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Dear Ulcerative Colitis

Dear Ulcerative Colitis,

Well, what a journey we have been on!  Eleven years ago, you crept into my life with bleeding, diarrhoea and pain.  You were not a very welcome guest and so I ignored you.  You sat there in my guts getting angrier and angrier, your furious rage spurred you to make me so anaemic that I collapsed.  As I was taken into hospital in an ambulance with blue lights flashing, you were giggling to yourself, knowing that soon I would know your name and I would never be able to forget it.

We were introduced at the beginning of 2004, I knew nothing about you.  I googled you like a new girlfriend, trying to find out a little more.  The words blurred on the screen as tears filled my eyes when I read about the things you had done to others and what you could do to me.  I was 22 with two kids and ready to get married yet you suddenly filled my world.

You became the barrier between myself and everything I cared about.  You stopped me when I wanted to play with my babies, you laughed as you sat in-between my husband and I in bed, you revelled in your ability to stop me leaving the house and seeing friends.  You became the lump in my throat when I couldn’t bear to speak the words of ‘accidents’ and ‘soiled underwear’.

As the years went on, I learnt about every weapon I could use against you, my invisible passenger.  I learnt the names of the drugs that I hoped would kill you.  I took tablet after tablet, living with the side effects of medication that was almost as much of a twat as you are.  I ingested meds that reduced my immune system so much that I caught every bug going.

When I became pregnant with my third baby, you seemed to not want to share my body with my precious boy.  You made me thin and weak, you made me bleed so much that the doctors were fearful of my ability to deliver him and I had to have blood pumped through me to make sure we were ok.  But I make strong babies, babies that can kick your arse and when I delivered my boy, you were the last thing on my mind.

Eventually, in 2013 I learnt about a way that I could finish you off.  It was drastic but I hated you so much that I found the courage to stand up to you.  I gathered a mighty NHS team behind me to cut you out of my life.  I donned my armour that strangely was left open in the back and came with stockings…  With scalpels instead of swords, my team fought you.  They couldn’t get rid of you, so instead they took your home.  My colon was cut out, taking you with it.  No home, no you..

I awoke from this battle, wearied and worn.  My battle scars were patched up and my team surrounded me, telling me that you were gone.

I looked down to my body and gently touched the ileostomy bag that was attached to my stomach.  A sadness struck me but was swiftly replaced by a feeling of pride.  I had stood up to you and battled hard.  My bag was a symbol of this.  It showed that I was tougher that you, I wasn’t scared of you, I won you…

Months later my NHS team of awesome reconvened at the battle site, these wonderful people patched me up and reattached my small intestine to my bum ridding me of my bag and giving me a jpouch.

Over these post battle months I have realised that to beat you personally, I not only needed to find something special inside myself but that I couldn’t beat you alone.  My NHS team were those frontline soldiers but I needed to look around me to find a team that would help me with the massive changes.  A team who made everything easier by listening, by loving, by never judging.  A team who made that lump in my throat disappear, who made me know that I could say anything about you and they would still love me.

I am learning a new way of life now you are gone.  Oh, Ulcerative Colitis, you are gone in me but what no one tells you is that your absence leaves a whole host of other issues.  But having fought you and won, I know I can face anything else.

People think when you win, it is because of your physical claws in the guts of sufferers.  But in reality you win when you create the lump in the throat.  When you silence your victims like a parasite, whispering in their ears that you will humiliate them.  And so I am here to tell you… I won’t let that happen.

I won my own personal battle but there is a war to be won.

I will fight you every step of the way for the hundreds of thousands of people in the UK that you live with.  I will fight the lump in the throat by shouting from the rooftops about you.  You WILL NOT hide as an invisible illness while ever I have a voice.

I will talk about you.  I will #stoppoobeingtaboo.  I will talk about your awful ways.  I will never stop.

I will raise money until there is a cure.  I will support Crohns and Colitis UK.  I will fight.

Ulcerative Colitis, you think you know me because you lived inside me for so long, but you are mistaken if you think me weak.  I am powerful.  I am strong.  I am your worst fucking nightmare.

 

Watch your back Ulcerative Colitis, because So Bad Ass is coming to get you….

 

Sam x

 

64 replies
  1. Vicky
    Vicky says:

    This made me cry and smile. Wonderfully put. I have been very vocal since learning about my disease. It gave me an explanation for why an adult woman was pooping her pants, and had no control. The symptoms can be embarrassing, but they are so noticeable, that there is no reason why it should be wrongly, and irregularly diagnosed. More people need to know it’s out there. Thank you for writing this.

    Reply
  2. Vicky
    Vicky says:

    This made me cry and smile. Wonderfully put. I have been very vocal since learning about my disease. It gave me an explanation for why an adult woman was pooping her pants, and had no control. The symptoms can be embarrassing, but they are so noticeable, that there is no reason why it should be wrongly, and irregularly diagnosed. More people need to know it’s out there. Thank you for writing this.

    Reply
  3. Karen Mueller
    Karen Mueller says:

    Thank you for your story. I too have UC and had taken all kinds of pills, sprays, enemas etc. I am in control thanks to Remicade infusions. Been doing the infusions about four years with great success. Good luck to you my dear.

    Reply
  4. Karen Mueller
    Karen Mueller says:

    Thank you for your story. I too have UC and had taken all kinds of pills, sprays, enemas etc. I am in control thanks to Remicade infusions. Been doing the infusions about four years with great success. Good luck to you my dear.

    Reply
  5. alicia maxwell
    alicia maxwell says:

    Your cry….your battle cry… is that of all of us who suffer.

    I applaud this and you and thank you for reminding me..this is, in fact, a fight.

    Thank you.

    Reply
  6. alicia maxwell
    alicia maxwell says:

    Your cry….your battle cry… is that of all of us who suffer.

    I applaud this and you and thank you for reminding me..this is, in fact, a fight.

    Thank you.

    Reply
  7. Mari
    Mari says:

    Sam, I feel like you wrote MY story. Thank you for this. I laughed and cried but best of all I feel empowered. Please know that the letter that you put so much thought into will help many.

    Reply
  8. Mari
    Mari says:

    Sam, I feel like you wrote MY story. Thank you for this. I laughed and cried but best of all I feel empowered. Please know that the letter that you put so much thought into will help many.

    Reply
  9. joan
    joan says:

    you are such an amazing inspiration to all of the UC sufferers out there and you show that you can fight the ba***rd and be the victor. well done you. me and squirt (my ileostomy) are sooo proud of you

    Reply
  10. joan
    joan says:

    you are such an amazing inspiration to all of the UC sufferers out there and you show that you can fight the ba***rd and be the victor. well done you. me and squirt (my ileostomy) are sooo proud of you

    Reply
  11. Brad
    Brad says:

    Awesome. Just freakin awesome! I wish that today’s social media outlets and support were available twenty years ago when I fought this bastardly disease, and that I would have had the courage to talk about it like you. Twenty years post coloctomy, and seventeen years post j-pouch – keep on rockin!

    Reply
  12. Brad
    Brad says:

    Awesome. Just freakin awesome! I wish that today’s social media outlets and support were available twenty years ago when I fought this bastardly disease, and that I would have had the courage to talk about it like you. Twenty years post coloctomy, and seventeen years post j-pouch – keep on rockin!

    Reply
  13. karen
    karen says:

    wow. very moving story. its as if you spoke on my behalf. like you and many others. i am only putting off the inevitable but i am trying to fight it and hoping meds will work. have restarted remicade again after every immune suppresant drug hasnt work. humira didnt work either. fistualas, abscess, secton wires and now i am having a lot of accidents.. more so than ever before. but i am still not able to bring my head around having the ilesotomy. as docs say it will never be reversed as they believe i have both crohns and colitis.. so to make this decision will be forever. its a horrible illness that we have to endure. it completely ruins or life.. but hopefully there will be a cure in future years. best wishes to you and your family.

    Reply
  14. karen
    karen says:

    wow. very moving story. its as if you spoke on my behalf. like you and many others. i am only putting off the inevitable but i am trying to fight it and hoping meds will work. have restarted remicade again after every immune suppresant drug hasnt work. humira didnt work either. fistualas, abscess, secton wires and now i am having a lot of accidents.. more so than ever before. but i am still not able to bring my head around having the ilesotomy. as docs say it will never be reversed as they believe i have both crohns and colitis.. so to make this decision will be forever. its a horrible illness that we have to endure. it completely ruins or life.. but hopefully there will be a cure in future years. best wishes to you and your family.

    Reply
  15. Sophia
    Sophia says:

    Wow. Just wow. You have just put into words the battle of my last 4 years, and my battles I am yet to face.

    Good luck to you, you wonderful woman.

    Reply
  16. Sophia
    Sophia says:

    Wow. Just wow. You have just put into words the battle of my last 4 years, and my battles I am yet to face.

    Good luck to you, you wonderful woman.

    Reply
  17. Patrick Taylor
    Patrick Taylor says:

    That was just wonderful. I have Crohn’s Colitis and am doing fairly well….not like all the young people who get it..I am 60 with 8 years of the disease. It has changed my life. I am on Humira. I look at life and death differently…..considering it has been my job as a medical practitioner to face life and death.

    Reply
  18. Patrick Taylor
    Patrick Taylor says:

    That was just wonderful. I have Crohn’s Colitis and am doing fairly well….not like all the young people who get it..I am 60 with 8 years of the disease. It has changed my life. I am on Humira. I look at life and death differently…..considering it has been my job as a medical practitioner to face life and death.

    Reply
  19. Polly
    Polly says:

    Great story. My husband has Ulcerative Colitis which is in remission at the moment. He also belongs to NAAC, The association for Crohns &Colitis which is very helpful

    Reply
  20. Polly
    Polly says:

    Great story. My husband has Ulcerative Colitis which is in remission at the moment. He also belongs to NAAC, The association for Crohns &Colitis which is very helpful

    Reply
  21. Becki W.
    Becki W. says:

    43 years ago UC entered my life and was rampant for the next 12years. Finally, there was nothing more to be done but radical surgery. I have been UC free since I was 33 years old. To everyone fighting UC, if surgery becomes your last option, it isn’t the end of anything except pain and disability. My life has been so full….kids, owning my own business, now grandkids, and an active retired life with my hubby of 47 years.
    When I was diagnosed, I was an anomaly. I didn’t talk much about it because it was so personal. Thank heavens we have the internet so UC sufferers can uplift one another.

    Reply
  22. Becki W.
    Becki W. says:

    43 years ago UC entered my life and was rampant for the next 12years. Finally, there was nothing more to be done but radical surgery. I have been UC free since I was 33 years old. To everyone fighting UC, if surgery becomes your last option, it isn’t the end of anything except pain and disability. My life has been so full….kids, owning my own business, now grandkids, and an active retired life with my hubby of 47 years.
    When I was diagnosed, I was an anomaly. I didn’t talk much about it because it was so personal. Thank heavens we have the internet so UC sufferers can uplift one another.

    Reply
  23. Jeanne
    Jeanne says:

    the powerful truth! I’m 11yrars like you and for 8 of that I was 24/7 in pain. Very little relief and no pain meds as it took that long to be diagnosed! Along with it all is the isolation!! Not being able to work or go anywhere leaves us trapped in and depression sets in. Please people who read this VISIT your loved one!! It’s horrible enough having Crohns/Ulcerative colitis but to leave them ALONE to deal with it all is crueler than the disease. Even a one hour visit on the weekend anyone can do. We need something to look forward to. To depend on as we can depend on nothing.
    Thank you for writing this so well! Stay brave 🙂 prayers to all.

    Reply
  24. Jeanne
    Jeanne says:

    the powerful truth! I’m 11yrars like you and for 8 of that I was 24/7 in pain. Very little relief and no pain meds as it took that long to be diagnosed! Along with it all is the isolation!! Not being able to work or go anywhere leaves us trapped in and depression sets in. Please people who read this VISIT your loved one!! It’s horrible enough having Crohns/Ulcerative colitis but to leave them ALONE to deal with it all is crueler than the disease. Even a one hour visit on the weekend anyone can do. We need something to look forward to. To depend on as we can depend on nothing.
    Thank you for writing this so well! Stay brave 🙂 prayers to all.

    Reply
  25. Bryanna
    Bryanna says:

    This is awesome!!! unfortunately I have Crohn’s and it can’t be cut out like yours 🙁 I’m going on 16 years with mine and I am 23 now! I keep fighting with every new drug that comes along. Currently it is entyvio!

    Reply
  26. Bryanna
    Bryanna says:

    This is awesome!!! unfortunately I have Crohn’s and it can’t be cut out like yours 🙁 I’m going on 16 years with mine and I am 23 now! I keep fighting with every new drug that comes along. Currently it is entyvio!

    Reply
  27. Jeanie
    Jeanie says:

    I have had UC since I was 20. At 22 I was told I would be lucky to make it to 25. In 16 days time I will be 67 years old. Yes, the medication is unpleasant but I battle on. Why? Because I have amazing friends who support and understand what I have to go through. Without them, I would have curled up in a ball and given in. For me, every day has been a bonus and I love my life. Thank you for writing so openly about what has been a taboo subject for many years. Inspirational woman!!!

    Reply
  28. Jeanie
    Jeanie says:

    I have had UC since I was 20. At 22 I was told I would be lucky to make it to 25. In 16 days time I will be 67 years old. Yes, the medication is unpleasant but I battle on. Why? Because I have amazing friends who support and understand what I have to go through. Without them, I would have curled up in a ball and given in. For me, every day has been a bonus and I love my life. Thank you for writing so openly about what has been a taboo subject for many years. Inspirational woman!!!

    Reply

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