Recovering from Remicade Reactions

Hi all!  I know it's been quite a while since I've posted anything.  It's been a long slow recovery from all the Remicade reactions.  The docs may not agree but I believe ALL the problems I've had since September can be attributed to Remicade and auto-antibodies my system built up to it.  In short.. I was on Remicade for one year and developed auto-antibodies which means my body was fighting it.  I've had lethargy and weakness, elevated liver enzymes, autoimmune hepatitis, inflamed gallbladder, abdominal skin rashes, red eyes, and swollen painful joints to the point of barely being able to walk or turn on a light switch.

Swollen Ankle Joint No Injury

Strange Lumps moving up from Swollen Ankle

One Red Eye

Interior view of Gall Bladder

Gallbladder Removal Surgery Incisions Healing

Since stopping the Remicade I've had my gallbladder removed and am being treated with Azathioprine for the hepatitis.  As of this past week my blood tests reveal that my liver enzymes are normal.  Stool studies reveal I am not having inflammation.

Physically I'm now normal with the exception of lethargy.  My hair is falling out at an alarming rate which is probably due to the Azathioprine.  I'll be adding some folic acid to my vitamin regimen to hopefully slow down the hair loss.  Already taking Biotin.  I'm still not wanting to do much, but I'm trying every day and sometimes I manage to get rolling!

Yep Waiting in a Doctor's Office

That's about it for now.  Things are looking better every day.  Thanks for listening!!

Still Going Strong

Yikes!! Sorry It's been a while since my last post.  Sometimes life gets in the way, and sometimes I just get lazy.  Yes, headaches have been a constant problem for me.  Not just headaches but Migraines too and the doc recommended I go straight to the migraine medicine (Relpax) and avoid the ibruprofen.  The headaches seem to become more frequent the week before and after my infusions.  They gave me Solu-Medrol at my last two infusions which did stop the headaches from coming for a week or so after infusion.

I would say my Crohn's is in remission.  The Remicade has really worked.  Cramps are gone completely.  No more fevers and I've been able to travel as well.  I even went on a cruise!


Leaving Port

It was wonderful not having to worry about where the nearest bathroom was or how long I would be away from one.  I was very careful about fully sanitizing my room with Lysol and very careful in the restaurants and buffet lines.  Lots of hand sanitizer all the time just to be safe because a cruise is where all my problems began 6-1/2 years ago. 

 

Zip Lining

I will continue to keep you posted.  Thanks for listening!!

Trip with Crohn's

We returned from a trip to Galveston on Friday.  It was a great trip, the weather was nice and my Crohn's behaved well.. which is a good thing because the exhaust fan in the bathroom didn't work!!



Mom and Me on the Beach

The kids had a good time too.  They spent all day outside at the pool or on the beach.  The condo was not the greatest as far as cleanliness but we disinfected everything so we survived!  I don't know if I'm a germaphobe or what, but I'm always scared I'll get a stomach bug when I travel.  After all.. that's what started the last 6 years of flaring.  So I'm always careful.

Daughter and Her Friend Having a Blast at Galveston

This week I've returned to my exercise routine.  I work out at noon almost every weekday with aerobics and strength training.  I've been pretty bad about it over the winter months but I'm forcing myself to get back into it.  I had such low energy and such a hard time staying warm, the last few months, that I sort of dropped out for a while.  I'm so glad I've gone back to because the women I work out with are so amazing and nice and supportive. 

 

My next infusion is on Monday so I hope it doesn't drag me down.  The Remicade infusions lower my energy for a while and give me headaches.  Maybe my body will adjust to them over time.  Does anyone else experience this with Remicade?  Also looking forward to the iron infusion the same day.

 

So Spring break is over and it's back to the old routines.  At least the weather is warming up a bit and hopefully I'll have the energy to work in my gardens soon.  It's been so neglected the last few years that I have a lot of work to do out there.  We have water restrictions here so a lot of plants have died.  My backyard is beginning to look like a desert wasteland.  Gotta fix that!!

Yay I'm Here! Coming out about my Crohn's Disease

Finally I've started a blog in hopes it may somehow help other Crohn's Disease sufferers know there are others out there like them.  In some way maybe it will help me too because Crohn's is a very lonely disease for me.

I think Crohnies often suffer in silence about so many things that go on with us.  Well I do anyway and it's time I spoke up!

My disease started at age 9 and it took a long time for them to diagnose.  There were no easy breezy colonoscopies back then.  Just horrifying for a child proctoscopes!

It wasn't even called Crohns back then (late 60's).  They called it granulomatous colitis.

I somehow went into remission at age 16 and didn't have another flare until age 30 and it was pretty quickly under control after a short hospital stay.

Fast forward to age 49 (6 years ago) and a Carribean Cruise where I supposedly contracted Norovirus. I've pretty much been sick ever since.

Doing pretty well right now on Entocort and Remicade Infusions.



Third Remicade Infusion - Fingers crossed!

Apparently I need to take a picture when the lights are ON!  (Sorry for the graininess)

I can go into more detail later if there is any interest. Isn't it crazy that after 46 years of this disease for me there is still no cure?

I can't even begin to name the numerous medications I was put on as a kid and in the last 6 years as well.  Really hoping the Remicade will get me into remission.

In my experience Crohn's runs the course it wants to and all the docs can do is try to alleviate symptoms.  No medicine or diet has ever worked for me so we'll see what happens with Remicade.