It's Erina

Creating a journey as a Chrons warrior by documenting thoughts and experiences as a Chrons Disease warrior.

[itsrien11]

2 years since diagnosis

Today marks my 2nd year of being treated for Chron’s Disease. The road has been long and hard. There have been so many up hills, tears, pain and suffering. But it is all worth it in the end. Let me explain why:

As I ave explained in my previous posts, every treatment is different when it comes to Chron’s disease. There is no ONE pill or treatment that can just fix it. It takes numerous tries and pills and side effects to find what works best with your body. I am one of the lucky few that has finally found what works for me and I am so grateful.

My treatment consists of daily Chemo therapy tablets, chronic pain medication, calcium tablets and tablets that line my stomach. I have come in to a very good routine where I take my daily pills at a certain time and I never forget. It has become part of me. I have accepted the fact that it will always be part of me and I am happy with that because it means that I can live a partially normal life.

The negative of my 2 year mark

I have had some troubles with my treatment in the last few months when it comes to side effects. Because I do not have an immune system, my body cannot fight off any germs that I come in contact with. So I get ill very easily, I get bruises easily and I heal very slowly. Aside from those side effects, my skin has taken a big toll. My face in particular. I have never had skin problems so this is a but hard for me. After visits to a dermatologist I am now on a whole list of skin treatments to help my skin become what it was again. I struggle with acne because my body cannot fight off the dirt that goes in to my pores and therefore creates acne. Aside from my skin problems I have had a few other side effects but they have become the norm for me and I think I handle them very well. A few flare ups here and there is bliss compared to where I was 2 years ago.

The positive of my 2 year mark

Aside from all the negative side effects that have been getting me down, this part of my story is what keeps me going. If I look back at where I was 2 years ago, I can only be grateful for where I am now. I was in so much pain and I just wanted to sleep because I didn't feel anything if I was asleep. Of course I still have pain every single day of my life but my body has become used to it, I have learned to function with an amount of pain that a lot of people cannot comprehend. But here I am, living life and being thankful every day that I have managed to work my way through this hard time in my life. I now am able to lead a semi normal life, do what I want to do and not have to be curled up in a ball in bed all the time. So a few side effects here and there is nothing to me, if it means that I am able to live my life.

Conclusion

I have listed both negative an positive things about my 2 year mark and I often weigh them against one another, but the positive always comes to light because a few up hills here and there is worth it, if it means that I can have my life back.I will never be able to live a Chron’s free life, but thanks to my amazing team of Doctors, my family and my friends - I CAN FINALLY SAY THAT I AM A CHRON’S WARRIOR- and I have the scars to prove it!

For all the Chron’s warriors out there

H.O.P.E. HOLD ON PAIN ENDS - never ever give up because you are a warrior and you have been dealt this card because you have the capacity to beat the dealer #chron’swarrior

[itsrien11]

One year #warrior

I haven't blogged in a very long time. That is partly because of pure laziness and partly being distracted. I have decided to update my blog and keep it updated from now on. As posted before, this blog is to inform those who don’t know about Chron’s and what the life of someone who has it looks like. I also post to help those who have Chron’s and let them know that they are not alone and there is hope.

It has been a little more than a year since I was diagnosed with Chron’s disease and it has been one hell of a journey. It has been a mixture of laughter, tears, screams, pain, medication, side effects and hope. I never thought that I would be able to sit here and say that I have hope and I feel great. I wont lie, there are still those days where the Chron’s still reminds me that she is still there but there has been fewer of those as time goes by. 

I was diagnosed in February 2017 and began treatment as soon as possible. I started on Azathiopene, steroids, amatriptelene and calcium. It was a horrible trial run to see what treatment would work for me. The steroids at least helped get my stomach back on track but the side effects really had me down. From constantly being nauseas and vomiting, to losing more than 10kgs, to constant headaches and sever fatigue, it really hit me hard but I had to see the positive that this is going to help me in the end. After 4 months of my first trial treatment my doctor decided to change my treatment because the side effects became too much for me to handle.

In June 2017 I started my second trial treatment and I am very happy to say that it is one that has worked for me and I am currently still on it. Though it is a more aggressive treatment, with a lot of risk factors, it has gotten my Chron’s under control and I have only had one or two flare ups since. My current treatment consists of a light dosage of Purithenol (Chemo therapy and immunosuppressants), amatriptelene, calcium and prazoloc. Some of the side effects are major risk factors but I am prepared to deal with them if it means that I can at least have a half normal life. As part of the Chemo therapy treatment I have gotten side effects such as skin problems and the risk of skin cancer if I get sun burned. Another big effect this has is that I do not have an immune system but this is what needs to be done in order for my Chron’s to be treated. Some side effects that have gotten me under also include sever fatigue (I sleep for more than 12 hours a day) and weight loss.

It is hard to deal with all of these side effects especially knowing that I have no immune system and I have to be very careful when it comes to getting ill, cuts or bruises. But all of those aside, I am very happy with this treatment and I can honestly say that I would rather deal with these side effects if it means that I can have the Chron’s under control, at least for a while.

A year later, I sit here and I can honestly say that I am so much happier with my health than what I was a year ago. I have the best doctor and medical team behind me and my support system at home is even bigger. 

If I can give anyone who has been diagnosed any advice please read this and believe me when I say: It seems like your world has fallen apart and it seems like this is a life sentence right now. It is going to be a very hard road ahead to get the right course of treatment for you and you are going to have to be strong and fight for yourself. But it does get better. I never thought it will, I had these exact thoughts a year ago. But here I sit and I can honestly say that if you work with your medical team and if you stay strong and positive then it will get better. It wont go away, it never will, but it will get better and there is hope. If you get knocked down 10 times, get up 11 times, smile and kick some Chron’s ass because this is not the end, it is the beginning of hope.

Yours sincerely

Chron’s warrior.

[itsrien11]

15 Things not to say to someone with Chron’s Disease.

Some things I, as a Chron’s Disease warrior, am tired of hearing and it is not that I am being bitchy or ungrateful for those who care for me, it is that I want you to know and understand what I feel when I hear these things. As I mentioned in my previous post, this is to inform others that dont have Chron’s what I am going through and also to let those with Chron’s know that they are not the only ones who feel like this.

1) You lost so much weight, I wish I could do that. Chances are that you would also lose weight if you were constantly running to the nearest toilet as soon as you have eaten. I didn’t lose weight because I wanted to, I lost weight because I am on 5 different medications that have the same side effects.It is scary losing 10kgs or more in less than 6 months because of Chron’s, it is not something that you want to do willingly because chances are that I will still keep losing weight,which is unhealthy.

2) You should get out more. If I could, I would. But mostly I am in so much pain that it is an accomplishment to just get out of bed at any time of the day, so I dont really want to ‘get out more’ because that would require me actually having to move. I have days where iI want to go out and enjoy myself but dont push me, when I feel that I can handle the pain and that I will be comfortable going out, I will do so.

3) You should see a dietitian. I am my dietitan. The thing about Chron’s is that it is not the same for everyone. I might be able to eat bread but another person with Chron’s cant. So a dietitian wont be able to help me because they dont know my body. I know what I can eat and what I cant eat and I really dont need to be told by someone else what is good and not good. If I find something that works with my system, I eat it and if it doesn’t, I avoid it. So thank you for your concern but I dont need to see a dietitian.

4) Mind over matter. If it was that simple, I wouldnt be writing this blog. It is easy for someone who doesnt have Chron’s to say mind over matter. Everyone thinks that if you dont think about the pain, that it will go away, the sad truth is, that it is never that way. If I want to mope around all day in a blanket and watch movies all day, it is because I am in so much pain that I can barely function. So let me deal with my pain like I want to and just be there to support me, dont tell me that it is mind over matter.

5) You need to exercise more. Isnt that the case in everyone’s lives though? So why should it be different for me just becasue I have Chron’s? I do exercise, when my body tells me that it can handle it. But mostly, I dont, because it hurts too much or because I physically do not have the energy and that is probably because I haven’t slept all night because I have been tossing and turning to get comfortable with the pain.

6) Have you tried herbal treatment? I have tried everything that this planet has to offer. Your home remedies or herbal methods really wont make any difference. I know medication always is harmful to your body but I trust my doctor enough to know that he will take care of me. The treatment I am on is working for me and that is all that I care about. Thank you for your suggestion but I will stick with what I know works.

7) You are so moody today. Would you not be moody if you were me? Of course I have my happy days but when I am moody please understand why. It is because I am dealing with pain that no one can imagine and I am trying to keep myself together and not lose my shit (excuse the pun). So I am very sorry that I am ruining your happy bubble with my moodiness but this piercing pain in my body seems to have stolen all my happy today. Maybe tomorrow my happy face will come visit.

8) How are you feeling? I know you just care and want to know how I am coping, but for the love of hell, do you really want to hear my 50 point list of complaints every day? I will probably just say I am fine or say I am not too well today but I really am not going to get in to all my aches and pains every second of the day. Ask how I am feeling but just let me answer in a simple manner.

9) You look better today. Maybe I am and maybe I am not. But I am probably not. So if I look better than I did the day before it is probably because I put on an extra layer of make up to hide the dark circles or because I took some painkillers that are making me pretty happy at that moment. The worst thing to hear that is you look better than the day before and to be honest there is no real reason for that but it is just simply because I probably am not better.

10) My brother's friend’s sister’s boyfriend has Chrons and he [enter some random cure or diet here] why dont you try it? As I said before, Chron’s is not the same for every person so your brother’s friend’s sister’s boyfriend might have found what works for him, but chances are that it wont work for me. So thank you for your advice but I will stick to my plan.

11) But you dont look sick. That is the most common thing that I have ever heard. It is like saying to someone who is gay that they dont look gay. I am sorry I didnt wear my I have Chron’s badge today, I will be sure to put it on tomorrow. Just because I look happy and I am living my normal life, doesnt mean that I am not sick. I want to be normal and I want to be happy, so when you see me in that moment, let me be. I probably am still feeling like total and utter crap but I decided to live my life anyway. You cant see Chron’s Disease on the outside so please dont tell me that I dont look sick.

12) You should get out of the house. Trust me I try. When I feel like I have the energy I take that opportunity to do things that I normally dont do. But I also have my phases (which sometimes lasts up to a week) where I just want to stay in bed or at home and rest because that is what my body is telling me to do. I know myself and my body and I know when it needs rest, so please dont force me.

14) Are you going to cancel on me again? I am sorry I cancel plans at the last minute but that is what Chron’s is like. I might make plans with you for the next day and then cancel the last minute, I dont mean to but I also cant help it. Chron’s is very unpredictable, one minute I can be fine and the next I am not. So I am sorry that I could make your dinner party and I really am also not sorry because I am looking after myself and if you cant understand that, then I am here to help you understand. When I cancel it is not because I am lazy but it is because I am in so much pain that I just want to lay in bed and sleep it off.

15) That’s not good for you. I am tired of being told whats not good for me or who can be around me. I am tired of being treated like I am breakable. I am not. I know people care and I know they dont know how to deal with Chron’s, well shocker, neither do I. But one thing I know is myself and my body and that is why I am tired of being told what is not good for me. If I say that it is ok for me to hang out with you because you have flu, then it really is or if I say that it is ok for me to go rock climbing, then in really is or if I say that it is ok for me to spend the night dancing at the club, guess what, IT REALLY IS. Thank you for your concern but please dont tell me what to do.

One thing I learned from Chron’s is that you cant sit around and watch your life pass by. Spend nights laughing till early morning with your friends, go zip lining, go see that movie you planned to go see, go swim in the ocean, because who knows when you wont be able to do those things anymore. Yes I have Chron’s and yes it is hard for me and everyone around me but let me be myself and make my 20′s count.

[autumnsoldier13]

REBLOG if you have ulcerative colitis or chrons disease

I’m curious as to how many people are in my boat.

[itsrien11]

Introducing the warrior within.

Hold On Pain Ends

I have created this blog with the intention to share my experience with Chrons disease. I want to let people know what it is like having to live with a disease that has no cure and I want to raise awareness so that other people with Chrons know that they are not alone and there are people out there, all over the world who you can talk to and who can you help you through this.

A little about Chrons Disease

I am going to simplify it so that it makes sense otherwise I would be here all day trying to get through all the terminology. Chrons Disease is an auto-immune disease. So this means that my immune system is attacking itself. With Chrons in particular, this means that it attacks the bowels, and in my case, specifically the ilium. The ilium is located at the bottom of your intestines on the right. I wont get it to gross details about I go my bowel movements but this basically means that my bowel functions are all messed up. It means that I visit the toilet at least 4 times a day and I cant eat anything I want. I have been like this since I was about 6 years old, but the doctors blamed it on IBS and said it is because of stress that I had for various reasons since I was small. Now we know that all of this was actually Chrons. 

Treating Chrons

Chrons is incurable. No one can fix and and no one can take it away, it is with you for the rest of your life. If Chrons goes untreated you can eventually end up with no intestines and you would have to wear a little bag on the outside of your tummy. I am very lucky to have an amazing doctor. He is doing all he can to make sure that I dont have to get any surgery while I am still young. I have been diagnosed in the beginning of the year with Chrons and ever since we have been trying to see what treatment works best for me. There are so many options but not every treatment works the same for everyone. So it is basically trial and error until you find what works for you. I am currently on a treatment that consists of light Chemo therapy (immunosuppresants), Steroids, Calcium, long-term painkillers and stomach lining medication. So this basically means that my bowel movements have now regulated and my pain is less BUT there are some serous side effects that goes with this, I list a few: I have no immune system so I can get ill very easily, I cannot go in to the sun for long because my chances for skin cancer are increased, I cannot get cut because I can get an infection, if I do get the flu I need to be hospitalized because I have no immune system to fight the illness off, I am nauseas most of the time, I constantly have headaches, I lose a great amount of weight, I bruise easily. Now this is only a short list of side effects, there are many more. But I will post about all of this in the future. 

Concluding Chrons 101

So I have given a small summary of what this blog is about and what is to come in future blogs. If anyone is wondering if this is going to be a blog about my bowel movements, well you might be right but I am not aiming to update you every time I go to the toilet. I hope that people with Chrons this and I hope this helps anyone who doesn't understand what I am going through and why I am who I am. So if you ever wonder what my life is like or why I am the way I am, just read this blog. 

Sincerely The Chrons Warrior