Motivational thoughts

Frustrated

So basically, I am sitting around my house all day doing nothing but playing Halo 4 and sleeping. I've been so fatigued lately, that I haven't had very much energy at all. Two hours after waking up, I am ready to go back to bed. I have also started to get really bad stomach pains when eating again. Everything is just getting worse, and none of my doctors are doing anything..well one is doing more than the other. I haven't even talked to my adult GI doctor in three months. That's great, considering he knows how severe my symptoms were the last time that he saw me. My pediatric GI doctor pretty much told me that he is at a loss for what to do next. He mentioned maybe sending me to Vanderbilt or some other facility that specializes in difficult cases, but I've been to Vanderbilt before and they didn't do anything for me. It was just a waste of gas, money, and a huge disappointment. He also had mentioned possibly switching me from Remicade to Humira, to see if that would help more, but I don't really want to go on Humira at all. I'm just getting really frustrated with not being able to do anything because I am so tired, and i'm really tired of the stomach pain all the freaking time. It is absolutely the worst feeling in the world to hear your doctor tell you that they don't know what else to do for you...it really is. :/
I don't know where to go from here.

At a standstill

My pill cam came back and showed ulcers in the ileum and lower intestines, but for some reason that particular area is very difficult to treat. My doctor does not believe that it makes me a candidate for surgery, which would be my next option. . So now I'm stuck.
He is considering switching me from remicade to humira now, but the thought of how bad those shots are going to hurt is killing me.
I have absolutely no energy. I mean, I literally wake up, and then feel like I haven't slept in a week. It's just getting old.
I feel like I am at a complete standstill with my health now.
I sleep all day, eat and then sleep some more. That's no way for anyone to live their life. I'm ready for this to get better so I can resume a normal life.

The latest

Wow, so a lot has gone on with me lately, which is why there was such a gap between updates.
To begin with, my stress has been off the charts dealing with a select number of things, and it really just broke me down to the point where I just had to shut everything off and regather myself.
I've found out the hard way that if you spend all your time and energy on trying to please others, and make others happy, you wear yourself down. It is literally impossible to make everyone happy. The sooner you realize this, the easier focusing on making you happy becomes.
Now I am just trying to heal and make me happy.
I think that this time being by myself (and essentially cut off from the world) has dramatically reduced some of my daily stresses. Its the necessary step that God made me take that I would not of been able to do on my own. I needed a break from a lot, but was too busy trying to be a people pleaser to consider my own well-being.
Now, I have no choice. I am literally at the point now that I barely have enough energy to go to the mailbox. I'm the tiredest I've ever been.
However, there may possibly be a light at the end of this long dark tunnel for me. Next Friday, I will find out what my camera endoscopy showed, and hopefully get some answers as to what all is really going on.
Its just so frustrating that at 20 yrs old, I can't go out to clubs with my friends and I can't do anything that requires a lot of walking, or prolonged standing. It really just takes a huge part of my lively hood away.
My mother wants me to just stay in and rest all the time, because she can see how tired and weak I am, but its just so hard for me to do nothing when there's so much I want to do and accomplish. It really is a sad situation that a lot of people don't get to see or know about. Chrons has taken almost every aspect of living away from me, and I'm sure I'm not alone in this.
Anyway, that's about all of my recent rants and complaints, but I will try my best to update more frequently.

My Chrons Story

For me, Crohn's brings on a bunch of different symptoms and ailments with it. The biggest issue that I have, almost non-stop, is abdominal pain. The pain is worsened after eating and drinking; and almost never subsides. It is generally located in my lower abdominal area, to my right side.  There have been times when the pain has been so bad that all I could do was curl into a ball and lie on my bed, until it eased up enough for me to drive to the ER.  Even after getting to the ER, and having tests done, nothing ever came back to show why I was having such significant pain. Unfortunately, having many tests, with the results coming back completely normal, seems to be a common thing for me over the last couple of years.

Another big issue that puts a hold on a lot of daily things for me is my extreme fatigue. This may not just be caused from the Crohn’s, but it is definitely playing a huge part. My fatigue is so bad that it takes a lot for me to just get up and go to the store; and sometimes even to walk from my room to the bathroom. When I was first diagnosed with Crohn’s, in 2010, I was 17 years old, and had just graduated from high school. I ended up having to quit my jobs, and withdraw from college, because I couldn't get out of bed due to me hurting so badly. As of today, I still have not been able to resume my normal lifestyle. My daily routine now consists of me waking up, grabbing a very SMALL breakfast (which normally ends up being my last meal until about 6:00 pm or 7:00pm that evening), showering, and lying around the house. I do, occasionally, muster up enough energy to drive down the street to my best friend’s house to have movie nights with her. Other than that, she is basically my only form of social life outside of my home.

Aside from the fatigue and abdominal pain, there are other minor issues that I experience.  I have occasional constipation/diarrhea. Fortunately, the diarrhea symptom is less frequent than the constipation. Oddly, I do get constipation that is so severe that I am impacted.

After being diagnosed with Crohn’s and Ulcerative colitis, my pediatric GI doctor put me on a series of medications. First, they started me on Asacol (2 twice a day); then they added Entocort (6mg, once a day). After the doctor realized that the Asacol was not working, he put me on Pentasa (3 twice a day), along with the Entocort, but increased it to 9mg a day, and that still did not work. My doctor then switched me to Apriso (4, 0.375 twice a day), with Prednisone added. Yes, Prednisone does make you gain weight, and it does give you chipmunk cheeks, and a distended belly. After taking all of these different medications, I still had not gotten close to remission. My doctor decided to put me on Remicade (every 6 weeks) with Methotrexate Injections (once every week). Learning to give myself shots every week was incredibly bothersome; and after taking the Methotrexate shots, I would feel like I had the flu for three days. I switched to an adult GI doctor recently. He has put me back on the Pentasa, twice a day, with Entocort. This is where I am at currently, minus the Methotrexate. I am still not in remission, after almost four years.

I would be telling a huge, bold-faced lie if I said that still being sick and going through the same pain and suffering, if not more than when I first was diagnosed, doesn't bring me down at times, because it one hundred percent does! There are just some days where everything catches up to me, and I get a little frustrated with my situation; but it always passes. My mother always tells me, when I am down about my health, that even though I’m sick and not feeling well now, it won't always be this way. I know that my life is going exactly how God planned it to go, health problems and all.

So how do I deal with all of this at the end of the day? Prayer. I pray about it and have faith every single day that I will be healed completely one day; and that gets me by! I know that right now I am suffering, but I also know it won't always be like this.

"The pain you have been dealing with now is nothing compared to the joy to come." Romans 8:18. I read this verse and it gives me a little extra boost of encouragement when I need it.

In addition to prayer, the next best thing I do in dealing with illness is talk about it with someone. Whether you talk to friends, a psychiatrist, relatives, or you just write in your journal, it will help tremendously. I normally talk about everything with my mom. Without my mom’s support and love, I don’t know what I would do. She has been there for me to unload on and complain to. She’s been the one taking off from work to take me to the hospitals, and back and forth to doctors’ visits. Having family and friends for support really makes a difference in everything. Keeping things bottled up can be a large source of stomach pain for Crohn’s patients. Crohn’s is, after all, a stress-induced illness, so eliminating any unnecessary stress is advised if possible. Try to engage in light exercise like walking or yoga, it helps as well; and that's what I try to do often.

To wrap everything up, it has definitely been quite the long and difficult journey that is still nowhere near being completed. No doubt, it has made me a lot stronger. I know things could always be worse. I am just thankful to be alive every day.  

Stress & Chrons

I felt like I needed to make this post because I am/was recently incredibly stressed and I thought that other people may deal with the same things whenever they get stressed out and they have Chrons or an IBD.
Stress is a huge factor in causing flare ups and pain for a large percentage of people who have this disease. Stress can come in many different forms, and people can also become more stressed out in certain situations than others.
There are different levels of stress:

• Acute
• Episodic Acute
• Chronic

Acute stress is the kind of stress that you would feel in an emergency. (Much like if you were to almost fall off of a bike, or get hit by a car.) This is the most common and tolerable. After the stressful moment is over, it's gone and you can go back to your merry ways.

Episodic Acute is when life deals you a curve ball, and it is going to take more than just a few moments to rebuild yourself from the event. These episodes tend to take time to gradually get over, like a breakup, or a death. It is crucial that you are able to cope and deal with the issue that is causing you to have the long-term stress, immediately, or else it can lead to having Chronic stress. Talking to a psychiatrist can really help with the issues that may cause a person to have the Episodic stress.

Chronic stress is the most common form of stress in people who have a lifelong illness or disease. This is something that I deal with personally everyday. It's the feeling of there not ever being an end to your stressful situation, or there not being a way out of it.

Having Chronic stress can really trigger a lot of other problems with your health as well. I know with me, if I have an argument with someone, immediately afterwards my stomach will hurt really bad, and I'll have to go to the bathroom. Chrons is a stressful thing to have on it's own, so anything extra on top of it makes me feel like the entire world is collapsing on me.

I have recently learned to cut a lot of unnecessary things out of my life that could or did cause me a great deal of stress. Old friends, boys, or anything I knew would stress me out. I try to avoid putting myself into any situations where I know I will feel anxious or stressed.

Some other things that I have noticed that helped with my stress are:

• Praying
• Wii Fit
• Deep breathing
• Walking away from arguments
• Talking to someone
• Walking 

Usually, after I pray I'm not as stressed, so I don't have to progress to doing anything else after that. But if I get into an argument  I usually just stop replying or walk away. You've got to choose your battles wisely, with Chrons. Nine times out of ten, whatever I'm arguing over isn't worth the stomach pain and bathroom visits.

I can not say this enough..
TALK TO SOMEONE. Write in a diary. Get it out.

Medications that can lead to IBD complications (byDrugWatch )

Medications that Can Lead to IBD Complications

Today, more than 1 million Americans are affected by Inflammatory Bowel Disease (IBD), which is a chronic condition that involves inflammation of the gastrointestinal tract, and about 30,000 people are diagnosed each year.

Crohn’s disease and ulcerative colitis are the two most common inflammatory bowel diseases. These diseases can cause debilitating pain and can lead to life-threatening complications when left untreated. There is no known cure for IBD.

There are a few medications that can either cause IBD or exacerbate symptoms, and patients need to be aware of the risks.

Accutane and IBD

Accutane (isotretinoin), created by Roche, is a medication used to treat severe acne by reducing the amount of oil released by oil glands on the skin. It is typically prescribed by a physician after other methods of acne treatment, such as antibiotics, have been exhausted.

In 1982, Accutane was approved by the U.S. Food and Drug Administration, and it proved to provide long-term and even complete reduction of acne for 80 percent of patients. But in 2009, the drug was recalled after reports of serious side effects, including IBD-related complications.

Adults and teenagers who have used Accutane are at risk of developing Crohn’s disease. People with severe cases of Crohn’s may experience pain and bleeding during bowel movements.

Common Crohn’s symptoms include:

·         Low-grade fever

·         Loss of appetite

·         Weight loss

·         Fatigue

·         Prolonged diarrhea

·         Lower abdominal pain

·         Inflammation of joints

People who have used Accutane are also at a higher risk for developing ulcerative colitis, which is a chronic disease affecting the large intestine.

Common ulcerative colitis symptoms include:

·         Blood clots

·         Abdominal pain

·         Blood and pus in stools

·         Diarrhea

·         Fever

·         Rectal pain

·         Weight loss

Although Accutane was recalled in 2009, generic brands such as Amnesteem, Claravis and Sotret are still available.

Non-Steroidal Anti-Inflammatory Drugs and IBD

Non-Steroidal Anti-Inflammatory Drugs (NSAIDs), such as Advil or Motrin (ibuprofen) and Aleve (naproxen) are found in most household medicine cabinets today, and are routinely used to reduce inflammation and relieve fever and pain such as head and body aches.

People with IBD may feel pain, aching and cramping on a daily basis, and it can be tempting to turn to NSAIDs for relief. But while these drugs reduce inflammation and relieve pain, gastroenterologists recommend that patients with IBD avoid taking NSAIDs. Although NSAIDs do not cause IBD, these over-the-counter drugs can make IBD symptoms severely worse.

NSAID use can contribute to the flare-up of bowel disease symptoms, including the development of ulcers in the stomach and the small intestine, and small bowel or colonic bleeding. Prolonged or excessive use of NSAIDs may even cause IBD relapse.

Patients with a history of IBD should avoid NSAIDs, and anyone considering Accutane treatment should discuss the side effects with their doctor.

Brought to you by DrugWatch.com  

Breakouts?

I have been noticing lately that I have gotten weird breakouts on my abdomen, chest, and neck, like it's an allergic reaction. I told my doctor about this, and he seems to think that it is related to my Chron's and UC. Apparently, skin rash is a side effect of having this disease. My thing is, I haven't had this issue until recently, when I found out that my Chron's has spread throughout more of my colon. I don't know if it's because my condition has worsened that I am now getting this "outbreak" or what, but it is quite bothersome. On top of that I have been more fatigued than usual as well, and it's getting old. Just wondering if anyone else has had these issues?  

Insurance changes

I was just wondering if anyone else was having the same or similar issues that I am having with the new insurance changes due to Obama Care. Since the new changes have set in, it seems that all of my doctors are now more unwilling to do things or look into things because of the fact that the insurance will not approve certain tests or items. In fact, my doctor looked me straight in the face and told me that he could not admit me to the hospital even though I was in extreme pain, simply because the test that I had just had done came back normal. I think that that is completely absurd. I can not tell you how many times I have been sent home or told that they could not proceed any further with tests or surgery because my insurance hasn't approved. As of right now, I am at a stand still with having this one final test done before my doctor and I can progress to talking about my having a much needed resection because my insurance is giving them the run around on getting approval. Meanwhile, I am sitting at home in extreme pain while they take their time approving what needs to be done. In some aspects, Obama Care is wonderful because I am able to stay on my mothers insurance,  which I desperately needed to stay on, but the way that it now has my doctors acting is terrible. People who need to be in the hospital, can't be because insurance companies are trying to cut costs.  At this point, I'm just praying that everything I need gets approved before my colon decides to rupture, then the insurance will be forced to pay for my more expensive emergency surgery. 

Anyways, I just wanted to voice my opinion on this new insurance issue, and see if anyone else has had any negative side effects from this as well. 

Update

I decided to make an update on how I am doing and feeling as of today. I have gotten to the point now to where everything that I eat or drink hurts my stomach severely. I am having to take pain medicines before eating to help with the pain, and even with the medicine, I still am in pain. My appetite is almost completely gone, and I have little to no energy. I basically just lay around the house because I'm so fatigued and hurting all the time. Tomorrow I go to the doctor to see what our next plan of action will be since nothing else has or is working for me. I am at this point beyond ready to have a resection done, because I have pretty much no quality of life as I am going right now. I'm just ready for a solution, and I'm ready to get on with my life, instead of staying in my house, doing nothing all day every day. Last week I had some tests done to check and see if my gallbladder is working, so I am guessing I will get the results from that at my appointment in the morning as well. As the record has gone, I will have tests done, but everything will come back perfectly normal.

 Anyways, fingers crossed for tomorrow!

Still no answers?

For 4 years now, I have been dealing with Chrons, and it is still, today not nearing remission. I am reaching out now to people around the world and to doctors around the world to see if they have any new leads as to what else could possibly be going on. 

My symptoms as of now are:

• Severe fatigue
• Weight loss
• Loss of appetite 
• Abdominal pain (generally in the lower parts).
• Abdominal tenderness

I am currently on the following medicines:

• Apriso- 3 0.375 capsules, twice a day.
• Entocourt- 6mg once a day.
• Remicade every 8 weeks.

I am just really tired of having my life being on hold because of my health. There have been numerous CT's, MRI's and Ultrasounds, but everything keeps coming up normal, even though I am still having all of these problems.
At a dead end it seems.

How do i deal with my illnesses?

Prayer. I pray about it and have faith every single day that I will be healed completely one day, and that gets me by! I know that right now, I am suffering, but I also know it won't always be like this.
"The pain you have been dealing with now is nothing compared to the joy to come" Romans 8:18
I read this verse and it gives me a little extra boost of encouragement when I need it.
Besides prayer, the next best thing I can suggest in dealing with illness is to talk about it with someone. Whether you talk to friends, a psychiatrist, relatives, or you just write in your journal, it will help tremendously. Keeping things bottled up can be a large source of stomach pain for Chrons patients. Chrons is, after all, a stress-induced illness, so eliminating any unnecessary stress is advised if possible.
Try to engage in light exercise like walking or yoga, it helps as well, and that's what I try to do often.
Hopefully these things will helpful to others like they were for me! 

My medicines

When I first got diagnosed with Chrons and Ulcerative colitis, they put me on a series of medications. First, they started me on Asacol. (2 twice a day).
Then they added on Entocourt (6mg, once a day). After they realized that the asacol was not working, they put me on Pentasa(3 twice a day), along with the entocourt, but increased it to 9mg a day. That still was not working. They then tried me on Apriso(4, 0.375 twice a day), with Prednisone added. (Yes, Prednisone does make you gain weight, and it does give you chipmunk cheeks and a distended belly.) After all of this and it still had not gotten me close to remission, they decided to put me on Remicade(every 6 weeks) with Methotrexate Injections( once every week). I switched to an adult GI doctor recently and he has put me back on the Pentasa twice a day with the Entocourt. This is where I am at currently, minus the Methotrexate and I am still not in remission.
Hopefully, we are getting closer! It has been a long, stressful, and difficult path dealing with all of this, but I've got faith that I'll get into remission soon.

What is Chrons & what are my symptoms?

Chrons Disease: What is it?

"Crohn's disease, also known as Crohn syndrome and regional enteritis, is a type of inflammatory bowel disease that may affect any part of the gastrointestinal tract from mouth to anus, causing a wide variety of symptoms. It primarily causes abdominal pain, diarrhea (which may be bloody if inflammation is at its worst), vomiting (can be continuous), or weight loss."

What are my symptoms?

For me, my Chron's brings on a bunch of different symptoms and ailments with it. The biggest issue that I have almost non-stop is abdominal pain. The pain is worsened after eating and drinking, and almost never subsides. It is generally located in the lower abdominal area, and to the right side for me.  There have been times where the pain has been so bad that all I could do was curl into a ball and lay on my bed until it eased up enough for me to drive to the ER. 

Another big issue that puts a hold on a lot of daily things for me is extreme fatigue. This may not just be caused from the Chrons, but it is definitely playing a huge part. My fatigue is so bad that it takes a lot for me to just get up and go to the store. When I first got diagnosed with Chrons back in 2011, I ended up having to quit my jobs, and withdraw from school, because I couldn't get out of bed, and I was hurting so bad. As of today, I still have not been able to resume my normal lifestyle.

Aside from the fatigue and abdominal pain, the only other more minor issue I have is occasional constipation/diarrhea.

Hopefully, that will be all of the symptoms that I will have to deal with for awhile!

I will make another post about what medicines I am currently on, as well as the medicines that I have used thus far!