Here is a letter to my younger self about my life in the future living with Inflammatory Bowel Disease without giving too much away, from what its like to live with it, surgery, pregnancy and random tidbits.
You may be completely confused right now as to what the heck Ulcerative Colitis is; but the main thing you need to know is it won’t stop you from living your life, it will just be really inconvenient! You will still be able to get good grades even if they aren’t what you truly would have hoped for, but spending the next 4 years in and out of hospital is the main reason behind that. This letter is going to cover all sorts of things in your life.
Steroids will be the bane of your life, they will make you look like the stay puft marshmallow man but they will also be the one thing that makes you feel better even for a short amount of time. But if you actually take all the other tablets properly in the first place you may actually get some relief and experience remission before resorting to emotionally blackmailing the consultant you fancied!
When it comes to friends you are pretty damn lucky that yours don’t give up on you; maybe that’s because you got so ill so young and it was just normal for them and you. Don’t sweat telling your boyfriends if you don’t feel like it, you only have two that really mean anything long term, one who you marry and they are there through hospital admissions and surgeries. Yeah man surgery!
You need to research the shit out of having a jpouch because the surgeon who does that surgery is an arrogant son of a bitch. HAVING A BAG TEMPORARY OR OTHERWISE IS NOT THE END OF THE WORLD! It honestly isn’t that bad but you do need to know a bit about it or you will kick off like a spoilt little brat when a stoma care nurse comes in and starts drawing circles without explaining, which will cause a lot more issues than intended. Or you know simply asking to have your surgery done in the Friarage which would mean not only would you be closer to friends and family but it would be a better more caring surgeon.
When you have kids (yeah that really happens even though you have spent your life saying it won’t – it’s true when they say everything changes when you meet the right person) you definitely want to explore the path of Pouchitis because if it gets diagnosed early enough your first pregnancy might not be as painful since no one expects it to be Ulcerative Colitis in your Jpouch.
You never really go into remission or are cured after your Jpouch surgery but as the flare symptoms change you wont know but just think that this is what life will always be like until it hits you like a wall. Typically after you have finally started exercising for you and the only numbers that mattered were how many miles you racked up that week. But at least you are in the best mental state to suddenly be struck down by the monumental pain you will suffer this time around. Trust me you thought UC was bad? It’s nothing compared to this because you aren’t used to this type of chronic pain let alone trying to deal with the pain, go to work and be a mum. Being mentally stronger due to the effect exercise had on your brain allows you to make the no brainer decision of having a permanent ileostomy. Although finding out your Pouchitis was diagnosed over the phone without any visual/physical tests being done is pretty annoying especially when it’s a junior doctor who refuses to send you home till you have had more cameras up your butt!
Sure it’s a scary prospect but the decision is yours and yours alone; but that doesn’t mean it’s plain sailing because another self assured surgeon who thinks they are qualified in psychology turns around and says you aren’t mentally strong enough for a permanent stoma. Let’s face it this really f*cks you off since you hate being told what you are and aren’t by people that don’t know you. It is kind of just luck that you get admitted repeatedly into the Friarage since then you are under the care of a surgeon who isn’t a knob, who will take the time to do the tests and actually realise you need this surgery.
Your next pregnancy will be a breeze in comparison to the first and although it has it’s complications it is pretty manageable. But once again you will have to fight your corner because no department actually bothers to talk to each other and find out if anything overlaps when it comes to pain or inconveniences.
No matter what life throws at you, you are actually pretty damn strong believe it or not. Even though at times you will hurt yourself, you will let others hurt you and you even contemplate suicide, your life and what you have to give means more than temporary anguish. Your husband, kids, friends and family heck even strangers may need you in their life more than you realise. Your life is yours to live don’t let disease and pain stop you from achieving what only you can your own happiness. You will always have this letter to look back on when times get tough.
Lots of love
Sure this whole letter sounds to me like a lamer version of Baz Luhrmann – Everybody’s Free To Wear Sunscreen but remembering what Doc Brown from Back To The Future says “Roads? Where we’re going we don’t need roads!” no no not that one this one “No! Marty! We’ve already agreed that having information about the future can be extremely dangerous. Even if your intentions are good, it can backfire drastically!”
Have you written your younger self a letter before? Give it a try you never know what you might learn about yourself.