednisone, Part 2.

I've been on the terrible drug for about a week now.  And, it actually hasn't been too bad.

My mood has been a little extreme, but nothing compared to last time.  It may be due to the fact that I'm on Celexa already, and it's keeping me more level.

The hunger hasn't been bad at all.  I'm a little more hungry, but not starving all the time.

Definitely having water retention.  And some hair growth, but nothing I can't deal with for another 7 weeks.  But my tummy is only getting slightly better.

Prednisone, part 2?

I still haven't been feeling great.  Not terrible, but not where I should be.  Due to my blood work, I can't take any more "crohns" medication right now.  My GI suggested I do a 2-3 month taper of (the dreaded) Prednisone.  I'm still thinking it over.  Is feeling better worth all the side effects?

Medicino change up

After running around to get my Asacol prescription refilled Monday, on Tuesday, my GI took me off of Asacol.

Monday morning I realized I was completely out of Asacol.  I was taking 9-12 pills of Asacol daily.  So when ever I got a refill I'd get multiple, huge bottles, which seemed like a never ending supply.  Monday morning, I went to take some, and realized I had enough left for morning and noon doses, but no more.  I had no more in the cabinet either.  And (dun, dun, DUN) no refills remaining.  So I scrambled around, leaving a message, and sending an email to my GI.  (The one issue I have with Kaiser, is it can be hard to talk to someone in the GI department).

Mid-day I got an email from my GI saying that he refilled the Asacol, and I could pick it up in the pharmacy that afternoon.  Perfect.  I had to go to Kaiser anyway to get my monthly blood work done.

I go, I drop of my Rx, do the blood draw, pick up the filled Rx and head home.  It actually all went very quickly.

The next day, I was checking my blood work online.  My sed-rate is finally where it should be.  (Normal is 0-20, at one point mine was 92).  All the other tests looked fine, except the ALT.  The ALT basically tests for liver damage (as is my understanding), and since my combination of poisons is good to crohns, but bad for livers, they've been keeping an eye on it. Normal ALT levels should be under 36.  Last month, mine was 43, which seemed a little high.  This time it was 75 (double the max of where it should be).  Eep!  So after talking to my GI, he said to stop taking the Asacol (which I'd spent the previous day stressing about), and we'd continue the blood tests. I guess it's not high enough to cause alarm.

It's kind of nice not taking Asacol.  I went from 20 pills a day to 8. But, I've definitely felt worse in the gut area.  So I guess it was helping out.

Prednisone

Prednisone is a steroid-type drug that is used to treat all sorts of things, especially inflammatory diseases.  It's practically a panacea.

Last year, before I was officially diagnosed, I was put on a short taper of Prednisone.  This means for a week or so, I would take something like 3 pills, then 2.5 pills, then 2 etc, until there are no more pills.  I don't think at that time I noticed too much in the way of side effects, with the exception of some mania, and insomnia.  But at that time, insomnia was quite common for me.

I suppose I should mention the list of side effects, as there are many.

• insomnia
• euphoria
• mania
• weight gain
• facial swelling
• depression
• osteoporosis
• head aches
• joint pain
• dry mouth 
• anxiety
• acne
• increase appetite
• rashes
• facial hair growth
• diarrhea
• stomach pain
• corticosteroid dependency
• fatty liver disease
• ulcers
• infections

Directly after my diagnosis, I was put on a long term Prednisone regiment.  I think originally, it was supposed to be for six months.  

I'll start with the good bits.  It did do what it was supposed to do.  It helped with my stomach pain almost immediately.  And I had a lot of energy.  So much so, that I took up running again.  That was it.   

As for the bad, well, I had many of the side effects; I bolded the ones that affected me.  It was miserable.  Here is part of a blog entry I wrote 7/16/2011:

I am so frustrated.  I hate Prednisone.  I'm pretty sure it was invented by the devil.  At this point I'll take Crohns over the Prednisone side effects.  

So it makes me angry.  All. The. Time.  The small amount of time I'm not angry, I'm sad.  I can't remember when I was last happy.  When something was funny.  Aside from all this, I can't sleep.  I take Ambien, and I'm awake two hour later.

I was going to send my GI guy an email, but he's out of the office for another week and a half.  ...
 I slept 2 hours.  2.  And can I just mention how much I hate this?  I hate this.  I would rather have the physical illness of Crohns, than feel like I'm a terrible wife, friend, human being all the time.  

Also, around that time, I went a little crazy.  My husband and I were at a hardware store.  And I was looking at a wall of hammers.  And I thought, "I could take one of these hammers and just start smashing people's heads with them.  And no one could stop me."  It was a very scary thought.  After that I got on anti-depressants, which helped a little.  But it was just a really hard time. 

The hunger was ridiculous.  I'd never been so hungry in my life.  I was ravenous all the time.  And since I could eat without being in terrible pain, I took advantage.  And ate, and ate.  It didn't matter if I had a huge meal, I was still hungry.  Just always, always hungry.  I also gained 15 lbs, which was rough (since the only benefit of having crohns was getting skinny).

Around September, I told my doctor that I couldn't take it anymore.  It wasn't worth the side effects, and feeling like a monster, all. the. time.  So at that time I started tapering off.  I think I finished in October, but I had to get down to a minuscule dose before I started to feel normal again. 

I would consent to a short-term prednisone taper, maybe 1-2 weeks, in the future, should I have to at some point.  But there is no way I would do a longer term dose again, unless there were no other alternatives.

Humira

I plan on writing about all of the various drugs in detail, but since Humira is the most recent one, I'll start there.

My doctor offered me Humira maybe 6 months ago, but I wanted to try more "traditional" Crohns drugs first.  By traditional, I mean drugs that come in pill form.  Humira was originally developed as a drug for rheumatoid arthritis.  It's injected subcutaneously, because if taken orally, the digestive system would destroy it.

This is what it looks like.

I wasn't thrilled about giving myself shots.  I'm not great with needles (not terrible, but not great).  I've been known to have vasovagal reactions (aka, get close to passing out).  

I was concerned about the cost.  I have good insurance, but I know Humira can be ridiculously expensive.  But my cost was pretty good, $35 for a months supply (but my receipt said my drug plan saved me over $3000).  

After that, I had to go to the injection clinic to learn how to give myself shots.  This didn't go great.  I made my husband come with me.  He is worse with needles than I am.  But I wanted him to see how to do it, in case I really couldn't.  The directions suggested injecting in the tummy or thigh.  The first shot went ok, the second one really hurt for some reason.  And then I almost passed out.  

I've gotten better since then.  I've been using it for almost two months.  I've found that pinching my stomach fairly hard while giving the injection helps a lot.

 As far as side effects, I have a few.  I usually get run down for the next day or so.  Also I get a mild injection site reaction, it kind of looks and feels like a hive.

In terms of results, it's inconclusive so far.  But hopefully it will help me out. 

History

Here are my bare-bones facts-

• I was diagnosed in July 2011.  I'd been having symptoms off and on for eight years.  They were brushed off or misdiagnosed during that period.  
• My dad also has Crohns.  He was diagnosed six years before me.  We both had the same doctor, at the same time, and she did not get it for either of us.  (Her lazy guesses included gastroenteritis, IBS and lactose intolerance).
• My dad actually lost 30-40 lbs while the doctor was not helping.  That was a lot for him.  I lost 20 the first time around.  It wasn't as drastic for me, I was overweight.  At 5'6, I went from 163 to 140 in a little over a month.  
• After that bout, for the next few years, my symptoms were manageable, so I dealt with them, and ignored them (when possible).
• Thank God for Kaiser.  (I was nervous about starting Kaiser in 2010.  I'd heard horror stories.  But they've been fantastic). When the next really bad flare up started (March 2011), the doctors actually started diagnostic testing.  It started with blood work, then moved on to urine and stool test.  Then a sigmoidoscopy, then colonoscopy.  The colonoscopy was the answer.  

Crohns Info-

• From wiki:  [Crohns is a] chronic inflammatory disorder, in which the body's immune system attacks the gastrointestinal tract possibly directed at microbial antigens.^[5][7] Crohn's disease has traditionally been described as an autoimmune disease, but recent investigators have described it as an immune deficiency state.
• It's found equally in men and women, and often runs in families.
• People of Jewish decent have a greater risk of developing Crohns.
• Aside from the normal gut problems (nausea, diarrhea, cramping, pain, frequent bathroom trips, etc) it can also have secondary symptoms: fatigue, joint pain, skin lesions, and inflammation of the eye. 
• According to my doctor, of people diagnosed: 
• 33% have a one time flare up that can be controlled with medicine and diet.  
• 33% will have periodic flare ups and generally do well on medicine
• 33% have chronic Crohns, and will deal with flare ups often, which are difficult to control with medicine.
• People with Crohns have a greater risk of certain types of intestinal cancers.
• Crohns is more common in smokers.
• So if you're a Jew, who smokes, watch out!  My dad is 100% Ashkenazi Jew, and I'm half, neither of us smoke.
• Stress exacerbates the symptoms.
• Drug treatments often include: Prednisone, Mesalazine (Pentasa, Asacol, etc),  Azathioprine (Imuran (a drug given to kidney transplant recipients)),  Methotrexate and Mercaptapurine (chemo drugs), Remicade and Humira: subcutaneous injections.
• There is no cure, just management.  An exact cause is unknown.
• From the Crohns and Colitis Foundation:  About 70% of people with Crohn’s disease eventually require surgery.