Sunday, June 20, 2010

A Week and a Half of Crohn's Gone Wild

ok so I was supposed to do a post about my Crohn's going into a complete whirlwind, but guess what...I didn't. Why you ask? Well Miss Allison Kelly yet again ended up in the hospital with her lovely disease. So there will be a lot of catching up.

It all had started June 9. Mrs. Becky asked me to ride with her to Mobile to pick up some pictures so I rode. For some reason that day I was so appetite was gone...and as the day progressed everything got worse. I took Phenergan routine and it seemed to help.

June 10 - Thursday - Same thing...nauseous all day...stomach blew up...thought to myself ok...I can handle Crohn's is just irritated. Well that day Mrs. Rene came over and flushed my port. I had told her that my Crohn's wasn't acting right. Still loaded up on Phenergan and it seemed to be doing ok. Started using the bathroom more. There was not much consistency and the smell was bad again so I knew the small intestines wasn't absorbing again.

June 11 - Friday - Same again. I didn't think things would get worse though, because I'm used to having bad days. Well I had to start taking Zofran because the Phenergan wasn't cutting it. That night Andrew and I loaded up with Allie and we went to Vineland to visit Martha, Ryan, their family, and Michael came to meet us. I just took the Zofran routine that night and just tried to tough it out. My appetite was gone and I didn't eat hardly at all. We had a fun time together.

June 12 - Saturday - This is when everything go BAD! I woke up that morning and told Andrew something was bad wrong. Well I woke up...appetite gone and I was nauseous on a scale of 0 - 10 about a 20. Ran to the bathroom threw up 3 times. Ended up on the bathroom 3 times. I was like ok...I'm dehydrated for sure...tried to get some fluids. Didn't feel like that. We were at Martha and Ryan's again. Well we were all going to get lunch. I was scared to eat. Couldn't eat...finally made myself nibble on a few cheese sticks (since cheese binds and bread is good on tummy). Well I managed to keep that down. We left their house about 3 pm and headed to Andrews.

When we got to his house I thought I was ok. Then started feeling bad again. I took a pain pill because my stomach started killing me...and then I took my Zofran routine because the nausea hit. I made myself eat a little supper and ended up on the toilet. Andrew came to check on me. Well he helped me back to his room. He carried me and put me in the bed and layed with me trying to rub my back to put me to sleep. He gave me my pills and a sleeping pill. I bawled for about 2 hours straight. I knew I needed to go to the hospital, but to be honest...I just feel like a burden in so many ways that I wanted to try to tough it out. Well that was wrong on my part. I called mom and told her what was going on. She talked to Andrew and she agreed telling him to just try to get me to sleep and let me know when I had gone to bed and check in with her. Well I did fall asleep and her and Andrew stayed in contact.

June 13 - Sunday - Woke up...stomach felt like I had been punched with brass knuckles from the top of stomach all the way down to pelvis. I took some pain pills and took the Zofran. We went to my house that day. Things still were bad. Andrew tucked me in bed that was asleep since she had work and I didn't want to wake her. I cried in the bed and told Andrew I couldn't do it anymore.

June 14 - Monday - Same thing happened again ALL DAY! I told Andrew I was calling Dr. Rodriguez. I called him. He didn't seem like himself. He sounded busy and like things weren't going right. I told him about the throwing up, lots of using bathroom, joints feeling like they were falling apart, the pain. He was worried that I had gotten severely dehydrated. His nurse told me to come immediately to Mobile ER. Well then he calls back and says no to. We were almost out the door at that time. He told me he was worried I was too dehydrated and didn't want us chancing it an hour and half to mobile. I called mom and told her he canceled. So he put me on a strict fluid and bland diet. He told me to drink Gatorade constantly and told me to tell Andrew to push fluids down me and to constantly make sure I was eating something (he calls it grazing lol). Well I did that all day but it was so hard. My appetite was GONE! Well that night things weren't better. I was taking my Levbid (hyomax) for my stomach locking and it wasn't working. I went to bed that night telling Andrew I was afraid I was going to die. My body felt like I had been run into a brick wall. We agreed that in the morning we were going somewhere because it had been going on for almost a week.

June 15 - Tuesday - Wake up. Call Dr. Rod again. He still doesn't tell me to come and I got really upset. He told me that if I was worried go to my primary care. Well that upset me because these local doctors don't know how to deal with Crohn's...especially a chronic/sever case like mine. Well I was in so much pain and crying that I didn't care. Andrew loaded me up and we went to Jackson ER. I didn't want to go to Grove Hill because of the last experience and I really didn't want to go to Jackson. So I wait in the ER for an hour and half in excruciating pain. They finally get me back. They access my port...still don't get me pain a CT...take me to a room...still no pain that time my pain threshold is untouchable...which they wouldn't know that because they don't know a STUPID THIN ABOUT CROHN'S. So finally I get mad and they give me FREAKING 25 DEMEROL THROUGH A DANG DRIP! How idiotic is this. The drip ran in 15 minutes...nothing...I started bawling...I told the nurse 25 was like giving me a she gave me 50 more...well like I said my threshold was out of control so it did no good.

I stayed in pain the entire time. They treated me like I was a druggie. Even make little did as well. I was thinking...why in the heck would I have waited a week to come to the hospital if I wanted drugs. People have no heart. People do not have a clue the pain that comes with this disease. I finally argued with the doctors and nurses telling them I was not doing the drip anymore. It wasn't working and it was not as effective. They argued that it was...which later when Dr. Rodriguez and I talked he had steam blowing off of him. So anyways...finally they talked to the DON and she agreed to push the 75 of Demerol and give the Phenergan drip. They even made the remark that I just wanted the "rush" or the "high" you know how bad that hurt my heart. Yet again....WHY WOULD I HAVE WAITED A WEEK IN PAIN IF I WANTED A HIGH! I have oxycodone in my purse that I don't even touch unless I can't move...who are these people to tell me and judge me. (all that did was add stress which made my condition worse) ALSO...MY BLOOD PRESSURE NORMAL FOR IS 80/60...MY BLOOD PRESSURE GOT UP TO 150/97....THAT MEANS PAIN...THAT IS A STUPID SIGN!!!!

Ok...moving along...

June 16 - Wednesday - Another day in the hospital. They couldn't figure out what was wrong...the CT wasn't showing anything. Then he came in and told me my C-Reactive wasn't elevated...well duh it wasn't. See with most Crohn's patients their C-Reactive Protein is elevated with a flare...when I say I HAVE A BAD AND RARE CASE...I'M NOT LYING...when I got diagnosed with chronic Crohn's (actually looking at the damage in my intestines) my C level was not to tell me it isn't elevated doesn't mean much. I'm different. Well you can't tell a small town doctor who doesn't know my case that because he isn't going to listen. I stayed on pain medicine all day. I was out of it...but I wasn't knocked out...if 75 Demerol doesn't knock out a 119 pound little girl...she must be in serious pain. Yes I talked out of my head...yes I was emotional, but what would you do if your pain was not being managed and people were speaking rude to you.

I'm not even going to write anymore because its going to make me cry if I keep elaborating on my stay there.

June 17 - Thursday - I talked to Dr. Rodriguez on the phone. I was upset with him. I told him I was disappointed in him. He got upset at that. I told him I wasn't being managed that I didn't want to be there...all of that. Well Dr. Hussein...whatever...told me they couldn't keep me in because they couldn't find anything. So he set me up an appointment with Dr. Rodriguez for the next day. Now while I was in the hospital I was taking Steroids (solu-medrol) Prtonix, Phenergan, Demerol...blah. They do another x-ray Thursday nothing...I'm still in dying pain but I'm so ready to get out of their I could care less. They let me go home...Dr. Hussein was going to give me Lortab. I laughed...I told him it wouldn't do a thing. He asked what I took...I said well I take Darvocet but that is for the rectal pain only that it will touch. I told him I had oxycodone but I saved that for the bad days...well the jerk didn't write me a prescription because he said that he didn't want me to have a lot of different things from different doctors (Dr. Rodriguez was later steaming with this as well). So that day I had to break into my stash that I don't touch. I will not write anymore about this day because I will cry. Let's just say yet again I thought I was going to die.

June 18 - Friday - I wake up. I feel like death. Andrew, Mom, Dad, and I go to Mobile. My appointment is at 3. I'm running a weight is 123 from all the steroids and fluids and I'm in terrible pain. When Dr. Rodriguez walked through the door he could tell it was bad. He shook everybodys hand then looked at me like he didn't have enough apologies. I'm going to cut the story short...He apologized...he hugged me...he got mad at the treatment they used for me...he got mad at the doctors remarks...the pain not being managed...the not prescribing pills...he told me in simple terms that small town doctors can't conceive what a Crohn's patient is going through. He then said that WOULD NEVER HAPPEN AGAIN. Next time I WOULD BE IN MOBILE...and HE WOULD SEE ME OR HIS ON CALL DOCTOR. He said he had indeed had a bad week, but it was no excuse. He didn't think that it was all an attack. He was thinking that with the treatments lowering my immune system, my body picked up something that ignited and threw the Crohn's for a craze. It made sense with the body aching and all. Well he put me on a strict steroid schedule, levbid, and acid reducer, and more stuff. He then told me that if I start getting bad I can't wait...he said feeling like a burden is going to get me nowhere except worse. He said the minute I feel pain to take a pill. He told me that with Crohn's you have to manage the pain the second it starts...the pain with Crohn's advances so fast and harsh that it reaches a point of where nothing can touch or manage it. He told me to quit being a martyr. It felt so nice to know that he understood. I cried and told him that I was just hurt by him. He told me that it had broke his heart to know that I was disappointed in him and he felt he had let me down. I told him...I was like I just wanted you to fix it because I knew they couldn't. Well that all got settled. He told me that it was going to be a while before I was going to be's just my case...and I'm going to have to deal with it. We left out of there and felt so much better.

Well we got back home that night. Guess what...I am pretty sure I DID INDEED HAVE A BLOCKAGE. I didn't have a bowel movement for like 4 days...yes I didn't eat and lots of pain meds, but still I should have. Well that night I went to the bathroom...beware I'm going to get graphic so stop reading if you don't want to know...well I used the bathroom and it felt like I ripped open. It was so looked infected and the smell was terrible. When I wiped I was just oozing green out. I had definitely had a blockage...that is one of the worst things for Crohn's. I came out of the bathroom and for sure took some pain medicine lol. I told them family and they were like well at least we know. I told them I would tell Dr. Rodriguez Monday (which is tomorrow).

That night was rough but I took my medicine like I should and my love tucked me in.

June 19 - Saturday - Rough Day. Lots of pain...out of it...body weak...just bad all together, but happy to be home. Andrew wasn't with me which made it hard...he was at his family's house because his brother and his wife were down. His brother and I get along fine, but Hope and I haven't talked in a while...that's a long story. So I didn't need to be there because stress is bad on Crohn's and I didn't want to mess up the family time...stress can cause a flare for me in .2 seconds. Well I felt bad as I said...but I sweet friends came and visited me and kept me company...that lifted my spirits. Went to bed.....

June 20 - Sunday - Brings me to was a hard week and a half. I thought I was going to die a couple of times, but Jesus saved me. Thank you all for your love and prayers. Today I had a positive spirit and I know it came from nowhere else but Jesus. It hasn't been a wonderful day, but just the Spirit was wonderful. We had a great Fathers Day with my daddy and it was a lot of family time. I took my pills like a good girl...and only managed to take a pain pill 1 time :)!

Thank you to my friends who called, texted, came by, checked on me...everything you did...thank you! I have been blessed :)

I wrote this so fast so it might not make a bit of sense, but I needed to do a catch up. Crohn's is a never ending roller coaster never know what the next day will be or what it will bring... but oh is my testimony growing stronger with each day! My God is good! :)

This was Friday Night the 11th

This is what Saturday Night June 12 Consisted Of

Just a picture of Andrew and I in our Take Steps for Crohn's Shirts :)

Monday, June 14, 2010

My Dream Come True

Right after I complete this post I will be posting was has been going on the last 5 days. My Crohn's has been flared full force. I probably should be in the hospital, but I'm trying to tough out I guess you can say. Anyways...Dr. Rodriguez should be calling shortly and we will decide and I will do the post on what we are to do. Now for one of the BEST days of my life!

June 5, 2010 - Take Steps, Be Heard for Crohn's and Colitis 2010 As you all know I captained the team Purple Hearts. Also, most of you know that our team was named VIP 2010 and was also named the GRAND MARSHALLS! This means that the Purple Hearts raised the MOST money! Just how much you ask? Well we can still turn in some right now, but the total as of now is like $8,600. That is amazing for a time span of only what...8 weeks? God is so good! my family and I leave Jackson around 11 am...we head towards Birmingham and pit stop at Fulton which is 30 minutes from our house. We pick up Andrew and his mommy, Mrs. Judy. We load the ice cooler with the drinks that were donated from The Coca Cola Company in Leroy...and head on. Well that morning I think I was so excited and Crohn's was all for a loop. I had spent that morning on the toilet. Well I was hurting pretty bad on the way up so I was like *you know what...this is my teams day...I'm not going to for once I took my Darvocet without question!* well the ENTIRE way to Birmingham...I talked everyone's ear OFF LOL! My mom, dad, andrew, mrs. judy, and even myself...haha! So we arrive at our hotel about 3 and we were all hungry. (By the way...the hotel was absolutely beauitful...always wanted to stay at a Hilton...well I gad this bad boy at a whopping cheap deal offline since it was a canceled room...THANK YOU JESUS :)...because it topped everything off).

So we unload and then we go eat at a restaurant down the road. It was called Billy's Bar and my tummy was being stubborn, but I knew I was going to have to put something in it. So we are looking at the menu trying to order...well we order and I felt so bad because I kept changing my mind because I was scared to eat, and the waitress was really nice about it. Well after this one of them asks what our shirts are for. We tell them about my case with Crohn's and about the walk. Our food gets there...we start appetite stinks...go to the bathroom...upchuck some...come back and Jesus was already working. While we are sitting there a girl that works there comes to the table and says...we all took up some money for your walk in the back...I started crying and gave her a hug...then mom got tears, mrs judy got tears, dad got tears, and all the waiters and waitresses got was a tear fest! I thanked them all and we got their address and left for our way to the walk!

We follow Jordan and her mommy to the park and I see the park! I cannot tell you what my heart was doing...this was going to be an amazing day! Well we get out and immediately head to our VIP TENT! It had fruit, cookies, cookies with little sayins on them about our team, drinks, juice, leis, everything :)! Well all of us start chipping in and putting up decorations...Jordan surprises me with the sweetest gift! A art work of Purple Hearts! It made me excited! Then we got more surprised because my sweet dear old friend Jamie showed up! We had a splendid hug! :) Her and Jordan hit it right off! Right after Jamie...Aunt Dana, Uncle Bucky, Kayla and Daniel showed up! They of course went right to work. Then Mrs. Becky, Genna, and Zeb! Mrs. Becky and Zeb went on the mission of pictures...they did so a good job capturing everything! They even convinced Butts and Guts to give me a shirt! YAY! Well we all chipped in again and finished decorating...the tent was precious! Went to the car to help dad get some yummies and I got attacked by my best friend since 9! Candace Barnes...we walked hand in hand back to the tent and I lost it...just started crying. Paul was there of course, but her MOM AND KENDAL CAME! I hadn't seen them in so long and Mrs. Krista half raised me and Kendal was my baby sister. My heart was warm!

We then went to the sign up tents...everybody got their tickets for their shirts and all the good stuff. We all gathered back at the tent! :) Well then we had the ceremony...they called out the top three team's captains. I was the last to go up since we were the top...and I got to give my testimony. I didn't write anything because I wanted it from the heart...I also didn't speak long, because the event didn't take long and Pat was being kind enough to let me give my testimony...(looking back I smile because I messed up and said cancer is the spotlight drug instead of disease) I dont' care shows my testimony was not rehearsed and it came from the heart...that's all I wanted! I asked God to give me the words so yay! So after all the talking it was GRAND MARSHALL TIME! My sweet team-mates and I led the walk! I got tears in my eyes at should have seen the line of people behind us and WE WERE LEADING IT! Such emotions...for one day of my life people were STANDING UP TO CROHNS AND COLITIS! For one day we were fighting it together...for one day I was gathered around 500 people who knew what truly was going on in my body...that knew what my pain was...that knew the emotional battle! All of my family friends....just an indescribable feeling! Well then I got pumped umm most of us lovely girls led the walk by silly dancing to the music they were playing! Amazing feeling again! Can't describe!

Well we walked for a good while (Pat said that was the most people had ever walked)...then mom and dad flagged me to come to the tent stage thingy. We sang "The Storm Before the Calm" the song my dad wrote that received its Gospel Songwriter Award and then I sang "Temporary Home". I sang Temporary Home because even if I'm not healed while I'm on earth...I will be one day. Although things may be bad right now, they won't be one day. I have a home in the future where I will receive a glorified body and will live with my BESTEST FRIEND, Jesus! So even though I am on earth...and my mission is to tell others about is still only my temporary home! After I finished I had so many people come up wanting to know about my severity of my case and what all they had done and were going to do. It was so nice...these people suffered with what I have and that were intrigued to find out how crazy it could get! I made so many special friends! I even had a doctor that works at UAB peds for gastroenterology come up to me asking about my case. He told me that if I needed anymore help that they would love to work on my case...kept talking told me to call Pat and she would get up with him for me. I was like a doctor really interested in me for one :)! It made me feel good, but on a side note I would never leave Dr. Rodriguez. To be honest it was scary listening to some of the new friends...some of their doctors had put them on Remicade and just stopped them. I have told you all before how serious that is! For me my treamtments are my LAST option...I have no options left after them so I have to stick. If you stop Remicade you will immediately build antibodies and you won't be able to get back on. They had just gotten on Remicade for a flare. I was thinking Dear Jesus, thank you for blessing me with Dr. Rodriguez and for giving him the knowledge and the past as pharmacist to know what to do for me! I was so proud of my doctor when I heard all the people that had been yanked off. Also...Remicade shouldn't be put on Remicade just for a is supposed to be used as a continous treatment/shot. So lots of talking, everyone ate except me, everyone talked, we laughed, we just spent time together!

Well everything started coming to an end and I began being sad because I didn't want it to end! Well a fuy named Eric Watters had performed that we are loading Dad said allison you should really go talk to him...his story is amazing! So andrew, aunt dana, uncle bucky, kaykay, daniel, and I went to talk to him. I learned of his story, met his wife, and all I can say is wow! He had ulcerative colitis...he almost died from it...well they did surgery to remove his colon which is the cure for UC. He had to wear a colostomy for a long time, and then they were able to connect the intestines left back so that he wouldn't have to have the colostomy anymore. He said it was like being a baby again having to relearn. His wife also said that he had lost so much weight to the point she could pick him up...that would be like me being able to pick up andrew...that wouldn't happen unless he was a stick! For ONCE! I met someone who had IBD (inflammatory bowel disease -crohn's or uc) as bad as I. Yes he is now cured, but still...what he went through will ever haunt his memory and we were able to connect in a way that no one else can! His wife was absolutely beautiful and precious! I keep in touch with them now and it was/is truly a gift from God!

The day after was emotional...Jamie described it better than anyone else when she said "It feels like the day after Christmas, all the presents are gone!" We all had worked so hard and had such a blessing and it was over. We know there will be another one next year, but the feelings felt that day were so amazing that you don't want to was a sweet fellowship! I met so many Christians brothers and sisters and there was more Jesus talk there than probably in most churches!

Take Steps was indescribable! My team-mates were amazing! and God worked in such a beautiful way! Thank you to everyone for their support, donations, but most of all prayers! Cannot thank everyone enough! I told someone I felt like a princess that day and that hasn't happened ever since Oct. 2009 when everything started happening!