So I’ve been doing my dilator every day for a week now, and even though it’s been too painful to push it completely in, I’ve managed to get it most of the way in, a bit further each day. I never look forward to it, but it’s something that has to be done, and I have been through a lot worse… I just keep reminding myself that when I find myself getting upset. Don’t get me wrong, I’ve felt disappointed in myself that I haven’t managed it all yet, but at least I have been doing it and not bottling out. Stacey has felt so much better really since the day after I started using my dilator. She no longer feels tight or gravelly and painful when food is coming through and I am finding that I am having a more regular pattern to my output if I eat properly in the day. I am so pleased that the pain has subsided and now I don’t feel worried that my Crohn’s is coming back or anything along those lines. I shouldn’t have thought it, but having suffered with it for the vast majority of my life, it would not be natural if it had not crossed my mind, no matter how pessimistic or optimistic I was about it.
On the anaemia front, it is still quite significant, but I have been taking my iron tablets & have been given some anti-sickness tablets if absolutely necessary, though I am not keen on taking anti-sickness as most of them make me sick, weird I know! Everything else in my blood results was fine, but I need to keep persevering with taking the iron then if things still don’t improve they are going to look at giving me iron infusions. Still feeling very tired and find it hard to get warm once I’m cold and stay warm, feeling dizzy and weak, but as I always tell myself, things could be worse. Just got to get on with what you can and try to keep smiling and enjoy yourself! 🙂
Since last time I wrote, I have been working a little bit, seen friends and had some great days with them, had an Indian Takeaway for my Gran’s Birthday and went away for the weekend just gone with my Mum! We went to Tynemouth to see The Wanted perform at Tynemouth Priory and Castle, which was just phenomenal, definitely up there in the best nights of my life. I had an absolute ball, jumping around non-stop for an hour and twenty minutes, made some new friends, sang my heart out and got all of The Wanted boys to notice me and wave at me/blow kisses at me/make peace signs at me 😀 Without Stacey, I wouldn’t have even been able to consider it, it would have been a definite no-go this time last year or the past 15 years. Then after, we stayed overnight and had lots of giggles, then the following day we headed back. On our way stopped and enjoyed a gorgeous Sunday Lunch, yum! That’s another thing that Stacey has allowed me to do… enjoy my food, and besides enjoy, actually be able to eat! It is just amazing, more than words could ever explain! It makes me well up just thinking about how lucky I feel and happy to have her and be here to experience lots of new things without worrying about being in pain or not being able to make it to the toilet in time. Even the things I did experience, I never properly enjoyed, especially towards my operation I would have panic attacks and bad anxiety as a standard thing going out. I also met Donna Mear, and her daughter, who is a lovely lady with an ostomy, even though it was a brief meeting! It was really nice to finally meet her. I also finally found the guts (pun intended) to go and get my nose pierced yesterday, and have a cute, little diamanté jewel now as a nose piercing! 🙂
I have been thinking a lot recently back to this time last year, with it coming up to a year post-op next month. It is truely amazing how quick things can turn around in such a short space of time. It is amazing how one month, you are heading for death’s door, then the next you are practically at it, to the next having your life saved then building a life you have never had or have imagined before in the months that follow. Going through my photos on my laptop has made me really emotional, just to see how ill I looked last year and over the years, and how the pain and illness shows in my face and body, no matter how hard I tried to hide it. I remember now how I just wanted to give up and no longer carry my life on this time last year, I had had enough and was ready to give up the fight, but something inside me just kept me slowly pushing through it and as the saying goes: “When your mind says “give up”, Hope whispers “one more try” .” There will be some of you probably reading this, who feel how I did when looking at others who had an ostomy or had got better before my operation, in the sense that you think “Will that ever be me who gets better?”, “Will that ever be me who has a life?” and “What have I done to deserve all of this pain & suffering?”…All the questions you go through in your head like that when such a horrible disease is trying its best to overcome you and destroy you, no matter how hard you try and fight. The truth is, it will get better. You might be reading and be thinking “well, it’s easy for you to say that…” and I can totally understand your point of view, because I did exactly the same, but take it from me, somebody who has been there, it will, it won’t last forever. It may sound a little cliché, but believe that it will get better, even if there’s only a tiny bit of you that can believe, because as long as you have hope and faith, you will get there. Have faith in those who are going to make your life better too, they are committed to making you better. Have faith that your life will turn around and you will be able to do things you have only been able to dream of, even if that is something simple like dreaming of a life where your days aren’t spent counting the tiles on the bathroom wall as you hopelessly sit there clinging on for dear life in agony while the whole world and it’s wife drops out of your backside, or refuses to ever make an escape, depending on your “lovely” devil child of a Digestive System.
To give you an idea of how ill I was inside, here is a photo from my Colonoscopy over three years ago now, before I started Infliximab:
Pretty grim, eh? And to think I survived another two years before surgery, with that getting worse, and strictures left, right and centre, I have no idea how. That is just a small portion of my colon, I would dread to see the entirety of it! I remember my consultant at the time coming through to me after the scope and saying “your intestines are shot” and explaining to me how he has never seen Inflammatory Bowel Disease so bad more than a few times in his career, let alone on a teenager.
The best thing about it all? Yes, Infliximab failed, all my medication and treatment options failed, but I no longer have that now. The devil colon has gone and will never return! Here I am, alive to tell the tale, medication free & I can very happily tell my devil colon & Crohn’s Disease to go to hell! I fought you, and yes, I won!
Stacey, we make a great team! 🙂
Tags: Colon, Crohns, ileostomy, Infliximab, Stoma, Surgery, Teenager
Living with Stacey Stoma. 