oooomffff, living the life.

bowels working ecard

Well I was trying to do my English work that was due at midnight but I cannot concentrate and I am having a horrible hot flash.

It all started a few weeks ago, not sure if it’s the season change or stress of school. I don’t think I’m stressed out about school  because I’m doing really good and like it but maybe subconsciously? By “it all started” I mean the exhaustion, countless bathroom trips, and severe stomach pain. I can see it slowly progressing each day. The other night I was up sitting on the toilet for hours and woke up in the morning with such severe stomach pain I had to take a pain pill to get out of bed and force myself to go to my anatomy lab this morning. Thank god I was done at 2:30. I came home and slept for about three hours. It really never ends does it.

Well, got off the phone with my doctor today. He sounded pretty disappointed, just as I was. This was really my last option available right now for treatment and it is clearly not working because I have constant pain. Even when prednisoneecardgoodI feel good, I still have pain. There is a treatment right around the corner but not sure exactly how far that corner is. I don’t know much about it other than it is approved for rheumatoid arthritis and in trials for Crohn’s. We’ll see. Before anything he wants to do a colonoscopy -____- But really before anything we can say good bye to this thin, proportionate face thank you to my 2934838753rd time on prednisone, which started yesterday. Already experiencing hot flashes, moodiness, and insomnia (as you can see it is 2am). And also awaiting my hip and knee replacements at age 30.

It’s constant frustration lately. I haven’t been having much fluctuation in my weight so yes in fact, I look good. Don’t, please, for your own good, ever say the three words “you look good” to a sick Crohnie. WE KNOW! This is in fact an invisible disease meaning unless you are my doctor with a camera up my butt you cannot see this illness. I haven’t been able to eat before 5pm most days without feeling terrible amounts of pain and several potty emergencies in the hour to follow (refer back to my post “Potty Emergencies 101” if you are confused as to what I am talking about…). I can’t even look at food lately. Never ask a Crohnie to finish their meal, or why they are not eating. I don’t care if it is a perfectly cooked filet mignon and a scoop of fluffy garlic mashed potatoes stomach achewith a side of perfectly seasoned mixed vegetables; it is nauseating. Also, don’t force a Crohnie to push themselves harder than they already have. We know what we can and can’t do and we are probably already past our limit of what we should be doing.

I do a lot of nothing lately. Not by choice, but because of this annoyingly life-consuming disease I’ve been blessed with, and the essence behind this whole blog of course. Sometimes I feel like I need to give everyone I meet a detailed medical pamphlet with every little thing drawn out about Crohn’s disease for them to remotely understand. I mean you will never fully understand unless you go through it, as with most situations in life.  But with Crohn’s a stomach ache is not just a stomach ache, “I’m tired” isn’t just “I’m tired”, and in most cases “I don’t feel good” is just a nice way of saying I feel like someone is ripping out my intestines and setting them on fire so try to be at least a little sympathetic or leave me the hell alone.

Crohn’s is indeed a huge pain in the ass, but it isn’t all shitty all the time.. ahah well some of the time. The moral of the story is you don’t know how strong you really are until being strong is the only choice you have. Yeah, it sucks but it could be alllloooot worse. All this talk about different potential cures on Facebook and social media I read all the time is great and all but, I tend to focus on the now, who knows we might not be here tomorrow. So hell, throw a smile on and in between your bouts of excruciating pain and embarrassing potty emergencies find a reason to smile. Laughter is the best medicine. And if you can’t laugh eventually about the weird, awkward situations you will encounter as a Crohnie because they are a lot more frequent than one would think, you’ll go crazy. So I threw in a few pretty funny ecards I found to hopefully get the rest of you Crohnies laughing hopefully at least a little bit!

doing nothing ecard

…said no healthy person ever lol

English can wait till tomorrow. Turning my AC back on because these hot flashes are worse than trying to put makeup on in the dead of summer. Sweet dreams errrrybody.

-xoMichelle

A Little Complaining Does the Mind Good

You might ask why I am up right now.. this early, it’s 6:15am here in Mass. Well, it is because my joints and bones have been yelling for help the past 2 hours. Actually, not just yelling they are full out screaming. The pain I am in right now is agonizing, I don’t know how I’m really even thinking. Although my knees and hips are in the worst pain it’s all the way from my knuckles to my toes. It is more of an annoyance though because there is not a medication or anything that will make it go away. Rubbing and massaging my knees and legs helps, but it’s hard to have the patience to do it myself. I feel like an old woman, and if you are a Crohnie you know exactly what I’m talking about. It is probably my own fault though (in combination with getting ready for the clinical trial having to make myself sick basically) because I haven’t been taking my glucosamine and chondroitin, man that stuff is a miracle worker. I was on a good stretch of taking it but then sometimes popping huge horse pills every day can get just old. Until you soon remember the reason you started taking them in the first place that is..

I have been wondering, this is for my fellow IBD patients… I know joint pain is very, very common with IBD but do any of you get bone pain? When I say bone pain I’m talking a severe aching pain coming from inside of your bones. Yes it is as bad as it sounds. When I was on Tacrolimus I would get this agonizing bone pain and my doctor never had an explanation for (along with them not knowing a lot about a lot of the other side affects we have). I would be up all night long tossing and turning, face cringing, and sometimes even tears completely out of my control pouring out. I am not exaggerating on this one either.. It’d get so bad I’d make my boyfriend (at the time) stay up and rub my legs for hours (where can I find another one of those?! :p) My doctor then one day told me he read something about that medication causing bone marrow to swell and it would get worse with weight bearing. Which was exactly my case. This kind of made me cringe, I didn’t even know bone marrow could swell. But then again, pretty much anything in your body can. But I’ve been off of this medication for quite some time and I occasionally still get this awful bone pain, like right now as we speak. My doctor told me once it might be fibromyalgia… And I laughed in his face, not literally but I wanted to. I know that is just a label for people having pain that the doctors don’t know how to explain, he basically even told me that. Anyways, I’m starting to think it’s just the Crohn’s itself causing it. Any thoughts? 

This actually probably isn’t early for all of you other people out there who have work and are morning people, but not me. Not that I’ve ever been pregnant before but I could probably compare it to morning sickness.. It sucks. Most of the time I can’t eat till noon or later. thankfully this prednisone has kept my appetite. But some more complaints just because I’m pretty damn frustrated right now. I got this stupid itchy rash (assuming from the prednisone, I get it at least once every time I’m on it) so I stopped taking it for a couple days. Shhhh, my mom’s going to kill me. Consequently I started having bloody poo. Yeah disgusting. But this is probably the worst side affect I get. When it happens my stomach/abdomen area is in an awful amount of pain. As you could imagine, having canker-like sores all over your insides that are bleeding. Ouch. Well I decided to take 20mg of prednisone last night, rather than my usual 10mg, to kind of kick myself out of it. When I came off of it for a couple days it was pretty bad, not sickness wise, but the withdrawal side affects I’d like to call them, if that makes sense to you. It’s like my body is going through a withdrawal. Now, I know your not supposed to come right off of prednisone, but 10mg was a safe dose to do this from (just so you all know). I started getting acne like a 14 year old boy going through puberty… Not fun.. Or attractive. Hoping this 20mg will help a girl out and clear my skin up.

This post has been kind of boring but I felt the need to complain a little bit. Get it all out. Annnd I just had a hot flash.. Yeah prednisone does that to me. It’s amazing how fast the steroids actually work. This is kind of random but I’ve been thinking about how much my disease has evolved and changed over the years. Six years ago when I was in high school I had pretty much all different symptoms than I do now. It’s like an episode of NCIS where they think they have the killer the whole time but then realize it’s the wrong person. They have to solve the mystery all over again. I never had the pin point and all over pain in my stomach like I do now. I also never had as much nausea as I do now. It was more stomach aches, the sweats (I never showed a fever unless I was deathly ill because of all of the immune suppressants I was on), and lack of appetite. My joint pain wasn’t nearly as bad, but then again that probably gets worse with age.

Well, I’m getting pretty tired. Oh, I almost forgot! I have my first appointment to fill out paperwork, get blood work, and learn how the trial is going to work on Friday in Boston! I scheduled my fecal transplant for next week! Counting down the days to potentially feeling good, but not looking forward to that fun colonoscopy prep! *sarcasm* It will be one of two in a very short period of time. I hate those things. I’ll let you all know how it goes though! I’m going to try to get some more sleep and get my mind off of my aching limbs.

-xoMichelle

A Hidden Gem: Managing My Joint Pain

As you know if you follow me, I have been feeling great and continue to feel great! Being able to do and go all day long. Steroids are amazing! In that aspect at least. Since I am feeling better I have been looking at topics around social media and such that people have been reaching out to others for. One was joint pain and other was medications. Even though I am feeling better, I do have joint pains. Almost all the time, and sometimes worse than others. Many Crohn’s patients are prescribed medicine for this, one including opioids or narcotics. I was never given the option of this from any doctors I ever visited. Which now I realize is for the better. The pain can get bad but there are other options to manage it. Since we, Crohnies, are known to bleed.. Of course, ibuprofen, aspirin are not an option. And Tylenol and those types aren’t good for your liver over a long period of time. So what do we do? Well, I may have found a miracle worker. It is not an instant solution but it will do what we want it to, decrease this pain over time, in the long run. And it may also prevent further damage.

A couple years ago my dad was getting cortisone shots in his thumb because of an injury from work, he is a general contractor. He was scheduled for surgery on it, which could potentially ruin his career. Hands are a vital part of his job. Someone had suggested Imageglucosamine and chondroitin. Well, to think a little supplement would help this big problem was kind of far fetched but he decided to try it. Want to know what happened next? He cancelled his surgery! It worked! His joint wasn’t bothering him at all anymore. It was almost a miracle!

So, with this information I decided to try it out for myself. Experiment a little bit. It is a supplement so it is naturally occurring in the body. I figured it couldn’t hurt. All my life I have had the achiest knees, hips, and ankles to the point where some days it was a struggle to walk.. The joint pain is also affecting my back now on top of my herniated disk. And I know this was from the Crohn’s and all of the medication I’ve been on. The prednisone especially, as it causes bone degeneration (which I have in my spine). My doctor told me I should hands down be taking a calcium and vitamin D supplement at my age with my history. So.. here we go. I know taking pills is the biggest hassle in the world, and I’m saying this from experience. At times in my life taking up to fifteen pills a day. And feeling like an old lady with my pill organizer. But, I didn’t realize the difference this would make. Pairing up a tasty either fruity gummy or chocolate chewable calcium supplement with glucosamine and chondroitin, my joint pain was disappearing! I was even back in the gym. WOW was I amazed! The best brand to buy for the glucosamine and chondroitin is Osteo BiFlex. I’ve found asking other people and for myself it works the best.

Now, you are not going to get immediate results.. But overtime, as did mine, you should see a little bit of improvement. I’m not saying this is going to work for everyone but if I could save one person from going through this joint pain by reading this it would be worth it because it can make you miserable.

These other pain medications are not something to mess with. They actually cause rebound pain, and a medication used often for Crohn’s pain management you all I’m sure are familiar with is dilaudid. I learned quick after being on this with kidney stones that it causes rebound ABDOMINAL pain. The attending doctor at the hospital sat down and had a long conversation with me about it. He told me this was not a good type pain management. And I thought about it.. He was right, why treat your pain with more pain? It doesn’t make sense. These also mess with the chemicals in your brain. Which people don’t understand.. they don’t realize a lot the cause for depression, anxiety, anger, is actually being caused by a pill. So then they go to the doctor and add another pill to ‘fix’ or I like to say mask something else. Which is the last thing you need. When taking dilaudid I found myself crying myself to sleep, having violent thoughts, and a bunch of craziness was going on in my mind. It was not good. I know if my pain was so bad my doctor would never tell me I couldn’t have something but he is very good with explaining and educating me on options and the affects these meds have LONG TERM. Educate yourself and look up the different options.

I haven’t known a lot of Crohn’s patients to try this but it was a pretty good solution for me. It is definitely worth a try! It also provides a benefit to your body by blocking certain enzymes that attack the joint. So, next time your doctor offers you heavy duty pain meds, take a second and think about it! Joint pain is a huge issue for Crohnies, I just want to get some new ways to manage it out there and different options for treating it. Be aware of the medications your taking and every single side affect listed. It may not affect you right now, but I promise you it will later in life!