sam cleasby so bad ass phantom rectum

What life with my chronic illness is really like 

Sometimes I worry what people think, I worry that they may think I’m overplaying my illness, faking it or being dramatic.  I worry that they will see me on Instagram laughing or out with friends and wonder how it is that I cancelled my plans the day before. 

I worry that people think I’m being lazy when I sleep in till 11am or making excuses when I don’t want to go out. And so I thought I’d try and explain how life is with MY chronic illness. 

Have you ever had a stomach bug or food poisoning? That feeling of crampy pain, constant diarrhoea and a concern you might not make it to the loo? Well that’s how I feel most days, for months and months now I have been going to the toilet 20+ times a day, I have accidents and to top it all off, my poo is so acidic that it’s burning open sores into the skin around my bum which bleeds and is very painful. 

I often go to the toilet 5 or 6 times through the night which means I’m thoroughly exhausted most of the time.   I have pouchitis which is an infection in my Jpouch so I feel unwell with temperatures, pain and generally being under the weather. 

My immune system is rubbish, IBD is an auto immune disease, meaning that my body is attacking itself.  Between this and years of meds that batter you down, I literally catch every single bug going.  This means I’ve had a cold and cough since October.

There are days when the fatigue and pain is too much to bear. When the painkillers don’t do anything and I just need to sleep.  I take anything from 4-16  immodium a day and codiene every day. The immodium gives me stomach ache as it attempts to slow the process of food through my system and the codiene make me fuzzy headed and sleepy. 

  
There are days when it all gets too much emotionally, I cry, I hide away, I wonder if it’s all worth it.  The never ending treatment and the feeling this could be for the rest of my life is soul destroying.  Times when I can’t find a silver lining and wish I could just be normal. 

Sometimes I simply pysch myself out, I worry so much about having an accident in public that I talk myself out of going anywhere, preferring the safety of my bedroom to the scary, judgmental outside world. 

When I do manage a day out, it comes with planning. No food the night before, codiene to help me sleep and lots of Imodium on the day to get through without shitting my pants.  It takes a mental strength to just get out of bed.  I pack supplies of meds, wipes, bags and spare underwear. 

So please try and understand, I know I sometimes appear flaky but it’s only because life is so damn hard right now. I try my hardest to lead a ‘normal’ life, to keep in touch and come to your events but sometimes it is all just too much and I apologise for this. 

Just remember how it felt when you had that food poisoning/tummy bug. Did you feel like partying, going shopping, going to work, going to someone else’s house? 

No? Well, please have patience with me. 
Sam X 

24 replies
    • Tammy
      Tammy says:

      Its been 2 years for my Proctocolectomy and asstimoses ( removal of entire colon and part if rectum) and I’ve had nothing but pain, obstructions and multiple surgery’s…

      Reply
  1. Toni-Ann
    Toni-Ann says:

    I’m sure nobody who suffers from IBD or cares for someone with IBD judges you at all. I don’t. You are allowed to have a life, to have fun, to go out. Your honesty about IBD is important and your advocacy for sufferers is important. It brings a debilitating disease out in the open and builds empathy and compassion amongst those who do not understand. Every time you post and are in pain I just hope that the next steps for you bring some relief and respite x

    Reply
  2. Donald
    Donald says:

    Hi Sam thank you for posting this one . One important thing is education to everybody the sufferer for them it gives them a voice to talk about what they feel like this part is specially at the beginning . I felt ashamed ,embarrassed and When i did talk people didn’t understand it or even listened to me.
    To the people that don’t have the disease it makes them understand just a bit more witch isn’t much at all because there is still a lot of people outthere that has still never heard of this IBD crohn’s and specially UC .
    EDUCATION is needed big time it’s a win win situation .
    Thank you for relaying this message so well
    One of your Canadian supporter
    Donald

    Reply
  3. Dave Pawson
    Dave Pawson says:

    Unless you’ve been there / done that (ostomy etc), it’s quite likely many simply won’t understand Sam. Be assured, many who follow your scribbles will understand and sympathise.
    You should know you can’t please all of the people all of the time, so don’t try.
    Chin up lass, keep that smile when you can.

    Reply
    • debbie
      debbie says:

      Hi Dave Im about to get an ostomy …I hear that its the best and that life improves so much…I have had UC for 12 years and been blessed to have been in remission for 4 years… However over last 6 months hsve noticed suttle changes lack of energy ..dehydration…dizziness…recent colonoscopy showed no flare but severly damaged left sided colon strictures scarring poor blood supply ..had a stricture previously..but getting smaller and once again 100s of pseudo polyps… so havnt seen gastro enterologist back yet ..but have made my own appt with a colorectal surgeon for a second opinion..becsuse i feel i am hanging in there hoping not to get cancer which we know is high post 12 yrs of disease …so there…did u feel heaps better after osteomy ?

      Reply
      • Dave Pawson
        Dave Pawson says:

        Hi Debbie. Yes… but it took a while. The worst part was that feeling that I was the only one? Sams blog and others (FB group ‘ileostomy’) helps when you have someone to ask?
        Once recovered from the op (5 weeks ‘fully’) it is 400% better. I’d lost 40 lbs plus, took a while to get that back.
        And I was glad not to have to go toilet 20 plus times a day!

        without more like Sam ‘spreading the word’, it can be quite lonely!
        I was 12 months trying meds – all failed to improve, I opted for surgery (total proctectomy) since I can’t get UC without a colon?
        Good luck

        Reply
  4. Lorraine
    Lorraine says:

    Hopefully Sam you will get your life back after the opp no more medication or running to the loo you will be relieved to get your Barbie butt,hope everything goes well for the opp been there done that.

    Reply
  5. sonya wakenell
    sonya wakenell says:

    Sadly there are plenty of ignorant judgemental people out there who simply have no idea what we have to endure. They look at our fake happy exteriors and decide we are just fine and what’s all the fuss about. Turn our bodies inside out and there you have it…pain..fatigue..inflammation.. scarring..disease…the awful list goes on. We are part of a unique group..and totally get what suffers endure. There’s no easy answers..no cure..just management and even that is in no way straight forward. Keep fighting Sam and keep writing.. We are warriors. ❤

    Reply
  6. Alison Bonura
    Alison Bonura says:

    Hi, this was a fantastic read, it describes exactly how I’m feeling and living. I have just been diagnosed with Crohns after 8 months of not knowing what was going on with my body. Some days I have felt so I’ll I thought I was dying I really did. This is all new to me and it really scares me. I just take each day as it comes.

    Reply
  7. Sue
    Sue says:

    Sam my love….carry on being brave. When I was diagnosed I looked at myself in the mirror and saw a little old lady at 41. I lost so much weight because of the diaorrhea I lost confidence and found myself With agraphobia. 14 years on, I have good days and bad days but the disease is much better controlled….keep badgering your medics…there’s lots of medication out there to help and I hope you sound yourself in remission xxxxx sending love and healing xx

    Reply
  8. Steph
    Steph says:

    Hi I’ve got chrohns disease I’ve been quite lucky as mine is now under control but I remember when I first was diagnosed with it people used to say I was dramatic and putting it on etc it is horrible the cramps used to get that bad and painful I used to be sick a lot and I’ve been in town and poo ‘d myself people don’t realise how bad it is at all so well done to you to try and educate people about it xxxx

    Reply
  9. Emily
    Emily says:

    Hi Sam,

    Wishing you all the best!

    I have Crohn’s and I know what it’s like to not know one day to the next how much pain you will be in or if you will have any energy.

    Hope things improve for you soon.

    Love Emily

    Reply
  10. Donna
    Donna says:

    Explanations and apologizes however nice but definitely not needed or necessary. Be who you are ……beautiful! I know it’s maddening…frustrating. .tiring for all involved, the feeling of guilt becomes overwhelming and most of all the guilt of feeling tired of hearing the same old “you will be ok…sorry you don’t feel well, hope you feel better and how are you feeling” makes you just want to scream. Unfortunately there’s no way around it. It’s just plain crappy for everyone but at the end of the day you are loved and that’s what matters (((((hugs))))) your friend Donna

    Reply
  11. Gary
    Gary says:

    Having just passed the Holiday season and also having just started new medications ( methotrexate ) I know the feeling only too well. The people that know me best I am sure sometimes even think I am not that bad…but went out New Years Eve and made it until 9 PM before I could fight the fatigue no more.
    I know the entire ingredient list of everything in my bathroom , I can sleep at any hour of any day.
    Knowing there are others out there and reading their accounts of their struggles with IBD truly makes me feel not alone.
    Its life now and what we all have to deal with , of course I wish I had never been landed with this curse and have lots of days of thinking ” what have I done to deserve this?”
    Good Luck to You on Your journey and may your good days be plentiful x

    Reply
  12. Chloe
    Chloe says:

    This could have been written by me. I know exactey what its like. I dont have a jpouch (yet) but everything else is the same. I also have a wonderful anul fistula yay! They want me to start influximab but im worried it will make me worse, i know of many people have good results buts its always at a huge price of horrible side effects. So i dont know what to do. The specialists and surgeons are not much help, i think they are just so cut off from the reality of this that they dont get why im not willing to risk losing what little teeny bit of health i have, every morsel is precious. I dont know anyone else with this disease so i have no one to talk to. I’d love to chat if you ever wanted to. I have zero friends now because of this, no ones wants a friend who can never go out 😢 Chloe in England

    Reply
    • Donald
      Donald says:

      Hi Chloe even though your comment was met for Sam I read it and you got my attention . I also like you I have ulcerative colitis and feel pretty alone at times . I would like to be there for you if you let me . This is a horrible desease to be stuck alone to deal with . If you need a friend look me up just reply to this message and ill answer you back have a nice day
      Some one from Canada
      Donald

      Reply
  13. Fiqui
    Fiqui says:

    I can relate to all the comments. I have found comfort in researching, having finally a good doctor, talking about my disease and knowing I’m not the only one struggling sometimes to make it through the day. Thank you all, never give up.

    Reply
  14. Brandy
    Brandy says:

    I also feel a need to comment to Chloe. I myself have Crohns disease and am dealing with anal fistulas. Just had surgery again yesterday for one, they are literally a pain in the arse. If you get the chance to try Remicade it may help stop them. It worked for me for over ten years and I actually had two years remission. Unfortunately I had to stop it for a bit due to other health problems and it no longer works for me. Hope you can try it and receive some relief.
    Chin up from Canada.
    Brandy

    Reply
  15. Jackie
    Jackie says:

    So well written! I have a beautiful twenty year old daughter with UC. She came down with it at the age of thirteen. We have done everything from all natural, no gluten, tons of supplements but realized this disease is stronger than that! When she experienced excessive bleeding we dug our heels in and we went to the next level of meds. We found a doctor that has really helped her get it under control. Not cured but so much better! Thanks for shinning the light on this disease to help educate our family, friends and love ones understand the needs of those suffering!

    Reply

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