I started on Humira in April ’09.

In May of that year, I had a change in insurance (for one month, talk about issues) and my regular birth control pill was no longer covered.  So, I switched to a generic brand ~ no big deal, really.. but I did like the name brand I was taking.  The name brand was one where you take the pill for 24 days, have a really light short period of 4 days and start over.  No generics of that sort yet.

I switched to the generic pill and started having issues with break-thru bleeding… and if I skipped a pill, I could cross off the rest of the month – I’d have break-thru bleeding continually.  None of it was heavy, but it was enough that I couldn’t ignore it either.

The humira, on the other hand, was working wonderfully for my crohn’s disease issues.  The seemingly only issue I was having was slight irritation at the injection site, not uncommon.  Doctor prescribed cream that helped with itching (the itching was mad), and I started holding ice on the injection site after I’d given myself the injection, instead of just before-hand.

The bleeding I was dealing with however, got worse and worse.  After 4 months or so, I quit the birth control pill altogether, thinking my body just needed time to get back to normal.  I was dragging my feet to do anything about it.  I kept thinking it’d stop soon.  I would periodically google for keywords regarding the situation… and got pretty bummed that it looked like my options were limited (ablation, hysterectomy, etc) and none of them sounded like something I wanted to have done, at least yet.  I also didn’t want to see an OBGYN.  I had no need of an OB (I’m done with having babies) and it always seems many OBGYN’s are most active in the OB part of their careers.  I wanted a specialist for the GYN part.  By January of  ’10, I was having continual bleeding, and only a couple of days of nothing, every 6-8 weeks.

Yes, really, this relates to the Humira.

In April ’10, I was really putting a lot of thought into how much of these drugs we take, how often.  I decided to skip a month of the humira.  Rather, instead of injecting twice a month, I’d just do it once a month.  I know, who am I to play doctor?

After almost the whole month, I noticed I was getting my first real break in menstrual flow since the start of those problems a year ago… And then it clicked.  So after my “trial” month of Humira, I decided to just go as long as I could without an injection.  I made it almost two months (less one week) between injections, before my gut was saying “do something soon, please!”… and guess what, I had a “normal” period during that time and no break-thru bleeding, spotting, or otherwise.

I googled this issues and found Humira can cause issues with women’s cycle – it can cause heavy bleeding, continual bleeding and, I think, lack of … but I will have to re-search again, as I just had to reformat my computer and lost those notes (shame on me for not taking better care with my bookmarks).

No, I haven’t been back to my doctor yet.

Now, I’m thinking I am going to have to and soon.  I’ve noticed the past two weeks I’ve been itchy, like my arms (Inside upper arm, near elbows) and my thighs (I do injection into belly)… No rash that I can see, but the itching is definitely getting worse.  So much so, that today I took a Benadryl to help.

Aggh.  I itch.  And I just don’t know about Humira at all any more.  Heck, I don’t know about any of the medications any more.  It’s so frustrating.

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).

I haven’t been around for a while because once again, illness snuck up on me and knocked me for a loop.

One major thing I have learned through this flare is the importance of communicating with my doctor about my crohn’s disease. It’s so easy to “forget” something during a 15 minute appointment… and forgetting can be costly to MY health, as well as time consuming. If I don’t get things worked out with my doctor, I could end up in the emergency room, costing me (and my family) hours, or days, rather than an hour, round-trip visit with my doctor. I came up with a solution, see at end of post (I hope it works well), but here’s a recap of my past couple months.

In early November 08, I switched doctors, a whole new practice even. I have been struggling with feeling like the doctors I’ve seen thus far don’t seem to really pay attention to what I am saying. It feels to me as if they have their own guidelines and if my symptoms don’t fit within that range, whatever I am feeling must not be crohn’s.

Now, I’m certainly viewing this from my side only… I don’t even feel like being sensitive to the doctors and trying to see things their way… so no like me typically, but I am the one who is sick, no only do I suffer physically and mentally (emotionally), but so does my family suffer with me.

I wish I could be the type of person who will not let crohn’s disease get them down, who pushes through it and won’t let crohn’s control them. However, my crohn’s disease came out of no where when I was 37 and after being relatively healthy all my life, it’s really been a depressing situation for me. It’s my hope that once I have things somewhat under control, I’ll find a way to cope better. So far, I haven’t gotten there yet.

My biggest issue now is getting doctor, a GI specialist, to actually listen to me..

I had a colonoscopy the week before Christmas. Mostly to let the new doctor get a decent grip on where things stood with my health. When the colonoscopy was over, he told both myself and my husband he could see scarring as well as an active Crohn’s flare. However, at the time, he didn’t prescribe anything else to my daily intake of medications.

So, two weeks later when I was in huge pain, I called asking for him to just call in a prescription for antibiotics and/or steriod… I knew I was going to need something other than Asacol or Imuran. The pain was bad enough I was almost (but not quite) ready for the ER just to gain some relief from the pain.

The doctor wanted to see me, so in I trudged, through tears and the pain of sitting to drive – the pain was behind my tail bone and sitting to drive was nauseating. He asked if I was having diarrhea, to which I said no, but I was having other issues… but that was pushed to the wayside and after he took a feel of my tail bone, declared whatever was going on probably wasn’t related to my crohn’s.

I explained how the last time I had pain there, up a little higher, it was actually the abscess giving me grief… he asked if I thought my pain was related to an abscess and said he’d have me get a CT scan (and got one that day)… however, he never discussed the colonoscopy, the flare he knew I was experiencing, never a word on adjusting medications, coping with the pain. Told me to keep my appointment scheduled in the next two weeks, told me he was sorry I was feeling crummy and he’d see me in a few weeks.

I left, sat in my car and sobbed. It wasn’t until I was in the car that I realized how quickly the appointment buzzed by with nothing being done to actually help with the exception of the CT scan.

The next day, I went to my family doctor, who proceeded to get the results of the CT scan, prescribe antibiotics and a steriod because of the obvious swelling, as well as a small abscess (not so great)… and gave me more pain meds. Thank goodness for my family doctors having so much belief and patience in listening to me.

But because I had such a rough time of it, and realized then how very important being able to really communicate with my doctor about my crohn’s disease I decided to create a simple form listing my medications, symptoms, pain issues, etc so I could give him a copy at each appointment. This will hopefully prevent the times when things get away from either of us and symptoms or issues get left unsaid, thus untreated.

Here is my Communication form to print when I see my doctor. Maybe it will be helpful for you too. I plan to create a basic, generic form too. I am also going to start requesting copies of all my tests and creating a “portfolio”.. sometimes it’s too hard to remember tests, results and times.. I think getting my health organized will help me get a good handle on it.

Communication with my Doctor – it’s a simple .pdf printable form to take with you.. keep one for your records and give one to your doctor.

* Communications Form
* Basic Communications Form

With the issues I had at the first GI office – Digestive Specialists, with the first doctor I was referred to for my crohns, then switching doctors within the practice — bad idea, in my case, unfortunately.

I thought I liked the new doctor, actually… but after my last visit, she made a comment I later thought hard about.  She asked how long I stayed on the antibiotics after I had the catheter removed. I told her 14 days.  She acted surprised and asked if that was all.  The more I thought about that, the more bothered I was.  I realized she was not paying much attention to my care at all.  Otherwise, she would have known it was her who prescribed the antibiotics for only 14 days.

Before any issues with this doctor anyway, I was having issues with the assistant.  The first doctor I was seeing had an absolutely wonderful assistant.  I loved her… I guess maybe she was just hard to live up to.  No, really, this other assistant seems to have issues with me.  She won’t smile at me, won’t make small talk (she won’t even ask how I’m doing) and when I call with any issues (pain, etc), she comes across as if I’m the issue.

So after a year and a half, I’m switching practices altogether.

I talked to my cousin, who has had colitis forever and he gave me his doctors name.  I’m going to see one of the doctors there, at Digestive Care, but not the same one as him.  Ok by me… just please, give me someone who cares about my health, my case and my treatment… who also believes me when I say “I’m in pain”.

I do love my family doctor, Dr. Mickey Denen… he is always so willing to listen, and trust what I’m saying.  Of course, he’s been my doctor since 1992.

What I’ve been feeling lately:
Battling Depressions?  Trying to keep an Up Outlook – I wonder if I should see my family dr about upping my anti-depressant again.. some days, many days, I’m ok.. but then I have times when I feel very fragile and my carefully composed positive outlook is on the brink of breaking and I may end up acting like a crazy woman (I am a mom, after-all – and the kids not listening is enough to drive even the most sane, stable woman crazy at times).

Pain in the…. mostly lower abdomen – And it’s really not too bad.  I also still get pain in back of my upper thigh, near the crease of my tush, due to the catheter and also due to the catheter, I have a lump IN my tush where it was – scar tissue maybe?  Sure is tender though.

Bowel Movements of Crohns – what a joy… some days it’s diarrhea, other days it’s a crampy constipation feeling… regardless the end result is feeling very sore and sick.  And, it’s all “normal”.  How odd?

Puking – Throwing up – This, thankfully, hasn’t been an issue since I upped my Aciphex to twice a day.  Apparently it was related to the reflux that I didn’t even know I had.  When I had the Upper GI, barium contrast they were able to see the reflux though – said it was in spurts, not continual, but apparently it was pretty bad.

Energy Level – I can’t tell, but it seems like I am needing more sleep again.  When I start getting “sick”, I start needing so much sleep – to the point my hubby calls me a cat because I sleep all the time.  Right now though, I know I’m coming off of prednisone and I expect to get sick, so I don’t know if I am, or if it’s my mind just expecting it.  Plus, with our electricity off for over a week, and other stresses, maybe depression, it could be a just need more sleep to get caught up.

I had my doctors appointment last week – the day after our Ike Wind Storm here in Dayton… Crazy days.

Anyway, Dr wants to have me to have another CT scan to see what’s going on with the absess I had.  If it’s still there, she’ll put me back on antibiotics.  Plush I am to back down off the prednisone, coming down 5 mg a week.  I started at 40 and dropped to 30 the week before I went to the appointment. So, I’m (rather quickly, I think) coming off the prednisone and I worry it’s too fast.

She (Dr) said we have to show what we are doing isn’t working before we can move forward to something else.  It didn’t dawn on me until a few days later (because of the lack of electricity and my mind was certainly on other things) that she is most surely expecting me to get “sick” again so we can prove to insurance we need to move on to Remicaide or something else.

I’m feeling pretty bummed about that – the thought of feeling sick again.. Right about the time the holidays are getting good, I expect to be dealing with more pain.  Yeah, sounds fun.  But I guess we do what we need to in order to get better.