Welp....

     I'm back at square one. I've been taken off of the medications used to treat crohn's disease. The reason for this is because I had a colonoscopy on December 15th. Guess what! All the biopsies came back negative. I sincerely hate that word, and normal. So I've been off of Pentasa for about a week. Although I am now on Prednisone but that is for a completely different reason.
     This last week or so has been one of the hardest of my life, emotionally and physically. I did not react very well to Osmoprep the night before the procedure and I felt terrible. I was bloated from taking the pills and drinking so much liquid and to top that off I was nauseous (and add in the normal colon prep pain). Then I had the procedure and I woke up and I was nauseous but the fact that I hadn't eaten since Saturday won out and I ate the cookies. I then proceeded to be nauseous until Wednesday night. On Thursday I received the news that my biopsies were negative and everything came back normal. Except there was still inflammation in my ileum. Though in defense of Pentasa I felt a lot better while I was taking it, I was in less pain and it helped keep my acid reflux at a minimum. I really wish they would have consulted me before deciding what to do. I realize they are the ones with the medical degrees but I do know how I feel better than they do. Thursday I was an emotional wreck. I was so done with everything. I was furious that they can't figure out what was wrong with me and even more furious that I am back where I started in February. Well not really more like April.     
     So I went on for the next few days feeling really down about everything and then Tuesday I wake up and I felt like my head had been punched several times. I chalked it up to an ear infection took tylenol and applied hot compresses to my ear area. Wednesday morning I wake up and my ear feels worse than the day before I can hardly swallow and when I do it feels like someone is running a knife down from the outer part of my ear to the beginning of my mouth. So I went in and turns out I have TMJ dysfunction, which is Temporomandibular joint dysfunction or disorder. Great another thing to add to the list of what is wrong with me. It is believed I got this lovely dysfunction from clenching my teeth and the occasional popping my jaw would do. TMJ is basically the area where your jaw and skull meet gets inflamed and hurts like none other. TMJ is likely to come back eventually after treated. I was given Prednisone to treat the inflammation and Naproxen for pain. That first day I was regretting not getting a muscle relaxer, as the doctor had offered to prescribe me one.
     I'm still getting used to all of the lovely side effects, which sucks because I'll be off of it in a few short days. But any way hope you all had a Merry Christmas!

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"It's not your fault"

I was reading excerpts from the book "The First Year: Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed" by Jill Sklar and the first chapter is about how it is not your fault you have this disease. Despite what others are telling you, you cannot give yourself Crohn's or UC. At the end of the first chapter was a little summary in a sentence which was "It's not your fault, nor is it anyone else's fault". That really struck me as profound, as I've previously mentioned I've had people from day 1, even though I'm not technically diagnosed with anything aside from ileitis, telling me how to eat and how to cure it. Which really has discouraged me. But it is not my fault, it's not your fault either. Remember that the next time some hints that it is, because it is not.

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After That Intense Post...

Here are some songs I've been listening to on repeat:

1. "Hope is What We Crave" - For King and Country

2."Without You" - For King and Country

3. "It's Not Over Yet" - For King and Country

4."Imperfection" - Skillet

5. "Always" - Kristian Stanfill

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The Truth is, I'm scared.

Do you ever feel like your world is crashing down on you? Every where you turn people you used to trust, love, rely on, are suddenly no longer there. Every where you turn you get criticized, because well you simply aren't good enough, or perfect, or whatever. I feel like every thing I am trying to accomplish in my life is simply being turned to dust and ashes. I'm so tired. Yet I can never sleep. I need a break from being me, from being sick. I cope ever so well on the outside, but sometimes the inside doesn't want to listen to the voice of reason. I'm emotionally tired. I think I've had more strain on me emotionally than physically. It can be hard to believe that I was fearfully and wonderfully made when my body doesn't work properly. This post is kind of a downer, but in other news my sister might be finally making her dream of owning a greenhouse business thing come true. Which is awesome. In fact she called me and was telling me how scared she was  because she sees herself as a failure and I told her how she shouldn't believe that because she too was fearfully and wonderfully made and how God had this plan for her, though it might not make sense now. I obviously needed that talk as much as she did.

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It isn't THAT Bad...

Yesterday at school I seriously got told that having (potentially in my case) Crohn's wasn't THAT bad. Um what? Excuse me? Did I hear you right? I was in complete shock. Please keep in mind this individual does not have Crohn's. I told this individual while yes there were worse things, Crohn's was definitely not anywhere near the top of my awesome list. This individual then proceed to tell me why she is an expert in all things related to Crohn's. You wanna know why she is an expert? Because her friend is dating someone with Crohn's. Her extent of knowledge was that this friends boyfriend farts uncontrollably because of Crohn's and it put a strain on their relationship. Sweetheart there is a lot more to Crohn's than farting and the bathroom. I realize this is going to become the norm of what people say to me when they find out, if they ever do. People don't understand, and frankly most of them really don't care to understand. And anyway they will never truly understand unless they personally have an IBD. No matter how far society comes, I believe, those who suffer from any disease are treated more like they are the disease, not that they are a person who happens to have a disease. If you really want to help someone, don't play doctor, chances are they want someone to just listen to them and feel valued as a person, not a disease.

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If You're Perfect, Ignore This

I'm a Christian. Yet I still question God. My disease may not be as deadly as others, but to tell you the truth it has completely altered my life. Before Crohn's I was a happy upbeat person who loved to play practical jokes on people and make others laugh. Now most days I don't have the energy it takes to still be happy and upbeat. I would rather spend my energy doing more basic things that are necessary for life. When I first got sick I could hardly take a shower, once I was done I was pooped. How is that fair? To me, to those I know? How could they ever treat me "normally" when I can't act "normally"? I realize I already have a post on fairness and I'm not going to dwell on it in this post. It frustrates me when people take their health for granted, I'll admit it, I did too. I never in a million years thought I would ever EVER get a chronic disease, I figured best case scenario I'd end up with breast cancer. I question God about why I, a 20 something, would get a disease that will forever be a part of my life until they find a cure. All I ever wanted in life was to be happy. But being happy is a choice and that choice is a lot harder to make every single day. Sometimes I make the choice, other days I don't. The whole question of "Why does God let bad things happen to good people?" comes to mind as I type this. The answer is simple, hard to swallow, yet ever so simple. We aren't good people. Well at least I'm not. I mean I haven't killed anyone, but I can be mean and crabby and a jerk. Sometimes I'm not nice to others. I sin, I'm very prideful. I'm not sure how to end this because lets be honest, conclusions aren't my strong point. But in summation I know that God has a plan for me and all the these hardships and diseases will ultimately lead to something beautiful. I can't see the big picture all I can see is the itsy bitsy piece of the puzzle that I'm holding. Things will get better and they will get worse, that is ultimately a fact of life everyone will have to face. Maybe not to certain extremes as others. That is all.

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Awareness

I don't know about you but every. single. time. someone asks me what I have and I say that I more than likely have Crohn's disease, I have to explain what it is. Like the weekend I went away I was tempted to bring along a bunch of pamphlets so I could save my breath. Why isn't Crohn's disease as talked about as many other diseases? Because its an invisible disease? Well actually it isn't for everyone. Why? I think Crohn's disease and Ulcerative Colitis are just as important and life altering as all the other highly publicized diseases. I was scrolling through CCFA (Crohn's and Colitis Foundation of America) and I saw someone had posted a video similar to the extremely popular ice bucket challenge, except it was the lego bucket challenge. The person who accepts the challenge has to walk across a line of legos. Feel the pain to end the pain.

Found this here

I thought this pictures was fairly accurate haha :)

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I'm Back!

     The trip went okay, for the most part. Because I'm a nervous person and my nervousness makes me physically ill, I had to be extremely careful of what I ate on the trip. Saturday night after the wedding was the worst because there was a lot of rich food though, I did well on not over eating. But overall I was extremely tired, which makes everything worse. Haha.

     On Thursday (8/22) I had another follow up doctor appointment. Basically it was more for if the Pentasa was not helping. But since it is (!!) I don't have to go on steroids! Yay!! I mean I'm not completely healed but I have way more good days than bad days, which makes me extremely happy :). While I was at the doctor I was informed that I would definitely maybe have to have another Colonoscopy which seriously sucks. But that procedure is mostly to make sure that everything looks more healed and they are going to re-biopsy everything and blah blah blah. Oh and I was given the outline for the low FODMAPs diet, mostly so that if I wanted to try it I could but its not required since I have been feeling better and I've already identified most of the foods I cannot eat. I believe that is all? Till next time :)

                                     Jenny

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Brittle

     Sometimes, like right now, I feel brittle. Like my bones are about to crumble, my hair is about to fall out. I sometimes get puss pockets in my throat, like when you get strep. I only get one and it goes away before the day is done. Is there a correlation between the puss pockets and feeling terrible? Once towards the beginning of this whole ordeal I created a hypothesis that as lack of sleep increases (so the number of hours of sleep you get decreases, measured by the average amount minus the actual amount (i.e. 10 hours minus 3 hours would be 7 hours of sleep you normally get but did not)) the amount of symptoms increases (measured on a pain scale of 1 to 10) So I only got 4 hours of sleep last night but I normally get 8 hours, my lack of sleep number would be 4. My pain today has been around a 4 when its been bad. Which yeah it's less confusing when it is all graphed out. But basically it in theory should be a perfect +1 positive correlational graph.

     The other day I was scrolling through my facebook feed and I found an interesting/relevant blog post about living with a chronic illness. The woman who wrote it writes about herself and having rheumatoid  arthritis. I will link to the post here. I really like how she describes (as the title suggests) that chronic is really just a polite way of saying incurable. Like rheumatoid arthritis Crohn's disease isn't one that is seen so much on the outside and people don't understand why, yes doing hardly anything can make one so exhausted. Today I was almost, almost treated like normal. I got asked how my tummy was by my boss. Yes she was well intentioned but she knows its not my tummy. I simply smiled and said it's been feeling a lot better as compared to the last few months. Whatever. BUT that was the only time I got asked. Though I'm apprehensive about this weekend because this will be the first time I've traveled since becoming ill. Please pray for me that the 6/7 hour car ride won't be too bad both ways and that we make it safe.

     Jen

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Fair

Yesterday I was so frustrated with everyone and everything. I want people to treat me normal, I want to act normal, I want to feel normal. But they can't and I can't. At least not right now. I know life isn't fair, I've said it hundreds of thousands of times to kids over petty, who gets to be in the front of the line, stuff.
I know life isn't fair, yet for some reason I still expect life to be fair.
I know life isn't fair, but I try to be a person why is this happening?
I know life isn't fair, but why me?
I know life isn't fair, but some people are worse off than me.
I know life isn't fair, but there is a God who loves me and you who let his Son die for us.

Last night my dad asked me if I ever thought this was all unfair, and he said if I answered that no I hadn't thought that that I was lying because he would be wondering that. I hesitated and said that yes I did think that but that I was extremely blessed even through this because I don't have ulcers, I can eat most foods, I don't have a colostomy/iliostomy. 

As John Piper said "Suffering is not only the price you will have to pay in the pathway of obedience sustained by joy in God, suffering is also designed by God to intensify your joy in Him." I went through life thinking I was invincible and that was foolish of me. Now, I'm not saying I partook in reckless behaviors, but I wasn't truly counting the blessing that is living. The 12th of August marks my sixth month of being sick.

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Green??

So today was lovely, just kidding it wasn't. This morning I had super duper green poop, mom called the doctor. I went to work, almost threw up/pooped my pants. Came home an hour later. Pooped all day. All green. The nurse called me back, I explained once more what was going on, she had to talk to the doctor. She finally called me back at 4:50. 10 whole minutes before they close, I had almost lost hope. But then they called! And now I'm on more medication!! I'm now taking Flagyl 250mg 3 times a day for 10 days to help with the weird poop/icky feeling stuff. If I felt better I'd be laughing because I have had green polka dotted poop today, and honestly that's really funny.

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Pass the food please!

I don't know about you but I don't have to avoid very many foods! And most of the time, the ones I do have to "avoid" I can eat small amounts before they will even come close to having repercussions. Though there are some foods that I have to avoid all together, okay like one...

1. Super greasy foods (avoid all together)

2. Fast food

3. Raw fruits, especially acidic ones (i.e. oranges, though I can eat like 1 fruit per day without any repercussions)

4. Spicy foods

I'm pretty lucky I don't have any problems with dairy or meat for the most part. What foods do you have to avoid, or can only eat small amounts of?

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Excuse Me I'm Napping?

I don't know about you but I get extremely exhausted during the day, whether I'm at work or just hanging out at home. Like so tired I can barely keep my eyes open. And then.......they shut for a little bit, 10 minutes, 20 minutes, an hour? That's not even the worst part because those little naps make it nearly impossible for me to fall asleep before 2 am. Normally I'm out by 11 pm! All I really think about now a days is sleep and ya know other stuff but mostly sleep. I feel that my sleep obsession is almost as bad as the inflammation in my ileum. (just kidding...mostly). I know you're all thinking "well don't lie down! Duh!" Truth be told I can fall asleep almost anywhere and while sitting (I haven't fallen asleep standing yet). So it doesn't even matter if I don't lie down!

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Back story

I haven't officially been diagnosed with anything as of 7/20/14, but I am highly suspicious of Crohn's disease, as my Gastrointestinal doctor and CNP say. But like any good tale I should start at the beginning, specifically February 11th at around 11:00 pm. That was the first time I had pain in my upper mid right quadrant of my abdomen, which is fancy talk for the middle between the end of my rib cage and the top of my hip bone. I merely attributed the pain to eating something weird, shrugged it off and went to bed.
2/12/14
 The next morning I felt fine and dandy, but around noon I started having some pain again and nausea, I took some pain relievers and went to work. Though by a couple hours in, it was clear the pain relievers weren't working. The pain continued off and on, very sporadically, it felt like someone punching and holding their fist right in that one spot. It was tender if you touched it, looked at it, breathed at it (hahaha). I am exaggerating a little bit as it was only if you touched it or put pressure on it. I thought it was my appendix, so I went to acute care. There we ruled out my appendix and moved onto my gallbladder! But like always, there is always blood work. So I had some blood drawn and my WBC count was significantly higher than normal, I was then sent to the ER. While there I had an ultrasound and everything looked fine and dandy, they gave me a pain killer shortly after I was admitted, so they sent me home. After we scheduled a HIDA scan.
The next week
The entire next week I literally laid around while my mom tried to deal with the current family physician I saw who was only at the clinic like twice a week. Finally they gave me some pain killers (which I hated taking - they didn't work!) and Zofran (ondansetron) for nausea.
Some day in February?
I don't remember what day I had my HIDA scan, just that I puked that morning. So I laid still for 2 hours, drank the nasty shake, and I was done. I was told they'd call eventually. Well eventually they called and guess what!? Everything looked normal! My ejection fraction was perfect and so on. So I was scheduled for a CT scan. They told me in the mean time keep taking the pain killer.
CT scan went fine, I was told that everything was fine. So they sent me to a GI doctor. During the time after my CT scan and the GI appointment we switched hospitals, because the first hospital kept twiddling their thumbs and the CNP I kept seeing was a snot face. She talked to me like I was stupid and a hypochondriac.
By this point I've had so much blood work done and everything was coming back normal. I was also extremely (tmi) constipated from the pain killer they had given me, which was causing additional pain.
3/20/14
Finally I met with the GI doctor, he was kind of old and didn't talk much. He had me try Dexilant which is an ulcer medication, even though I had no symptoms or any indications of having an ulcer. I was on it for 10 days and if by the end of those 10 days it hadn't helped, I was supposed to call and we would set up an Upper GI scan.
Sometime in March
My upper GI scan went perfect, everything looked normal. I was told by the GI doctor to wait 3-4 weeks and if I was still having pain, to come back in. Well my mom decided that this was crap. We went to the new physician I was seeing and he recommended seeing a Gynecologist. He also discovered I had a systolic heart murmur. It is very minor and you have to listen super duper close to hear it (didn't find this out til a couple of days after the appointment in the appointment summary).
April
Between that last Dr.s appointment and the OBGYN appointment I made a trip to the ER at around midnight on a Sunday. I went in because I was having chest pain which had started the day after my doctors appointment. No worries, my heart is fine aside from the murmur. It wasn't my heart like I had thought it was, nope it was a rather bad case of acid reflux. So I was put on zantac and prilosec
I went and saw the Gyno, everything looked normal in terms of that. She spent a lot of time reading over my records. While she was doing that she found that on that first CT scan way back in February there had been some inflammation in my ileum. She informed us that it was possible that I had ileitis, and recommended us to a different GI doctor at the current hospital we switched to, and that I had a small hemangioma on my liver. The OBGYN doctor had the GI doctor get me in within the week. A WEEK! After having to wait over a month to get in with the first GI doctor!!!!
Went in and saw the new GI doctor and she was/is amazing. Within that same week I was scheduled for a colonoscopy and an endoscopy.
May
The Colonoscopy and endoscopy happened like May 2nd. I don't remember much from that day, other than I was extremely confused. They took biopsy's of my colon, ileum, the rest of my small intestine, and my stomach (because in the Upper GI scan after 10+ hours of not eating there was still food residue in my stomach, suggesting a slow stomach aka gastroparesis). The biopsy's all came back good. I cried. I was put on a trial of Metronidazole (Flagyl), which seemed to help. I was on that for 2 or 3 weeks. But 3-4 days after I stopped taking it, all the pain came back. So back in to the GI we went, except this time we saw the CNP for the GI dr. I had some blood work done, the ASCA/ANCA, which came back positive for Crohn's. I was then put on Prilosec 2 a day for 6 weeks.
June
I had my CTE scan, for this I had to drink an absurd amount of barium. I couldn't get all of it down for fear of puking. BUT I got most of it down. Everything looked fine aside from the inflammation in my small intestine. After this I was scheduled for the swallowing of a video capsule the first week of July.
July
I was told the prep was not as bad as the prep for a colonoscopy. That is a lie. Its over two days, taking 6 days worth of laxatives each day. The second day liquid diet alongside the laxatives. The results came back as no ulcers, stricture, or lesions - only inflammation. I was then put on Pentasa (mesalamine) 3,000 mg per day. It seems to be helping with the pain from the inflammation but the side effects aren't pleasant (i.e. headaches, nausea, etc). I go back in the 21st of August to determine the next step. I have not been officially diagnosed of anything because of the darn biopsy! Though I am considered highly suspicious of Crohn's.
*Side note, I was also tested for celiacs, but given the location of the inflammation and the fact that there was no correlation between pain and food (specifically gluten) it was dismissed rather early in the game.

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