Dealing with flare ups.

How I'm dealing with my current chrons flare and other health problems.

Cleveland Clinic

You know, it's really, REALLY sad that I have to BEG my doctors to do anything for me.. Ive been sick for 8 years now and have spent 2.5 years in Cleveland OH for the Clinic, and all it's done is drain my money. Everything I came here for is still an issue til this day. Recently, I had a visit to a rheumatologist because I have been having chronic body pain. Well before the appointment back in Oct of last year, my NP told me that I had Sacro-Ilitis in my hip joints, which was the initial reason for sending me to an RT. So I get to this appointment with this doctor(6 months later), and he asks me all these questions and thoroughly examines me and then sends me off to have labs and X-rays. Labs and X-rays come back and confirm that I do indeed have Sacro-Ilitis in my hips, my sed rate was 31(should be 15 or less) and I was Vitamin D defficient. So he's like "yeah, you got mild SI, but I don't think thats really a problem..I recommend seeing your PCP for vitamin d, and your sed rate was high, probably due to your chrons" and thats it. You mean to tell me, I had to wait 6 months for you to tell me to see my PCP for vitamin D and my GI..? Ive literally been tossed around to Drs ever since I first came here 2 years ago, and no one has done anything. My blood pressure is high, why is no one treating that? I have chrons, why is no one putting me on something for that? I don't sleep, why is no one treating that? I have bad anxiety and stress, why is no one treating that? I have proof of a rheumatologist issue, why is he not treating it?? I'm so incredibly fed up.. I feel like I definitely shouldn't even have to pay these high-ass Clinic bills for trips to see these doctors who aren't doing anything but taking my money. More over, I feel like no one should ever have to beg a Dr to help them as I just had to in this recent message I sent to my GI nurse practitioner and the Rhumetologist: "Hi rebecca, I just wanted to send you a message to let you know that my sed rate came back incredibly high a few weeks ago, and am wondering if you can start me on something for it? (Humara, ect) I saw the rheumatologist and he did all these tests then X-rays came back confirming that I did in fact have SI in hips and he just dismissed it along with my high sed rate and told me to see my PCP for Vitamin D and that its probably my chrons that'd causing the high sed rate an not anything related to his field (despite my body pain). here is a copy of my message to him: Hello, Could you please start me on something for my body pain? It is getting really bad in my hips when I walk and becoming incredibly debilitating. I feel like I have once again been left on my own with no help or medication. I am not experiencing any GI problems at the time, so I am not feeling the inflammation is from that. I am 23 years old and I hurt so much everyday, yet nothing is being done. Ive spent all my savings here at the clinic and feel left with nothing. I have been passed around from doctor to doctor and I just am not really sure what to do now.. thank you, stashia" I don't know what I'm going to do, but I'm about to lose it dealing with this. Im in so much pain, it hurts to walk, go up and down stairs and I can't sleep, but yet I can't get disability, so I am forced to work in this condition. Ive been strong for 8 years, and now its starting to physically wear on me. Sigh.

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.