Not Much to Say

I realized I haven't posted much recently, and I figured out why.  What can I say.  Oh, I hate butt pee.  I wish the diarrhea would go away.  I am so sick of the pain.  I'd love to eat a salad.  Nothing much has changed here.  I am working, but from home and as of now only 5 hours per day.  I worry that if I had to work in the office I'd never make it.  The other day I had an accident, and luckily I was home so I could clean myself up.  I haven't had anything like that happen in a long, long time.  I guess it was a reminder of why I need to fight to stay working from home.

I did have a doctor's appointment recently with a new doctor.  He coordinates the drug trials for Crohn's medications.  I didn't like him at all, and thought the entire appointment was a waste of time.  Practically the first thing he says to me is that he thinks I should have another colonoscopy.  Not gonna happen.  When he realized I wouldn't have another one (after all, I've had 2 in the last 10 months) he decided that my real issue is IBS.  I honestly don't think I have IBS, since my pain is always in the same exact place, where my Crohn's is most severe.  So it was completely unhelpful.

Me vs. Toilet

As someone with active Crohn's, I frequently have to go RIGHT NOW.  Not in 5 minutes, but right away.  This morning, it happened.  I needed to run to the bathroom.  I get there only to discover the toilet is clogged.  I knew from experience it is much easier to use the plunger when there is no poop in there, so I did my best to hold it.  I plunged and plunged.  It took what seemed like forever to unclog the toilet.  But eventually, after much splattering of toilet water, it worked.  I was so happy to be able to go.

Then my son wanted to go to the Science Museum.  My husband is out of town, so I told him we'd go, with the understanding that if I don't feel well, we leave.  He understands the drill, so I know he'll be ok.  We had fun there, but about an hour after we got there the urgent need came again.  We left the dinosaurs and headed to the bathroom.  My son has been through this too many times to count, and I feel bad for him.  He knows to wait outside the bathroom for me.  I was glad there was no on in there because it wasn't very pleasant.  About an hour after that, I felt so icky I knew we had to come home.  I hope one day not to be hampered by how I feel, and just anticipate going out for the afternoon.

Time Marches On

I've been back at work 3 weeks now.  And I've been tapering off predisone.  These two things don't go well together.  I've been having a lot of pain.  I mean A LOT.  So much so that I've even been dreaming I have bowel obstructions and pain.  It sucks that I can't escape the pain in my sleep.

On top of it all, I've been having so much diarrhea that I'm in the bathroom at least 8 times a day.  Most of the time, it is mostly liquid, but sometimes it is not.  I'm also having trouble sleeping.  I guess it due to pain.  Earlier in the predisone course I thought it was the predisone, but now that I'm on 10mg/day it really couldn't be that.  So I don't know what it is.

In other things, my son has started medication for his ADHD.  It is helping him tremendously, but it is also sad that we were unable to help him without medication.  And it isn't that we didn't try.  He went to OT, we tried diet and behavior technique.  But if the medication helps him, then we will have him take medication.

Back to Work

I've been working part time from home for just over a week.  It hasn't been that great.  At least I'm at home when I feel so awful.  However, the predisone is really doing a number on me.  I haven't slept without help from Benadryl in over a week.  And even when I do sleep, it isn't for long.  I also have killer heartburn.  I hurt all the time, but am also hungry all the time.

Going Back to Work

Starting Monday, I am going back to work.  I'll be working 4 hours a day, Monday through Friday from home.  I am already feeling stressed about it.  I hope the stress of going back to work doesn't make things worse.

The predisone is helping, but I am also having some side effects.  I am having difficulty sleeping, and I've probably gained 3 pounds since last week.  Just a week ago, I barely had an appetite.  Now I am constantly hungry.  At least I am having less diarrhea.  That is a big plus!

A Visit to the Doctor (also called an unproductive morning)

I saw my GI doctor today.  I doubt it will come as a surprise that he's incapable of helping me.  Not because he doesn't want to, but because he can't.  It annoys me that he thinks now that my CT shows inflammation I'm sick, when I had all the exact same symptoms when my colonoscopy didn't show inflammation.  He ordered a test for c-diff.  Even though the problems started before I started antibiotics last week.  And he's sending me to another doctor who coordinates the drug tests for MNGI.  Unfortunately, this doctor is in Plymouth.  So that is going to be 2 hours driving in addition to the appointment.  Blah.  The doctor put me on predisone now, and will consider dropping the Humira.

We also had a doctor's appointment for my son today, to address his ADHD.  I absolutely love his doctor. She is in the exact same place we're at.  She prescribed Concerta.  I read the insert that came with the drug and now I'm scared to let him take it.  It was expensive- $60 after insurance (it would normally be $120).  Target pharmacy was a nightmare.  They only filled one of my prescriptions that my doctor filled out, so I spent 20 minutes waiting around to get my son's prescription filled, then had to wait another 20 to get the second of mine filled.  It seemed like I spent all day there.

When I got home, I made the hamantaschen for the mishloach manot.  My son couldn't wait to eat them.  They did come out pretty good if I say so myself.  We're going to the Megilla reading at temple tomorrow, and we're going to go out to Chinese before for our festive meal.  I hope it is a nice evening.

Back Again

I haven't posted for a while, but that is mostly because I was feeling more or less ok.  We went on vacation, and while I had to take pain killers and take it easier than normal, we had fun.  Swimming with the dolphin was an incredible experience, and something I'll remember forever.

But as is normal (for me) with vacations, I came home sick.  And I don't just get sick, I tend to get extra sick.  In addition to a cold which has led to a sinus infection, I seemed to have also picked up a stomach bug.  In combination with my diarrhea (which never really goes away) the non-stop vomiting (I was unable to keep down a few sips of water) ended up with me in the ER for dehydration.  I begged the doctor not to send me there, but in the end, it was the proper course of action.

While in the ER, they ordered ANOTHER CT of my abdomen (I won't be surprised if I get some sort of cancer in that area in the next 5 years).  And like many other CTs, this one had disappointing results.  The inflammation is spreading in my colon.  I really want to go back to work, but this is not helpful for me on that front.  

Blah

Today was a blah day.  Cloudy, overcast and damp.  I also felt blah.  I ran a few errands.  When I was in Michael's I started feeling really crappy.  When I got home, I took a pain killer, the first one in a while.  I had to repeat that later.  So I didn't go with my husband and son to services.  Oh, well.

I am still unsure what is going on as far as going back to work.  I hope everything can get resolved by the middle of next week.  If not, I have no idea what will happen.

Stumbling Blocks

After meeting with the occupational health specialist last week, and having the steroids take effect, I decided to try to go back to work if I can get an accommodation to work from home.  So I called my HR representative, and she emailed me the forms needed to be filled out.  However, I promised my son that I wouldn't cancel the February vacation no matter what, especially after cancelling our summer vacation.  So we are leaving whether I am back at work or not.  My HR rep said that I don't have a waiting period to take vacation, so as long as my supervisor says it is ok, I can take my vacation, even if I've only been back at work a few days.

My husband faxed the paperwork to the occupational health specialist I saw last week, and she filled it out by attaching her report to it.  Not a problem, she recommends I go back to work part time, and work from home, as long as my doctor approves.  So I called my doctor's office.  I talked to his patient coordinator.  My doctor is out of the office this week.  Next week he is in the hospital.  Ugh!  I really hope he can return the paperwork even though he is back at the hospital.  I need to go back to work before vacation.  This is stating to stress me out.  When stressed, I get more abdominal pain.  This is not what I planned.

Well, That Wasn't Helpful!

Yesterday, I went to see an Occupational Health Specialist to inquire about my disability insurance, and see if I qualified to be permanently disabled so I could get my student loans discharged.  It turned out that my doctor actually referred me to a "Work Injury Clinic".  Uh, I don't have a work injury.  Never have.  After explaining this on the phone several times, I still went, because I thought maybe she could help me anyway.  Basically, the entire 2+ hour appointment consisted of testing my ability to stand, walk, lift, bend, etc.  I was able to do everything, mostly because I hadn't eaten all day in order to be safe to drive.  At the end, she says I would be able to work part time.  I came home, and I started to think about it.  If I could get an accomodation to work from home, I could probably be able to return to work.  I really hope this works out, because I don't want to lose my job.

I thought I had lost the job but it turns out they were able to put me on administrative unpaid leave so if this works out, I can keep my job!  The only wrench in the plans is that I promised my son a vacation for his February break, especially after we cancelled our summer vacation to many tears.  It is paid for already, so if I go back to work, I need to go back for about a week and a half and then take 2 weeks vacation.  I don't know if we can get our money back, but really, I don't want to cancel it.

Here's hoping something finally works out for me!

Same Old Crap (yes, pun intended)

Well, I haven't been feeling well.  That is an understatement.  And when I have my period, everything is compounded about 3 or 4 times, so I am much worse at the moment.  The steroids have been helping, as I'm not quite in misery as much, until yesterday, when my hormones decided it was time for my monthly kick in the gut.  Even when I am completely fine, in remission and all, my period is like a mini-flare.  But now, even with the steroids and tramadol, it is agony.  I considered for a split second yesterday going to the ER, but I think I'd rather suffer than do that.

I spoke to the long term disability people the other day.  Everything for that is on track.  I hope I get better in time to save my job.  I just don't see how I can work if one week a month I'm incapacitated.  Unless I can get in complete remission, working just doesn't seem possible.

Fed Up!!!!

Last night I was up late, because I didn't feel well (shocking, I know).  So this morning I slept in while my husband and son got up and went to work & school.  Around 8:00 I came downstairs and as I was walking down the stairs, the phone rang.  It was my GI doctor.  My hydrogen breath test was negative, and my most recent blood work showed a slightly elevated CRP (a marker of inflammation).  He is putting me back on the entocort.  I was actually considering asking him to put me on predisone, so this is a better solution to my misery. I was sort of hoping the breath test would show bacterial overgrowth, as that is easily treatable with antibiotics, but no such luck for me.  Ever.  It seems my body always wants to do things the hard way.

Since the doctor called I haven't really left the couch except to go to the bathroom.  I've been very light headed today, so I've been trying to drink more (even though that means more trips to the bathroom, and not necessarily for #1).  I finally gave in and just decided to stay put, since moving around makes me even more light headed.  I am so worried about our vacation, and that I won't be able to do anything.  We considered cancelling it, but we cancelled our last vacation, and my son was so disappointed, I hate to do that to him again, so we paid the vacation off, and are now committed to going.  Maybe with the entocort I'll start feeling a little more human and will be able to enjoy our trip.  At least I can hope so.

Butt Pee Redux

It seems that I'm back to butt pee.  Lovely!  It is so pleasant and enjoyable.  Not really.  It is life sucking.  I am beyond exhausted and have been thankful for the new prescription of Tramadol the doctor gave me last week because the abdominal pain is excruciating.  I am actually considering asking my doctor to put me on predisone. But before I ask for that, I am waiting to hear what the breath test results are.  But the doctor did warn me that because I have my illeocecal valve removed there is a good chance of a false positive.

I went to Target today to get groceries and a prescription refilled. It was such a bad experience.  They were out of several things I wanted.  And the cashier was so slow, she was moving backwards.  Plus, Target has discontinued paper bags.  So not only was the cashier very slow, she paid no heed to my (multiple) requests not to pack the bags too heavy, because not only do the bags break, but they don't have any structural integrity, so my bread was all smooshed.

No Sugar, Please

I have been feeling miserable for days.  And I've been kind of busy, doctor's appointments, errands and such.  I went to the office and got my personal things.  I've had a lot of pain and diarrhea.  Not just regular diarrhea, but butt pee.  And today, I did the hydrogen breath test.  For that, I had to drink a dextrose solution.  It was so sweet, it was disgusting.  And that just made my diarrhea worse.  Sugar in general makes my diarrhea so bad.  I have to limit sweets, which isn't always easy, but today I had way more than usual.

I also had to go to Target today to pick up my husband's prescription.  I am so glad they have the bathroom near the pharmacy.  It makes it easier than running to the front of the store.  Yesterday I went to the doctor and then had to get labs and x-rays.  I was there for 2 hours.  It completely exhausted me.  I am so sick of this!

A New Year, but Same Old Crap!

I was feeling pretty good for almost 3 whole days!  I should have known it was too good to last.  Yes, I had a lot of D for those 3 days, but otherwise, I felt ok.  Today, I woke up with severe pain right in my "Crohn's Spot".  It hasn't gone away, despite several BMs.  I finally broke down and took half a Vicodin.  I don't want to be too loopy, as my mom is coming over for dinner tonight, and I still have to peel the potatoes and clean the bathroom.  I just don't have any energy to do that when I feel so awful.  If I lie down and don't move, it is almost bearable, but moving around makes it even worse.  I HATE that I can't get past this stuff.  Enough already.