Home away from Home.

Seeing as my one year anniversary from my long hospital stay was a few days ago I thought it would be proper to dedicate a blog post to my experience.

I might as well start at the beginning. Back in June of 2011 I went to a doctor at Virgina Mason and told them about my chronic Diarrhea. It was the first time that I had spoken about my issues to any doctor. I had finally rustled up the courage to face my fears and take control of my health. I also had health insurance for the first time since I was 21. The doctor referred me to a Gastroenterologist. He listened to all my symptoms and asked me some questions about my health and determined that he wanted to give me a sigmoidoscopy. For those that aren't familiar that is a scope that checks out the lower half of the colon. I was scheduled for the procedure and 2 weeks later came to the appointment with my mom. I was given an IV, which at that time I was scared of needles, and then wheeled into the room. They had me on oxygen and strapped heart monitors on me. I was given a sleepy drug and the next thing I knew I was back in post op room. I didn't feel anything! Thank goodness.  The determination came about a week later and it came back normal. The lower half of my colon was free and clear of any issues. That was the end of the good news. The bad news was that I needed a Colonoscopy next.

Before the doctor scheduled that he put me on a prescription to test for a month long period what the effects of the drug were. It was like I was normal again. I stopped having diarrhea and I wasn't having the pains from eating that I was so use to. I was amazing and after I told my doctor the news that this stuff was working for me He wanted me to call to schedule the colonoscopy asap. Later I found out that the drug was a steroid which is often used in treatment Crohn's for a periods of time. My small problem with getting a colonoscopy was that I had just been billed 700 plus dollars for the Sigmoid and I didn't have the funds to pay whatever portion that would be billed to me for the Colonoscopy. So I decided not to get one. Bad choice.

By this time it was coming to the end of September and I started having a very persistent UTI. I was having all the symptoms burning urination and constant feeling to pee. I saw my doctor 3 times for this problem. I was on antibiotics and it never went away for about 3 months. Finally my doctor orders my a CAT Scan. I was completely nervous because I had never had one and I didn't know what was wrong. It was a very strange experience the first time around. Getting into scrubs feeling like a hospital patient. I get into this room with this giant donut looking thing that is making loud noises. The technician was not very handy with a needle and caused a lot of awkward moments and pain. I went through the process feeling very high anxiety and was sent to wait in the waiting room for my results. I waited for what felt like forever and I did. I was waiting for close to an hour. The Technician finally came out and said that they were trying to reach my doctor to discuss the results. While I am waiting to get the go a head to leave the technician comes into the waiting room with a phone. Tells me to call my doctor and speak to him about my results. After 15 minutes of trying to find my doctor they end up telling me that they will leave a message. I was allowed to leave. At this time I was attending night school at Pima. Sitting outside of the building I finally got the call from my doctors partner because she was not in that day. I remember so vividly the moment that he told me what they found on the scan. He said we see something but we can't determine what it is at this time. My recommendation is that you admit yourself to the hospital immediately. BOOM! Shock and terror fill me as I am not ready for this answer.

I went to class that night and admitted myself to the Hospital at 10 pm. That day was November 23rd 2011. I waited the the emergency waiting room of Valley Medical for a couple hours before I was admitted. It was about 2 AM before I got a room in the Hospital. The emergency room folks are always really nice which is surprising because of what they have to deal with on a daily basis. I waited for hours in the emergency room with Robert my now fiance and my mom. I had the nicest doctor that sat down and talked to me about what was going on. At that time all I thought we were there for was a crazy bladder infection. When the conversation turned to symptoms they dug into by other current GI issues. They determined that I would need to get a second CAT Scan. The images that had been sent to the Hospital from the outside Imaging Clinic showed an area of my intestine that was not happy we will say. After looking at my images and reviewing my symptoms with the on call GI doctor they decided that I would need to get a colonoscopy to see what was really going on. I was scheduled for a Colonoscopy that Saturday. While I was in the hospital I had my fiance by my side every night and my mom as well. I had friends visit me and it was a very nice private room. I had to miss Thanksgiving. I was super bummed and I ended up being alone on Thanksgiving and wasn't allowed to EAT!! That was a really tough day.  :'( I didn't have a terrible time there until I had to prepare for the Colonoscopy. Not only was I not allowed to eat from the very minute I get there but I had to drink this lemony metallic water that was suppose to clear me out so that the doctor could get a clear view of my colon. Boy was that the worst 4 hours ever! Plus I was getting up to use the bathroom every 15 minutes and with an iv machine attached to me it was a pain.

The colonoscopy was no big deal. I was asleep and don't remember a thing after they got me all set up in the room. I actually don't remember a whole lot after either. I was pretty doped up on IV Dilaudid from the pain I was having from the air they blew up my ... well yeah. I had to wait till the next day for my diagnosis. The doctor made his way over to my room in the afternoon and announced to me and my anxious family that I indeed had Crohn's. It wasn't the news I wanted but it also wasn't that shocking. I had been investigating enough in the past to know what the options were. I wasn't happy by any means for this news either. Who wants to hear that they have a life long condition? I was feeling pretty hopeless. As it turned out the UTI wasn't even a UTI at all. It was the inflammation from my intestine irritating my bladder. That is why the pain and irritation never went away with antibiotic treatment.

I began to see my GI doctor every couple weeks and he had me on 5 different prescriptions for my inflammation. Mine was pretty bad. They said the scope would fit through the stricture. That means that my inflammation was so bad that there scope would fit through the tiny space that my intestine had now. I had some bad reactions to some meds ended up in urgent care as well as some side effects that I didn't like. For 3 months I was out of the hospital and seeming to be on my way to a drug therapy called Humira. But things started to change and that is how I ended up in the hospital again.

Thanks for reading and I will have to continue the rest another time. To give myself and your eyes a rest.

You know its Friday when....

I wanted to share a video I made of me giving myself a Vitamin B-12 injections.

My Crohn's affects the part of my intestine that absorbs B-12. I can't absorb it from foods so I have to inject myself with it. I just started doing this about 4-5 weeks ago. I have one more week next week and then I only have to do it once a month.

This is the most nerve raking experience. The moment before you poke yourself with the needle is pretty scary. I sometimes sit there for a few seconds saying 1.., 2..., 3... ok 1..., 2...., 3...... and poke. It makes me laugh a little after because I've done this a few times now and I know what to expect but it is just as scary as the first time.

But in all honesty its not that bad and when the doctor does it for me I can't even feel it at all. So with out further ado here for your viewing pleasure is me very nervously going through the steps... forgive the lack luster performance, its my first video.

Poop

I wanted to continue my trip down the digestive tract into the bowels to finish up the symptoms that I have felt over the years. I talked in my last post about the horribly painful cramps that I would experience in my stomach. The problem with those cramps is that they would continue all the way down my intestine. The pain would travel with what ever food I ate that was terrorizing me. It feels like your body is trying to digest needles and as they are working there way down your small intestine they are stabbing you. It is slow and lasts for an hour or two sometimes if you count the time it spent in the stomach. The pain caused me to be immobile. I would never move because the more I moved or tried to massage the area the pain would increase. There was nothing I could do. I took two to three time the recommended dose for Ibuprofen.  Later I learned that Ibuprofen is actually more harmful and that I should never use that kind of pain killer. But at the time I would take 6-8 pills at once to try to dull the pain and it wouldn't do a thing. It was very frustrating.

Sometimes gas would accompany these cramps depending on what foods I ate. The gas was actually very painful. It felt like I was passing a baseball and I could feel it moving. When I had an obstruction it was 100 times worse because that baseball was trying to move through a space the size of a pencil. Feels like your insides are being torn apart. To say the least its a terrible experience that was a daily struggle.

The last thing that would happen in this area was that I would have for a good 2-3 years straight was Diarrhea. Every day. Every time. This is extremely abnormal and should have been a concern to me. And yes it was but I was scared of the diagnosis. I don't know what really more I have to say about this because we have all probably had diarrhea at least once. Except most the time we ate something that was not completely cooked or we got a bug and were sick. Mine was everyday of my life no matter if I were sick or well. No matter what I ate. It sounds as bad as it was really. One thing that I never had to deal with but many people with Crohn's experience is incontinence. I am lucky that I have always had control over that.

The longer this went on the more I would research my symptoms. Crohn's always came up on my WebMD symptom search and that made me so scared. I didn't want to have a life time incurable disease. I was like the monkey "Hear not evil, See no evil, Speak no evil." If I didn't talk about it and pretended that it was temporary then it wasn't real. Well it was 100% real and my lack of motivation to seek help caused me to deal with a really bad situation. Probably the worst thing that has ever happened to me in my whole life. I will elaborate later.

I didn't want to get to graphic about Poop to gross anyone out because I am sure that you all can use your imagination well enough. Maybe some time in the future I can go into graphic details.... :)

Whats that feeling?

One of the things that would keep me at home on a Friday and Saturday night were the horrible symptoms that affected my stomach. I would frequently (like almost every meal) feel nausea and stabbing pains.

Nausea plagued more then most of my symptoms. When I would eat anything I would get nauseous. I could feel sick for hours after eating. I don't know why this would happen. I began to notice that certain things would make my more naseaus then others. I saw a pattern with dairy items. Things such as milk, ice cream and when I would eat pizza with meat, cheese and heavy dough. I haven't had milk or ice cream in a year and a half. I haven't had pizza in about a year or more. I miss them dearly but it is not worth making my life hell. It hard to deal with but its also easy in comparison to the other thing that happened to me a the same time.

Along with nausea comes the most painful symptom of all which is the cramping. Now if your a lady its highly likely that you have had menstrual cramps. They may vary from light to intense. The cramps that I had were everywhere in my abdomen and they were so bad sometimes it felt like I was being stabbed by tiny knives by a hundred tiny ninjas. There was nothing that would get rid of them that I had in my medicine cabinet. I would be doubled over in pain after dinner every night. I missed my best friends birthday party, I missed weekend trips to the coast. I would just want to lay in bed or on my couch and try to distract myself with the TV whimpering to my fiance about how much it hurt. Those were the bad times. Cramping ranged from moderate to intense. Moderate cramping was tolerable like menstrual cramping. My cramps are pretty bad and I have been use to that for years. Those times I would be able to go places and do things but more often then not I would opt to stay home because that is where I was most comfortable. I would miss hanging out with my extended family for many months. I missed out on a lot of things for a year of my life that I was stead fast of just dealing with one day " it would go away". Story of my life.

I would give anything to not have to experience those days again. Right now I don't have any of these symptoms and I am very Thankful! That also means that I won't celebrate this Valentines Day like most of my friends and other couples out there. I will be cooking at home, not eating chocolate or candy. These are the small sacrifices that I have to make to not feel those cramps or nausea again.

In the Dark

For a long time I lived in the dark about my disease. I never knew what I had or why I was experiencing these symptoms. I also am the kind of person who doesn't ever go to the doctor. I never talked about my pain or the diarrhea that I had almost daily. These would have been really key things to tell a doctor to be diagnosed earlier. I believe that I was some what scared to find out and I also believed that it would go away. Boy was I wrong.

After a while you get use to it. I had diarrhea everyday for a few months and was still thinking that it would clear up. It became normal and then I just got use to it. Anyone else would probably say "Oh no I couldn't let that go on". Well I did. It wasn't all that bad till the other symptoms started appearing that really made life hard sometimes.

I will start from top to bottom. My mouth. I started getting soars inside and outside. The outside was due to nutrients lost in my digestive system from all the inflammation in my intestines. They are little cracks in the corner of the lips. They are from Iron or Zinc deficiency. I was definitely and still am Anemic. They would last for weeks before healing. It was hard to heal A. because they were the result of deficiency and B. I had to open my mouth to eat and that would reopen the cracks every time.  I would be very embarrassed of this like any other person I suppose. I didn't want people to think that I had something else going on.

Another thing that was painful and annoying to have were the lesions that would show up inside my mouth at the bottom of my jaw on the gums and cheek. I would later find out that they were mouth ulcers that are a symptom of Crohn's. These were one of my least favorite symptoms because they hurt a lot. They would be irritated when I ate food and drank water. It was always a burning sensations like something touching an open wound. These would last for a few days or so not as long as the cracks in my lips.

The last thing that occurred was my throat also had ulcers. Just imagine swallowing and having the feeling of pins and needles stabbing the inside of your throat. OUCH!!! Probably the worst of all the things that would happen in that area. The worst was when I drank water. I am not sure why but that was the most painful. As you can imagine it was a big task to eat and drink for a few days. Nothing I did would help remedy it. When I wasn't eating or drinking it felt like a soar throat. At this time I had thought this was the result of my seasonal allergies. I'm sure that was me giving myself an excuse to not have to face the fact that I needed figure out what was going on with my body.

There are many more symptoms that would occur throughout my body but I will leave those for another time.

Thanks for reading!

What the heck is Crohn's?

Never heard of it? I hadn't either. Here is the definition from medicalterms.com. I have shortened  it a little bit.

Definition of Crohn's disease

Crohn's disease: A chronic inflammatory disease, primarily involving the small and large intestine, but which can affect other parts of the digestive system as well. It is named for Burrill Crohn, the American gastroenterologist who first described the disease in 1932.
Crohn's disease is usually diagnosed in persons in their teens or twenties, but can come to the fore at any point in life. It can be a chronic, recurrent condition or can cause minimal symptoms with or even without medical treatment.

In mild forms, Crohn's disease causes small scattered shallow crater- like areas (erosion) called aphthous ulcers in the inner surface of the bowel. In more serious cases, deeper and larger ulcers can develop, causing scarring and stiffness and possibly narrowing of the bowel, sometimes leading to obstruction. Deep ulcers can puncture holes in the bowel wall, leading to infection in the abdominal cavity (peritonitis) and in adjacent organs.

Abdominal pain, diarrhea, vomiting, fever, and weight loss are common symptoms. Crohn's disease can be associated with reddish tender skin nodules, and inflammation of the joints, spine, eyes, and liver. Diagnosis is commonly made by x-ray or colonoscopy. Treatment includes medications that are anti-inflammatories, immune suppressors or antibiotics. Surgery can be necessary in severe cases.
Genetic factors contribute to the causation of Crohn's disease. One of the genes has been shown to be on chromosome 14 in region 14q11-12.

Crohn's for me is super complicated. I have had multiple symptoms and was on the more sever side of the the disease. I personally hadn't met anyone with Crohn's before I was diagnosed. It is amazing the amount of people that have this disease. It also suck cause we have it FOREVER. While remission is possible you have to stick to a method of treatment that works for you for the rest of your life in order to keep remission and it's highly possible a flare could happen anyways. So complicated, for me, is the perfect word to describe it.

A little about me

My name is Brooke. I am 25 years old and I was diagnosed with Crohn's November 2011. I have had digestive issues long before the doctors discovered my disease. Since I was in High School I have had problems with poop. Having a full on hot flash that makes you strip off your shirt and turn on a fan while on the toilet is werid.

Needless to say this blog will probably be one giant TMI but I feel like I want people to know how I struggle to be a normal person while all this inner conflict is happening inside me.