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!!