Berlin trip was brilliant! I just about survived, we didn’t stress too much which was nice, and spent most of the time stopping to eat at various places so I got a fair bit of rest thankfully! And of course the main reason for the trip was to check out a bronze foundry so that was really cool!
So Tuseday, the big sigmoidoscopy day.. oh my days was I nervous… seeing a new surgeon aaaand having the check up while knowing a flare was going crazy inside of me. Anyway, the surgeon was nice enough, checkup went…uhm…ok I guess.. Obviously I knew things would have changed, I just guess I wasn’t quite prepared for it. Exhausted from a weekend away and travels I was more emotional and sensitive than normal, however I am very grateful for the weekend as it took my mind off the check up and I wasn’t nervous for like 2 days before because I had other things to think of and was away from all the normal stuff. I must say my flare has got a lot better, I now don’t have that desperate toilet feeling and *knock on wood* there hasn’t been any blood for a couple of days! Anyway, the surgeon had a look, and did the silly thing of talking to me whilst doing the check up, I wish my head was more together because this really wasn’t a good idea as I was just laid on the bed trying to do deep relaxing yoga breathing to try to calm myself, so I think only half of that he said went in. Come on, who can pay attention to someone talking, and take them seriously when they have a camera up your bum – sorry but its true! Anyway, he confirmed what I knew, that I was in a flare, and I think he even said it was a bad flare… I had a lot of scar tissue and my rectum was starting to get stiff. Apparently it isn’t good when it gets stiff because it makes it more difficult to find cell changes, I did a little google search and apparently it can become stiff due to the scar tissue and several years of flares, however when I had my surgery they said my rectum wasn’t affected at all, so that doesn’t really make much sense to me, however it is something I will ask the surgeon about next time. He said he could only go 15 cm in, now I don’t know if that was because of the stiffness or if that is all I have left, yet another question I need to ask. Either way, he was very pushy for me to have a j-pouch, he said an IRA (connecting small intestine to rectum) was a big no no, but he would like to send me to Gothenburg where they do the j-pouch surgery with keyhole and with robots. He also gave me completely different success rate numbers to my previous surgeon. He then followed it up with that he really wouldn’t leave my rectum without surgery for more than 5 years. 5 years! Come on, in August it was 10 according to the other surgeon! Whats even worse is the fact that he follows it up with that I should think about children before surgery as it may not be as easy to get pregnant post surgery. Talk about stressing me out! One moment I have 10 years to decide on kids and surgery and the next it’s cut to 5! I mean kids isn’t something you rush to have, you need to feel partially ready and I’ve only just started to get my life back again after a few years of not having it fully. Yes I know there are options to everything, but still. Another thing, surgeons seems to think 30 is old, I mean come on, if I don’t feel ready for kids just yet then that’s fine, 30 is young not everyone is ready at a young age! Aaaah! I full on crashed the rest of Tuesday, I couldn’t talk about it! I went to work and we did a casting and then I went home, built a blanket fort, ate chocolate, watched Emmerdale and felt sorry for myself! Then on Wednesday I decided to get some more advise from other ostomates, see what they had been through and what their thoughts were and try to step away from all the feelings and thoughts. It’s not totally easy, and poor Axel is getting the bad side of it when my thoughts and dreams go off on crazy trails and I feel like I dont have time, I feel stressed and locked down at times. I just keep trying to distance myself from some of these thoughts and feelings for the time being. I am going back for another check up in April- May, and I just hope he isn’t expecting a decision from me because all he’ll be getting is me hoping for better news, and bringing my little black book with a list of questions that I want answers too. Yeah I have a little black book that I write down all the different questions I have and leave space so I can write out the answers too so I can go away and think about it all.
I don’t want to rush my life away, I also don’t want to have to make decisions when I don’t feel ready to do it, specially when its pretty big life changing decisions. Yes I know surgery would have a long waiting list but either way I am not ready to even think about it yet. What I find odd is how every surgeon seems to have different success rates, and how they all want to push for surgery being the best option even though they have no idea what a relief getting an ostomy can be for some people. What baffles me the most is the fact that surgeons in different counties within the same country recommend different things. I recently found out that in one county they don’t recommend any type of reconnection surgery as the rates just aren’t good enough, while in others they seem to think it is the only way forward.
I’ve not really been drawn to a reconstruction idea, however part of me would love to just do things like everyone else, but Stevie and I work so well together. I need to think a lot about everything, how life should be, what I want to do NOW when I have a chance so I don’t end up bitter or upset when these life changing things happen because I don’t feel like I have done what I wanted to do. Of course I am gonna have to think realistically about what I can achieve within the next few years, but it’s definitely something I need to do, however maybe not hold myself to it all too hard.
Sometimes life is just full of shit. No I don’t really say why me, eller once in a blue moon I might do but in general I don’t, instead I wonder what it is I am meant to learn in this life. I am guessing I am meant to learn how to deal with sudden drastic changes in life, like surprises and change in plans as I have never been too great with them. I am meant to learn to calm down in every aspect possible, with plans, with things I want to do or feel I need to do, in my everyday life and work as well as all my ideas. I am meant to learn that all dreams may not be able to come true quite how you wanted them to, however that doesn’t mean that they can’t ever. I am meant to cherish life, love, laugh, feel, express myself and cease the day!
I think maybe I should do a little list of things I want to do within a certain time. Someone I know made a list of 30 things she wanted to do before she turned 30 (she has given herself a year to do them) and I loved the idea, maybe that is something I should do…
Anyway, time for me to jet off to Bromma, Stockholm for a weekend of “education” or training to become a support person for others with ostomies. I’ve never been to Stockholm and I guess I won’t really get to see much this time either but it’s still an exciting adventure!
Freshy showered and the sun is shining! Stevie is excited to be going on another adventure and is looking slightly crazy in some funky green sunglasses! I hope you have a lovely weekend all! 💖🌞