I wish…

I sent this off to The Guardian a couple of days ago and thought I’d post it here. I had another infusion of infliximab a few days ago, but have been left wondering if “that day” has come sooner than I’d anticipated…

I live with a chronic condition.  It is called Crohn’s disease, a disease which affects the bowel and can affect other parts of the digestive system.  It is an autoimmune disease, but we don’t know what causes it yet.  It is lifelong and incurable. It is only treatable. Its symptoms include diarrhoea, fatigue and abdominal pains.

I’m one of the lucky ones in that I am on a treatment that is working and has put the Crohn’s in remission, called infliximab. Infliximab is a drug that binds to a chemical messenger called tumour necrosis factor alpha (TNFα). There are only a few of other drugs that do this. Luckily, I am now starting to live a relatively normal life. I am a teenage boy doing normal teenage things – going out with friends, playing video games and eating a lot of food (something I couldn’t do when the Crohn’s wasn’t in remission!) But, in the past couple of years, I have had to do a lot of growing up, simply to try and cope with such a diagnosis.

Future treatments and potential cures are in development. I hope that within my lifetime that a cure will be found, however unlikely this is. I hope that many more treatments are developed to put people in remission for a long time, to prevent them suffering.

However, there will come a day when infliximab stops working. I wake up every morning hoping that today will not be that day. There will come a day where the next treatment stops working and any other treatments stop working and, my god, I do not want those days to come soon. I am young and yet I face a life of dangerous drugs, clinical trials and surgery to remove parts of my bowel ahead of me. And I wish I didn’t have to suffer with it.

11 Responses to “I wish…”

  1. Matthew G February 7, 2012 at 6:03 am #

    Rhys,

    Came to your site based on your comments about Burzensky. Interesting stuff.

    You should break down his movie and see if you can more fully disprove the arguments presented. He appears to have a number of documented testimonies who participated in his trials against the State and NCI. It is curious that all the cures came in the 90’s I’m personally curious whats happened since. Clearly, he’s made a great effort to prevent those trying to stop his cause. It would be great to know the truth as one who lost my wife to cancer in 2000. I was 22 and would have loved to know more solutions..

    Beyond that… My wife now has struggled with UC which not as severe as chrones shares much in common and just wanted to share what she did to go from every day in the bathroom for 4 hours with 4 asacol pills 3 times a day to 1 asacol pill 2 times a day and really living completely free from issue, while eating a relatively normal American diet.

    First, Study alkalinity in the body and this all makes more since.

    Basically she started with aloe juice there is a cherry kind i think it was called aloelife that she took a couple tablespoons a couple times a day to start the healing. (we thought it was crazy but it kinda made sense that aloe is used to help topical sunburn so maybe it could do the same on the inside). She used that for about 6 months. Then she added probiotics for about 6 months as well. But the kicker has been green pills.

    The kind that smells like barley. They have wheatgrass, and a bunch of other super alkalizing products, we like garden of life perfect food pills or amazing grass super foods. Not promoting anything here just telling you it really worked, Now it probably cost us as much as the medicine would have, so that may be your toss up, but to have no flare ups for over a year and a half has been incredible. She’s going back in for a colonoscopy soon we are curious what the new results will be.

    If it serves you… Try it. Otherwise good luck it’s not a fun one to deal with for sure.

  2. Karl January 31, 2012 at 12:56 am #

    Just ran across your blog, this reminded me of an article in New Scientist last year about fecal transplants and I wondered whether that might be a treatment for Crohn’s disease. I see that someone on Crohn’s Forum is trying it and it seems to be going well for them so far:

    http://www.crohnsforum.com/showthread.php?s=d7ea7140850085078cc6103e5c6437c8&t=15548&page=2

    Disclaimer: I don’t have Crohn’s myself. Google and decide whether you want to discuss it as an option with your GP.

  3. Dermot December 15, 2011 at 6:58 am #

    yes what to do wait and hope. Ihave epilepsy and clinical depression there is so much more for me and for you than there was before. Hang in there.

  4. Gabriel December 15, 2011 at 3:06 am #

    Dont give up kido. You will do well.

  5. JupiterIsBig November 29, 2011 at 11:58 am #

    I have a friend with Crohn’s – she has had most of her bowel removed. I don’t want to promote quack cures, but it makes some sense when I read in New Scientist some years ago about using sterilised (clean) worms that live in pigs to give you immune system something to deal with. Has this been considered ?

  6. Andrew November 28, 2011 at 9:12 pm #

    Hi Rhys

    Check out @LDNNow on Twitter for info on low dose Naltrexone and Crohn’s

    Peace
    A.

  7. Lisa Marie Costello November 28, 2011 at 1:43 pm #

    Hey Rhys, Just wanted to say i’m so happy Infliximab is working for you! I was diagnosed with Type 1 Diabetes at 12 and Severe Rheumatoid Arthritis at 18 and totally sympathise with that sudden jolt into maturity. After many years of failed treatment i too was put on Infliximab via infusion every 8 weeks that worked well for a number of years and gave me some hope, but as you mentioned after around 3 years it just suddenly stopped working. I was then put onto Rituximab and am currently going through my second treatment of it and in all honesty the Infliximab stopping working was probably the best thing as with Rituximab i only have to have treatment around every 9 months (give or take) and i have not been in less pain since diagnosis. I guess what i’m trying to say is that i really think you have the right attitude towards it, who knows what future Scientific advances hold!? Good luck and i hope it continues to work for you.
    Lisa x

  8. lisacx October 27, 2011 at 12:39 pm #

    When not suffering too much the psychology of perception and experience of self and illness is interesting. It’s a major issue in the psych service I attend but I also studied it in Uni. One of our psychologists said that she would have to kill herself if she became physically kaput as her identity is so wedded to her extreme fitness as a runner and ex professional ballet dancer. I said that that probably wasn’t a useful response around people struggling with various incapacities and wobbly sense’s of self. Your piece just made me have a little stab in the heart, I hadn’t thought of how it must be for younger people dealing with this stuff, ouch. Just the bestest of wishes as ever.

  9. Andrew October 1, 2011 at 2:58 pm #

    rhys, i’d try some vitamin D, theres a study that shows people on steroids are low in it !

    http://www.eurekalert.org/pub_releases/2011-09/aeco-osl092911.php

    since it reduces inflammation it may also help with chronns !

    you will have to tailor how much to take daily and its quite perishabale sothat needs ot be given thought as well

    don’t be pigheaded, trying things is always uneven, but thats life !

  10. Andrew September 12, 2011 at 2:04 am #

    i

    think

    the

    basic

    problem

    is

    that

    you

    are

    persuing

    the

    illusion

    of

    a

    normal

    life

    well

    there

    is

    none

    one

    is

    vulnerable

    and

    surrounded

    by

    predators !

  11. Andrew September 11, 2011 at 9:39 am #

    people who survive chrons long term do more than rely on the medical model !

    last time i suggested you get off your butt and out into the real world and gave you some links you accused me of spamming and removed the links, who else would those links have been posted for ?

    medicine is all about money and not necessarily helping you !

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