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Remicade : vers la rémission // Remicade: the “almost” cure

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Lorsque j’ai commencé les cures de Rémicade – mais oui rappelez-vous, quand je n’ai pas pu partir à Prague ! – j’avais peur : je lisais et relisais les trois petits fascicules que ma gastro m’avait donné en guise d’explications des tenants et aboutissants de ce lourd traitement. Le type de fascicules dans lesquels tous les mannequins sourient niaisement alors qu’il s’agit de chimiothérapies. Mais en définitive, mieux vaut en rire qu’en pleurer : le Rémicade se révèle être le traitement le plus efficace qui soit !

When I began Remicade injections – remember when I couldn’t go to Prague? – I was scared: I read and re-read the three little booklets my doc gave me as to discover the heavy treatment I was about to start.  Those were the kind of booklet on which the models are stupidly smiling though it’s explaining chimo. But in the end, we’d rather smile than cry: Remicade can be held as the most efficient therapy so far!

Avril 2010. Seule dans ma chambre d’hôpital, je bougonnais à l’idée de devoir revenir régulièrement pour être shootée aux anti TNFα. Ces médicaments ont pour vocation de maîtriser la molécule du TNFα (Tumor Necrosis Factor) naturellement présente dans l’organisme et responsable des inflammations dans le cadre de maladies inflammatoires chroniques de l’intestin (MICI). Le patient a alors le choix soit de pouvoir s’injecter lui-même ses doses à domicile toutes les deux semaines, soit de faire l’injection toutes les huit semaines à l’hôpital. Il va sans dire qu’avec mon appréhension des piqûres et le stade avancé de la maladie à l’époque, j’ai préféré la seconde option.

April 2010. Alone in the hospital bedroom, I was grumbling thinking I would have to come back every eight weeks to be shot with anti TNFα. Those meds are needed to limitate the effects of the TNFα (Tumor Necrosis Factor) molecule, which naturally belongs to the human body and is responsible for inflammations when it comes to chronic bowels diseases. Then the patient has the choice in between doing the injections on his own, every two weeks, or being treated at the hospital every eight weeks. In my case, no wonders: I’m such a little girl in front of stains and I was so sick back at the time I couldn’t take injecting myself.

En effet, si le Rémicade est d’une efficacité redoutable, ce traitement n’est pas dépourvu d’effets secondaires et de précautions à prendre strictement avant l’injection du produit miracle. Les anti TNFα sont avant tout de puissants immunosuppresseurs, qui rendent les patients d’autant plus fragiles et sensibles aux microbes et autres virus saisonniers. Quelqu’un éternue ? Je fuis. La météo s’annonce glaciale ? J’enfile pulls, vestes et écharpe. Oh, et j’évite de boire dans les verres des autres, cela va de soi.

The efficiency of Remicade has indeed been proven, but it implies side-effects and precautions must be taken before the holy injection. Anti TNFα are powerful immunosuppressive drugs that make one patient even more fragile and sensitive to his environment. Someone sneezing? Run! The weather is getting colder? Get pullovers, coats and scarves! Oh, and do not forget not to drink in someone else’s glass.

En bonne chimiothérapie qui se respecte, le Rémicade est également source d’un problème quotidien majeur pour nous mesdames : la chute de cheveux. Et pas la traditionnelle chute de cheveux qui bouche l’évier de la salle de bains : la version hard core, qui fait que l’on sème la moitié de son capital capillaire aux quatre coins de l’hexagone et de l’appartement commun, des appartements des copains et j’en passe. Merci Maman, merci Papa de m’avoir faite avec autant de poils sur le caillou !

As a proper chimo, Remicade is also responsible for a major problem ladies: hair loss. Not the kind of hair loss that only block up the bathroom sink: the hardcore kind that literrally makes you loose you hair everywhere. Thanks Mom and Dad for having me with such thick hair!

Toujours dans les problématiques féminines, le Rémicade implique aussi de lourdes précautions quant à la contraception. A l’évidence, chimiothérapie et grossesse ne font pas bon ménage. Un choix crucial pour certaines, pour d’autres une aubaine. Ca tombe plutôt bien, je ne suis pas franchement pressée ! Désolée Mamie, désolée Papi…

Another feminine problem related to Remicade: precautions must be taken when it comes to contraception. Logically, pregnancy and chimo don’t get along together. It might be an issue for some, others might consider it as fate. In my particular case, no worries, I’m not in a rush! Sorry Grandma, sorry Grandpa…

Enfin, dernière indication et pas des moindres : le Rémicade impose de respecter strictement le calendrier et d’être suivi(e) régulièrement par un médecin compétant. L’injection ne peut par exemple pas être pratiquée en cas d’infection : autant profiter de l’expertise d’un professionnel pour être sûr de ne pas détruire une santé déjà bien abîmée. C’est aussi pour cela que je préfère l’hôpital à l’injection maison : pour être sûre, pour savoir tous les deux mois que je me porte bien, pour faire des bilans sanguins et enrayer toute rechute ou signe annonciateur de quelque chose de plus grave.

Last but not least: Remicade implies sticking to a very precise calendar and meeting up with your doc regularly. For instance, you can’t have the injection if you have any kind of infection. Better safe than sorry: you might as well have the opinion of a professional before being shot. That’s mostly why I’ve preferred going to the hospital than doing it on my own: to make sure I was OK and that the treatment was working great, to run blood tests as to prevent from any serious illness or relapse.

En d’autres termes, j’entretiens avec le Rémicade une relation digne du syndrome de Stockholm : je redoute la piqûre, je crains la journée d’hospitalisation qui me renvoie à ma condition de malade, je pleure parfois à cause de la dose de cortisone qui m’est prescrite avant l’envoi du médicament, je peste souvent de devoir être toute une journée “off”, j’angoisse de finir chauve… Et dans le même temps, jamais je ne me suis sentie si bien, au point de m’en prendre d’affection pour ce shoot de bien-être qui m’assure paix et tranquillité pour les huit semaines suivantes. D’où la petite illustration qui fait office d’avatar pour mon blog !

I might as well say that my relation to Remicade can be compared to the Stockholm syndrome: I fear the stain, I hate going to the hospital (which makes me remember I’m not healthy), I sometimes cry because of the steroids they’re giving me right before the injection, I often grumble because I have to take one day off… But in the meantime I’ve never felt that good! I’m even getting to like this “feel good” shot that ensures me peace and tranquility for the eight coming weeks. That explains the illustrative picture of my blog! 

Finalement, ça ne fait que six journées un peu glauques dans l’année, que ma soeur et moi étions parvenues à rendre un peu plus douces en se serrant les coudes et en partageant un lit pour deux. Petit bout, ça va me manquer de ne plus passer ces moments à tes côtés… Déménagement oblige, c’est à Paris que je serai traitée désormais. L’occasion peut-être de rencontrer d’autres crohnies avec de nouvelles expériences à partager !

In the end, it’s only a matter of six shabby days per year, six days my little sister and I have made a little sweeter by going there together and sharing the same bed. Sweetheart, I’m gonna miss that special time together… My moving to Paris obliges me to go get my Remicade here from now on. That could be the occasion to meet other fellow crohnies with new experiments to share!

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13 Comments Join the Conversation

    • Merci pour ton commentaire Hugo ! Je suis ravie de savoir que le Rémicade rend la vie plus facile à d’autres malades. Pour ma part cela ne fait que 2 ans et demi, mais ton témoignage donne de l’espoir pour la suite ! :)

      A bientôt,

      Lisa K.

      Reply

      • Heidi,Thanks so much for sharing EVERYTHING!! It\’s so nice to come acrsos people who have had journeys similar and can truly understand what someone with UC or Crohns really goes thru. I have Crohns and have a permanent illeostomy as well. I have had many surgeries along the way but have realized I would not change a thing if I could do it all over since all of this has made me who I am today, a person I really like! I am 46 yrs. old and had my first colostomy surgery when I was 25. I have never changed who I am and my ostomy will never define me. I feel as though I do so much more now than I ever did when I was really sick. I know the surgeries have given me my life and health! I have 2 beautiful daughters (yes, I got pregnant twice with a colostomy) and both are in Girl Scouts. It\’s funny because I help out in so many ways but I don\’t go with them on the overnights. Most don\’t know I even have an ostomy but I also have always felt that I would need running water and a bathroom that flushes to make those overnights bearable so I have always opted out. You\’ve given me some thought and another way to possibly challenge myself. I might just go on the next one!You\’re a true inspiration to many and thanks again for sharing so much.Kim

      • HI Kim,Thanks for the great comment. I celmpotely agree with what you say about not changing a thing. I have learned so much through this experience. I have an even bigger sense of gratitude now for all my friends and family who have supported me and for the amazing medical professionals that have helped me out. I appreciate the small things in life so much more now too. I can be doing something simple, like sitting out in the sun and feeling the wind on my face, and I just feel this immense awe and sense of wonder at how amazing it feels to be healthy again. I have also learned much about myself through the experience. I have found out how strong I really am and have discovered more about my abilities to overcome obstacles.I am glad you are inspired to go on a scouting overnight with your daughters. You absolutely should! Most developed campgrounds at least have a water faucet. There are great water jugs with spigots that you can sit on a picnic table instant running water:) And emptying in outhouses is a breeze. If they are dirty and you don’t want to sit on the seat, you can actually empty standing up. With the extra deep hole, you don’t have to deal with the dreaded splash-back that happens when emptying this way in flush toilets. Thanks again for sharing your story!Cheers,Heidi

      • Agreed to all 5 of the above! Coming from a fellow IBD patneit I know those all too well. I also carry charmin wipes on airplane and while travelling, and in my gym bag they are everywhere! You never know! Sorry to hear about your race would have been nice to meet you there. If you do Summer 2012 the Virginia race is WAY HILLY! it was rather obnoxious actually.

    • Merci pour ce post! Je suis une québécoise qui recoit rémicade depuis 8 mois et moi aussi j’ai l’hantise de devenir chauve et je remercie ma belle épaisseur capillaire qui me sauve du crâne dégarni! MErci tu m’As fait sourire en cette journée officielle ou j’ai reçu mon “mice juice” comme je l’appel :P

      Reply

  1. Hi Alan,I am glad you find the site helpful. I had svraeel people reach out to share their IBD stories with me when I was sick, and I know how important it is. That is good news that you are showing improvement since April. Ulcerative Colitis is very unpredictable, so stay positive and strong. You may be lucky and not have your disease progress. For many, many people, their UC does stay mild and well-controlled with medications.My UC was mild for about six years before it started to get more moderate to severe in the following four years. During those combined ten years, I still had countless amazing backpacking, climbing, skiing, snowboarding, canoeing etc. adventures. Try not to let your UC stop you from pursuing what you love. I frequently backpacked and climbed with pain, bleeding and fatigue. I had to take it easy and go slower, and sometimes I had to dig more catholes than the average person, but the joy of being in the wilderness was worth dealing with those things to me. I only cancelled a few trips because I was just too sick or was afraid to be far away from medical care. As far as foods, sticking to low-residue things like rice, pasta and crackers worked for me. Nuts were hard for me during flares. I seemed to do okay with protein bars too (the smooth, non-nutty ones like Think Thin bars). I did not seem to have a problem with lactose, so cheese didn’t bother me. It causes issues for some people though. Just experiment with foods in the next month or so before you take them on your trip to see what gives you the least amount of problems.My love of outdoor adventure actually helped me make the difficult decision for surgery. I knew as soon as UC, and the side effects of some of the drugs I tried, made it impossible to hike, climb, snowboard, etc . it was time for my colon to go. If your UC does end up getting worse down the line and stops you from doing what you love, know that surgery is a great option to get your quality of life, and all the things you are passionate about, back. So far, my ostomy has not stopped me from doing anything,Best wishes on your November trip. Please let me know how it goes!Cheers,Heidi

    Reply

  2. Hi, thanks for the nice article! I was wondering if the treatment is coveted by insurance in Paris. I’m planning to move there in a few years:)

    Reply

    • Hi Alan! I’m so sorry for answering that late, I’m so busy to manage the blog… However, yes the treatments are covered here in France. Do not hesitate to contact me if you need further information about that (lisakim.peres@gmail.com). If I can be of any help to a crohnie friend it would be a great pleasure. Cheers!

      Reply

  3. Hi again, sorry for all the replies I’m leaving at once!

    I’ve been reading several articles on your blog now and I it is so inspiring to me. I am really strugling since I have been diagnosed. With the Crohns, the diagnose and the pain. But I also develloped chronic pain in my joints and the docter say it isn’t related to each other.
    Reading a blog like yours gives me hope and more strength to keep going, thank you so much for that!!

    I have a blog of my own where I write about a lot of things including Crohns. I’d like you to come take a look, but I think it will be difficult for you to understand ’cause it’s all written in Dutch.
    I was wondering if you would like to write an article on my blog? About your fight against this disease and how it reflects on the way you live your life? Just because I find you so inspiring, I think it would be nice to share this with my readers? Let me know if you are interested!

    Isabelle

    Reply

    • Thank you so much Isabelle for your lovely comments and kind words.

      I would be honored to write a piece for you… I think it’s important to help other crohnies keep a positive mind. I’ve struggled so much (and I still do) but Remicade has changed my life with Crohn’s. Since I’ve been on remission, I feel almost normal again!

      Feel free to drop me an email at lisakim.peres@gmail.com. Thanks again for everything and keep fighting xxx

      Reply

  4. Thanks for the auspicious writeup. It in fact was once a enjoyment account it.
    Look complicated to more delivered agreeable from you!
    By the way, how could we be in contact?

    Reply

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