Prednisone

I was on Prednisone for about 6 months. There is many side effects from this steroid that I myself have experienced like weight gain, moonface, acne, mood swings, Slow wound healing, High pulse rate, dizziness, fainting & withdraw from the taper.  Those are some that I have noticed right away. This drug I will never take again because It is so horrible. I have been off of it for about 4 days now and am waiting for some of the side effects to still go away. I will post before and after pics once my face goes down. :)

Plaque Psoriasis

I always had clear beautiful skin when I was younger. Never really had facial breakouts unless it was the time of the month. I always remember being proud of my skin and thinking I was so lucky to have such clear and beautiful skin. I have seen friends of mine and sisters struggle with breakouts and skin problems for years and I felt so bad for them because it never seemed like there was ever relief. My luck was about to run out.

It was about 2008, when I first noticed red-silverish scaly patches on my skin and I thought that I just got a rash from some lotion, or a new body wash, or new detergent. So I didn't think much of it. But after putting some hydrocortisone cream on them, after a week they still were there and getting bigger. That's when I realized that it may be something more serious.

I called the doctor to schedule an appointment and get an answer for what these ugly patches were and I thought that he would prescribe some magic pill and That I would be cleared in a week or so. 

When my doctor saw the patches, He immediately knew what it was and told me that I had an auto-immune disease called Plaque Psoriasis and that this was Chronic and I would never get rid of it. I will have flares and that sometimes it will get worse. I was in shock. At this point I had little red patches covering about 60% of my body and was in panic mode. It was summer and I was fit and wanted to show off my awesome physique and go swimming. Do all the things that a normal teenage girl would want to do.

He prescribed me this cream called Dovenex. Told me to use it once daily and to use sunscreen because my skin was much more sensitive now. I was shocked. So I used that cream and it seemed to work. It didn't completely take the bumps away. It just made them less noticable and less painful. 

When I would run out of the cream and not get it for a couple days, my skin was in so much pain. It would get so dry and crack open and bleed. Regular lotion would burn when i used it and the spots were peeling. It was very noticable because i have spots on my hands, elbows, knees, scalp, and anywhere were my skin gets a scratch. So i have to be super careful. Which is hard for me because I have to have surgeries for IBD and where the scars are at I already notice Psoriasis forming. Awesome.

Did I mention it itches? It itches so bad somedays. Mostly on my knees. I have tried OTC psoriasis treatments and nothing helped. I have tried herbal soaps. The treatments would either make it more sensitive or turn my skin a yellowish color in that spot the treatment was used. 

I need to make my way to a Derm's office but I dont have alot of time or strength to go. Ill stick with the dovenex for now and actually the patent ran out so now there is a generic for it called Calcipotriol(Calcipotriene).

I have not tried other treatments because of my IBD. I'll cross that bridge when I get there. :)

I have always tried to hide my psoriasis in public and in pictures because people would always stare at me and wonder what was wrong with my arms. But now I just embrace it.. There isnt much I can do to hide it. cant wear long sleeves in 80 degree temps in summer.

My Story

Let Me Introduce Myself :) The Early Years-Now. 

Hey There! My name is Rachel Sheets. I am a 24 year old woman that has always been a little sickly throughout life. When I was younger around age 5 to 9, I was plagued with ear infection after ear infection. I had to get tubes put into my hears so that they could properly drain and the ear aches subsided. That was my first brush with surgeries. I always liked right after surgery because the nurses would parade me with ice cream. I guess it was all I could eat after surgery, which little did I know that feeling would become a prominent part of my life later on.

The years after that I would always get strep throat every season change every year. I would miss a lot of school and would have to always make up homework and could never swallow because it hurt so bad. My voice would go away and I would run high fevers. To go along with those high fevers, I would hallusinate and for some reason would never want my mother near me because all the hallusinations were about her.

A hallucination, in the broadest sense of the word, is a perception in the absence of a stimulus. In a stricter sense, hallucinations are defined as perceptions in a conscious and awake state in the absence of external stimuli which have qualities of real perception, in that they are vivid, substantial, and located in external objective space. 

Source: (http://en.wikipedia.org/wiki/Hallucination)

 She never treated me bad in my life. So it was weird that I wouldn’t want anything to do with her.Nothing personal I guess. I would always find comfort in my father. He could always bring me back to reality.

I grew out of those experiences some years later. When I was in high school, I was pretty much mostly healthy. After High school, in 2009, I would start to notice little flaky, red patches on my skin. One morning when I woke up, they were every where!!! They covered about 70% of my body. So I paniced and called my doctor and got an appointment. At the doctors appointment, My doctor told me that it was Plaque Psoriasis.

 Plaque psoriasis is a long-term disease of the immune system that causes red scaly patches, often with a silvery scale, to appear on the skin. 

While plaque psoriasis may look like just a skin condition, it is in fact a disease of the immune system. The immune system protects the body from infections and diseases. In patients with plaque psoriasis, certain immune cells are activated and produce too much of a protein called tumor necrosis factor (also known as TNF) a protein produced by the body, usually in response to infections. This protein can cause skin cells to grow too quickly. The skin cells build up and form raised, red patches often with silvery scales, known as plaques. These plaques may itch, be painful, and can bleed.

source: (http://www.webmd.com/plaque-psoriasis-not-skin-deep/about-psoriasis)

To me hearing that I had a chronic illness was in lack of better terms “the end of the world.” Oh how naive I was to think that. Or was it? I have to sometimes remember that I don’t always have to be so strong and that it is okay for me to break down and realize that a lot of people do not have to deal with the life of sickness that I had to deal with but then when I break down and start to feel bad for myself, it’s like a power either inside or outside of myself won’t let me sulk. It’s like there is someone looking out for me saying, “you can’t allow yourself to feel sorry for yourself, suck it up and just push on.” And for some reason I always  listen. For my own good I guess. Over the years, the Psoriasis got better in the fact it wasn’t every where and worse in the fact that my elbows, knees, and my hand was covered in Psoriasis. 

I’ve tried many different medications and nothing has really cleared it up. I’ve tried all of the topical medications. Right now I am currantly using Dovenex. It helps a little but doesn’t take them away like I want it to. So i’ll live with it for now.

Well Now on to my current situation. For a couple months at the end of 2011, I noticed some stomach pain and minor rectal bleeding. I thought I had a hemorrhoid. Went to my family doctor and he told me that it was not a hemorrhoid and refurred me to a Gastroenterologist. I made an appointment and went a few weeks later. When I met with my GI, He had told me he wanted to do a flex-sigmoidoscopy on me. It was done with me awake and I saw my colon on the screen and it freaked me out to say the least. It was very uncomfortable. At the end of the session, my GI told me that I had Ulcerative Proctitis. 

Proctitis is an inflammation of the rectum.

source: (http://medical-dictionary.thefreedictionary.com/ulcerative+proctitis)

I was relieved that there was a diagnosis. He told me that their was treatments but this again was a chronic illness. (one that I would have to deal with for the rest of my life) By this time, I was used to hearing the word chronic before the word illness. So that didn’t phase me because I was already dealing with my Psoriasis. The GI told me that he wanted to put me on a vegan diet  and he wanted me to try these CANASA suppositories. I had to use one at night every night. They looked like little white bullets that I had to keep in the fridge. What was the hardest thing was how was I going to keep something like a suppository in my bum when I needed to go “number 2” atleast 5-7 times a day. 

After a couple months, about June, I went back to my GI and complained of more pain higher up in my side and this time the toilet bowl was full of blood every time I went poop. THAT WAS TERRIFYING to say the least. He refused to scope me and said that it’s normal pains and game me a mesalamine enema. I was stunned but accepted because he said that it was going to help. The enema I had to use at night also and had to hold it in as long as I could. But how could I when I was going to the rest room every, 4o mins or so. It was tough. I grew frustrated.

One day, I woke up and felt really sick and was in a lot of pain.  I convinced myself and my parents that I needed to go to the ER and get checked out. Little did I know that this was the beginning of this journey that I am on right now. I arrived at the ER complaining of pain in my stomach and rectal bleeding. They found that I was severly dehydrated from the diarrhea, I was also Anemic because of all the blood loss, and they did a cat scan on my stomach and they found that my whole colon was swollen from inflammation from Ulcerative colitis. They diagnosed me with Ulcerative Colitis. I was shocked. I had so many feelings going through me. I was happy for the diagnosis because I knew I wasn’t crazy for feeling worse. I was angry at my GI for not scoping me when I complained of more pain and more blood. I was scared of what that meant for what was ahead of me. 

They treated me that night and sent me home. They told me to continue my enemas and to rest and try to keep fluids going through me and eat as my stomach will allow. That was easier said than done. For 3 days after that, I had no appitite. I was pooping at the same time I had a trash can on my lap because I was also puking. My stomach was so upset and I was constantly nausiated. After I was so weak that I couldn’t handle puking or pooping anymore because i had a sore throat and was RAW on my ass, I finally went back to the ER and complained of the same symptoms. They tested my blood and by the looks of me, they admitted me to the hospital because I was anemic severely, I had low potassium, magnesium, and could not eat or drink by myself. They had me on IV nutrition, IV fluids, and IV diladuid for pain, and oxycoidone.

The next day I saw at least 4 GI docs and NONE OF THEM WERE MY ORIGINAL DOC. and one of the GI told me that the next day they were going to sedate me to do a Flex- Sigmoidoscopy again to see how far it has traveled. I was to sore to be awake to do it. The GI did the flex scope and found out that my entire colon was full of ulcers from my colitis and said you definitely are sick. From April to July , My disease progressed so fast. They kept me for a few days trying to figure out my treatment that they wanted to do. They wanted to start me on remicade instead of surgery. But at that point, I was so sick of different medications that didnt work. I did my homework on Remicade and it was not something that I wanted to try. I did my homework on the surgery and the months that follow and I slept on the two and I felt in my gut (no pun intended) that it was the best route for me. 

The doctors tried to talk me out of it and so did my family. But I was 100% sure that this is what needed to happen. They agreed and told me that I couldn’t have the surgery at Swedish American in Rockford, IL. Because there was no doctors that were able to do this surgery. So they sent me to a world class surgeon at UW Madison. They pumped me full of potassium, magnesium, fluids, and pain meds and nausia meds and sent me on my way in an ambulance up there. When I arrived at UW, I was scared. There was a lot of people around making sure that I was ok. They started my PICC line because all my veins were blown out from all the blood draws at Sweds and from being dehydrated. 

The surgeon came in to talk to me and my dad about the surgery and told me that I would have my entire colon removed and that I would have a temperary ileostomy.

An ileostomy is a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the ileostomy and is collected in an external pouching system stuck to the skin.

source:(http://en.wikipedia.org/wiki/Ileostomy)

I was okay with it and at peace with it. The medical team came to try to get me to try Remicade. I said absolutely not. My surgeon (Dr. Harms) came back to my room and started me on this discusting drink that i had to drink to clear out my bowels. It was horrible. But I drank it. The next day (August 10th) I was scheduled to have surgery. So my family all rushed up and was there to support me. I was not really scared I was so at peace with my decision and Dr. Harms and his students had told me that I would feel so much better with it out. 

It was 4:30pm on August 10th and the guy finally came up to take me down to surgery. I didn’t actually go into surgery until 7:30pm. I didnt get out of surgery until 11:45pm. The doctor went to tell my family that the surgery went well and that I NEEDED, ABSOLUTELY NEEDED, to get my colon out. When he was taking it out, he said that it was falling apart. You could periferate it easy. Basically, It was    decomposing in my body. He said if i didnt get it out, Within a month I would have died. When I woke up from surgery, I didnt know where I was and thought that I was kidnapped. They sedated me again because i needed to calm down and I was in so much pain. The epidural that they gave me was not working.. or so I thought. And they had to control my pain. 

Finally, I calmed down and was able to see my family around 1 am. They were all so caring and i was hysterically crying because of still in pain. They gave me 1.5 mg of dilaudid every hour, my epidural and on an epidural drip for extra relief, I also had 4 pills of oxycoidone.. Dont know the mg but all i knew is that both of those together made me pass out. 

They made me get up and walk 4 hours after surgery. I had a cathetor in so i didnt have to get up to use the bathroom til the next day. I had to get Heparin shots in my stomach so that my blood wouldnt clot. I had those every 3 hrs. They had these water machines on my legs to make sure no clots. If you dont know about Heparin shots, They burn and leave a hole after use. I didnt know they burnt at the time because I had the epidural. But once the epidural was d/c they HURT! 

I got the cathetor taken out the next day and omg i had to pee every 20 mins cuz of all the fluids. My stomach had a bag on it to catch my waste from my ileostomy, I had an 7in incision across my pelvic area where they took out my colon and had 8 staples there i think. I had a drain in my stomach to drain all of the extra blood and pus from surgery. I was just in bad shape but felt alot better than before I got my colon taken out. My stomach was bloated from all the air from surgery they had to pump in me. 

I remember in the night, I would almost not make it to the bathroom because my bladder was so full. The nurses would stay on top of my pain so at the most part I was comfortable. I was released August 19th to go home. 9 days after surgery. I had a hard part of recovery because I was put on 40mg of Prednisone at sweeds and had my surgery at UW on them and had to be weined off of them. HORRIBLE DRUG which I call “satan’s candy.” The Steroids would give me hell after I left. My 2 week visit I was dehydrated and having a lot of side effects of the prednisone. My surgeon looked at me and admitted me right then. I broke down into tears because I felt so horrible. They put me on fluids in a new PICC line and had an ebolis of fluids dripping. I had SLITTING headaches cuz i was so dehydrated. I went through 9 icepacks in 20 mins. They gave me Dilaudid and Oxycoidone to cope with the pain. I stayed in the hospital for 5 days that stay and they sent me home with my PICC line and had  me give myself IV fluids every day for 2 months. 

I needed them. It kept me out of the hospital. Before my last hospital visit I was vomiting cuz i was so naucious and had ripped my staple out of my stomach. So they took them out while i was in the hospital for dehydration and i had to pack my wound 2 times a day. I still am packing my wound and i started packing it 2 weeks after surgery and it is now November 29th. The prednisone is giving me hell with healing. 

I have 2  more surgeries coming and I am scheduled for my second surgery feb 25th. :) Cant wait.

I forgot to mention that before my surgery I was not eating at all and had not eaten by mouth for 2 months. I was put on thickened liquids after surgery and was so happy to taste food again.

Even tho this sounds like a horror story, it was the best decision in my life and it was a blessing in discuise. I keep my head up and realized i was blessed with my disease and that god gives his strongest soldiers the worst tasks. I definitely am happy with my decision and would never take it back ever.  Ill keep updating my story as it goes on. :) Stay positive people! Much love!

-Rach