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!!

Remicade Reaction Gallbladder Removed

Wow! Time for a post. So the Prometheus test showed I definitely had a reaction to Remicade. I had built up autoantibodies. This is what caused so many of my symptoms. Especially the rash and the migrating joint pain and swelling.

The doctor still wanted my gallbladder removed because of the low ejection fraction and the possibility of  causing future problems. The surgeon removed it 3 days ago and performed another liver biopsy and a hernia repair. I am doing very well. Everything went smoothly and I'm healing up nicely.

I don't have any joint pain at this point so I hope my system has fought off the remicade and I am on the mend. I feel pretty good and I hope to heal up from this surgery quickly and start getting strong again. Maybe the gallbladder has been a little toxic to my system because I sure feel a lot better overall. Who knows.

Is This a delayed Remicade Reaction?

Hi again!   I am slowly feeling better.  We finally have some sunshine today and crisp, clear blue sky. Makes a body feel good.

Recap:
Lately Diagnosed with autoimmune hepatitis, gastritis, and an inflamed gallbladder.  Gallbladder removal surgery is tentatively scheduled for January 28.  Still waiting for results of the test for antibodies to Remicade.  Did not have latest Remicade infusion this week per doctor's orders.

My symptoms have really gotten much better:

 •Constant upper abdominal pain is gone
 •Headaches are gone
 •Stiff muscles much better
 •Pain left back under shoulder blade difficult to take deep breath - gone
 •Puffy eyes better
 •Very bloodshot left outer eye - gone
 •Swollen bruised left ankle no injury - all better
 •Painful neck gone

 •Weakness Lethargy
 •Joint pain - much better latest just in hands and hips
 •Jaw pain
 •Stiff back muscle middle back right of spine (that's been there since before this started)
 •Abdominal rash (large red itchy bumps that come and go)
 •Different itchy areas on torso only now
 •Very weak and tired and seem to require a lot of sleep
 •When I wake up in the morning I'm all sweaty

Treatment of symptoms now:
 •Bland diet

Honestly I feel like my body has been fighting something since September. Perhaps it's all been a reaction to the Remicade. Hopefully I will find out soon.  I'm still not sure about having my gallbladder removed. I will have to talk more to my doctor about it after I find out the results of the Prometheus test.  I want to be able to eat regular food again so if it means my gallbladder has to be removed in order to do so then I will follow through with it.

Stop All Meds

Quick update...  Went to surgeon she checked me out and explained the whys and hows of gallbladder  surgery and got it scheduled.

Went to Gastro. She was concerned about joint pain and inflammation. Suspects Remicade reaction. Sent me to lab for blood work. Postponed surgery. Postponed remicade infusion. Stops all Meds.

Supposed to get mobile phlebotomist to come to house Friday for Prometheus IFX ASSAY. I was hobbling all over the hospital lol.  BP 87/63.

Gallbladder Removal Coming Up

Hi!  I'm back from my trip. I had to take it really easy on the cruise, eating a bland diet and spending time at the spa trying to get myself feeling better. I've been in quite a lot of pain especially after I eat. Therefore I've lost about 5 pounds and even threw up in a plant by the elevators on the ship.  It was all water so maybe it was good for the plant!

So with all the test results I've had they've discovered that on top of my Crohn's, I have autoimmune hepatitis, gastritis, and an inflamed gallbladder.  I have an appointment with a general surgeon next week for a consultation on the gallbladder removal surgery.

I certainly don't understand why all this has happened. I know that back in September I didn't feel well for about a month and I blogged about it. Maybe that was the beginning of these new problems.  I don't know if my Crohn's is the cause of all these other organs having problems. I'm quite suspicious that it may be the iron infusions that started this cycle of organ destruction. I also wonder if it's perhaps the Remicade itself.

My symptoms are as follows:

Constant upper abdominal discomfort that turns into waves of severe pain after eating
Weakness
Lethargy
Headaches constantly
Joint pain - elbows, knuckles, finger joints, ankles, knees, feet, hips (worse in evening also different places daily)
Painful neck
Jaw pain
Stiff muscles
Stiff back muscle middle back right of spine (that's been there since before this started)
Pain left back under shoulder blade difficult to take deep breath
Puffy eyes
Abdominal rash (large red itchy bumps that come and go)
Very bloodshot left outer eye
Different itchy areas on upper legs bruise if scratched
Swollen bruised left ankle no injury

Treatment of symptoms so far:

Nexium 40 mg 2/dy
Carafate 2/dy
Norco as needed (every day)
Bland diet

I am suspicious that the Nexium is causing all the joint pains and muscle stiffness so I am going to discontinue taking that.  The joint pain is so bad in the evening that I have to get my husband to open a bottle of water for me and help me with getting into bed and turning off the light switch on my lamp.  I feel like I'm 95 years old at that point!

If anyone has had similar problems, symptoms please share with me. Knowledge is power.

Crohn's Liver Stomach Problems and Autoimmune Hepatitis

Got to go to a Cowboys Game!

My liver enzymes were high at last two Remicade infusions.  After several tests I had a liver biopsy last Thursday.  Results are that I have autoimmune hepatitis.

I had an endoscopy yesterday and it showed inflamation in my stomach and duodenum.  This explains the severe stomach pain I've had since before Thanksgiving.

I had a HIDA Scan this morning and will find out the results later.  I am RADIOACTIVE! :-) for a day anyway.

Migraines also started back up in the last week.  I've had three.  So basically I've been a GIANT MESS. 

Leaving for a Christmas Cruise tomorrow and hopefully I've got all the medications I need to get me through this one.  I feel like I've been living at the hospital for the last week and will be glad to get away from all the procedures and have some much needed rest.

All Packed LOL

Thanks for listening!

Cruising with Crohns Again

Cruising Again

Well returned a couple of weeks ago from another cruise.  It was absolutely fabulous and so very relaxing. I actually gained 5 pounds!

Been feeling really good. Crohn's symptoms  are under control and I haven't had a migraine since October 12.  Latest infusion was last Thursday.  They did solumedrol with the infusion again. Only side effect so far is a few hives on my abdomen and insomnia the first few nights.   Had one heck of a time getting the infusion. The infusion nurse has been out sick so it took a bunch of phone calls to get me rescheduled. If I hadn't stayed on top of it I'm sure they would have lost me in the shuffle.

Doc said fatty liver could be from high cholesterol so they're gonna check that.  Will post more info soon.

Less Fatigue Lately

Okay I'm doing better now. Slowly day by day I seem to get a little stronger.  The lab tests came back a couple of days ago. The results show elevated liver enzymes and the sonogram indicates a fatty liver.  I'm skinny and I don't drink so I don't know why I would have a fatty liver all of the sudden.  I'm pretty sure it's from the Remicade.

Dr. appointment is scheduled for a couple of weeks from now and I will have lots of questions at that time.  She told me over the phone that there is no need to discontinue the Remicade infusions and she doesn't know why I'm having the other symptoms. Will continue to keep you posted.  Happy Friday!

Crohn's And Remicade Liver Testing

Now it's Monday of the following week. I am still very lethargic. I get winded easily and sometimes I get lightheaded. My results came back from the lab on my blood work and all the doctor told me was that I tested negative for hepatitis, which I didn't even know they were testing for. So the liver enzymes are still elevated and tomorrow I have to go in for a sonogram and more blood tests.

Symptoms:

Weak
Lightheaded
Tired
Cough
Dry throat
Swollen lymph nodes
Joint Pain
Body aches

On the plus side no Crohn's problems. I actually didn't go for six days.  No tummy cramps.

Something is wrong and I don't know what it is. It's making me nuts to not know what is causing a liver problem, or what these other symptoms are from.  I'll keep you posted with the results. Have a great day!

Crohn's Depression

Ok I am officially depressed. I don't want to do anything. I feel worthless. I've been hanging out in my bed most of the day. I've been too tired to do anything. This has been going on for about a month, or since about a week before my last infusion.

I wasn't feeling well and I seem to have so many ailments going on that I can't get on top of it. I haven't worked out in 4 weeks. My bowel movements are all over the place. From diarrhea to not going for days. My gut doesn't feel right. I went through the migraines and then I got very weak, lightheaded and tired.  My get up and go, got up and went. Now I have bad allergies on top of it. Watering burning eyes, stuffy nose, cough. I just want to go to sleep forever.

Can't remember if I mentioned previously but they did blood work at infusion time and my liver results came back slightly abnormal. I had to go back to hospital for more blood tests on Friday. I have no idea what any of this means. I am worried about it and interested to find out the results. By the way, I had to wait for an hour at the stupid lab for them to get to me.  Not good when you're feeling weak and low.  Poor 94 year old lady sitting next to me had to wait too. Uncool lab people!!

I am worried sick about what the Remicade is doing to my body. Is it the cause of some new liver problem?  Is it not working on my Crohn's anymore?  Is it causing my headaches and allergies?  What about my aching joints?  Or is this all from the disease itself. I must say it has got me beat right now. I get so tired of fighting it all the time. I know I sound like a miserable brat but I don't care right now. I'm tired of laying in my bed being depressed and lethargic. Maybe others that feel like me will know they are not alone.

Remicade Infusion Headaches

Just wanted to make a quick post that my infusion was on Monday.  They gave me solumedrol along with infusion to combat headaches.  That worked for two days.  Massive migraines Thursday and Friday that woke me in the middle of the night.

The week before Remicade and the week after seem to be the worst.  The week before, Crohns symtoms start returning with increased loose bm frequency and joint pain.  The week after I am very weak, bm's are all over the place and I suffer horrible migraines.

Hopefully next week I'll get rolling again.

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!!

Remicade Headaches?

Just noting that I've had headaches every day since my Remicade infusion.  Two have woken me up in the middle of the night.  Hopefully they will subside soon.  Anyone else have this experience? 

Fourth Remicade Infusion with Iron Infusion Yesterday

Well I finally got my fourth Remicade Infusion yesterday. Tried to take a few pictures so I can share the experience with everyone.  Everything went great and I had a nice nap during the infusion.  Drove myself there and back home with no problems.

Just before my Nap at the Infusion Center
 

Feeling great today.  They said the iron infusion will take a couple weeks to start feeling any better.  That's okay, I'm a patient girl.  I'm heading to work out in an hour.  Whoop!


Preparations for Poking Me

My nurse Rebecca is awesome.  She gets that IV going with no problems and she's really sweet.  She brings me pillows and blankets and makes sure I'm doing okay and I'm as comfortable as possible.  I told her they need to get better recliners because the one I always get reclines into this really weird position with my feet up high in the air and the back doesn't go down.  She brought me a Remicade embossed neck pillow that helped immensely.

Initial Poke

I also suggested they offer mani's and pedi's during infusions but I don't think that's going to happen.  LOL!

All Hooked Up and Taped Down

My blood pressure was good from beginning to end. Usually it's a little high when we first start but it was good yesterday. I guess I'm not very nervous about it anymore.

La Machine

Darn it Rebecca woke me up for the iron infusion.  Didn't feel a thing.  Hard to imagine all that iron going into my system at one time and I don't feel anything different.  Apparently it takes a while to work.  Plus I have another infusion of iron with the next Remicade infusion.  Guess they can't give it to you all at once.  The used Injectafer 750 mg of iron and I'll get the next 750 mg dosage at the next infusion.



Woo Hoo!!  Iron Going in Now!

 

So after the iron infusion they made me hang around for a little bit to make sure there were no adverse reactions.  I was really ready to go!

Sleepy Girl wants to Go Home Now

 

Other than sleepiness I have nothing to complain about.  (How unusual for me!)  I got home safely and took care of a few things like taking my daughter out shopping for shoes since she lost one of her Vans. She was wearing her winter boots to school and it's hot outside. Then I got into my cool fluffy bed and had another nap.

Rockin Out of the Parking Garage Yay!

I had a terrible time getting to sleep last night.  I think I was up till around 2:00am and then slept very lightly after that.  No wonder with all the napping I did yesterday.  I'm feeling normal today which is a great thing.  I actually feel better than I did before I went in yesterday.



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!!

Venting About Crohn's

Okay so I posted already today and I'm still trying to figure out how to Blog.  I don't know if anyone is reading but I'll keep on writing. 

I was surfing around and I noticed some questions on the internet from guys asking about weather or not to date a girl with Crohn's.  OMGsh seriously?  I've been married for 28 years and have three beautiful children.  I was in remission when I met my husband and for most of our married life.  I've been sick the last six years and he has been my greatest support.  Dear Lord people.. when someone gets sick you help them.  In my opinion, Crohn's sufferers are some of the strongest people on the planet.  Sure we have our tough times but we struggle through it and most of the time we do it as silently as possible. 

There is no cure.  There are good times and bad.  You do what the docs say to do to try and get it into remission and you don't give up because you can't.  You go through terrible pain, all kinds of nasty tests, hospital stays, extreme fatigue, hair loss, weight loss, a miriad of drugs that don't work and some of which can have very detrimental side effects, you try every vitamin and mineral supplement that's recommended, special diets, operations, sometimes you can't work or travel, etc..  But you are strong and you keep looking for answers.  Very strong.

A lot of times I see glimmers of hope on the internet.  "A cure for Crohn's" type stuff.  I read them with a serious grain of salt because sometimes you go into remission with this disease on your own and you have no idea why.  No one does.  Is it possible that they were on a certain drug or a special diet and their body simply decided to go into remission on it's own?  I first went into remission at the age of 16 when I started smoking.  My disease started up again 6 years ago when I quit smoking.  So are people going to say smoking cures Crohn's?  Heck no!!  In fact they say it makes Crohn's much worse.



Random I know but.. Yay!  Painters just finished the crown molding

I wonder what the next weapons in battle against this disease I will use if Remicade doesn't work.  I've heard a few interesting things.  LDN, FMT, Marijuana?  Who knows?  Hey I'll never give up.  You just can't.

I can't begin to name the therapies that have already been tried on me.  As a kid, I can't remember most of them but Azulfadine was the most predominant and of course steroids.  In the last 6 years it's been Prednisone, Asacol, Methotrexate, Humira, Azathioprine, Entocort and Remicade.  I'm sure I'm forgetting some but who cares at this point!  Crohn's is a bitch we just keep on fighting. 

Crohn's and Spring Break Next Week!

And I can't wait!  It's been getting more and more difficult to get out of bed at 6:00 in the morning in the cold, dark weather, to get my daughter off to school.  Add that "spring forward" time change and it's been almost impossible!  We need a break.  We're heading to Galveston and I hope it warms up down there. 

My Crohns is doing okay.  I am not the energizer bunny by any means.. but I'm getting along fine.  I wish I had the energy that normal people do.  Maybe sometime soon.  I hate being a wimp!  I keep planning on going back to working out.. and then I just can't bring myself to do it.  Not like me.  Maybe after the Iron Infusion I'll be an "Iron Woman" again.

I've had contractors at the house again this week.  We're tackling fence staining and crown molding in the kitchen.  I can't imagine how normal people live.  I seem to continually have contractors around for one reason or another.  We've been in this house for 19 years.. that might explain it!



Hiding in My Office!

 

 

A Rough Day with Crohn's Disease

So I've tried to remain upbeat but today is tough.  A few days ago my Entocort was reduced to one pill per day.  I can definitely feel the difference.  That volcanic feeling in my abdomen is starting to return.  Maybe it's a withdrawal from the entocort and my body needs time to readjust.  I've had lots of headaches and been very tired. 

Had a very painful stiff neck for several days but that's on the mend.  A headache woke me up and kept me up through a good portion of the night last night and I'm having trouble starting my engine this morning.  Feeling slightly achey and cold.  Please Spring.. come soon!  My elbows ache which is very strange.



Forcing Myself to Get Going!

 

Drank some hot tea and had a long hot shower.  Felt the same way yesterday but forced myself to get out and get things done.  Guess I've got to do the same thing today.  Any suggestions out there?  Give me strength..

Keep on Living with Crohns!

Well I've finally returned.  There is a huge water leak under our house and this is our fourth day without water.  You never realize how much you need it until it's gone.  Excavaters are digging a 19 foot tunnel under our foundation to get to the leak.  This is how much they dug out yesterday.

Backyard looks like a Rock Quarry

Should be another full day of digging before they reach the leak and then hopefully we'll have some water!

 

So as far as my Crohns.. The doc reduced my Entocort to 6mg per day and I saw an immediate decrease in my QOL.  So I'm not sure if the remicade is doing much.  The plan is to reduce to 3mg per day for a month before my next infusion.  Not sure how that's going to work out. 

 

Apparently I have Anemia from chronic Crohn's disease as well and they plan to give me Iron Infusion Therapy at the same time.  Seems like a long time to wait for the iron.  I'm thinking I need to send my doc an email and let her know what the infusion department is up to and what my status is. 

 

Seems rediculous but you really have to stay on top of your own health care!

 

 

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.