Posts tagged “Humira

Sick of being Sick

I’m sure there are others who feel the same way.  I’m so sick of all the illnesses we’ve had in our household.  I believe there has been at least one illness infecting our home since before Christmas.  We are on our second strep incident in less than a month.  I have some kind of virus…feeling much better than I have in the last 5 or so days but still have a hoarse voice, cough and extremely tired.  On top of the day-to-day illnesses, I’m fairly certain that I’m pretty anemic now too.  I had an abnormally heavy cycle over the weekend and a Crohn’s/UC flare-up began on Sat. And, it’s not a minor flare-up.  A good amount of blood loss in outputs.

I know my doctor will again push daily shots of Humira.  I’m very much against the treatment.  I think he was using a scare tactic by telling me I had to take the shots to prolong my life so I can see my kids grow-up. Hmmm, not exactly the best thing to say to a person who is dealing with Post-tramatic stress and severe anxiety due to her step-father being killed in a horrible construction accident on Christmas day ’09; which was in a string of deaths affecting our family.  I was literally scared to death of death.  It was all I could think about. I didn’t want my hubby going to work.  I didn’t want my kids going to school.  With that aside, I’m still shocked my doc used this approach.  At the time I thought ‘ok, this is really serious.  I’m going to have to take the shots.’ I’ve been through numerous docs in the last 15 years and he is one of the ones one I’ve trusted the most so that does weigh-in on my decision.   On the other hand, I’ve been in much worse shape…like in the hospital without food for several days.  I wasn’t bleeding, not throwing up, not in sever pain…was the Humira really necessary??

Over the course of the last 18 months and a few unfortunate situations, the trust I had in my doc has been trickling.  In the past, I’ve respond well to antibiotics and he refuses to use them in treatment.  We used to have a relationship where he presented the options and then together we choose what to do…not anymore.

When this Humira issue began budding its ugly face, he even presented me with paperwork to apply for charity assistance due to the drug’s cost. To me, the cost doesn’t even qualify as a reason to consider not taking the shots. Giving my self the shot would be a compliance issue. However, the largest reason is their own pamphlet/brochure!  Every single page addressed the side affects of the meds..in a rather large font size for a brochure.  Then you begin considering why each page is designed around these warnings.  Did the government require the warnings?  Is the company that unsure about their product?  It is a product after all, not just a treatment.

No matter the reason, after a flex-sigmoidoscopy, I was able to get around the shots.  However, I continued and still have this pain in my upper abdomen off and on.  I should have been scheduled for a colonoscopy not a flex-sig.  I questioned it twice and the nurses insisted the flex-sig is what I needed.  When I was on the table and the doctor walked in he was prepared for a colonoscopy.  Ugh!  Duh! He claimed that he had changed his mind after my appointment and someone forgot to call and tell me.  Accidents do happen and I settled with that.  We proceeded with a flex-sig just to get an idea of the amount of inflammation in the lower portion of my colon.  Turned out, it wasn’t bad enough for the shots.

I went back for another check-up and again complained of the pain.  I had noticed by then the pain did correlate with how many outputs I was having.  If I was backed up, the pain was there.  If my outputs were fairly normal, there’s no pain.  He said his guess is that the lining of my colon is thickening causing some discomfort when I’m constipated.  He once again began his debate for Humira.  I insisted on first having a colonoscopy (my preferred choice), or even in the least a CAT scan.  He chose the scan.  I thought about it and called back saying I really thought a colonoscopy was warranted.  Nope, he wanted the scan….which ended up showing ZERO, zip, nothing…expect for a $5,000 bill.  Still no answer to my pain but it got me off the hook where Humira was concerned.  He said that over the last 5 years, I have had ‘smoldering inflammation’ that will end up with the need for surgery if I choose not to take the shots later down the road.  Generally, the main area of inflammation is in the last 32 cm of my colon.  Therefore, I will likely end up with a colostomy.  Again, a scare tactic??  I truly believe a lot of this has to do with the endometriosis which surrounds my colon in the same spot, just on the outside of the colon.  My GYN tends to agree.  My GI disagrees.  But she’s a she and he’s a he.

I missed my last GI appointment because he had to reschedule – I’ve yet to reschedule.  I’m almost out of my meds and now with the bleeding as it is, I’ve got to buck up, stop avoiding the problem and do something. Recently, I saw a friend of mine who also has Crohn’s and the same doc. He’s been pushing the Humira on her, too.  All I said was that I was having some issues with him.  She said she was too.  Then I brought up the Humira.  We both have the same reason for our issues.  Why is he pushing so hard?  I’m just not convinced that the pro’s out-equal the con’s in this instance.  Especially since he pushed her to take Remicade and high levels of prednisone.  Neither treatment helped.  She ended up having surgery and as a result of those meds she’s now been diagnosed with has Lupus and osteoarthritis…she has two biological children and two step-daughters.

Should I even bother going back to him though?  I’ve been seriously considering just changing docs, yet again.  It’s exhausting just thinking about it.  I don’t even feel like I can go to our local support group for suggestions because he is an intricate part of the group.  And, then I begin asking myself, why is he practicing like he is…I don’t want to think about the possibilities…..

Thanks for listening!!


IBD Strikes Again

I had hoped to share more of this past weekend’s Cub Scout Campout but it’s the Crohn’s disease that I need address today.  In an effort to help others with IBD or IBS, please note I will be openly discussing the Irritable Bowel Syndrome and Disease symptoms.

Two Friday nights ago I ended up in the ER or the ED as they’re calling it now.  The Thursday before I woke up with a soreness in my back on the upper left quadrant.  On Fri., the pain had increased and moved to the front, in addition to the back.   pneumonia has been going around and although I didn’t have any cold symptoms, I had a friend who also didn’t have the cold symptoms but did have pneumonia.  So I thought it’d be best to go in to my family doc so I didn’t end up in Prompt Care or the ER over the weekend.  Wishful thinking at least.

I was able to get in with his nurse practitioner who did send me for a chest xray to rule out pneumonia.  She said it could be a lot of things and that we would start there.  she did warn that if I were to develop a rash it could be Shingles (Yay! Great!).  She also recommended going to the ER if I became feverish or if the pain increased.  By midnight I was experiencing lots of pain no matter what I did…sitting, laying down, laying on my side, standing, stretching, etc…  Then my abdomen began to spasm as though there was a child inside kicking non-stop.

So as many do, I jumped on the ol’mighty internet where I read myself scared.  It could be my pancreas…the same place my sister-in-law’s mom has cancer.  Then I mentioned to my hubby that according to one of the diagrams, the pain is located near my spleen.  He answered by saying “Ya, I’ve heard a ruptured spleen can’t be good.”  The combo of the pain and fear prompted me to get dressed, put my shoes on and hit the road.  Thirty minutes later I was exiting the interstate and taking a right to the ER parking lot.  The doctor initially thought it was a kidney stone.  They gave me pain meds which relieved some of the pain and then waited for the CT scan and blood draw results.  The CT scan showed a clear kidney but heavy amounts of stool in my transverse colon.  My blood study also showed that my hemoglobin had fallen from the last draw putting me at 10.6.  :o(

I already have an upcoming appointment with my Gastro so from there I followed up with my nurse practitioner about three days later.  Due to the drop in my hemoglobin she did another blood draw.  It dropped even more.  She suggested seeing a Hemotologist.  This is a road I’ve gone down a couple of times.  In our area there’s only one doc who specializes in my type of anemia.

**Background on anemia treatments attempted….About three years ago he prescribed iron infusions.  It was during the winter and the day of my first infusion the truck gelled up.  I was able to get to the farm and pick up my in-laws car but I was still about 20 min. late to the appointment.  Since I still had another 40 min. drive, I had called ahead to give them a heads up and make sure I could still get the infusion.  Long story short…they said to go ahead and come.  By the time I arrived I was pretty stressed.  They started the iron drip and I went into anaphylactic shock.  It was the scariest experience ever.  It began with nausea, back pain, then I couldn’t breath and finally I went temporarily blind.  After some serious Benadryl the nurses got everything under control.   The doctor felt that the combination of not being pre-medicated with the Benadryl and the stressful morning resulted in the anaphylactic shock.  We attempted it a second time with the same result.

Back to the real story…I ended up agreeing to see the Hematologist after talking with the Gastro at my appointment Oct. 18th.  The next day I received a phone call from my Gastro at about 6pm.  I haven’t seen him since Jan.  Based on my last three scopes and a CT Scan that’s a few years old, he strongly felt that I needed to begin administering daily shots of Humira.  I explained that I will not begin taking the medication which has numerous side-affects, based on a guess of how my colon looks at this time.  I asked if he would like to do a full colonoscopy or a CT scan.  I had the CT scan done this morning.

The technician indicated that if they found something serious I’d be notified before the end of the day.  Otherwise I should hear from my doctor’s office before the end of the week.

So now we wait.  And search for additional research.  And, contemplate finding a somewhat local support group.

I’ll keep you posted…and tomorrow my post will be light-hearted and will focus on the skits from the Cub Scout campout.

Thank you for staying tuned!