Tag Archives: crohns

One week from today I will do something I had hoped I would never do…start Remicade infusion treatment for my Crohns.  It will be by far the strongest drug my body has ever experienced which understandably is quite scary for 30yr old hoping to live a long and healthy life.  For the past two years or so, my GI doctors had been recommending Remicade and through research of the drug online I had been resisting it with abandon.  I decided however as I made the switch to Kaiser and started fresh with a new GI doctor that if he/she recommended Remicade I would suck it up and go on it.  Now what are the issues I fear? Well below I decided to list the good and the bad as best I understand them a week out;

GOOD

• There are MANY who have called Remicade a “life-saver” for them and experienced great relief from their symptoms after starting their treatment
• No more pills.  Once on it I wont have to shove 6 huge blue pills down my throat as I’ve gotten used to for the past 5 years.
• I have hope that this can work for me…it was time for a new path of treatment.

BAD

• It is recommended due to the tolerance your body builds up against the drug to never go off of Remicade.  If I did decide to stop treatment and go back on my body would likely reject it.
• Potential side effects include hair loss (just what I need) and skin issues.
• 4hr infusions…eventually every 8 weeks, to start 2wks apart, then 6.
• A small risk for cancer and some have connected Remicade with MS.
• Lowers my bodies immune system. Have to pay special attention to avoiding infections and viruses.

I definitely have a mix of anxiety and hope as I start treatment next Sunday…I humbly ask for your prayers and encouragement for I will need both.  This has a tough emotional barrier attached to it, I guess I built it up in my mind that I would only have to do this drug if things had got really bad. No one likes the stress & stigma of having a chronic disease…especially when you are 30 and hoping to live another 60.

The Lord is the stronghold of my life— of whom shall I be afraid?
Psalm 27:1 TNIV

So I’ve been back on steroids for my Crohns treatment for the past couple of weeks and thought I would update you with how that is going.

Lets just start by saying writing this blog at 4am isn’t typical for me as I am about the farthest thing from a “morning guy” you will ever meet. One of the unfortunately side-effects of prednisone for me as been sleeplessness.  Now I do have a prescribed sleep aid, but you only get so many of those and it kinda sets you up to depend on them…like I cant sleep without them now.  Another interesting side effect for someone with my disease is a bigger appetite.  Where usually I am the last one done at a meal and I rarely finished everything on the plate, now I notice I’m first done, every things gone and I am snacking like a preganent chick!  Seriously though…its good to have some weight back on…but now the pants are getting a little tight. Lastly I have also had some random sweating issues…again not being a sweaty guy you notice even the slightest change here.

On the positive side it does seem to have kicked back my Crohns from being fully flared up.  This is the beautiful thing about this steroid is that it has a long proven track record of quickly reducing inflammation in the gut.  It is a short term solution however and I won’t be on them much longer, in fact we have already begun tapering me off them. Not sure what the future holds for my treatment as the Docs still want me to go on much stronger meds like Remicade for example which I have been reluctant to go on.

So for now…before the dawn of this new day…I sit here in my darkened living room…awake…clicking away….steroids…oh the joy and oh the pain.