Allison worked. Allison had a life. Allison had her sweet family, her sweet friends, and the love of her life. Allison's world was pretty content...the disease stunk, but she was learning to live with it! Then evil March came along and made Allison very mad!
( Yes...speaking in third person makes everything all better :) )
I had been working and was off the weekend of my sweet darling's spring break. Andrew and I wanted to go somewhere and just get away for a little while. We both knew with my health it couldn't be anywhere crazy far off. We decided we would go see Aunt Cricket (Ruth) and Uncle Bobo (Bobby)! This is Andrew's father's sister and brother-in-law! We always see them at Christmas and sometimes in the summer! We missed them and we always have such a fun time with them. Their pictures were in my post from December!
March 19th - Andrew drove us down to Columbus, Mississippi! We arrived at Aunt Cricket and Uncle Bobo's house at about 5 pm. They came out to meet us and we gave them big hugs. We went ahead and gave them their early Easter goodies too! After that Aunt Cricket wanted to show off their new toy. The men followed behind us! They had gotten a beautiful new camper...it was so nice! She was telling me that we might take it down to the river while we were there...camp out and go fishing! We were very excited! Well about that time the men left and came back and said FOOD! Aunt Cricket and I knew what that meant so we went inside. We fixed yummy sandwiches with fresh cut meats :)! We all talked and ate at the table together. It was so nice to catch up. Well the men went into the living room...Aunt Cricket and I stayed at the table to talk about everything that had been going on at the Kelly House and the Hope House! This went on til about 8pm. I started to feel the nausea come on. I didn't want this to happen because at Christmas I had stayed sick at their house...not again! Well we talked for about an hour more, so at about 9pm we moved to the den and I asked them to excuse me.
My tummy was rumbling and cramping up and the nausea was out of this world. I sat on the toilet and it wasn't good. Well I finished and was washing my hands and hollered for Andrew. I told him that my Crohns was acting up and he knew what to do. My sweet angel ran to get my pills. Before I could get the pill bag open I ran to the toilet and sat down and grabbed the trash can. Andrew knew something was bad wrong and ran in there. At the same time as I was using the bathroom AGAIN I started throwing up...not just a little bit but it was throwing up one after another after another. Andrew got a wet rag and was trying to pat my neck and face down because I broke out in a bad cold sweat fever. I finally stopped throwing up and using the bathroom. I told him he could go and I pulled myself together. He was waiting for me in the little waiting part of the bathroom. He gave me a sweet kiss. I told him I was sorry and he told me not to be. *as always...my sweet man*
So back in the den...fun times again. You could tell Aunt Cricket and Uncle Bobo were worried and I reassured everybody that I felt so much better! which I really did! So it was time for bed. All of us give our hugs goodnight and go to bed at about 11. Well before I could go to bed I told Andrew something was wrong again so I ran to the bathroom. Again diarrhea. I got my cold hot sweats and was upset...he told me that he was sorry and was just going to sit in the room with me in case something else happened. He doesn't like to leave me when I get to feeling bad like that because he knows I have to have help me...that was about 11:30. Well I was able to go to sleep and Andrew just stayed up to watch if I was ok. At 12....woke up again and ran to bathroom. He helped me get up fast enough because I thought I was going to throw up again! Back to the bed at 12:30. Andrew again said he wasn't going to leave me like this...he kept asking me if we needed to let them know and I told him no that it would get better. At 1:30 I woke up scared to death. My stomach felt like it was about to break in half and I ran to the bathroom with Andrew and the bucket following behind. I had diarrhea again and this time I threw up again, but something wasn't right. I threw up again and again and again. I looked in the trash can and started crying! I told Andrew we had to call Mobile and fast! I had thrown up my own stool. Something was terribly wrong and it was definitely the Crohns! Throwing up stool only comes from some type of obstruction. We go back to the room and call Mobile. The on call doctor calls back immediately and tells Andrew and I to get to the nearest Emergency Room as fast as we can. I told him I was in Mississippi and wanted to be at home. He told me that I needed to go to the NEAREST one NOW! I started crying and I told him I didnt want to be stuck here in the hospital for a week. I called mom and dad and told them and they just told me and Andrew to make it to Grove Hill as fast as we could and they would meet us there. We woke up Aunt Cricket and Uncle Bobo and told them and they helped us get all the stuff thrown into the car. They felt so bad, but I felt worse about everything.
Andrew, the amazing man he is, got back in the car and drove me two and a half hours to be at the hospital I wanted to be...where I worked...so I wouldn't be stuck in Mississippi and I would be with my family. Tell me that God has not blessed me with an amazing soul-mate!! I texted Amy on the way and told her what was going on because I just needed her at that time. She goes through the same thing with her IC and I knew that she would understand and immediately start praying. Andrew and I finally made it to the ER with his dad and my mom and dad right behind us at about 4:30 am. I knew I was dehydrated, but with my pulse being 150 I knew I was badly dehydrated. My pain was out of control. Danielle who I work with was so sweet and made sure to let Dr. Hubbs know about the pain and nausea so he ordered Demerol and Phenergan verbally. She came back and started my IV and fluids and pushed the medications. After about 20 minutes I finally felt the pain/nausea meds kick in and I was out. At about 5 am Dr. Hubbs came in. He asked me what we usually did when I had my flare ups. I told him that I had been in a flare ever since October and this must just be an attack within the flare. I told him that it had never happened before like this so I didn't know. Well he put me in the hospital. Bless that man! Bless him because he did such a wonderful job with aiding this flare...not many doctors know how to deal with Crohns...thus why I have been pushed off by so many.
He put me on a steroid drip (common treatment for Crohns attacks)...SoluMedrol...He also put me on the fluid Lactated Ringers and an antibiotic which I sure don't remember. I was put on clear liquids, but I wasn't much a fan on eating. When I got to the ER I weighed 117...Later that next night I weighed 126...I was getting lots and lots of fluids! So I satyed in the hospital on Demerol and Phenergan because the pain and nausea continued to be out of control. I knew it would take time. So from Sat. to Tues. I was in the hospital. That Monday while I was in the hospital Dr. Rodriguez called. He said "Hey sweatpea...whats going on" I told him how happy I was to hear his voice and I told him everything. He said he was going to get in touch with Dr. Hubbs. Well he ordered a small bowel barium because he was afraid I had an obstruction. To do this procedure we had to go to Thomasville Hospital. The hospital allowed us to leave for the procedure and my sweet mother drove me up there. This was also up there with the worst things!! I had to drink this bubbly fizzy vinegar tasting stuff fast. Then I had to drink stuff the consistency of cement fast. I about threw up doing that. Then I had to drink this stuff that tasted like Pedialyte...again FAST! After this they followed the liquids moving through my GI tract on a screen. Also they took a series of x-rays one after another. Lord was I blocked up from all of those barium preps. Well back to Grove Hill. I told them that night I still hadn't had a bowel movement and I knew that that stuff NEEDED to come out. I know that it is not good for the barium to stay in the intestines or it will set up. Finally the next morning which was Tuesday they gave me Milk of Mag and Miralax to try to get the Barium moving. Well I finally had a bowel movement, but it was very small compared to what it should have been. I finally came home that day! Praise God! Dr. Hubbs had wanted to keep me longer, but he said it was up to me. He was afraid of my pain not being managed, but I just wanted to be home!
While I was in there Dr. Rodriguez had called again. Prior to this I didn't have a vein left in either arm. Two infiltrated and clotted. One completely blew. Two hardened and knotted up. My AC vein wouldn't even give the blood. So when he called he told me that he was going to have to start me on my last option. Remicade treatments. I started crying. He told me that he was sorry, but with me not improving or showing any sign of a prior treatment working it was our only option. He also had talked to Dr. Hubbs because it was discussed I would need a mediport/infusaport. #1 no veins #2 going to have infusion #3 possible flare ups whenever...I would need a mediport/infusaport! It was discuessed and decided that this port be the best decision for me. It was so much to take in. Well they scheduled me an appointment with Dr. Kania that Thursday for the surgical set up to receive my port. So I got out on the 23rd and would go see him the 25th.
25th - Dr. Kania's office. He explained what would be done. The surgery would be on the 30th. He explained the risks. You could tell he was upset about everything that was going on. I think he truly believed I should have been put on the infusions in the beginning, but I respect Dr. Rodriguez for trying other measures first.
26th - Dr. Rodriguez's Office. Mom Dad Addison Andrew and I went. Add stayed in the waiting room. Dr. Rodriguez told me all about biologicals. He told us about the Remicade treatments and what they would entail. I would receive my first infusion treatment Friday April 2, 2010.
How REMICADE works on inflammatory disorders:
REMICADE is a type of protein that recognizes, attaches to, and blocks the action of a substance in your body called tumor necrosis factor (TNF). TNF is made by certain blood cells in your body. REMICADE will not cure plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult Crohn’s disease, pediatric Crohn’s disease, ulcerative colitis, and ankylosing spondylitis, but blocking TNF with REMICADE may reduce the inflammation caused by TNF in your body. You should also know that REMICADE may help you feel better but can also cause serious side effects and can reduce your body's ability to fight infections.
The outcome or possibilities of Remicade: from the mouth of Dr. Rod:
1 out of 3- It works - meaning your disease will go into remission
1 out of 3- It doesn't - you will not/never go into remission
1 out of 3- It works sometimes - in and out of remission
Three options...don’t know which one it is going to be but we are going to hope for #1. Now for a nasty side effect...it is only in 5% of people but there is a possibility of getting lymphoma (type of cancer). He said that is one of the reasons he tried to put off this treatment as long as he could... because this percent is highest in younger people. We are just going to ignore this side effect though because that is just not nice.
So on the way home I had a lot of thinking. Andrew and I drove down in his car and mom and dad in theirs. So while we were riding I started crying and I was just talking to God and I asked Him "why me?" and He said "Because I chose YOU!" I started crying when He told me this. How can you argue with God!? You can't. He then showed me a vision of Jesus on the cross...and He said "Why Him?" and it hit me...Jesus suffered for Me...Jesus hung on a cross for Me! I can do this...because He did that for Me! Who am I to think that I am so wonderful that I shouldn't suffer anything through life. I almost feel proud that God would love me enough to know that I could handle this. Can’t say it’s going to be easy, but I can do it!
March 30th - Well this day was a big day for me! I would be receiving something that would make my life a lot easier with my disease. This port brought so many great things. With my attacks I won't have all my veins blown from the pain medicine. I won't have to collapse all my veins with my treatments that will in fact be for the rest of my life. I won't have to get blood drawn from a vein. This port will make all these things easier. Now, I will tell you a little about a port. It is a circular little device. A special needle is used to access this port. Now from the port runs a line (catheter)...this line runs into either a large vein or an artery...this vein/artery is considered central because it runs directly to the heart. Now with medicines being pushed it does not affect the vein like it does a peripheral vein...these veins that are central are very large and if its inserted in an artery well we all know that it large. Dr. Kania later told me that hopefully I can keep this one for up to 5 years. Once it is used up we will remove it surgically and place another one in the other side of my chest.
This was a big deal to me...1-because I was excited...this would save my life pretty much. 2-although it's not that long of a surgery it has bad risks and it is a very invasive surgery. This is due to the location of the surgery. It is located near vital organs. I know Dr. Kania and if anyone would perform this surgery, I would want it to be him. The night before surgery, Andrew stayed and he tucked me in...I asked him just to lay with me for a second and I bawled while he held me. I told him for once I was scared. He held me till I calmed down then went to the couch and I went to sleep.
Next morning...we head to the hospital. I'm a nervous wreck. When we get there Bro. Jamie was there. He stayed with us. Then Martha came to visit us before my surgery and brought me happy cupcakes! They took mom and I back to the pre-op room. The nurse asked me a bunch of questions and was able to find one vein that was slightly usable. I was thankful! They gave me antibiotics and fluids. Well I was only going to calm down slightly once I saw my sweet friend Tim who is a nurse anethescist. Once he walked in I smiled so big and got tears in my eyes. He hugged me and told me he would take good good care of me. Well he did because I was almost out of control nervous and anxious so he gave me something to calm my nerves. When we got back he put me out completely. I woke up an hour and a half later in recovery. I had oxygen and I could feel my shoulder beginning to hurt. I told the nurse and she said they had lortab ordered. I told her that was fine but I knew I would need something more. After about 15 minutes she reevaluated my pain and it was worse. She went and talked to Tim and he told her to give me some Demerol since they knew thats what my Crohns does well with. After that I felt much better. She couldn't believe a little girl like was not knocked out by the Demerol, so she let me leave just a little early. I told her I was a monster. haha. Well I stayed in pretty good bit of pain that day but Andrew kept me on a Lortab/Darvocet regimen...I taught him to be my little nurse and he does so good :)! Also...this surgery makes it almost impossible to move the right arm/shoulder! Pain! When we had made it to the house we noticed my dressing was soiled so we disposed of it. When I saw the incision I couldn't believe how long it was. To me it was large. I have had patients with ports before and didn't even see a scar.
So...into April we will go...
Right after my surgery.
My loving and supportive mom and dad.
Me with my angel.
Get better kisses!
My sweet nurse Sarah!
When we removed the soiled dressing this was my two incisions.
The top one is where the needle was inserted to thread my line.
The bottom incision is for my port.
After andrew helped me change my dressing.
You can look at my face and arms and see how much
I had swollen from the infusion. I felt like I
was a blowfish...it was terrible!
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