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

Talk About A Pain In the Ass

Pun completely intended in that title. But, me being a Crohn’s patient you’re probably thinking something different than what I’m really talking about (lol). I mean I guess I should have said a pain right above my butt but you get the jist of it. In previous posts I have talked about a herniated disk in the lowest part of my back. I’ve had a cortisone shot before and it wasn’t the most pleasant experience. Although, it was probably the coolest thing I’ve seen in a while. I mean the whole process of it.

I get called into the office, and of course as always, ma dukes is right by my side 🙂 I walked into what looked like an x-ray room with a big white table in the middle of the room and an x-ray machine with a monitor to the side of it. The nurse was very nice and quite comical when she asked me to lay on the table and then just completely whipped my pants off my butt. Yes, without even asking. Why do I always have such interesting experiences at the doctors, I don’t know. But anyways laying on the table, bare ass out the doctor came in. At first I was kind of confused as to why she whipped my yoga pants down considering I was getting a cortisone shot in my back… lol. But, it was the lowest part of my back and then soon realized they have to do the injection lower than the actual herniated disk. Thankfully, he wasn’t going right into my spine but rather in between the very top part of my butt crack, OUCH! Well, here we go. I’m face down on the table and he brings out the needle. Having being poked and protted so many times I have this weird thing about having to watch the needles go in whether its a shot, blood work, or an IV. I know, I’m weird. But being face down I couldn’t even see the needle which was my first problem. But, I just looked forward and saw my mom’s face and let’s just say that told me it all, which was my second problem. The doctor first gave me an injection of Novocain and boy did that kill. He waited a little while and gave me a second shot of it. Then set up the x-ray machine right next to my back. I felt pressure as I thought he was taking the Novocain needle out… Well, he was walking around the room and I was still feeling pressure. The conversation went like this…

Me: “Uhm, I still feel pressure, why.. is the needle still in me?”

Then, my mom with widened eyes and a shocked nervous smile just looked at me.

Doctor (with his thick Russian accent and as calm as can be): “Yeah, don’t move. It’s still in there.”

Me: “Mom, seriously is it? Can you see it?”

Mom: “Yeahhhh it’s still in there alright!”

Well I look over and there is a picture hanging on the wall in which I can see the reflection of the HUGE needle just sticking out of my back. Something you’d see in a horror film.

Sorry I’ve been blabbering on, the cool part is just about to happen. The doctor screws on the syringe with cortisone in it and starts to push it in. I feel pressure but that’s about it. Then look onto the monitor screen and see the cortisone flowing up through my spine. It was the coolest thing I’ve ever seen. Even cooler than flipping upside down after drinking barium and watching it flow through your digestive track Crohnies (ha!). If you’ve ever had an upper GI you’ll know what I’m talking about.

Well, the cortisone got me to about 40% after doing pretty much no physical activity besides several visits to PT. This wasn’t exactly what I had expected but my doctor did warn me it might not work that well. I then, as you all know, had a Crohn’s flare. And for me what that means is more steroids… A few weeks after my cortisone shot I had consulted with my doctor again to get another one, which would have been my last one I could have within the year. But because of my flare I had an intense course of IV prednisone and to my surprise my doctor told me this should help my back long term even better than another cortisone shot. So, I cancelled my appointment. As my treatment went on with the IV steroids I saw a huge improvement in my back. I was even back to the gym! I know I’ve mentioned this before but I wanted to share the whole story and what perfect time other than when it’s acting up again! (sarcasm) I went to the gym earlier today and apparently worked out too hard because the back pain started up again. It started up so bad I had to take a half of a pain pill. I am thinking about scheduling an appointment for another cortisone shot but that also means time off from work and the gym. We’ll see how I feel the next week or so before I jump at that.

Also, an update on how I’m feeling. I was getting sick of this moon face from the prednisone so I figured I’d be a little bit of a rebel and weaned myself a little further than I was supposed to down on the prednisone. Of course symptoms started coming back and I had to go back up to 20mg. They’ve stopped now that I’ve stuck to the doctors orders though. Lately I have been so exhausted. This feeling is all too familiar to us Crohnies. I haven’t felt it in a while though and maybe was taking too much advantage of it or I don’t know. But I’m going back to sleeping almost 16 hours a day and having a hard time functioning normally through the day. I have to push my way through it and chose my battles wisely. If I want to go to the gym at some point during the day I have to take an extra nap at some point too. Days I work, I haven’t been able to go to the gym. I have an appointment with my GI doctor in Boston tomorrow though so I’ll talk more about it with him but I don’t think there will be a solution unfortunately. Just going to stick to my green tea and extra sleep for now. Speaking of sleep, I have to get up at a decent time tomorrow so I’m going to call it a night while this pain pill is still working and not being a pain in the ass!

Sweet dreams my fellow followers and Crohnies!

xo Michelle.

Oh, The Side Affects

Side affects, Side affects, side affects. It’s what us Crohnie’s deal with. And man, let me tell you, I am feelin’ them. I am off of my IV steroids and onto the oral. With the IV I was having serious issues sleeping, like I was the energizer bunny 24/7. It was not okay. Trazadone was my miracle drug to sleep. Hey, I love having energy, but who doesn’t want a good nights sleep? It seems though, that side affect is going away slowly now that I’ve been on PO Prednisone.

One side affect PO prednisone gives me that I absolutely DREAD, is the bloat, weight gain, and “moon face”. This is a nightmare to me. I feel crappy enough inside at times, the least this disease could ensure me is looking good on the outside! haha Don’t get me wrong, I don’t think I am fat or ugly; I still have my confidence. And I know that I notice it more than the people around me but it still affects me. When I was on prednisone for nine months I gained a lot of weight, 20 lbs on my small 5’0 frame. You all may not think that is a lot, but when it’s you it is a different story. I will be scarred for life because of an ex-boyfriends friend’s comment. I wanted to believe my moon face wasn’t as noticeable to other people as it was to me… But I was wrong. “You’re dating someone with a double chin?!” Yes, that was exactly what he said. Who would say such a thing?! What a jerk! From that day on I have been so self conscious about this. Especially now being single and if a guy comes along it’s something I constantly think about. I work out twice as hard at the gym, even though I know it is all hormonal/water weight that isn’t going to be shed until I come off of the steroids. I wake up every morning with a swollen face. It’s embarrassing. I know I’m probably making a big deal of this but it is a big deal to me, and I’m sure if it’s happened to you, you can relate.

As a Crohnie, we have to weigh the side affects with how we feel inside. Because after all, we are just treating the symptoms. I’ve been on several different medications that I’ve had to come off of because the side affects were unbearable, others just because they didn’t work. I know I have been asked about what I’ve been on in the past and how it’s worked. So this post I want to share all that information. It’s just part of the journey, we’re all guinea pigs on the path to finding a cure to this unpredictable disease.

In the first years of my battle with Crohn’s disease when I was being treated in Springfield there was a lot of medicines not yet out. I started with all oral medicine including the ones listed below, I promise you there was more but I just can’t possibly remember them all. I also have written next to them the reason or side affect for me coming off of them. I think a lot of these first medications, I was too sick for them to actually work the way they should. I was on several doses of prednisone (oral and IV) in between most of these as well.

1. Asacol– just didn’t give me any relief

2. Imuran- again, just didn’t work

3. Human Growth Hormone Injection- this was used by my endocrinologist because I was very, very tiny. But I will say it had some affect on my stomach because I felt AMAZING on it! And it helped me reach a whopping 5 feet tall! 😀

4. Remicade Infusion- I had some benefits of my stomach feeling better, but the side affects were unbearable. I basically felt like I had the flu for two months after my injection. My doctor told me I probably had some sort of drawn out allergic reaction because I’m allergic to cats and some animals and there are still traces of animal parts in the infusion. Made a little bit of sense, but I had to come off of it after two infusions.

5. Amitriptyline- My doctor put me on this because he thought I might have a component of IBS and this has been known to work really well. Well, I could write a novel about my experience with this medication. It is used primarily to treat depression but I am advising anyone who takes this to be SO SO SO careful with it. Monitor your every move and thought. I am saying this because I went through hell my senior year of high school on this. My stomach felt amazing, but my head not so much. I was deeply depressed, crazy, and suicidal. This was not the normal Michelle. I was a happy, optimistic person. I know how to deal with anxiety and depression and they were never an issue with me. I cried day in and day out on this medicine. Got in screaming fights with my mom (we never fight, we are best friends) but everyone told my mom it was “just how teenagers are”. They were so wrong. In every way possible. I really don’t think I’d be alive if it wasn’t for my mom. She has IBS and so decided to try it as well. Well, she noticed.. She started going crazy too. The same behavior. And to think people actually take this to treat what it was giving me. I was on 10mg and the normal dose for a depressed person is something crazy like 150mg. I know this is a controversial issue and I don’t mean to offend anyone but these types of medications are a lot of the cause for people’s depression and anxiety, they cause it. Moral of the story, be very careful with this stuff. It is poison to your brain.

My doctor then told me he basically had nothing left to try so we got a second opinion in Boston. My first doctor at Boston Children’s Hospital, Dr. Esser’s was great.

5. Humira- worked great Crohn’s wise… but… I was a stubborn teenager in high school and refused to keep giving myself the shot. I get poked and protted all the time I am not afraid of needles or shots but it was absolutely the most painful injection I have ever had in my whole entire life. I did try it again later but for some reason it didn’t work as good. I’m not sure if I had built up a sort of immunity to it but it didn’t show the same results as it did my first course of it.

6. Methatrexate & Cimzia- My doctor used “double therapy” on me and I was on these two drugs at the same time. I felt pretty good on this, but when he did the colonoscopy to make sure the inflammation and symptoms were going away (aka the drug was working) he didn’t like the results.  I still had a substantial amount of active disease, so on to the next one.

7. 6-MP- Well this was an interesting one. My hair started falling out.. ALOT. I went to get my hair highlighted, as I usually do. She used nothing different. Chunks of my hair started falling out.. It was terrifying. I looked up the side affects and that was one of them. I don’t recall if this drug actually worked but I came off of it as soon as possible. And thinking about it I’m guessing it didn’t have much benefit to my disease.

8. Tacrolimus (Tac)- This drug was used as a substitute basically for the prednisone, and I did show benefit from it. One side affect from it though my doctor had never heard of before me was severe bone and nerve pain. So for this I was prescribed Neurontin, which is a nerve pain medication, but I couldn’t take it because it made my head crazy. I dealt with the bone pain (he told me it may have been my bone marrow swelling) for as long as I could and I ended up having to come off of this medication anyways because it was only a short term fix.

When my doctor moved I started seeing a new doctor, Dr. Snapper, who was partly in children medicine and partly in adult. He’s great! He has also tried many medications with me.

9. Thalidomide- This drug was scary. I was still on the Tac while using this as well. I had to basically sign my life away. Not that I was planning on it but if I was to get pregnant it was basically federally mandated I get an abortion. If I was getting blood drawn or anything I had to let the phlebotomist know I was on it to make sure she wasn’t pregnant or breast feeding because it is SO harmful to an unborn child. I felt pretty good, disease wise, on this so my doctor did a colonoscopy and again wasn’t satisfied with the results. I still had a lot of active disease.

9. Tysabri Infusion- This infusion was also scary, there was a risk of developing a rare brain virus that was usually fatal. There was a blood test you got before to rule out that you would develop this rare virus, but the risk was still very real. I was willing to try anything though. Of course, just my luck.. I got every side affect besides the rare brain virus. I had a severe cold and was run down 24/7 on this medication. I could feel my immune system being completely wiped out. It was awful. My stomach did feel a little bit better but I couldn’t function day to day which wasn’t worth it. My colonoscopy also didn’t have the best results as usual.

10. Micophenolate- This just plain old didn’t work.

11. Stelara Injection- This is a new medication to the IBD world, it is usually used for Psoriasis. It is my most recent medication. The side affects I got from it were terrible cystic acne, cold/flu symptoms about a week after the injection, infections (UTIs, yeast infections, sinus infections, ear piercing infections, etc.). I tried as hard as I could to deal with the side affects until it was time for a routine colonoscopy to see if the medication was in fact giving me some improvement. My stomach felt good but to our surprise my insides didn’t reflect that.

Right now I am in a “wash out” period of the Stelara. Basically, this means I have to be off of this medication for 12 weeks before I can do the fecal transplant trial in Boston I have previously written about. All of these medications have, like I said before, been a battle between side affects and controlling my disease. Some side affects more serious than others. Several of these medications can cause serious incurable cancers. We have to have the mind-set of what it is to feel good, we have to look to the future. If a medication works for us we have to weigh how much we want to deal with. Crohn’s disease is still essentially a mystery, slowly revealing new clues. But, in the mean time while these clues and steps are being improved upon our doctors are just doing their best to control our symptoms.

While I sit here and share with you my past experience with medication I am starting to feel better about my moon face. It doesn’t seem so bad after all. If a boy doesn’t like my chubby cheeks and double chin every once in a while then he can go take a hike! HA! Well, one of my favorite shows is on now… The Bachelor. So I am going to go watch me some Juan Pablo and forget about my moon face for a little bit. Hope you all have a great night and just know you are not alone with all of this rif raf of side affects. It is just another one of the pain in the asses we Crohnie’s have to deal with, pun definitely intended.

Much love,

Moon Face Michelle 🙂