Where to begin, the dreaded world of drugs, swallowing, injecting, pumping, outpatient appointments flying through the post, investigations, daren’t mention the laxative staring at you? No room to stuff your medicines in draws, handbags? Men where do you even start! Medicines on the floor (oops my cat sniffs a lot), rolling around cupboards, where to stash 20 bags from the pharmacy. Who knew?
My Diagnosis: Large bowel Crohn’s colitis, Pan Colitis (the whole length, including bum), three chronic fissures, small fistula (and a partridge in a pear tree). No surgery as yet, so medically I rock.
Back in the day = 2007
Asacol. Mezavant. Mesalazine. Octasa. Pentasa. Salofalk (take your pick on brand!)
The small red tablet, take eight a day they said, you have left side colitis this will keep it at bay. So I did, 20 years old, not a care in the world, apart from myself, my friends and the social. So what my side hurt a little and the poop was horrendous, it was okay, denial was on my side. Did they work for me? yes for a little while, the inflammation settled from what I remember, a lot of inflammation comes from stress, especially down my side, so I am not sure if it was placebo or what, but they made me feel okay. The thing that freaked me out the most was the shells being pooped out, how inconvenient Asacol, like the inflammation wasn’t enough and you decide to leave your medical shells in my waste – hardly thoughtful! If you get given these I wish you well, they really work for some, with low-grade inflammation unfortunately for me I had to move on, but sometimes I still take these as an extra when I flare and they do provide a response. If you can ask for the brand Mezavant XL, they are slow release capsules, I took two in the morning and then I didn’t have to worry about popping any more through the day – we all have lives right… everyone needs slow release.. We are not robots!
When you google this, it’s not very detailed – they belong to a group of meds called aminosalicyates which work on the cells apparently, pretty safe didn’t cause me any harm.
Prednisolone Foam. Mesalasine Foam. Rectal Enema
Oh the dreaded. Why?! So you have a sore bum and then you get a weapon of mass destruction that blows foam up your bum with a plastic tube. Firstly, the tube, needs to be inserted somehow without dying and then you have to hold it in! I’m selling this I know…
Seriously though for me, in the words of the sports brand, just. Do. It. If you have rectal disease like me, a couple of days and the difference is great, nothing like a little bit of local action to make you feel better, not nice I know. My tips are have yourself prescribed a big box of instillagel and use before. I had never used instillagel until very recently, I never knew this beauty of a thing even existed – so I have spent 10 years of my life trying to navigate my way around enema and plastic tubes to learn of this hospital anesthetic gel they use for catheter insertion!
Instillagel comes in syringes and you can pump it in your bottom or round the edge – 10 minutes of that stuff and its slippy slidey bliss (sorry I’m getting over excited) – anyway it works give it a try don’t suffer!
GTN Cream . Rectogesic
Oh the headache! Rectal fissures.. well we will come on to that, if you need GTN then I know your bum has probably had enough of life. I have three chronic fissures and have suffered a very long time, GTN has been great at times and the fissures have gone, but every time I flare I get back the same problem, so this cream is more of an aid for me than a healer, but I heard for some its great and does the trick. I never get over that rush in the head though, i’m so sensitive, be interested to see if anyone doesn’t ? again us IBD’ers don’t get it easy do we ? the things we have to go through to get some relief!
On the subject of relief and bums, I bought this contraption from Amazon that you put in the freezer that I highly recommend its called ANUICE. It was slightly pricey at £30.00, but I was desperate for something cooling and natural (avoiding cream as pregnant). It’s a little plastic device that you put in the freezer has a thick end and a thinner one with a plastic piece if you wanted to stick up your bum for internal hems, it works, it really shrinks any swollen bottom parts, I just liked to sit there with the pressure on whilst it worked it magic. Here is the link for those that want to give it a go… sometimes the creams are too much and natural should be the way forward.
Prednisolone / IV Hydrocortisone (the devil)
For all that are new to IBD, recently diagnosed, its a fact of life you won’t avoid the steroids. Us old timers know this. Prednisolone, or if you are very sick, and need a boost through the veins with the hydrocortisone will absolutely save your bacon. Prednisolone is great in the early days, a tapered dose of the little pills which will make you feel right as reign in no time. In fact, in my teenage years, my mentality was just that, a flare, great some steroids, couple of weeks, done back to old sal. Oh how naive.
The drug is a generic wonder, treats most body inflammation whatever the condition, bowels, lungs, cancer the lot. We should praise it really that it systemically can calm most things. Prednisolone is more synthetic than hydrocortisone which has to be put in your veins, it does the job, but the side effects are a trip to Alton Towers for me – rollercoaster central. Where to begin.
Let’s start with the good old Pred. You have your course right? So they start you on 40 mg, eight little tablets, reduce by one. Or bang, take a load and stop. Either way it’s fun! I have really had my ups and downs, so will you. As you will see further down I have had a lot of better medicine to hold my crohns, but pred has played a big part in my treatment at certain points, again especially in the early days when my disease was less complex.
What the drug actually does is great, what it does to my brain is something else. I am so sensitive to steroids, I turn into a different person, so don’t fret if you start to feel giddy or very sad and blue. My journey on the high dose makes me very high, so high I’m a crazy lady, I don’t sleep, I just move, think, organize, and do. I cry, I talk, waffle, I cry some more, my brain really gets locked on overtime. As the years go on, it gets worse, I get joint pain on the first day, especially in my hips, and unfortunately (as you can spot on some site pics) the moon face and body is a real dilemma. I go HUGE, my face is so big I can see my cheeks without even squinting, and I get the biggest hump on my back – Cushing syndrome they call it, blooming Cushing’s. TIP: loads of water, and NO SALT. Salt will make you retain the water, and that’s no good, you need to flush! The pred hunger is a nightmare, but try resist all ridiculously fatty foods, or at least cut down. A good tip is social media binging! Instagram is a favorite of mine, I just stare at hot dogs, macaroni cheese, burgers, bacon, I went wild once upon a time, fully flaring eating cheese, croissants, cake, crisps, the C diet I called it… full fat goodness all the way, my word it took me eight months to look normal, because I had no clue what I was doing to my body, I was so steroid hungry I ate, and ate, and ate. One day I got in the lift to work and just didn’t recognize my face, I knew I had to do drastic things – so do you know what I did? I changed my route to work to avoid Sainsbury’s – why? Because the smell of hazelnut croissants freshly baked in the morning in central Birmingham was basically too much to take! (Didn’t work though, silly sausage … route avoidance was not the answer, water and diet was)
Obviously diet and fat is needed for a lot of crohns patients and is a different matter for all of us, but that’s a completely different page
There is not really a lot you can do about Pred, you need it you need it, you have to ride the storm. I recommend a few things that might help with the pain and the head psychosis…
Amitriptyline – (my world) the little anti-depressant has saved me and my crohns. I find 10 – 25 mg depending on dosage every night helps me sleep, calms my body and calms my bowel. Speak to your GP about it, I freaked out at the thought of taking anti – D’s but it has been a wonder, in less stressed on the toilet and I just feel things move better.
‘Ami’ is all I know, and I like it, maybe more of you out there have had something different, don’t be scared to ask the GP for help. I didn’t for years because I thought you had to be depressed to ask for such things but there are drugs that are used for somethings that can be complimentary for others, it’s all a learn.
Buscopan / Mebeverine – anti spasmodic I find help, all those IBS sufferers are hooked I hear! No seriously a little Mebeverine helps me a lot, so I take anti spasmodic with Amitriptyline when I have bad flares.
Let me tell you, I have watched many a time, and done so myself, I think pain so I head for the painkillers to help my crohns… no no no no no, bowels don’t like analgesic, it makes them stop working, cramps them up and gives you less mobility so whilst you feel good or safe for a few hours it really doesnt help in the end. Ibropufen is a no, don’t touch anything like that it will hurt your tummy and you should be told to stay clear anyway and the same with codeine well, it just induces bleeding with me, why would you want that… more fissures no thanks ! I’m not saying everyone should just ignore painkillers as everyone is different, I’m just saying think about them differently they don’t just do what they say on the tin, in fact I think they ruin you.
I’m not going to lie, flaring at times has been so bad in hospital I have had to resort to morphine, out of desperation, but it never helps with the bowel, its more that I have had to fight the bum pain, everyone is different, like I say it’s just my experiences you can take and leave what you want guys! Not that the GP is going to give you any morphine over a counter anyway so don’t worry about refusing – you need a big messed up bowel badge for that access!
My blog entry of the worst flare of my life will give you some insight of six weeks on high hydro, I think I am the only patient in the UK to receive so much, clinically I think people have had four weeks, it’s a living hell (but my extremity will be nothing, hopefully to what you experience, if you experience anything at all)
6MP / Puri Nethol – 2010
So, this was an experience for me, five years with crohns flare its time for a step up – immunosuppressant’s! I went from being treated at my local hospital for bowel disease with all of the above medicines to help cope with flares to being referred to one of the best hospitals in the UK – The Queen Elizabeth Birmingham. Wow, all shiny and big, with a costa coffee – what was in store?
I needed an answer, not reactive, I needed maintenance therapy, you get to a point when you are like how many times do I have to wait until I’m flaring and then someone will help cure. Prevention is cure I hear you say… well yes that is my kind of thinking Mr. Smart QE doctor.
So what’s this 6mp? Chemotherapy … huh hang on I didn’t sign up for this? I thought these guys were going to give me a miracle drug and then they slap me with all these side effects… I didn’t sign up for this?! Surely not. Why would I leave the pred, it’s not nice yeah I get that but hair loss and small cancer risk… oh boy.
Okay, so it wasn’t so bad… the first three months were slow and I felt like I was waiting for something to happen, my hair was a little thinner, and god I bruised like a peach but I was pooping normally, great! Avoiding the sun rays and keeping myself well was the challenge, always a bit sniffly like I was a bit under the weather but on the whole it was great. 6 mp I think is a purer version of Azathioprine which has been around a long time, I have friends who I work with that have taken this drug for years and do well with no problems, once you get over they use it for leukemia. But hey, that’s the thing right every bottle has a side effect, we take it anyway most of the time because we have too, and we have more chances of getting run over buses than half the stuff that’s on the jar!
6MP is measured on your weight, I took something like one and a half tablets every day, me and my pink pill cutter would have so much fun there would be half pills flying everywhere daily, again, not great having toxicitic drugs rolling round the floor with a cat, so be careful ! I was worried about drinking alcohol with this drug, I don’t know why it made me paranoid thinking what I was taking, not that alcohol consumes my life but you know everyone likes a wind down, I soon got over that, once I had my regular white blood count check. It made me feel safe to see my CRP and platelets okay, until one day they weren’t and that’s when I got off the 6MP bus and onto another!
I lasted 18 months on 6MP with success, so don’t be afraid to try. It was great having regular checks, better actually because for the first time ever people were monitoring me, rather than me feeling lost and waiting for the dreaded day of flare. If you look at it like that it’s a much better outlook than worrying about what could happen, because even if it did under immunosuppressant therapy people are going to pick up on stuff very quickly and will change what’s needed for you for the better
Humira (the angel) – 2012
So here I am back again… in hospital, my body doesn’t feel good at all, sweating and shaking like mad, but no twinges, full on what the hell. Then goodbye two weeks, I don’t remember a thing, CRP 298 I hear you say? Wow that’s impressive. Full on black out.
Three weeks later, steroids fully on the go, I get a knock on my hospital door. The IBD nurse looking at me pitiful. So here’s me thinking, how are they going to save me this time, amongst thoughts of they are going to take my bowel away, and am I going to live on pred forever, and what did I do to deserve this? Why me?
So we had a chat, as you do, nerves at full pelt, the discussion. Biologics. (And I thought immunosuppressant’s was fancy!)
On a serious note, discussing biological medicine was not fun experience for me, I was in shock that I was getting to a point with my condition that I was facing a choice of infusions or injections. What happened to the days when I could just pop an Asacol and get on with my life huh? Scary. I was weak, hospital had ruined me and I was facing the prospect of committing to something very overwhelming. But. It had to be done, the place I was in was not a good one so I had some chance right, and I was desperate for remission.
3 years later. Humira you beauty.
Humira. Humira I couldn’t love you dearer.
Humira gave me my life back. I was a lucky one, and I hope if you are reading this and facing the same choice I did you go for it and see what happens. I hope it works, I know it doesn’t for everyone, but its hope right?
So you have an X Ray, you need to be tested that you don’t have TB and you also need to make sure you don’t have any intolerances to the drug, sounds fair right? Then injection time.
Injections – here is the thing, I read so much on forums and social groups about people moaning about injecting, it’s sore or they can’t do it. Come on guys, how bad is your pain, we are all tough cookies we can get over a little sting surely! I’ve never seen so many ridiculous posts from people with chronic pain… imagine how a diabetic feels! Anyway, if you start the Humira journey it starts with a nurse who comes to your house, unless you have your first injections at the hospital. At this point when I knew I was starting I felt like utter bags, so I was glad when I had my delivery and the home nurse arrived a week after I had left the hospital. I had my mum with me and she showed us both how to inject the lovely pre filled loaded spring pens. First dose was four in the leg, ouch I hear you say, well yes if you have ever seen my pins! Need a good bit of top fat for sure so pick a nice cushioned place? It wasn’t so bad, I had a little bit of redness but that was it! Hurrah, now patience…
Two weeks later, my life was back, Humira really worked. The pain had gone and I could reduce from steroids safely without having any mini flare, could I believe it? No? Too good to be true. One. This is why if you get offered biologics, I urge you try, one they are not given to patients lightly so if they think you need them then take it. Two. Life back? Hope? Hell yeah! I choose Humira at 27 years old as a lifestyle choice, I preferred the thought of injecting at home fortnightly and being free. Remicade was my other choice, infusions, in the arms at the hospital, it wasn’t for me at the time, but it’s an option so make sure you choose wisely, the comfort of hospital is better for some, and of course injecting for some is just not an option! Your choice.
- Warm the Pen! Gone are the days where I used to pop one out the fridge and quickly inject it in for fear of the med spontaneously combusting on me or losing its power. Instead I now take my time and warm it in my hands, or stick it in my other half’s armpit for ten minutes so it’s nice a room temp. This makes a hell of a difference when you inject, trust me!
- If you have a nice partner that doesn’t mind, take the stress out of injecting yourself and get them to do it for you. I found that my bum cheek over time was the best spot, don’t feel a thing and when someone else clicks the pen it takes all of the anxiety out of doing it. Over in a tick! Then you can curse them for 10 minutes whilst it stings – great relationship therapy! He also takes pleasure in the chore! Can’t think why some would say its small pay back for being a small thorn in his side.
- Pick the best injection day. So most of us will have to inject weekly or fortnightly, personally at stages I have done both. There is no point injecting on a Saturday if you know you are out all of the time or away for weekends, make it easy for yourself. I injected on a Tuesday, a boring day, office day, very rarely away. Makes life easier.
- Travelling abroad: this was my dread, I love to travel but the thought of carrying around pens and keeping them cold was a nightmare but never fear its okay! Typically I have done a few trips struggling with ice packs, flannels you name it, rushing through Spanish airports with soggy bags thinking only about getting to the hotel fridge! Not glam, and a lot of stress for a chronie! Until. I flew to South Africa and said to myself I needed to get a better system because three flights and twelve hours was going to stress me out big time and the airlines don’t refrigerate. So then I rang the helpline and spoke with a Humira specialist who told me that Humira can be stored up 25 degrees for 14 days and would not be spoilt… hurrah! It still needs to be kept away from light, and obviously I still did my best to keep it cool, but what a difference this information meant. I made my own cool bags for the plane, and didn’t stress so much about the pens being cool, cool, and popped them in the fridge as we moved around. I travelled west to East Cape South Africa with two pens and I was fine. If you are A to B hotel even better – don’t let it stop you seeing the world!
Did you know the cost of Humira is £352.14 on per 40 mg pen on the NHS? With all my pens stocked up in the fridge sometimes I consider whether my house insurance covers the cost of the shelf.
Our American friends don’t have the luxury of these things. I read that some people have to really save or get good insurances to have access to these drugs – so think about it when you are offered how fortunate we are for our health care system.
My story ended with Humira this year after 3 years of relatively free flaring. I had a test in December 2015 which showed I had a lot of Humira in my system, and no anti bodies, which in medical world is what you want to see right? Ps. it’s great we have this test now, before it was a guessing game if you were responsive or not. It gets sent to a London hospital and came back in 14 days. So I had a little flare, haven’t been well for a while, but then winters are always a bit rough… so continued the Humira because all looked well. Up to now, where my journey is at, hospitalized.
Remicade (the future?) -2016
Infliximab, the infusion. First one Saturday 7th May 2016. The big shake up.
Who knows? One week in. Inflammation coming down.