Coping With Crohns

I have been MIA all over the internet for the past several months or more.  I had been on a depression medication, Celexa, which was giving me nightmares (ones I didn’t much enjoy), trouble sleeping and so, rather than speaking to my family doctor about it and getting something different, I just quit taking it. One thing is for sure.. my doctor told me right up front at the beginning of all this.. It’s not unusual at all to feel depressed when you have Crohn’s Disease.

Not a good idea.

After several months of progressively getting worse, I finally talked to doc about it.  He put me on something different (Effexor, which doesn’t have very many supporters if you search about it).  After about two weeks, he bumped up the amount I take.. I feel better now, but wouldn’t mind feeling a little bit better than I do.  I need to go see him soon and will talk to him about it then. Depression is no fun.

I notice a pattern with how I deal with things, and always see the pattern in hindsight, but when dealing with it at the time, I just can’t deal with it.  I knew last summer and fall I was depressed, but I kept thinking it would be better tomorrow and I’d call the doctor, but then didn’t feel better and wouldn’t. There was always some reason for me to put it off.  Not healthy, but at the time, I don’t know how to work around it.  Ah well, knowing the problem is half the battle, right?

As for my Crohn’s Disease, I started Humira and am feeling so much better.  I still get pain in a few different locations, and still use prescribed pain med to manage it - both my family doctor and my Digestive Specialist doc are fine with it.  What would I do without them (both of my doctors.. and yeah, the pain med too.. but my doctors are awesome)? I just don’t know.  Humira, used for both crohn’s and ulcerative colisit, is easy to do - self injection every other week with the pen (pen is called a self-injection pen or an auto injector - they are disposable, and Humira will provide a container for them for free).  As long as I put ice on the injection location both before to numb it and after to calm it, I do alright.  Sometimes it swells a bit, sometimes it bruises badly, sometimes it bleeds more than other times and sometimes it itches like crazy. GI doc gave me a cream to use for the itching, very helpful.

While everything is going well with me, my sister was just recently diagnosed with colitis. … sigh …

Edited to include:
I forget what search I did to come across this couple and their story about Ulcerative Colitis and surgery.. I got caught up in reading about Mark and Megan - while Mark is the one diagnosed with UC, it is very much a part of Megan’s life too.

They tell their story about Mark’s battle with UC, their choosing surgery and, the best part, they share pictures of things along the way.  Their story is amazing, their relationship true (honest, open), they deal with things in such a positive direct manner.. If nothing else, at least skim through the few different links of their journey, skim the story and see the pics - nothing off-putting. (Since my dad had to have an ostomy this past summer - reversed in fall - it was nice to see such a direct and open story about Megan and Mark. And to Megan and Mark.. if you happen upon this link, know I through kudos to you both!)  UC Story w pics.

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 had my last dose of remicade (also called infliximab) a few weeks ago.  I am feeling better.  At least, less abdominal pain - not gone, but less.  However, about a week or so after my last IV treatment, I started getting the most incredibly sore muscles and joint aches.  Muscles hurt to touch, hurt to move.  Joints were so achey.  So much so, I won’t carry a basket of laundry up from the basement.  It’s hard enough for me to get up.

I’ve procrastinated in calling the doctor.  I suppose I would just rather whine about my aches and pains than do something productive about it.  No, really, I expect my GI doctor to tell me it isn’t related.  And my family doctor to give me more medicine - afraid of maybe muscle relaxers, because I know they’ll knock me out.  I have enough issues with not having energy.

Honestly, I have had more energy lately than in a long time.  I still get tired through the day and have to just close my eyes for a bit. So far, other than this intense muscle and joint pain, I’m happy with Remicade - more energy, less pain, it’s good.

Out daughters baby shower is this weekend.  I think I’ll call the doctor on Monday and see what he says about the muscle pain.  The joint pain is in my shoulders and elbows (less so here), my hips and knees.  Muscle pain is arms and legs - and across my shoulder blades - particularly the muscle right under my left shoulder blade…. a sharp, piercing pain that feels like stress or tension.  But happens out of the blue, like just sitting on the couch, or my computer chair (which isn’t a computer chair, it’s a plush comfy chair).

Any remicade users out there suffering from crazy muscle and joint pain?

I had my second remicade treatment last week.

The morning of my doctors appointment, we had so much snow and ice, I called and cancelled the appointment - asked the nurse to just make an appointment for the remicade treatment at the hospital as planned.  I got a call back saying I *had* to see the doctor before I could get the remicade.  Since he was going out of town for a week or more, I had to make it in.

Thanks to my husband for getting the ice off my car and warming it up, I was able to make it in to see the doctor.

All was fine and the remicade appointment was scheduled.  It all went smoothly, if not just a little slowly.  I don’t know if it was late in the day that made it seem to take so long, or that I’d had a cup of coffee before the appointment and I was continually unplugging the IV, uncuffing the blood pressure cuff and dragging the pole to bathroom to go… again.  But regardless of the reason, the few hours I was there seemed to take forever.

Luckily, I had four episodes of Weeds, Season 3 on my ipod and I laughed through each one.  I love that show.

So, I know, what about Remicade.. well, so far, it seems to be working for me.  The few days I had before the treatment I started feeling really crampy, painfully so.  Wake me up through the night painful.  The day after the treatment, I woke up way too early, stayed up the whole day, felt great and come night, was too jazzed to sleep… wasn’t liking that much, but I don’t think it was the medication directly.

Anyway, status is… remicade is good.   I am good.  I am feeling hopeful.

Last Friday, I started Remicade in hopes of it working to keep my crohn’s disease under control. I am also continuing to take my azathioprine (imuran) daily.

I had been feeling so totally crummy.  It’s like I’d  been drinking a “lethargic” potion.. my body was so tired, my arms and legs so heavy - like lead.  To make myself get out of bed, or off the couch, required every ounce of willpower I had in me.

But in the last week, since having had my first remicade treatment, I’m slowly starting to feel more normal - as if I even know what normal may feel like any more.  I am still having some crampy, even sharp pains in my lower abdomen.. but overall, I am feeling much less pain than a month ago.

I’ve been on Flagyl and Cipro for almost 30 days now (for a small abscess and a flare)… so my feeling better could be attributed to the antibiotics… I’m hoping that’s not just it though. I really just want this to work.

How did the Remicade Treatment go?

When I was looking for information about what they do, I couldn’t find much, other than it was given via IV. Here’s how things went for me…

I had mine done at the hospital. Some people get their treatment at the doctors office, but apparently, some insurance require it to be done at the hospital.

When I got there, I wasn’t sure where to go, so I asked at the information desk. A really nice volunteer took me up. She even made sure I was in the correct place before leaving - just in case I wasn’t where I was suppose to be.

I had a room to myself, with a pretty view of the woods behind the hospital. There was a bed, which I considered snuggling into right away, but instead I opted for the not-totally-comfortable recliner and kicked off my boots.

The nurse explained a few things - that it would done via IV, they would start it very slowly and check it every 15 minutes, slowly upping the speed until it was going all the way. She said they’d found it to cause less issues starting slower (as in, less irritation, less allergic reaction). When I get there, they place a call for the remicade medication to the pharmacy. It takes about 45 minutes for it to get processed and brought up to the room. Once there, they hook it up to an iv - which they started just before it got there, as well as a blood pressure cuff. They also put a steroid (similar to prednisone) in the iv, which also helps to keep down any reactions.

I asked for a blanket (she pulled from the warmer, yum!) and snuggled in with a book - Mortal Fear, by Greg Iles (I haven’t got my Amazon Kindle yet, but when I do, oh boy!)

I’m not sure if I was just tired (seems like I always am any more) or if it was the medication, but within minutes, I could hardly keep my eyes open. I dozed in the chair, only slightly aware of the nurse coming in to check things, never aware of the blood pressure cuff taking any measurements, and about 20 minutes before everything was done, I was wide awake again - but feeling a nasty headache.

The whole visit took about 4 hours, but we were slow getting things started. She said it takes about 2-2:30 hours for the iv remicade to go in (I didn’t bother to check the clock, but will next time) - so the rest is just getting things ready to start. Once it was done, it was very quick getting out of there.

No reactions, no issues at all, other than the nasty headache, which lasted the rest of the night.

My next appointment for remicade will likely be Jan 30. It’s suppose to be given at 0, 2 & 6 weeks then moving to every 8 weeks - though I think my cousin gets his 3 months apart now (he has colitis, so maybe it’s a different timeline.. not sure).