Hey Crohnies and Lucky Coiners,
As a lot of you know if you’re following me on Twitter, Instagram or watched me on YouTube in my introduction video (if you want to follow me now it’s CrohnieClothing on all of them) that I have a secret. I’ve spoke about it a lot recently and I’ve in all honesty been terrified to tell anyone apart from immediate family for the past few months. I’ll have to explain this fully so it may be a long post but as always I’ve promised to be open and honest with everything so it’s hard to condense it all.
Basically I’ve been bleeding a lot from my bum when I go to the toilet, so much so that I sometimes bend over and it can come out and ruin my underwear or I need to do a dangerous run to the toilet to avoid it coming out. It’s been a whole year since this happened for the first time which means the remaining intestines inside my bum are in a bad way, meaning they need to come out. This wouldn’t be too bad if it wasn’t for the severity of the surgery and also how it will effect my fertility.
In March I found out the surgery I need will leAd to me getting what is effectively a “Barbie Bum” meaning my whole sphincter and remaining large intestines will be removed and after how crazy bad my insides were in my last surgery (organs stuck together due to scar tissue and adhesions including my intestines falling apart while inside me) this one will be a big one. I’ve been told that this surgery, due to how much scar tissue/damage will be done around my uterus and reproductive system I have an extremely likely chance of becoming infertile during this surgery.
I’m pretty much left with a few choices surrounding this I either sign up for surgery right now, give up on having children in case I am ridiculously lucky and manage to have some kind of miracle pregnancy in the future. We could also have a baby right now, I could get surgery once the baby is born and be effectively missing from their life and in no position to be a mother for months while recovering and leave a huge burden on Stuart or I could also decide against the surgery that I really am starting to need and just progressively get worse for the time being and the surgery would be done as a last choice and when I’m an emergency case which is not what my doctors would recommend. I’m really heartbroken about this because it means I may never get to be a mother genetically and it’s really freaking me out.
I was also told about next week discussing the chance to freeze my eggs so they could be implanted in myself if it’s viable and potentially a surrogate (however the surrogate idea is something I’m strongly against due to not wanting a third person being involved in something such as this and also simply not being able to afford the 10,000-15,000 that is usually paid to cover their expenses). It’s taken so long to be able to talk to you all about it because it’s only really now I’m not going to start instantly crying when it’s brought up and I’m going on Thursday with Stuart to see the surgeon so I need to be able to face the problem head on.
As for our decision, right now we really have no idea what to do because all the options sound bad to me. Who ever thinks at 23 they’d have to face the prospect of not being able to have their own child, especially after doing everything they were told to so they would be able to have a “normal” life. It’s absolutely heartbreaking if I’m honest and as it’s probably easy to tell we’re in this horrible purgatory stage where we have no idea what’s happening and even though we’ve had months to try and decide we still can’t. I guess we’ll just need to talk to my surgeon and the fertility doctors to see what we should do but in all honesty it seems hopeless at the moment.
I’m not writing this for sympathy, I really hope this doesn’t turn into people treating myself or Stuart differently once this comes out but I do just want to spread awareness that IBD is not “like IBS” and is actually a really serious autoimmune disease that can affect any part of your body from your head to your feet. I know I’m a really severe case what with having an ileostomy, this other problem with needing more surgery and how bad my symptoms are daily but this is something that needs a cure and I really hope that in raising awareness on this disease it’ll lead to more funding for charities such as CCUK and Cure Crohns and Colitis.
Thank you for reading,