My week in review

    So, it's been a rough week. I went down to just one a day on my steroids and I guess my infliximab still wasn't working, because I got really sick again. 

    And it was so fast this time. I'd been having just slight pains for a few days, and then by Wednesday, I was in so much pain and exhausted, and just struggling to keep anything down. Even the sips of water I was having, would come back up after a while, I guess once I got too much of it sloshing around in my stomach it just couldn't cope. 

    And my lips were so dry and cracked, it was awful. 

    In the end I rang Dan and begged him to come home from work. I just couldn't cope. 

   Well, I emailed my IBD Nurse, and she said I had to go for emergency blood tests at the doctors surgery and my heart broke. I honestly didn't think I could do it. And not because of the needles, I'm used to them now. But because with my back and stomach cramping, and constantly being sick, I knew the car ride was gonna be torture. 

    I felt so sorry for Dan, because I did not want to go. I just wanted to go to sleep and to be left alone, and he was trying to get me out the house and into the car, and I was just crying and begging him to let me sleep. 

    I was just so burned out and really didn't feel as if I could take anymore. I just wanted to curl up and die. 

     But of course Dan wasn't going to let that happen.

    So, he got me out to the car, with my sick bowl tucked under my chin, and Kye with my water bottle in the back, passing it forward to me whenever I could bare to take a sip. And all I kept thinking with every agonising bump in the road was, "We're not even there yet, and I still have to do this all the way home." While praying, that I wasn't sick at the doctors, with a mask over my face. 

    Thankfully, we made it there, and in and out, without me throwing up, we even go part of the way home before the vomit hit. 

    But omg when it hit, there was so much of it, and it just kept coming and burning my throat and my mouth, as it was so full of stomach acid, and poor Dan, he isn't great with sick, but he pulled over and was asking me if I was okay, and passing me tissue, but it just kept coming. And it was just all really watery and vile smelling stuff. 

    And when we got home, I was just on the sofa and out, I had nothing left to give. 

    After that things got a little bit easier. My IBD Nurse told me to try having some Jelly, as I might be able to keep that down easier than the water, and she was right, that worked. And then she gave me some tips on other things I might be able to keep down. So slowly I started to get a little bit more energy back, which made it easier to cope with the pain. 

    The next day my IBD team had a meeting and decided that I needed to come off the infliximab, that I wasn't reacting well to it, because of the all the hair loss, jaundice, seizures, migraines, rashes, chemical burns and well the list goes on and one, and as it didn't seem to be working anyway, it would be better to switch me to a new drug. 

    Humira. I was so happy. I have wanted to get off infliximab so bad, and I know Humira still has loads of nasty side effects too, but at least its injections that we can do at home, so Dan won't have to take days off work anymore, to take me to the hospital for infusions. 

    I can't start thought for about two weeks though, although my IBD Nurse said she will try to speed up the time it takes for them to get to me. 

    I won't lie I am a little bit nervous, because a lot of people say they hurt like hell, but it can't hurt worse than a flare, and if they work, it'll be worth it. 

    Although Dan might have to do the first few for me. 

    Then yesterday, I wanna say today, because I have been up all night with pain, and my body clock is all messed up, but anyway, yesterday my IBD Nurse got back to me with the blood results and they are not good. Really high inflammation again, so she got me an emergency prescription of antibiotics and steroids. Which I have to collect today. Although I still have steroids left over from the last lot, so I have already been able to get back on them. 

    She also said that if I get worse, I have to go straight to hospital, so I guess they are worried about sepsis again. 

    But I know I'll be okay, now, the steroids and antibiotics work really well and really fast, and then I just have to keep everything crossed that the Humira works., because I have really had enough for flares now. 

    I've also got the liquid diet coming from the dietician, so when I am flaring I can give my stomach a break and take some pressure of it, and hopefully won't get this sick again. 

   I'm on so many meds now though, and they are adding in B12 too. 

   But that's Crohn's life I guess. 

 This is what I am on now a day, and that's without the laxido,  my pain meds, of which I am currently taking many on a daily basis, and the B12 and the antibiotics that have got to be added in. Oh and the antihistamines, ( I hope that's the right name) That I stopped taking because they weren't stopping the itching, like they were supposed too. 

    

    On a happier note, my new wig came and it's great. It's as close as I could get to my normal hair all though its a light brown, because I couldn't find anything closer that looked like my hair style, but with a fringe as I was having problems with the pink one slipping back and showing my hair line. Although with the new one being so close to my real hair colour especially at the roots, it's hard to tell when my hair is showing anyway.  This is it...

And me wearing it the day before when my face was all swollen. 

    I also got a wig fix band, which is meant to help with the slipping too. I tried it for a little while and it does hold the wig more securely, I didn't even have to pin it. Although, this may be irrelevant now, as with the infliximab gone, my hair will hopefully come back. 

    I'm not sure if hair loss is a symptom of Humira or not, but if it is it must be less common because I don't remember seeing anyone talking about it in the Crohn's groups. 

    So fingers crossed. 

    But the wig fix, seemed super expensive for what it is. I mean £25 for a silicon head band with little nobbles all over it. Still needs must. 

    Well that's it from me, I hope you are all doing okay, and coping with the lockdown okay. If you need someone to rant to, feel free to rant to me, after all you have to listen to my rants all the time, so it only seems fair. 

Love and hugs 

Joss xxx

And remember to stay healthy, cause the alternative sucks. 

     

Week in review

    It's been a tough week, I spoke to my specialist on Monday, and didn't exactly get the news I was hoping for. I mean it was nothing majorly bad. Just, I guess, the straw that broke the camels back I guess. 

    So basically, my body is already building up antibodies to the infliximab so they want to add in a second chemo drug to counteract that. Which given all the horrible side effects I am currently having from the one they already have me on, pretty much broke me. I couldn't sleep that night and only managed to grab a couple of hours in the early morning after having a good cry. 

    He also talked about surgery, it wouldn't be a cure, as there is no cure for Crohn's but he said if they remove the infected area and the area with the stricter and sort out the fistula's we could at least be starting with a clean slate, and it would make it easier for the drugs to do their job. 

    But here was the real kicker of the whole conversation. He said, that he thought I would need to stay on Chemo for the rest of my life!

    And I'm not gonna lie, that hurt. I always had this belief that given time, or surgery my Crohn's would settle down and I could stop having the infusions. But apparently my Crohn's is to severe for that to be likely. 

    Now, I've managed to stay pretty positive throughout this, but there are times when it is just impossible to keep smiling and joking and this was one of mine. I felt terrible and I have spent most of the week feeling pretty low. And just not really having the energy to do anything. 

    I've forced myself to though, in fact Kye and I have got caught up on our forensic psychology course this week, as we started it like two weeks late, as that was when I discovered it and I've force myself to get other things done, because you have to don't you, but I've felt so low. 

    And then couple of days ago, I got a letter from my head IBD nurse, telling me I had to self isolate. So while the rest of Cornwall are laughing it up in tier one, I'm still in frigging lock down. I mean it doesn't make a huge difference as we don't go out a lot anyway, but I'd been craving a trip to B&M and was looking forward to December starting, so I could and then this. Grrrrr. 

    I know, I know it's for my own good, and it's not safe to be running about out there with a compromised immune system, but still, it sucks!

    Still I guess it makes the whole Christmas thing easier, as poor mum was gonna have to choose, between her 3 daughters and each of our families, as to which to have in her bubble, as you only allowed 2 other households, so now I'm not an option anyway, she can see my two sisters and their kids without feeling guilty about leaving me out and I can pretend, that I would have been one of her choices, even though we all know I wouldn't. Not unless she just broke the rules and saw all three of us anyway. 

    And no I am not having a pity party about that, trust me, when it comes to our family, I am the black sheep and have been for a very long time, but it's a long story so I shall spare you the details. 

    But to give you an idea of our family dynamic, I have, had more facebook friends ask if I am okay and message me to see how I am doing, than I have brothers or sister and bare in mind I have eight brothers and sisters. And only one of them has commented about my condition and that isn't messaging to ask how I am doing, that's literally just commenting on facebook posts. 

    Thankfully, I have a lot of awesome friends, so it doesn't really matter, but still, it stings a bit. Especially right now when I am feeling so low. 

    Any who, that's pretty much me this week, a self pitying, miserable, tearful person, I hope your week has been better. 

    Love and hugs 

    Joss xx