I'm a few days late on writing this...my apologies. I have been so tired, weak, and sick. No excuse, because I don't want to get behind on these posts and how I feel.
Jan 20 - Day After my Consultation with Dr. Comerford and his fellow Josh. I wrote in the previous entry that Dr. Comerford and his staff had set the DexaScan and the MRI Procedures the next day which would be the 20th!
This morning I was not feeling well. Nauseated and very weak. The weakness/exhaustion is normal due to my Chronic Fatigue, but you have to understand I was extra Fatigued due to the previous day. We had an MUSC encounter from 5 - 6...something like that.
So not feeling well already. Again Mom, Dad, Grandma, Papa, and I loaded up in their van and headed for Charleston and MUSC. When we got their we registered at Ashley's Tower (the digestive building/part of MUSC - how nice that they have their own place dedicated to Digestive Diseases). So after registering we took the Hospital Trolley Bus over to the Rutledge Tower for my DexaScan. After registering in the Radiology part of Rutledge Tower, I filled out more papers as I had for two days. They called me back and I lied on the table for the Scan to begin. Most of you women have had a DexaScan. Whenever you go for your "female check up" women over age 40 I think it is, have a DexaScan to check for Osteoporosis. So...why would I have one...? Good question...the answer is the most Absolute Amazing Answer and Genius on the Doctors Behalf.
Our bones need what. Calcium and Vitamin D. As you know with Crohn's...one of the first problems is anorexia. Not anorexia caused by the patient not wanting to eat, but anorexia induced by the actual disease. The disease messes your digestive system up to the point food makes you sick leaving you not able to barely eat. With this problem comes malnourishment. Most of you that are close to me know of my hair thinning and falling out which is due to malnourishment. Weakness, fatigue, sunken eyes...so many things come with malnutrition. Well at MUSC the Doctors make Crohn's Patients have DexaScans as a rule.
Number 1 - Crohn's Patients have to take steroids at some point in time for their disease. I have taken oral Prednisone a pretty good bit of times but the times were not long term. I also have been put on an IV Solu Medrol drip...that was for around a week once when I was hospitalized! Steroids decrease Bone Density with Crohn's patient. So that is the first reason for a DexaScan.
Number 2 - With the malnutrition and Crohn's Induced Anorexia...I do not absorb Vitamins and Nutrients as I should. The hair falls due to the lack of Protein absorbed...plus my Crohn's is opposite from most. Protein is what is always low with me because instead with my Crohn's I cannot eat a lot of meat. As I said before what are two main components for Bone Health and Density...Vitamin D and of course Calcium. With Crohn's not only do you get malnutrition from not eating...but with our intestines ULCERATED/INFLAMED/AND BROKEN DOWN...the FOOD THAT WE EVEN DO EAT...THE GOOD PARTS OF IT (VITAMINS, NUTRIENTS, ETC) ARE NOT ABSORBED....with VITAMIN D AND CALCIUM GOING TO WASTE IN MY BODY...what happens...my BONE DENSITY DECREASES LEAVING MY BONES BRITTLE AND WEAK AND PRONE TO BREAKAGE.
So...I completed the Bone Density on my Spine, Hips, and Legs. Well as a nurse I am always curious and will look at things and see if I can see differences or figure things out. I noticed on the hips and legs a lighter or brighter spot compared to the rest of my bone. It was unusual looking...All the bone was one color and then certain spots that were bright throughout. After the scan I asked the tech what that was and what she could tell. I knew that she shouldn't tell due to my past in the medical field but she was so empathetic towards my sickness and the suffering I was going through at such a young age that she open up a little. She told me at 22 they can judge my Bone Density not only as an Adult Scan but also as a Pediatric Scan. She said that at 22 it is an Adult but they will still compare...at an Adult level she said that even though she is not a Doctor she can see where the Density can be judged slightly on the low test. PRAISE THE LORD SOMETHING WAS FOUND! I have had how many tests and procedures in Alabama and NOTHING! My doctor had never even THOUGHT OF THE TESTS THEY WERE DOING AND THEY ARE FINDING THINGS!!!
Praise be to MY LORD AND CREATOR...THE GOD WHO CREATED MY BONES THAT ARE LOW IN DENSITY, THE GOD WHO CREATED MY BODY THAT IS ILL, THE GOD THAT IS BLESSING ME WITH DOCTORS WHO ARE FINDING THESE THINGS BROUGHT ON BY THE SIN OF THE WORLD! MY GOD IS AN AWESOME AND WONDERFUL GOD! I PRAISE YOU LORD FOR THE FIRST FINDING OF THE FIRST TEST/PROCEDURE THAT WAS DONE! THANK YOU LORD FOR THE FINDINGS...MAY THEY CONTINUE TO TEST AND FIND SO THAT YOU MAY SHOW ME THE ANSWERS AND WAYS YOU HAVE FOR ME! I WILL GO THE DISTANCE DEAR LORD...FOR YOU BECAUSE MY BODY IS YOURS AND I AM FEARFULLY AND WONDERFULLY MADE!!!!
Now that this was done we caught the little trolley back to Ashley Tower. I was not allowed to eat 4 hours before my MRI Procedures so when we arrived we went to the Cafeteria to grab a little something. I was also told not to eat a lot...that it must be something in small quantity and light. I told her that was no problem since I wasn't to caring towards food. So everyone got there food and I just nibbled on a few things.
We had to be at the Radiology Department for Digestive Diseases at 2 to begin the Prep for the Procedures during the MRI. When I arrived more paper work and my first nurse came and got me. I changed into my gown and then went to the Pre-Procedure Room. The nurse was so kind and caring towards my situation. I was already feeling very sick so she set me in the chair and placed warm blankets on me. They were getting everything ready to access my port.
My port was accessed and then the fun part. I had to begin the prep phase...drinking so much within so much time. They sedated me with pills to help the process. When I drink preps they always irritate my Crohn's and make my abdomen swell to the point of almost perforating. I could feel I was getting more sick with each sip, my stomach fuller with each sip, and my eyes drooping with each passing second. I asked my mom to get my phone to take pictures and she was like "No, Alli it will be ok..." I wanted it so people could see what is endured...I can't tell all the time, write all the time what is going on...and I want to try to let all of you in as much as I can. When mom saw me part way through drinking the prep and how sick I was...she got a very sad look and said "I'll be right back" She then returned with the camera and did something that is one of the hardest things to do as a parent. Take pictures of your child (crying/sick/distraught/and looking like death. I was so proud of her for her strength and loving me enough to help me with sharing my journey.
My abdomen finally swelled to popping/perforating size and I started crying. The nurse assessed and saw that no more could go and that my Crohn's was already reacting. They then took me in and I lied *ON MY SWOLLEN, HARD, AND SICK BELLY*...that was an awful feeling. The medicine helped calm me, but I was so sick and uncomfortable. About an hour and a half later they came in and pushed some IV dye through my mediport. After about I guess another hour they took me back to recovery. They flushed and pushed heparin through my port. The doctor then came in and talked to me. He told me that in the terminal ileum of my intestines (the part not able to be seen with the endoscopy or the colonoscopy) was some damage. (Inflammations/Erosion). He said that it wasn't terrible, but it was there. He said that he would get in touch with Dr. Comerford and they would decide after all procedures what to do. Whether surgery, different treatment options, and so on.
Yet not big news to the doctors...WONDERFUL news to my ear. Dr. Rodriguez whom I love so much had never done the MRI to find Crohn's problems. I know Dr. Rodriguez did everything that he could....its just there is more and I knew it. When he said I was in remission it crushed me. I knew I was getting worse, that my strength/energy was gone, that the pain was still just as bad, that my eyes are zombie-like....just small answers were giving me the little bits of peace I needed.
Mom then helped me get dressed and all I can say is I was sick the whole ride home.
Sorry this is posted so late! I'm so terribly sick and have been and it's been so hard to post and keep updated...so this is catching you up from that procedure day!
I love you all and please please pray that they will find something...you can even pray for something not good....because they are the best and I have Christ and this all will be fixed...we just need to find the problem!