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Wednesday, April 7, 2010

Back to Square One

December 2009

So I left off in the last post with the remark that the fistula was back. I went to see Dr. Rider about the problem late November. When he found out that I still had not had my colonoscopy to diagnose if I had Crohns, he became very frustrated. He said that if he would have known Dr. Rodriguez was going to take that long, he would have done it himself. Well there was nothing we could do about that...can't cry over spilt milk. We let him know the colonoscopy was scheduled for the 11th of December and he said that after the colonoscopy he would take me directly back to the Operating Room and perform the second repair surgery. (The reason he tried the first surgery with the insertion of the catheter was because he was afraid to cut directly into my muscle. With doing this you have the possibility of leaving the patient incontinent...meaning they can't control their bowel movement...if you still don't get it...I would be wearing a diaper.) Dr. Rider explained this time that since it was reoccurring it was serious, and that he must cut into the tissue and the muscle.

So now we are to the day before the colonoscopy and the second repair surgery. This would equal one of the worst days of my life. To prepare for a colonoscopy you have to drink the nasty tasting prep. This stuff tastes worst than Pedialyte...its TERRIBLE! Well Dr. Rodriguez is so kind that instead of me drinking just a little bottle of Mag Citrate like I give my patients, he had it prescribed for me to gobble down an entire TWO GALLON DRUM of this NASTY JUNK! Well first of all at the time I was down really bad with a weight of 110...their is no way in heck I can hold/drink that much fluid. So I try drinking. I throw it up. I started crying...there was no way I could do it. Called mom and she was like You have to do it! Then as all mothers do...she had a plan which was a very smart idea - mixing the prep with another drink. Well I could only have clear liquids...so I think! Two gallons of white grape juice to add! LOL! I had to mix A LITTLE of the prep WITH A LOT of the juice :)! I did not drink the 2 HUMONGO GALLONS...but I did a WHOLE 1 1/2 GALLON! Yay me...I accomplish a big feat! HAHA! and...my tummy looked like I was 12 months pregnant if that was possible! I also stayed on the toilet forever, which is what's supposed to happen. Not that you want to know that, but this is MY blog and MY story...its X RATED! :) So at about 12 midnight I had an attack from the prep. My stomach was aching and cramping terribly. We had to call the hospital emergency answering line and the Dr. told me to sit in a hot bath. I screamed for about 30 minutes and it finally subsided!

So now to the day... My parents, Andrew, and myself (always the same four going to the wonderful dreaded places) head to the hospital bright and early that morning. We get to the hospital check me in and I go back to the GI lab. I say goodbye to the parents and my love and get taken back to the room. The nurse starts my IV. Well she blows the vein, but says that its still "usable"...ummm when I start my patients IVs if you blow an IV you blow an IV...you need to remove it, discard it, and start a new one...anyways...she starts the fluids. Dr. Rodriguez comes in and talks to me about the procedure. I asked him if he had already talked to Dr. Rider about the surgery to follow. He looked at me flabbergasted and said "no...I don't know anything about a surgery." I immediately start crying and said "what" I explained to him about the fistula being back. Dr. Rodriguez apologized. I told him it was not his fault that Dr. Rider was supposed to get in touch with him. Well he leaves the room to go find out what is going on.

Meanwhile he comes back in and tells me that he is going to try his best to get everything settled and figured/worked out. So while I'm upset and stressed before my procedure Mr. Anesthesiologist comes in to knock me out...*I don't want to be knocked out...I want to know that all this crap is figured out because I have a problem with my stupid booty hole again and I need it fixed* -this is what was going on in my head...while I'm still rambling in my head....*BOOM* I'm gone! Thank God or I might have had a panic attack! Hah!

I wake up...here it is...are you ready because this is the part I might start crying...

I wake up in recovery from the colonoscopy the curtain was pulled and I was in a little room. I was waking up and the nurse was beside me. I started immediately crying when I woke up and I looked at her and said..."do you know? do I have it?" She just rubbed my head and said "Let me get the Dr. baby" Dr. Rodriguez walks in with that look of I'm so sorry! Before he could even speak I asked him "Dr. Rod do I have it? Do I have Crohns...Do I have the disease?" I was still crying. He said "I'm afraid so sweetpea." *he always calls me that* I started bawling even harder. When you are told something like this that is life changing...you want your mom, your dad, your love! I didn't have any of the three. I was all by myself in this small little white room with my doctor. I looked up at him still crying while he told me that he was sorry and I asked him "can I just have a hug?!" He hugged me and rubbed me on the back trying to make me feel better. I regained my composure and he said do you want to see your pictures. I nodded and he brought back a sheet of paper where he had printed off the worst areas of my intestines. I couldn't believe it...what I had seen in my nursing book I was seeing on a paper...but it was ME...MY BODY! It was deeply ulcerated with inflammation throughout everywhere in the intestines. It was diseased all over.

Well I was a little happy when I saw Dr. Rider pop his head in. He was wearing his sweet little bow tie as always. He smiled when he saw my tear stained face and said "hey hun". I told him I was happy to see him and he let me know that the nurses would be taking me back to the operating room to prepare me for surgery. I was relieved to hear this. So as they wheeling me from the GI Lab to the Operating Room I look up and I see the line. My mom, my dad, Andrew..and wait...more...Hope and Nathan! I immediately started bawling again. Number one because the three people I had needed were finally there and second my brother and sister in law had come just to be with me on this big day! Once I get to the OR pre-op room I'm greeted by all my former nurses that I had in October. Their OR nurses are PRECIOUS! They all hugged me and got tears in their eyes when they learned that I did have Crohns!

Something that was not good that I thought about. I went under anesthesia TWICE IN ONE DAY! That is NOT GOOD! Even you all would know that!....ok moving along

I came out of surgery and this time they were admitting me. Number one because this surgery was much deeper and number two I ended up in the ER with the first repair. Dr. Rider and the nurses knew that I would need high high pain management. I told Dr. Rider about Dr. Fagbongbe explaining that the morphine would not work. He agreed and asked what he put me on in the ER that relieved me...I told him the 75 Demerol...now I'm a nurse and for my size that is UNHEARD of...but this is no lie...my tolerance for pain is unreal and you have to get used to it with this disease. Next, when it comes to pain medicine...it takes A LOT to work for me...(Dr. Rodriguez says its because with my case being so bad my pain threshold is almost unmanageable! - this wasn't said at that time, but it was later explained when I asked out of curiosity.)

My post-op nurse, that I absolutely loved, began wheeling me to the room. My mom walked with us. I looked up still groggy and told the nurse I was hurting. She told me that they gave me something after surgery and when we got to the floor I could get something again. I kept feeling the pain get more intense with each passing second and I knew it wasn't going to be good. I kept on complaining and you could see on my mom's face that she knew something bad was going to happen...

We get to the room I'm still complaining of pain. The CNA comes in to take my vitals. Now let me tell you in advance...since I'm small my blood pressure only runs like 80/60...that is normal for me. Now medical terms normal blood pressure is 120/80. CNA takes blood pressure...machine shuts off at 140...shuts off at 180...shuts off at 200!!!!! -she should have been running- Now while this is going on I'm almost out of it...I was red, I was crying, I was hollering...I was in PAIN! ....up to 220...230...240...she takes off running down the hall for the nurse. Meanwhile Nathan, Hope, Mom, Dad, and Andrew are just standing there like Oh my gosh and getting scared because they know something is not good...the nurse runs in and pushes the Demerol. After about ten minutes I start to feel relief...after a little while they come back in to recheck and it was still elevated from all the stress, but it had gone down thankfully out of heart attack/stroke range!

I stayed out of it the entire time at the hospital...needed pain medicine every 3 hours...it was terrible! I felt like I was dead...didn't even have a clue who was in the room half the time. So I stayed in the hospital for 4 days and went home on a good bit of pain medicines. I was down for about 4 weeks all together. The recovery was the worst part. If you know anything about the rectum/anus...it is a complicated thing. Besides there being so many nerve endings you also can have what are called vagal responses and they are terrible...I copied a section so you could read what they are...


Posted By: Jeffrey Utz, M.D., Neuroscience, pediatrics, Allegheny University
http://www.madsci.org/posts/archives/apr99/924734804.Me.r.html
A vagal response arised from the effects of stimulation of the vagas nerves. The response includes a decrease in heart rate, blood pressure, a feeling of light- headedness (from the decreased blood pressure), and nausea. Vagal responses are caused by many things. They include suddenly getting up, pain, fear, excitement, immersion of the head in cold water, or stimulation of the coratid artery in the neck. Even going to the bathroom can cause the effect in some people.

I would get so dizzy...my body would break out in a sweat, but it was so strange because I would bounce from hot to cold. I would feel as though I was about to faint....also the light-headedness that comes with the dizziness...eww its just terrible! I had those throughout the entire recovery.

So finally it's the end of December. I was still recovering from everything. We made a trip to Mobile to see Dr. Rodriguez. He told me that there were different options for Crohns patients, but with me being so young he wanted to start at the bottom and see how I responded before moving to the most invasive drugs. With the invasive drugs (the Remicade infusions that I'm taking now) you have risky side effects. So we started with PO (oral) medications.

Asacol (for ulcers) - 2 pills 3 times a day - 6 pills
Imuran (immunosuppressant) - 2 pills a day - 2 pills
Folic Acid (for depletion from above drug) - 1 pill
Aspirin (peripheral blood clots)- 2 pill a day - 1 pill
Hyomax (intestine cramps) - 1 pill 2 times a day - 2 pills
-worst pain it literally clamps down on itself
Hycosamine (when cramps persisted) -3 pills
(as needed) 3x until cramps subside
Darvocet (pain)
(as needed) 1x every 6 hours -who knows haha
Phenergan (nausea) 1 every 4 hours -no lie about 4 a day
(as needed but almost everyday)
My Crohns is terrible about nausea

Now these were all added from December til me most recently stopping PO meds right before my infusions....I showed no response to any of these treatments from December til April because I had my flare-attack on April 19.

The list I made is not only the routine medications but also includes PRNs because those are almost the ones I need more than anything else. That is probably rounding to 24 pills a day!!!!

24 PILLS AT THE AGE OF 21....THAT IS MORE PILLS THAN MY AGE! I got to the point right before I was taken off of the oral medications that I almost couldn't even swallow them anymore. Taking that many a day is crazy. If I was 100 maybe...for all you vitamin people I'm sorry...I just couldn't do it, but then again...MY IMMUNE SYSTEM IS ROCKING...thus why it's what is KILLING ME/ATTACKING ME! haha! Ok...I joke about it...I always tell my family "My immune system is better than yours :)"

If you don't know Crohns is an autoimmune disease so it's my own superman immune system that is attacking my body. It is so powerful that it has to find something to fight...well mine decided that it would fight against my GI system along with other things that Crohns attacks.

OK...I think I wore out December of 2009....Overall I sum up this month as Allison Marie Kelly being a limp rag that laid on the couch all day and was highly sedated!




After my second surgery and diagnosis of Crohns I couldn't
miss our Christmas @ Aunt Crickets and Uncle Bobos and of
course Aunt Ruth too! I stayed sick the entire time, but I
wouldn't have missed it for the world! This is Andrew's parents
(Bob & Judy) his brother and our sister-in-lawe (Nathan & Hope)
and then Uncle Bobo & Aunt Cricket with Aunt Ruth in the middle! :)




This picture shows how tired my sweet angel and I were.
We had still not recovered from everything! He is so good to me!




Me and my angel - We are sweepy!
Christmas 2009 @ my house!




Our Chrismas @ the Kelly Home!
Ok...now don't think we are crazy for all the presents...
we had his family's under there and my brother came from North Carolina...
so there :)




One of my most favoritest things of Christmas 2009 was getting
to see two of my favorite people...Amy and Kyle Brooker!
They are our dear sweet precious friends who now live in Georgia!
We love them so much! Nathan, Hope, Me, and Drew all went to her
family's house and had a little Christmas with them! We had the BEST time!




Me and my sweet Amy! She also suffers with health problems.
She has Interstial Cystitis and Endometriosis! Please keep her in
your prayers. She is an amazing woman who loves the Lord and is such a
great support to me! God has blessed Andrew and I with Kyle and Amy's frienship!




2 comments:

  1. God is going to use you in a mighty way Allison! You may know you whose life you touch by sharing your story! We pray for you everyday! Keep your faith sweet girl! We love you very much! :)

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  2. We love you both so very much too! I went through tonight...couldn't sleep due to pain...and edited lots of errors! I had told a friend that God had just burdened my heart to get this finished so I was trying so hard to get that accomplished! Fast written...not as many errors as there could have been, but if you were confused on something go back and MAYBE it will be clear! LOL! I love you sweet girl! IC, Endo, and Crohns are going down!

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