“Hey, it’s me again!” -CD

Hey! ūüôā First of all, today marks almost exactly 13 months of me having this blog! I couldn’t be happier with the outcome of it so far. I’ve talked to people all over the world through this and have met some truly amazing people.¬†This past year has been nothing but a roller coaster. It’s been calming down lately being on Entyvio, but side effects still prevail… You have to weigh though what you’re willing to go through to feel good, and compared to some of the stuff I’ve been through these side affects are pretty miniscule.

But on another note, Crohn’s never fails so remind you “Hey! I’m still here, don’t forget about me!” even when you’re at your healthiest. I’ve had a few days here and there with severe stomach pain and exhaustion. A lot of people think that just because you’re having a bout of feeling good, it¬†means your cured. Well people, there is NO cure for Crohn’s disease! I know people who don’t experience it have a hard time grasping it but it drives me crazy when someone thinks I’m cured just because I’m feeling good right now.¬†We just go into remission (sometimes clinical, sometimes you just know), and that could last weeks, months, and for the lucky ones even years. But it is so unpredictable it could come and bite you in the ass within seconds, minutes, or hours. Don’t get me wrong, overall I am still feeling pretty great, but¬†I’m starting to¬†think my body is programmed that after I feel good for a few weeks it just sends a little reminder, you’re still sick! Don’t forget! lol It’s really frigggen annoying. The other day I couldn’t eat anything without having severe abdominal pain I literally had to concentrate on breathing just to¬†get through them. They’re almost worse than the really awful flares and hospital stays because they interrupt your workout, delicious dinner, class, or whatever you’re doing just to remind you you’re not completely normal. They interrupt your times of feeling so good you almost forget the disease is even¬†there.

I haven’t been in remission in probably 10 years, and if you were to ask my doctor, looking at my latest colonoscopy,¬†I’m still not “clinically” in remission, but I have very mild active disease.¬†Now seeing it written down that sounds crazy I have been constantly battling this for ten years¬†with few to no breaks from it. I’ve been diagnosed for about thirteen years, but I definitely had it several years before my PCP just had a stick up his ass and wouldn’t give me a referral to a specialist. But, like I’ve said before having this disease has made me into who I am. And like people say some things keep you humble, this disease is definitely one of them. Each little “hello, I’m still here” puts it all in perspective. It allows me to live everyday to the fullest because it literally could be your last.

I can’t believe it’s already been a year I’ve had my blog. Thank you to everyone whose been following along and whose read some of it! And thank you to all f my fellow Crohnie’s who have supported me! ūüôā

But, it’s time to watch the Bachelor ūüėÄ I’ll catch ya all later!

-xoMichelle

The struggle of “sick season”

Prednisone was beginning to be a miracle worker, per usual. I literally felt like super woman lol It was so so soooo nice to be in the gym full force and have energy to get up in the morning and last throughout the day. Today was just one giant step backward. That is, if this is my flare breaking through the prednisone or the dreaded viruses/bugs you see this time of the year.¬†I know that it is inevitable to have days like this, but it was such a drastic change from how I was feeling.¬†That is, after I weighed myself and totally freaked out at the number 93 that popped up¬†in front of¬†my feet. I even got off and back on to make sure it wasn’t just the scale. Nope, it was the truth. I’ve lost about 7lbs in just a few days.

I’ve consistently been on 40 mg of prednisone for about two weeks now. Side affects, oh the side affects. Just noticed my face getting puffy ūüė¶ and my mood swings have been so frustrating to not only me but the people around me. It’s so strange how medication can affect your head. I am like a crazy person one minute and the next I’m in the best mood ever and I know exactly when it’s the medicine. I have tried to control it by recognizing when I get that crazy feeling (I know it sounds weird) and then taking a step backward whether that be just stop talking/doing what I’m doing¬†or explaining to the person I am being crazy towards/around the dealio. It’s hard being on prednisone around people who don’t understand how big it’s affects are lol They don’t believe it can actually make you angry, emotional, super happy, or anything. It’s hard getting anyone to understand anything about the medications we take, how we feel, etc. But all we can do is try.

Although my rapid weight loss I’m not sure if this is my Crohn’s acting up more or a bug/virus. My mom was sick last night and today and I started feeling terrible today. I still have no appetite, to the point where I need to force myself to eat. I know it’s not the healthiest thing (which drives me crazy because eating good and being fit/healthy is so important to me) but when I can’t eat I try to drink a lot of my calories whether it be 550 calorie drinks from Starbucks, juices, or even soda. I am at the point where anything I can tolerate I need to eat. If I lose anymore weight I could be looking at a hospital stay. One thing I’ve been good at this time around is staying hydrated. I cooked a bunch of food tonight thinking I’d eat more if it was already made (it works most of the time) but healthy food just rips up my stomach, ugh. It’s so frustrating. I needed to eat something desperately tonight. I had to resort to McDonald’s chicken nuggets and French fries. I still to this day have no idea how or why that is the only food I can eat when I’m really flaring up but if you have Crohn’s or colitis you know you will do or eat anything you can to keep weight on. Because losing too much weight usually, as I said earlier, results in a hospital stay.

Well I had to take a pain pill because of my stomach pain tonight -___- And it made me feel pretty weak, Weak enough to not want to keep typing lol but my stomach pain is better and I’m a little hungry so I’m gunna try to eat something. Apologies that this post was pretty damn boring but sometimes I just needa write for myself. Sweet dreams everybody ūüôā Happy Tuesday.

-xoMichelle

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

Pushing Myself to the Brink

So today was my first infusion of Entyvio. This may sound like a foreign medication to most, and well that’s because it is. It has only been FDA approved since May and then came out in June. I knew this day was going to come that I’d start on my last option (for now), but I just wasn’t sure when. Starting a new medication for me is not exactly a new thing. I have been on almost everything in the book as you all may know from my previous posts. This medicine is a lot like Tysabri (which is a bit more popular, used for CD, UC, and MS) except it doesn’t seem to have the side affects that Tysabri hentyvioas, especially the PML virus which is scary as hell, look it up. When my doctor told me that it was relatively low risk and an infusion once every six weeks I was in! I’m always excited to start on a new medication because it kind of gives me¬†a new light on things, “maybe this will work” goes through my head every time. But this was a little bit different.

I am having so much more pain than normal. I’ve been on prednisone for a week now and usually I am eating the whole household and feeling like a million bucks. Not this time, something is different… I was keeling over with pain this past Sunday and had to resort to pain medication, which I hate to admit. I hate the thought of having to take pain medication, I can usually silently manage my pain and most of the time the people around me wouldn’t even know. Not lately, it’s been pretty unmanageable pain. And the worst part about it is I’m having flank pain too¬†as they call it… Aka possible kidney stones. Wonderful.

I can literally feel my insides swelling. I’m not talking bloating I’m talking tissue swelling. It sounds gross but it’s pretty damn uncomfortable. I eat and I swell. It’s been off and on but also been making me¬†a little nervous that something else is going on. Hopefully not but we’ll give it a little while for this prednisone to work some more and then figure it out.

This all makes me nervous because I am finally ready to grind down and go back to school full force this fall. I have my classes set-up and start next Tuesday towards applying to the nursing program this coming spring. This weekend is also my 22nd birthday and I was hoping to get out and have some fun! I probably will, becIMG_8188ause that’s what I do.. I push myself even when I don’t feel good. Sometimes probably a little too hard but oh well. Like I say “it’s my life, let me live it”. It’s actually KILLING me right now to be sitting in bed exhausted and in pain because I bought some new Nike sneakers and gym clothes today on my way home from my appointment and all I want do is try them out! Lately going to the gym has been the only thing mentally keeping me going. It’s my happy place to feel good about myself and blow off some steam. Even if that only means speed walking on the treadmill and lifting 5 lb. weights¬†(when I’m having an off day physically). Actually I might do that later tonight. Hopefully I’ll be feeling a little bit better after a nap.

It’s frustrating having to be cooped up. I mean I don’t have to be but my body just reaches it’s limit sometimes and I have to take a step back. I’m not sure if lack of sleep because of prednisone¬†or the new medication¬†that¬†did it to me today but I can barely function right now and these hot flashes (prednisone side affect) are god awful. Today I wanted to make it a fun day in Boston with my mom after my appointment but prednisonemy body was telling me otherwise. We headed to the Wrentham Outlets after I was done with the infusion and it lasted about an hour. I was so fatigued,¬†nauseated, and¬†swollen¬†we had to leave. Not to mention my extremely crabby attitude and mood swings (also due to prednisone) didn’t exactly make for a fun time.

Now, this is all just a waiting game. Pushing through each day while I wait for my body to hopefully react in a positive way to Entyvio. I have another dose in two weeks, then four weeks, and from then on every six weeks. My doctor told me it could be up to three months to see how much it is potentially going to work. I’ve decided though, unless I am in the hospital I am not going to let it keep me from school this time. I will not withdraw this semester, actually even if I am in the hospital, I will do whatever I can to keep at it. I need to, for my own mental well-being.

Having an invisible disease is wearing on the mind. Very wearing. People assume because you look good and push yourself that you’re fine. I don’t blame them because how would they know unless they’ve experienced it? Sometimes¬†though¬†I just want to have them walk one day in one of our [Crohnie’s] shoes. It would probably change their life, actually not probably, it would change their life.

-xoMichelle

 

 

I’m backkkk, sort of.

Well I’ve been M.I.A. for a while now. I apologize for that.¬†My life has been anything but exciting and I have had a lot of other stuff on my mind, i.e.¬†school, work, what I’m going to do with my future… I will tell you, I¬†have never been happier to see this box and syringe in my life. ImageOkay, now I’m just sounding like a druggie (lol). consuming.¬†But this is probably one of the most confident decisions I’ve made so far.¬†I think I told you all I didn’t go through with the fecal transplant trial, there just wasn’t enough information for me… Hense, the word “trial”. Well before when¬†I was on Stelara which is also sort of an experimental¬†medication for Crohn’s, although is approved by the FDA, I felt amazing. And when I say amazing, I had so much energy, ate like a pig, and was loving life. It was great. So, after my washout period awaiting the trial, I thought back to when I was feeling good and wondered why in God’s name did I ever stop taking that wonderful drug. The answer was: the results of my colonoscopy and my doctor’s better judgement of what my insides appeared to look like compared to my¬†outsides (typical).¬†So yada yadaaaa he made me come off of this. Same old; on to the next one. After my decision to not undergo the trial I basically demanded to be put back on Stelara. Although I put 100% trust in my doctor, I know my body better than anyone else I don’t care how much education you’ve had. I’ve learned so much over the years and with this disease you NEED to know your body. And for all of you newly diagnosed, you will know exactly what I’m talking about a few years from now. Trust me. I’m kind of babbling on, sorry. But anyways, a month into Stelara I’m definitely feeling better but I still get that urge to go to the bathroom and there’s a few other things I’d actually like all you Crohnies opinions on. Here’s a few questions for all y’allllll…

Sometimes I just get wicked hot and feverish. It’s not a hot flash (believe me I’ve experienced those while on prednisone) but it’s more like sweaty and I feel like I have a fever. But, to make it clear I never show a fever.¬†I’ve had people tell me it’s because of being on an immunosuppressant but I’m not sure.. Do any of you experience this?

Also, I work really hard on my body and staying fit. I eat very healthy 95% of the time yet I cannot seem to get rid of my bloat in my stomach. People¬†tell me I’m crazy and I do not look bloated but I can feel it and sometimes I do look 5 months pregnant, scary I know.¬†It mostly comes about when I’m not feeling too well. I’ve taken gas-x and all of those gas relieving OTC meds but I don’t think it’s that. I drink plenty of fluids too. I’ve heard though that Crohn’s patients tend to have a little “pouch” or their abdomen area appear to be swollen. It’s frustrating because I know it’s not “weight” and I just want to know what it is! GAHH. So I guess my question is have any of you heard of this or experienced this? Any suggestions or anything would be helpful!

Despite all that. As my friends and peers have been looking forward to this time in their life, I have been dreading it. College graduation time. The reason why is because my damn stomach has let me barely make it through each semester at a time. Granted these past few years have been the absolute hardest trying to control my disease but I look back and wish I had just pushed myself through it all. That’s kind of a stupid thought because at the time, sitting in the hospital bed every few months it was kind of beyond my control. And it’s not about having the “college experience”. It’s about the future, and what it has to hold for me. At this point… It’s not too much. I especially dread it when people ask what I’m going to school for or any of those “what my future holds” kind of things. I never know what to say and am frankly kind of embarrassed. I’m not complaining, I guess I’m just wishing I could be wearing a cap and gown these few weekends like all of my friends are.

Looking at the other end of it all I am actually really excited because I’m finally going back to school in the fall. Hoping this Stelara works and I have no more surprise hospitalizations coming up. I am very impatient when it comes to this stuff. I want to get it done now and make a life for myself. Not rushing my life away by any means, but I just know what I want for my future. Not only job wise, but just¬†my expectations for life, happiness, and everything in general.¬†I keep trying to tell myself it’s going to happen soon enough, and I know it will. I will figure it out. I truly believe and I know I’ve told you guys a thousand times over everything happens for a reason. I’ve been trying to live like it’s my last day. Clich√© and a little corny, I know, but it’s so true. You never know. You could get in a car accident or be handed something life changing, or for all we know the world could end. Ha, at the rate we’re going robots are going to take over with all this damn technology. Don’t you just wish sometimes you could go back to the time when you actually had to, god forbid, call someone and TALK to them on the phone instead of just text or email. It’s gotten kind of ridiculous in my opinion. I get kind of side tracked in these, oops.

Well despite all of the wondering, stressing, and overthinking my life is Imagepretty good. I can’t really complain. I’m feeling better than I was before and things are looking up. And this weather!!!! It needs to be summer now and then I’ll be happy as a clam ūüôā

Side note: I can’t believe people actually come on here and read about my fascinating life (sarcasm) haha. I mean I like to think I’m pretty cool but thanks for planting the thought deeper in my mind ūüėČ bahah

Hope you all have a good night, I’m done babbling on for now. It was nice to get on here and write a little bit again. Sweet dreams!

-xo Michelle

 

 

 

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

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! ūüėÄ

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 ūüôā