Goodbye Immunosupressants!!! -Waves-

 My ulcerative colitis was doing much better which was great. Only I couldn't enjoy it because I was feeling so sooo sick. I was sleeping holding a bucket in case I was sick. I couldn't eat much at all. Any spice whatsoever made me so nauseous. I was sleeping all day just to get through.
So I saw my IBD nurse last week with Dad. (There was a 2 hour delay, dad was not pleased. I told all the nurses to ignore him because he was being a grump lol). I mentioned that I was feeling sick and asked for a pill or something to make the sickness less. She went and got my consultant, The wonderful Dr Darlow. He was immediately concerned that I was having a bad reaction to the meds and asked a few questions. I told him I could deal with feeling sick if it meant that the colitis is not around any more. He said no that wouldn't work, because he originally wanted to keep me on the mercaptopurine for life and increase the dose. He was very sweet and told me that it wasn't my fault because I kept apologizing haha.
   So I left the consultant with instructions to stop the immunosuppressants for a few days to see if the sickness stopped. I asked what would happen if I was better and he told me I will have to go on humira or remicade.

Humira Injections.

Remicade bag

Remicade Infusions given every 6-8 weeks in 2-4 hr sessions.

I then had a blood test. Unfortunately once again they couldn't find my vein and after a failed attempt another nurse came and had a poke around. They eventually got all the blood they need (3 tubes) halfway down my arm which was strange.

Not impressed lol

So around the third day off of the mercaptopurine I felt so much better. I even put the bucket away!. Yay.

So it has been a week and yesterday I get a phone call from my consultants (Dr Darlow) assistant. Dr Darlow wanted me to not take any of my immunosuppressants at all. When I said that I stopped them already, she just said it's very very important and I will never again go on them and told me to get rid of them. I now have an appointment in December to discuss what medication I will go on next.

The problem I have right now is I am not on UC medication at all except from asacol which is not enough. I can feel myself getting sicker everyday which kind of sucks. But hey ho. Soon I will be on a new medication adventure.

Mental health wise...I have been feeling a bit down and strange. I went to see a doctor about it but couldn't get my GP. We got sidetracked and I got a flu jab. (Because at the time I was still on the mercaptopurine and that lowered my whole immune system) Anyways he gave me a pamphlet of people to call and basically kind of hinted that it's to be expected with my OCD and anxiety disorder.
I went and saw my GP last week and she was so sweet and understanding. I have an appointment in two weeks with psychiatrist. 

Also my sister now has a carer support worker that helps her deal with me lol. Her name is Vicky and I got to meet her and she is so great. Already we have learnt a lot and it's nice that Mandy has someone professional to talk to.

I also have to say I am so incredibly lucky to have the best Sister, Mum and Dad and step-dad in the world ever. Mum makes a fuss of me and constantly makes me laugh and cheers me up. Mum and John has me and Mandy over to theirs for meals and to watch their amazing TV. Dad is constantly there on the phone and when he comes up to ours he runs us here there and everywhere. He took us to wolverhampton to see Incubus (freaking amazing) and waited outside the venue for the whole two hours to take us back and he didn't even complain about me and Mandy singing Incubus songs all the way home lol.

Update. My secret and Stigma.

Good evening. It's that time again.

So today I had my consultant appointment at the lovely St Cross hospital. My blood tests have come back and they are great. Liver function is normal and my white blood cell count was good. It's also showing that there is nearly no inflammation. I am a happy little Jo about that. So my immunosuppressants have been doubled. The doctor and nurse were very sympathetic about how hard it is to come down of the steroids. I was all bad ass and told them that no matter how I felt I am going to come down week by week until the end of the course. I mean it. I am determined. Yeahh rock on. So I had another blood test (still on 1 blood test a week).

Then I had to get home and get an appointment with my GP for my depression meds and diazapam. Now I know that I shouldn't tell people that I am on these types of medication. I am not stupid and I know there is a stigma that comes with it. There shouldn't be. I saw a problem and I was brave enough to get help. It's perfectly logical. I was even on anti psychotics for a while. See thats my secret and now it's out! It helped deal with the side effects of the Steroids and helped my OCD a lot. Right now I am on Citralapram and the odd diazapam. I am successfully dealing with housework, the finances having an illness for over 10 years. Being on lots of other medication, and the anxiety and thoughts that come with Obsessive Compulsive Disorder. I even go out now.I have to use a lot of will power and I lean on my sister and my parents a lot. So if the citralapram and diazapam means I get a little bit more help, I don't see how people can be against it.

I'm not Crazy I swear Lol

Now if people want to laugh at me and call me crazy or not want to associate with me because of my mental health issues...so be it. I'm not angry. Actually I think it's pretty cute. They are naive to these issues and it's kind of nice in a way that people can keep that innocence. They obviously haven't dealt with any of the issues me and many others like me have dealt with.
I just hope if they are going to think like they do, that they don't have issues in the future because they would feel awful about what they did wouldn't they? :-)

An update.

Good evening. I thought It was about time for a little update on how things are going whilst the sisters out with her boyfriend.

I went to a bootsale today. Huge achievement! I kept calm. I gave in to a compulsion though. It's actually an interesting example of how ocd can make ya feel. Me and mandy were walking back to the car and mum was walking back to the car from a different direction. I get this thought. If I get there before her something bad will happen. Stupidly my heart starts beating faster I feel the panic rise. My face gets hot. In a second I suddenly feel like If I don't time this right someone I love will die today, it'll be my fault. Rationally that makes no sense but it's all my mind can think. So I had to slow down and match the speed of mum walking. Making sure I get there at the same time. It's So stupid. Lol.

I'm starting to taper down of the pred by 5mg every week now. Whenever I'm on the pred a lot of strange things happen to my body and mind. It's well documented that this drug can send you totally crazy by the nickname 'Hell drug'. I'm feeling a bit emotional. I cried at the awkward family photos book yesterday, it seemed so beautiful. lol. But the most worrying is the rage. Oooh the rage. It can be something small but I want to just smash absolutely everything. I get so hateful and before I know it I'm like the freaking tasmanian devil running around all angry you could throw any WWE wrestler at me and I will bring them down!. I've cried in to my sisters arms in complete frustration at it.  It just consumes you. The thing is I am not an angry person at all so it's so out of character. I just have to keep reminding myself that it's chemicals. Just chemicals.

I'm pretty hungry all the time aswell and lastly in the moan fest against pred my faaace. Bloated moon face is back. Everytime I see myself in a reflection I make frog noises. Mandy tells me not to but y'know it makes me laugh.

She made me feel better about myself but dyeing my hair red. I learnt I look awful ginger.  But nice red.

So yeah. I am taking all my medication and I can honestly say that. I feel really sick a lot, and the cramps in my stomach can get pretty bad. I'm still having to run to the loo more times than I should whilst being on all the medication. I have to email my IBD nurse about it but I don't wanna bother her.
The asacol has made me bruise a lot. Nasty bruises, I'm thinking of getting some cover up for my legs so that on holiday my legs won't look all bruised.

My sister has hurt her foot which sucks. She hobbles around the place now. She's on anti-inflammatories. She's not working tommorrow and probably not monday, then she has to go back tuesday. I just hope she doesn't damage it more.

So yeah... all in all I am feeling pretty happy. Doing drawing again which is good. Tattoo fund is over £70. Now I need to think of what tattoo I want.  I'm keeping positive.

Currently ejoying these boxsets. 

Corey taylor and back to Horley

I went to Corey Taylor in Birmingham. It was pretty good but of course my UC and OCD made it a little awkward. The thing I have learnt though is to not dwell on the bad bits. In the interest of honesty thou I will dwell a little. It was only as we got near the venue I suddenly got panicky and needed the loo. My dad took me and Mandy and her boyfriend because he is a sweetheart and knows I would never go if I didn't have him there in case anything goes wrong (panic attack or an accident). I always panic when getting near the venue. Everytime. The tears. Once or twice before I've even jumped from the car in search of a loo. Thats the desperation of it.
Anyways we got there and I went in a pub used the loo and we joined the line. IT TOOK FOREVER. I was in tears. Mandy and her boyfriend kept calming me down. When you think you're gonna have an accident it's the worse and when you don't know how long till you can get to a loo, urgh. Then you're crying an panicking and people are looking. So the anxiety is just unbearable. BUUUUUUT.....I did it. I made the line. I got in the venue. I enjoyed the concert. I stood with everyone. Made it home.

Another event that happened is we went to Horley where we used to live and went to school. We haven't been there in 6 or 7 years so it was a pretty strange experience. I felt awkward because I am ashamed that I still haven't got the illness under control and I am ashamed that I don't have a job because of the illness. I know it's not my fault but most times I feel like I am doing worse than I was when I was diagnosed. We had arranged to meet up with a few people and I'm pleased to report they were all understanding and nice. It was good. I also found a lot more of my confidence that I had lost over the last few years.

Me and Dad. 

So Medication update-. I'm now on prednisolone again (grrrr) and I'm on autoimmune drugs, I have blood tests every week which is annoying as I have to get a cab there. I was put back on the asacol (I stopped taking it accidently woops). Whilst on the trip my back and what I presume is my kidneys hurt like hell. Throbbing pain. I was worried but after a few days it was better. I have bruises everywhere! I think it's the asacol. I'm still on my depression meds which are working good and I have diazapam for when I get upset.

I'm feeling angry again. But I just need to stay chilled. I am concerned that I my tummy is still playing me up even on the pred but I really don't want to go back to the hospital so quick so I will give it a week or two before I get in touch with my IBD nurse, Sonia.

Mandy is going to die my hair bright red this week! yay. 

My rocks! Mandy and Dad. 

June/July

I deleted this blog. But I have undeleted it now.

The last few months have been very very tough. I was put on prednisolone and that sent me a bit crazy to be honest. I put up with it because I knew it would help me get better. I started on 40 mg and went down 5mg every week. Well by 30mg I was very depressed. I was crying all the time I could hardly get through the day. I went and saw a Doctor and was put anti-depressants for the ocd, and anti-psychotics for the anxiety. They zonked me out a lot.

   So I continued. I went in for my endoscope on the 1st of June. I refused any sedation. What the hell? Why would you do that Jo? Well first and foremost I wanted to be out of the hospital as soon as I could and second why the extra risk?

Preperation room. 

So the endoscope begins. My consultant straight away said he is not happy with what he is seeing. "OOOh that must be very painful". Ulcers. Can you believe it? Even after all the prednisone I get the stupid ulcers. So all the pred for nothing. Afterwards my consultant comes to talk to me. Then I am taken in to a room with a nurse and asked all these questions about how I feel with the diagnosis. She was so concerned and very sweet. All the doctors were really nice and supportive. 

So back home. I'm on no meds getting worse by the day. Feeling down. I go back to the doctors and get my depression meds upped. I have finally got hold of my consultant's assistant and managed to get an appointment. I also got a letter saying that he hopes to put me on immunosuppressant's.

So thats the negetives. 

What about the positives...

It's been all about the uc lately. Everytime I think I feel awful the next day I'm like 'pah! yesterday was nothing. compared to how terrible I feel today'. Still, I am a great believer of everything happens for a reason and instead of thinking about how awful this disease is. I try and think about how nice it is to curl up in a blanket with a cup of hot chocolate, watch some animated batmans and really enjoy the time I'm not on the loo!

I've had this disease since I was 14-15 so that makes it 9 or 10 years I've dealt with it. I won't deny that I sometimes feel like nothings changed since that first year. I still find my body so unpredictable and making plans for things like leaving the house and trusting that my UC won't play up seems near impossible. I'm also terribly tired of medications working for a couple of months to help then things getting worse again. The consultant's and blood test and threats of another Stigmoidoscopy. Not to mention the accusing looks from the doctors when you don't get better. Like I've done something wrong.

Then again. I was reading Michael J Fox's book about parkinson's disease and saw that he referred to Pd as a 'gift' because it lead to so many new experiences and changed his perspective on things. That got me thinking, as hard as it seems could UC be a 'gift'?
    What have I got out of it? Well first off me and my sister are so incredibly close now. Before I went in to hospital we would yell and bicker both of us nearing our teenage years, we couldn't be in the same room without arguing. I could never back then imagine we'd be sharing everything now. Living together, money, A dog, drawing, Supernatural, Batman, House, Mentalist, Books even clothes! We hardly ever argue now and when we do it's because of concern. You could say that might have happened anyway without UC. No. She has looked after me since the day the doctors admitted that there might be something wrong.

I remember being in hospital and how terrified she was seeing me there. When I got out of hospital I was so exhuasted I would just lay in a cover on the sofa all day between running to the loo. she'd always be there fussing over me. She still does it. In school some stupid boy a few years older than her said something like "Did you hear your sisters Dead" and she punched him! Square on the nose. Lol! My parents were called in to the school and everything.
Later she quit college for me. She gave up her dreams for me. She never ever has held that against me. She has never ever called me a burden. This uc experience has made me see how much She, my little sister, the little brat she was changed so quickly in in to someone who is always there, who takes care of me. Who on Monday came home early from work taking the rest of the day unpaid because she wanted to take care of me. Run me a bath, make me something to eat, hold my hand while I fell asleep and stop me crying. She's only 21 and I think she is amazing. If this was a parallel universe where she was the ill one I hope so much that I'd be as caring as her....I doubt it lol, but I can hope.

Uc has also made me realise that normal is good. I am so happy that I have a house we rent, a great relationship with Mum her husband and my Dad, and of course Mandy. I handle our money Okay, we don't have loans,credit cards or store cards. The best days for me are drawing, watching a bit of Tv, listening to some music having a nice dinner and being up all night not because of uc but because we're on our laptops sending each other music files.

Ramble of the sleep deprived.

The cons.
Oh dear. A bad night. Thanks colitis. woke up at 11.30pm having gone to bed at 11 and spent then until 3 30ish running to the loo. Then even when I don't have to use the loo anymore the pain in my stomach means there is no way I will get to sleep. I'm going to ignore all the blood because I am so rubbish at taking my medication and I know it's my own fault.


The pro's.
I have an awesome android app called 'the pulse' and I literally spent the whole night reading every article from all the papers linked on it. I learnt an awful lot. Like Did you know Rastamouse is voiced by Reggie Yates? Trust me, at 4 in the morning that's just the most fascinating thing. lol.

   Also my dog was making me laugh by scratching at the bathroom door. Usually he does this out of concern but last night (this morning!?) he just seemed more peeved that I was up. Sometimes it's like living with a parent. If me and Mandy are up real late he will sit by the stairs and stare at us until we go to bed.

anyways...I best try and sleep. Really I'm just gonna watch some more Batman:brave and the bold. Which is the must trippy, funny and fantastic Tv show I've seen. Love him.

Oh my God she went out of the house!!

This. An appointment to my Doctors. No big deal. Well you should have seen how upset I got by this.

Me and Mandy were out wondering round town (she makes me go out at least once a week) doing a little bit of shopping. I just couldn't stop thinking about all the mess in the house and how we should be cleaning instead. My sister said how we'd sort it later but I got myself very upset over it. Then it happened! She stormed off. I texted her to come back. She told me I was "Out of control". Referring to the fact that my worrying and anxiety was overtaking me, I guess.

Well she did come back. She gave me this. She says that the shock and hurt on my face made her feel really mean.

An appointment. This is to see my doctor and ask to go on some anti-anxiety medication. I'm so suspicious of doctors. I had a theory that they gave people cancer or other diseases if they get bored of them. Like an underground network. I don't trust the medication they give me. Rationally me and my therapist talked that through one session. Still I can't help slip back when I see a doctor or consultant. I spend so much effort trying to calm myself down. It's just a huge stressful thing.... Plus if there is a network who is to say my therapist wasn't a part of it and trying to cover it up.

So yeah you can get why I see an appointment as punishment. We came home and I went straight to the sofa and cried my eyes out. I felt really truly betrayed. Like I said to her, she's okay to go to the doctors as punishment if we have an argument. If she argues with me I don't have the luxury of calling her out of control and getting a doctor to sort it.

Now I'm calm and rational I see that my worrying is getting worse. I just can't stop it. I won't trust the medication as far as I could throw it but I am sure I will take it. Just to please Mandy. Make her life a little bit more comfortable. I'll see if I really go tommorrow.

In other news. I went out!!!

The Secret Egypt exhibition launch at the Herbert. I went with Mandy, Mum and John. I was so nervous. We got to Coventry and I got out the car and started walking but suddenly it felt like a movie. All the cars, and Lorries, and People and the noise. The lights were blinding. I just felt everything wizzing and I couldn't catch my breath. A panic attack. CONTROL YOURSELF JO! And I did. I remembered that I needed to stop the adrenaline. Breathe normal, carry on. Distract myself. My therapist's voice pops in my head 'self soothe' 'don't catastraphize'.

We made it to the gallery and it's beautiful and so many people were there and I was wearing a dress(!!). The artifacts were amazing. I love Ancient Egypt. I have so many books on it. I probably spend half my life watching documentaries on pharoahs. I have become somewhat of a fan-girl for Akhenaten. They had Akhenaten stuff there. Just awesome. In the true sense of the word.  They had replicas which is explained in the exhibition, and real stuff including a real Mummy. All the tiny jewelery was amazing.  Fantastic. Really enjoyable. I learnt a lot. What I still can't get over is just how amazing it is to have something from 2,000 to 3,000 years old here, now, being admired. Wow!
We're going to Birmingham to see what Egypt stuff they have soon. Hopefully that will be just as great. Spoke to Dad on the phone and he said we should go to cairo. How amazing would that be.

We came out of the gallery and Coventry Cathedral (which was opposite) had the bells going. The others wanted to go and see. All I could think of is how much I needed the loo. That familiar panic set in. I thought fuck it! This is a great moment and my illness has already ruined so much and it will not ruin this!. So we saw the bell ringers. Then we admired the statue of Lucifer and St Michael which in the dark with the bells and the rain is the most scariest amazing thing. A proper fantastic, remember for ever moment.
  Mum and John dropped us home and I was buzzing. I had seen all these amazing relics. I had overcome panic attacks, I had stood amongst normal people. I had even worn a dress. I had experienced these amazing moments and I didn't even have an accident. Great evening.

The world crashes in. I've got new furniture yay.

We ordered some flat pack bookcases from Ikea. Slowly and calmly me and Mandy put them together without incident and without argument. Looks really good I think. 

I wanted to sort the DVDs by colour. But Mandy said no 

and I settled for doing it by category. 

Mum and John took us to homebase and we got a few bits and bobs like a Tv Stand. (Which we also put together).

And we bought my favourite thing. A New rug. 

It was in a selection of sale rugs. This was at the bottom

and an identical one was at the top. I NEEDED the bottom

one. There was no way I would take the top one because

it was a bit evil. 

So the living room looks great. Much more relaxing, which is important seeing I spend a lot of time home alone. I was so proud of myself for going to Homebase and then the furniture shop. I was so nervous. As soon as I couldn't see Mandy I just feel like the world was ending. It's like I'm a kid. 

When I'm out thou, I can get in to a state that I don't care how manic or mad I may look to other people I just do what I can to get through.

I had a couple of bad nights. Both uc and OCD wise this week. Me and Mandy had a minor argument...I can't even remember what it was over now. Thats how minor it was. I had this revelation. It's like the whole world was falling down around me. A voice said "She hates you, You ruined her life, She's given up so much for you". I couldn't cope with that. My therapist taught me that I have to just stop those thoughts before they escalate. I have to distract myself and ignore them. I do this. A lot. I'm great at it. Sometimes thou like this night I don't get there in time. 

Over and over again I involuntarily thought of how much she hates me. I would have done anything to rid the feelings. So would Mandy. She tried. I had a shower, got changed, Tried to sleep. She dragged me downstairs where she had made up a bed on the sofa. She got my laptop out. She got me a drink. She put on the TV. She wouldn't leave my side. She tried bless her heart. I wouldn't listen. Why would you listen when you realise that it's all messed up?. There's no point. 

I cried for 3 or so hours. I don't quite know how to explain how I felt. Everything changed. Everything was darker everything was different. Nothing was real. I didn't even realise I was crying. I've been depressed before. I used to lay in bed all day just staring at the ceiling. I felt like I was slipping again. The worst part was I didn't even want to fight.

I fight everyday. I fight feeling down. I fight the thoughts that I don't want. I fight the compulsions. I fight the obsessions. I fight the anxiety. I fight the feelings. So it's a bit of a disaster when I give up. When I give up, I am what I was that night. The Living Dead. I hear and see but it doesn't go in. I just lay there. Crying. I don't even have the energy to move. 

Then My UC wants in on the evenings events. I'm sure you don't need details of what happens when I so nicely put it am  "stuck on the loo". I was dizzy, running back and fourth to the loo, Holding a bag in case I was sick. In the early hours of the morning I got in to bed and somehow fell asleep. In the morning me and Mandy had a heart to heart. Her sitting on my bed. We agreed if I wasn't going to try for me I should try for her. Usually I'm all good doing it for me but in those moments when I'm not. I've got that. So for her I got up and dressed. I put on my imaginary boxing gloves and rejoined the fight. 

Last night In another low moment I asked my sister to not give up on me. She cried. She said that she would never. I'm incredibly lucky. 

Welcome Welcome. Therapist.

Let me introduce myself. My name is Jo.
When I was 15 I was diagnosed with Ulcerative colitis. An incurable bowel disease.  Then about a year ago I was also diagnosed with Obsessive compulsive Disorder. That makes life quite...Umm interesting(?).
 
 I don't exactly know what I hope to achieve in writing this. Giving support? Recieving support? My opinions? or just a way to put in writing what it feels like?. Maybe it will help organize everything?. Secretly I think I hope to look back on this in a couple of years, y'know after they find a magical cure for both UC and OCD. Lol.

I don't want to sound smug, but I think given the circumstances I do pretty damn well. I owe alot of that to the fact that my sister is a harsh bitch who won't let me feel sorry for myself. But then again when I'm stuck on the loo for hours feeling as rough as a dog because of Uc  and having panic attacks because of OCD. Getting myself in to a right state I'm not so smug, and don't feel like I'm doing so well.

So here I am. Entering in to the great land of blogs. God I feel full of myself. Do I actually expect anyone to read this? Is that sentence really just a way to get reassurance from anyone who happens to read this? Am I an attention whore for doing this?. Am I an attention whore for saying that?....theres my anxiety again.
 
Just so you know I have just finished Cognitive behavioural therapy. I done it for over 12 months seeing my therapist every 2 weeks. On Wednesday It was agreed that session would be my last. So here I am. Out in the big bad world with no therapist. Scary stuff.
I need to book up an appointment at the doctors to get some anxiety meds.

With UC, I am on asacol only at the moment. I take immodium at least once a day. I know I should be on more meds. The blood is back. But I had just finished a course of steriods when I last saw my doctor and he said I shouldn't be having blood.  Um. Okay....Then said to cut out milk incase it was an allergy. It made no difference. Then he set me up for another Sigmoidoscopy but told me to cancel it if I felt better. *Looks guilty* I cancelled it!. I know I shouldn't but I panicked. The hospital phoned to ask me if I was going and I said I felt better. It all happened so quick. Also I don't want to go back on steroids. If it gets worse I will book up an appointment.