Tag Archives: Autoimmune disease

Remission?

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Hello everyone!

I am sorry that I haven’t written anything in a while.  The combination of Entyvio and Stelara that the Mayo Clinic had put me on resulted in a short remission and I tried to live my life to the fullest during that time!

In March, I went to the Mayo Clinic for a checkup.  They performed several tests and came to the conclusion that I could finally get my drain removed, my fistula had closed thanks to the combination of the two meds!  I was so happy!  I could finally soak in a bathtub!  When I got home, I felt great!  I had a doctor’s appointment in April and the doctor told me since I was gaining my weight back and keeping it on, that I could stop the TPN!  They still wanted me to keep the PICC line in and monitor me to make sure everything will be okay (I’m glad they did, later on).  The doctor did prescribe a couple of bags of saline in case I felt dehydrated, I could just hook myself up to rehydrate.

During this short remission, I lived like I was on borrowed time, (and I was)!  I ate what I wanted to eat, drank what I wanted to drink and my house had been cleaner than it ever was!  LOL.  I had so much energy and I was so happy that I could finally feel like a normal person for a change, I even signed up for a lot more volunteer opportunities this summer!  During this summer also, my husband was traveling a lot for work and I would have to take care of the house inside and out, so then was a good time for this remission to happen.

Around mid-summer, I was sitting on the couch late at night and I felt something very familiar.  I felt a little air pass through where my fistula once was.  I wanted to dismiss it thinking it was my imagination, however, I knew deep down that there was a possibility that my fistula was coming back. — So, just to recap exactly where this fistula was, my small intestine (or what was left of it) had dropped down and attached itself to my bladder fusing my small intestine to my bladder.  Before I had taken the meds, the fistula was causing my small intestine’s contents to leak into my bladder, therefore, I was urinating feces while “urinating” causing severe urinary tract infections.

I kept a vigil every time I felt something that wasn’t quite right. I would note what I ate, what I drank and when I would feel that feeling.  At first it was maybe once a month I would feel some air leakage.  Then it got a little more frequent as time went on.  I then started to notice some symptoms of a urinary tract infection (burning, feeling as if I to go frequently, etc.)  At this time, I had a doctor’s appointment with my gastroenterologist.  I told her my story and what I was feeling at that time.  She ordered a urinalysis and told me she may change my medicine up next visit.  The urinalysis for a UTI came back positive.  So, for me that means my fistula is returning and is leaking again, not sure what the doctor thinks yet.  She ordered me some antibiotics for that UTI.  The UTI disappeared but now I feel as if I may have another.

I am not ready for what the future holds for me quite yet.  I still have a lot of living I want to do.  I am also trying not to get so down on myself because I know it won’t help anything.  This disease is so horrible and unfair, it lets you feel good then shoots you back down without any warning. There is at least one good thing that has happened to me this summer.  I made a new friend who has Crohn’s Disease also. I know I can talk to her when it starts getting too much for me or just to have someone there who knows what I’m going through and how I’m feeling.  Of course I can do the same for her.  I do believe that God puts the right people in the right place when it is needed the most.

Again, I’m sorry that I haven’t written in a while, but I had to get my time in while I could!  I hope that everything is doing well with all of ya’ll.  Remember to take this disease one day at a time, as I need to take to heart now. Please keep me in your prayers. I have asked God for one more favor and I know it will come to light when the time comes.

Chow for now,

Kelly

Autoimmune Flare up or Allergies?

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Hello everyone, I hope you are doing well these days.  I am going through some things that I haven’t been through since high school.  It took it 20+ years to resurface, but it is back with a vengeance!  Maybe someone has heard of this condition or know the cause for this and can help.

Back when I was in high school, my junior year, I would get this sensation in my lips.  They would start out feeling numb then they would start itching. Before you know it, they would swell to the point where it looked like I had been on the losing end of a big fight!   I could not for the world figure out what would cause such a heinous disfigurement.  I would feel fine otherwise, I just couldn’t go out in public until the swelling went down.

My mother first took me to my primary doctor, he referred me to an allergist.  I wasn’t allergic to anything so I was referred to an Immunologist.  The Immunologist told me that it was my immune system that was going wacky and attacking my lips for some reason making them swell that way.  There wasn’t anything I can do for the attack but he did give me some small white pills that I was to take when I felt the numbing sensation coming on.  Whatever those pills were, they worked like a charm.  STORY TIME:  One day I forgot my pills at home when I was at school.  We were watching a movie in class when I felt that my lips getting numb.  I had to run to the school office and call my mother to have her bring my pills to school for me.  I went back to class and the office called when my mother was there.  When I went to the office to get the pills, my mother was still there and the office assistants took one look at me and told her she better take me home because I was a lot worse than I was before.  That’s why everyone I passed in the hallway was looking at me strangely!  It took about 2 years to fully get it out of my system where I wasn’t swelling up anymore.

Now, just about a week ago, something again is going on with my lips.  In the morning, I wake up and it looks like I just got out of lip surgery!  During the day, it will go down, not to normal, but better.  They hurt badly, are numb and itch terribly.  I just let my doctor know today because it seems to be escalating now. My daughter, Bella likes my lips now because she says I look sassy! If they didn’t hurt so bad, I may consider keeping them this way!  Again I tried to figure out why my lips are swelling like this.  Maybe my immune system is going wacky again?  Maybe allergies?

If there is anyone out there with or without an autoimmune disease that has had something similar, please let me know.  What was your Diagnosis?  What was the cure?  

Just remember to take this disease one day at a time, and we will get through this together.  Please send up a little prayer for me during this time..

Chow for now!