Phoebe how are you feeling?

Hi Frogelita, that’s so lovely of you to check up on me….. I think I’m doing pretty well overall I think, considering I am going largely untreated at the moment until I can apply for remicade. I have signed the paperwork and consent forms but they will not apply before the 1 st September, because that is the 3 month bracket (means I have been in my dr’s care for 3 months) – so hopefully I should find out soon whether I qualify for remi. It’s been a long, long wait….. First with the abscess which wouldn’t heal and kept getting blocked (it’s been causing me hell since last November!), then the scary seton surgery, and then when it wouldn’t heal and there was leftover sepsis…… and having to have the mushroom tube inserted to get rid of the extra infection……. These days I avoid looking at my bottom, because it really scares me and I have to make a point of looking after my mental health, I had a pretty big breakdown a while ago at work, so I just have to be gentle on myself and try to stay calm and look at the positives.   So at the moment I am just on 6MP and hopefully will get remi soon……. Hopefully then my fistula might close? But I don’t even dare to hope….. its like the hole around the fistula (that has a seton through it) is stretching, and becoming larger, so I just don’t dare to look there anymore.   I had iron infusions about 6 weeks ago and so I am anaemia-free for the first time in 5 years, and that’s a fantastic feeling. I am so grateful to my new doctors, I am confident they will take great care of me. I am a little scared of the Remicade and the side-effects I’ve heard of, please keep me informed of how you go when you start your remi, Frogelita! And I’m also a bit anxious about my drain coming out because they will try and pull it out in the surgery but if it doesn’t come out I have to have another surgery.   My stymptoms at the moment are diahorrea (as always) and cramps depending on what I eat. I am trying to do the SCD diet but its kinda ‘easier said than done’ in a lot of ways! I am trying, though…..   I just want a normal colon and a normal butt! I get very scared about the future, that is probably my most daunting thoruhg, because I am only 23, but I try to not think about it…..   How is your new seton string going? Sounds so much nicer than the plastic! Are you still using the shower sprayer? I swear, that thing is a godsend!!

Haha i can imagine it being a battle to-the-death! I am very protective of mine too, i am planning on visiting my parents in a few weeks and it's number one on my list of things to pack!

Of frogelita you are so sweet, saying you would give me your remicade, hopefully I get it soon and so we can both see how it goes for us! It does feel like its been going on forever,…… when I had that big breakdown at work I ran into a meeting room which was empty at 8 am in the morning and called my dad and just said ‘do you think this is going to be my whole life??’ I couldn’t contain myself, I just kept crying and saying “it just feels like its going on forever!” ……. That was when I still had 12 weeks to wait to apply. I’ve definitely been very down about it all, and the pain meds were making things ten times worse. It’s been a rollercoaster that’s for sure. I’ve spent most of the year in and out of hospital and surgeries and appointments and I live alone so I had to work the whole time too, and my parents live five hours away…... I just try and stay positive and think “well, I might have a bright red seton and a big ugly tube drain poking out my butt, and a ever-expanding fistula hole, but at least its not an abscess anymore!” I have to look on the bright side and believe that it will be up and up from here. I hope it is. I am sick of wearing panty liners!   I think although this disease absolutely ravages us physically and mentally, it can, in some strange way, make us better people, because we have to ‘grow up’ faster than most. I used to get mad when my co-workers would have a week off for a measly cold and I had a gaping surgery wound and constant diahorrea and pain to contend with every day, but I’ve realised, suffering is relative to the individual – for them a cold is bad, because they’ve never had to deal with anything worse. So they’re sooks. Ha!   The iron infusions have made a world of difference to me, having the energy means I feel more positive and able to tackle this thing. today is a good day, so I am feeling positive. Not all days are like this! I still cry a lot. But I’m working on it      You’re seton sounds awesome!! I want them to tee me up one of those babies!! A string, so easy to clean, and so comfy! You could sit right on it and everything! Sounds great!!! I am so sick of this tube poking out my butt, it grew longer as it was pushed out from the gradual healing and I had to trim it with scissors because it was pulling every time I loved – which wasn’t fun! I guess I’m getting used to it now, I’m anxious about how hard it will be to have it out, and anxious about anything being put in or removed from there….. but we will see.   Oh, a fistula-free life, I can barely imagine it right now!!