Thursday, July 14, 2016

I got a new Baby Niece today!

Yesterday made me forget about my Crohns for a little while because I was distracted by the birth of my new niece Harper Rose! She's so beautiful and I'm so happy for my sister and her fiancΓ©. 
This is my 5th niece/nephew so it's nothing new but with each birth my family grows and its special every time. I'm so glad my sister and the baby are doing OK and everything went well. Days like today make me so happy that I keep fighting my battle with Crohns and never give up. One day I want to have children of my own and a family of my own but I have to take care of myself first before that can happen. I don't think I could raise a child right now as I can barely take care of myself most days. Crohns just kicks your ass every single day but we have to keep getting up and fighting back and hoping for the day that cure will come. 
There's so many bad days that I have with my Crohns and I feel like giving up and not getting out of bed. Then there days like today that make me realize the fight is so worth it. 

Keep fighting and don't give up!


Entyvio Infusion #4

Hey guys I'm baaaaaack again. So on Tuesday I received my 4th infusion of the newest drug for Crohns/Colitis called Entyvio. Once again the IV sucked and my hand has been bruised and in pain since the infusion. IVs are annoying as hell and I'm sick of them but what can ya do. So far still no noticeable changes other than keeping weight on that I gained after my first infusion. I still have around 8 trips to the bathroom almost everyday, some days it's less and some days it's more depending on what I eat. But with Crohns you never know, one day I can eat one thing and I'll be fine and the next day I'll eat the EXACT same thing and I definitely will not be fine and I'll be in the bathroom all day. 

I was very hesitant to try this new drug after being off almost any kind of medicine for my Crohns for over 5 years. The side effects of meds like Entyvio are super scary and the one that made me the most hesitant was the rare brain infection that can possibly happen with Entyvio, where you can become disabled or possibly die because of it. No one can blame a person for being hesitant of trying meds with side effects this serious. But after 5 years of my Crohns being left untreated I said "Fuck it!" and decided to give it a go. So far I haven't got the results I was hoping for but at least I put on 15-20lbs after starting Entyvio. Before starting it was impossible to gain weight no matter what I did so I'm thankful for that. 

Going through what we go through sucks and no one should have to live life like we do. Crohns/Colitis fucking suck and I hope they find a cure soon. Keep fighting the good fight people and don't ever give up. One day we'll have a day! 

Get Well Peeps 


Sunday, June 26, 2016

Insomnia and Crohns

So for the past 2 years I've had so much trouble sleeping. I didn't think anything could be worse than having Crohns Disease but this one I'm pretty sure trumps it. Insomnia mentally and physically fucks with you as does Crohns but having both!!? Come on man! Let me catch a break. 
I've been struggling with getting any sort of sleep for so long it's just normal to me now. Last night I finally fell asleep at 7:30am! Yes, u read that correct AM! Tonight it's already almost 2am and I'm in for another long night it seems. Yes I know being on my phone definitely doesn't help and will make falling asleep harder but believe me I've tried almost everything. Everything u could possibly try, trust me I've googled everything and tried it. I've chugged Zzzzzqil, NyQuil, I've tried Unisom, every sort of sleepy tea imaginable, melatonin, lavender smelling shit, hypnosis videos and tapes, I could go on forever. 

Not sleeping makes u insane! I wouldn't wish it on my worst enemy. Yes I know I'm bitching a lot but I can't help it and that what my blog is for....for me to get out my feelings, vent and let people know that they aren't alone. 
There are things that help me fall asleep but require prescriptions and are all habit forming besides weed. I've never been a smoker of weed EVER! I hate the smell and the taste but I was desperate to try anything. 

I finally had had enough of not sleeping and I wanted to try a natural remedy rather than the prescription drugs the docs were throwing at me. So me and my sister went to Colorado stocked me up on different strains to try and came back home. Like I said, I've never been a smoker and have never liked it, after trying the stuff from Denver I still don't like it but it does help with my insomnia!

 It all started off with RLS(restless leg syndrome). If you haven't experienced this, you are one lucky son of a bitch because it's miserable! It feels like your legs constantly need to be moving and need to be stretched out. But no matter how much you move or stretch nothing is enough! I feel like I want to pull my legs off sometimes! It drives so so INSANE! I became mentally unstable one night and immediately went to the doctors the next morning after not falling asleep not even for one minute the night before. The doctor ended up prescribing Ropinerole and it's a life saving drug for me! It worked to stop my crazy legs but not to help me sleep which was a victory at the time. 
The strains of weed I bought in Denver were Indica strains and were the kinds that were more for sleep, relaxation and pain. I'm all for medical marijuana and believe that it should be legalized nationwide and regulated just as alcohol is. I do hate the high, and don't think I'll ever like it. But like I said I bought the Indica strains that are more for a "body high" and not a "head high". I've smoked a few times and tried edibles a few times since returning from Denver and have had some success with treating my insomnia. It makes me eat A LOT more than I usually would which is excellent considering I'm underweight as a lot of Crohns patients are! One time I smoked and ate 12 donuts in one sitting! πŸ˜‚πŸ˜‚πŸ˜‚πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©πŸ©
It helps with my pain and insomnia also! Within 10 minutes I'm sleepy enough to fall asleep and not fight it or go crazy trying to sleep. 

Other than success with weed I've had some success with Ambien but I wouldn't recommend it. It's a scary drug and is super addictive! I don't remember doing some things at night after taking ambien as a lot of other ppl have also reported after taking the drug. I have two scars from falling after taking ambien and not remembering how it happened along with waking up to food I cooked that I don't remember cooking. 

My pain medications if taken in higher doses almost always do the trick but it is HIGHLY discouraged to take them for sleep as they are for pain and very ADDICTIVE! Pain pills are amazing drugs but can also be a demon for me. I've struggled with taking them bc I've been on them so long that I've grown a tolerance and small addiction to them. Withdrawl symptoms are the worst thing EVER! That's why I'd rather stay away from them as much as I can. The most recent drug my doc has me trying is Ativan which is an anxiety med that can help some ppl relax and sleep too. I've had some success with this med but have only taken it a few times as this is also a very addictive drug! Why are all the drugs that help me fall asleep all bad for me and so addictive!? Such a bummer. So as much as I dislike the taste and smell of weed I'd highly recommend it if you're struggling with sleeping. Trust me. Crohns is bad enough, we don't need insomnia as well. 

Wishing you all a good night sleep! 


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Saturday, June 25, 2016

3rd Entyvio Infusion

Once again I'm slacking on this whole blogging thing, but what can I say.....I have an exhausting disease. Most people would think that typing up a post once every day or even once every week would be a piece of cake.....heck even I thought that before starting one, but I'm not a normal person. I have an autoimmune disease and as most people with these diseases come to know, that even the smallest of tasks become so exhausting both mentally and physically. But here I am, I found some strength to type up a post tonight, it's a rare occurrence that I'd like to see happen more often. 

So on to my Entyvio...about a month ago around May 17th I received my 3rd infusion of my new drug to treat my Crohns Disease called Entyvio. It's pretty much the last conventional med for me to try to control my Crohns with bc all else have failed miserably. I haven't hit the 6th month mark yet to where my doc says that is when the med seems to start working for the majority it does end up working for. I'm still hoping and praying that this med is the one that does the trick. The infusion went well and once again they gave me some iron in my infusion as well bc my hemoglobin is still so low. 
☝🏻️☝🏻☝🏻there's my routine infusion selfie
After all the countless meds I've tried from all the pills to Remicade to Humira nothing has given me any results...ZERO, but so far with Entyvio I've at least seen weight gain. In my 7 years of dealing with this horrible disease I've never gained a significant amount of weight other than when they had to put a PICC line in because I was at a dangerous weight. I'm 6'6" and at my lowest weight I was 140lbs. A PICC line was put in at that point and for a year I stayed steady between 155-160lbs. After removing the line I remained at this weight for a few years. Since starting Entyvio I've gained 20lbs and am now weighing between 175-180lbs, the HIGHEST since being diagnosed! (205lb was my heaviest weight) 
Other than gaining weight I've seen an increase in energy and my hemoglobin has gone up and stayed up(still low for a "healthy" person but up for me). Although my bathroom trips haven't decreased nor has my urgency, I'm encouraged that I've seen some improvement in other areas as I haven't had any improvement on any other meds. I remain hopeful that I continue to see results with Entyvio! 

Gotta include a pic of the girl that keeps a smile on my face....πŸ˜„

Keep your heads up! 


Wednesday, May 4, 2016

Entyvio....crossing my fingers

Wow! I can't believe it's been so long since my last blog. I told myself when I started this blog that I'd do it at least once a week but it just so happens that when you have an autoimmune disease like Crohns/Colitis even using your fingers to type a simple short blog can seem exhausting. So BIG NEWS (for me at least)! I haven't been on any medication for my Crohns/Colitis in over 3 years due to me being stubborn and also scared (rightfully so) of trying these crazy ass meds with all these crazy side effects. My Crohns/Colitis has not gotten any worse untreated over the years but it also hasn't gotten any better. 

I'm seeing a new GI Doctor at UNMC and together we decided that after years of my disease being left untreated, I would start a new med called Entyvio. After about a month of bullshit fighting with my insurance company to approve me for this med they finally caved. They fought me tooth and nail to approve me probably bc this medication is RIDICULOUSLY EXPENSIVE! I wouldn't want to cover it either. πŸ˜‚  This med you receive in infusions that take a half hour each time. At the beginning you get an infusion at week 0 then at week 2 you get your second infusion and then at week 6 you get your third and after your 3rd infusion you only have to get them every 4 weeks. 

So on April 5th I received my first infusion of Entyvio. 
My first infusion only took 30 minutes plus an additional 30 minutes for observation to make sure I didn't have any bad reactions to the new med. With the infusion I also receive iron because I'm so anemic. I didn't feel any side effects until about 2 hours after the infusion. I was extremely tired, had night sweats and headaches all night long. The only good thing is that I was already expecting some side effects bc of past experiences of all the shitty meds I've tried in the past and all their shitty side effects. 

My doctor told me to be very patient with this new med and not to get discouraged bc it can take up to 6 months for some people to see a change. On April 19th exactly 2 weeks after my first infusion I had my 2nd. 
πŸ€”πŸ€”πŸ€”πŸ€”☝🏻️☝🏻☝🏻☝🏻☝🏻 That's my Instagram (gobobogo24) so feel free to follow me, message me or whatever you'd like. 

Yes I know I look very excited to be getting this new med! πŸ˜‚ but on the inside I really am glad I'm back on some sort of medication bc some people will never get the chance bc of insurance and other unfortunate circumstances. 

Autoimmune diseases FUCKING SUCK! 
Yea I did curse but this isn't a PG blog and I am nowhere near close to having a PG mouth so sorry but not sorry about my occasional bad mouth. 🀐 

Fuck Crohns/Colitis 
Stay Strong and Keep Fighting People!


Thursday, January 14, 2016

Oh...Arthritis.....What's Your Kryptonite!?

I wrote this in February but never posted......

Along with the much talked about "shitty" symptoms that Crohn's/Colitis patients suffer from, come along the not so much talked about symptoms that some people don't know we also suffer from. One of my main symptoms that isn't talked about much is arthritis. I'm bringing this up as the topic today because as I type this (my fingers aching) I'm suffering an immense amount of pain lately. Living in Nebraska the weather can get pretty cold during the winters and we're right in the smack dab middle of it, with snow on the ground and freezing temperatures. It always seems as the temperatures drop, my pain from arthritis rises. 

While almost every joint in my body seems to suffer from arthritis, today my wrists and fingers seem to be the "winners". Barely any pressure or movement comes with sharp pains. This arthritis was the worst pain I've ever been in in my entire life. Moving just the slightest bit made my nerves shoot the most intense pain I've ever felt. I've been to a rheumatologist and he diagnosed me with "migratory arthritis". His solution was to put me on prednisone and pain meds (tramadol and hydrocodone).

After agonizing pain for months and weeks at a time of missed work from the horrible arthritis I decided to take a different approach. I began googling alternatives that I could try for this horrible case of arthritis I had been experiencing. After reading through all the bullshit "miracle" cures online I finally stumbled across a few articles on acupuncture and arthritis. The next day I called and made an appointment with a Chinese Medicine Doctor who specialized in acupuncture. 

I was VERY hesitant going into my first appointment. I thought no way in HELL that acupuncture was the answer to my prayers of getting rid of this immense pain. At the time I could barely fingers, feet, knees and hands were swollen and my back shot intense pain with every step I took. I'm a pretty tough guy when it comes to pain as are most all Crohns/Colitis patients. πŸ’ͺ🏻 We deal with so much pain that others could never handle but this kind of pain was nothing I'd ever experienced before. This arthritis was my kryptonite. I was almost in tears with every move I made. I gave acupuncture a try with much hesitation and doubt. It wasn't the cheapest but IT. WAS. WORTH. IT!!!
Oh my Lordy, after hobbling into his office for my first visit I was hurting so bad still but after 2 days almost all my pain was gone. After 3 appointments I honest to God have had ZERO problems with arthritis. So if you're thinking about trying acupuncture or looking for something to try I HIGHLY suggest trying it. I was SO  skeptical before my first appointment but now I swear on it. Best thing I've taken a risk on. I thought acupuncture was a waste of people's money but little did I know it was my answer all along to stopping my pain. 
I had to end this post with a picture of my best friend that I can finally take on walks again bc I'm pain free from arthritis! I'm SO much HAPPIER to be living life with no pain from arthritis! Now only if I could get my Crohns/Colitis in check! I guess one thing at a time.....

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Thursday, January 7, 2016

Iron Infusion Today. Woot woot.

So in a previous post I mentioned my hemoglobin was extremely low. The normal level for an adult male should fall between 13.5-17.5, well mine has been consistently low ever since I was diagnosed with Crohn's disease 8 years ago. Currently it's at the lowest it's ever been at 6.9. So I have about LESS THAN HALF of what a "normal person" is suppose to have in their body. 

Since my hemoglobin is so dangerously low my doctor was shocked that I was even standing without fainting. My skin is always white as a ghost and it's currently the whitest it's ever been. I HATE being this sick! It's so frustrating and there's nothing I can do which is the worst part. I can handle the bathroom trips, the arthritis, the headaches, the sleeping problems, the stomach pains and all the other symptoms that come along with Crohn's but low blood levels seem to be my "kryptonite". 

Having such low blood levels takes SO MUCH out of me. I'm extremely tired which is normal with people with Crohn's but this kind of fatigue is on a totally different level. I have been out of work for the past 15 days because my doctor told me that I shouldn't return to work until my blood levels get back to somewhat normal. He gave me a note saying "return to work to be determined". 

So today as I'm writing this I'm sitting in the infusion center at the hospital getting an iron infusion. Yes another stupid IV! That makes 2 in less than 3 days. NOT FUN! 

This isn't my first go around with iron infusions. A couple years ago I was a pretty regular patient here, I would get an infusion every 2 weeks for 3 months. So this is nothing new to me but that doesn't make it any more fun for me to be here again. If anything it makes me that much more annoyed. As I sit here listening to the bag of iron drip I just think when am I going to be normal? When will there be a cure? When will I get to be genuinely happy again? I just want to sleep ALL THE TIME! 

But then I could be worse, it could always be worse. So I try and stay as positive as I can and put on my best smile. I keep telling myself I can get through this and I'll feel better soon. I am strong enough to handle this. I'm going on 9 years with this disease and I don't plan on giving up anytime soon. 
On a positive note, I did get a PB&J sandwich, orange sherbet and a Pepsi while getting this infusion. All of which were very good, that's a miracle because hospital food always SUCKS! But I don't think it's possible to screw up a PB&J, pre-made sherbet or canned Pepsi! Lol

It's been a rough day and as many of you with Crohn's/Colitis know there have been plenty of these days in our past and there are many more of these days to come. Keep on fighting and stay strong! One day....

Peace out people,