Am I addicted?

Since being diagnosed over 6 years ago I have become very blasé about “popping” pills. There have been times in my treatment when I have been taking 12 pills before I had even had my morning wash. I guess I tried to be as ignorant as possible to what I was taking in a blind hope that they would offer some relief from my Crohn’s Disease symptoms. No matter what my ailment, there always seemed to be an extra pill that could be taken.

Even now that I am more educated to what the medications do and how they work, it doesn’t stop me dropping a pill a soon as something doesn’t feel quite right.

If I feel nauseous I take a pill, if I get a headache I take a pill and if my tummy shows any sign of not being in any way cooperative then I will take a pill.

It is not until you make a conscious effort to monitor or restrict the amount of medication you take that you begin to notice just the quantity of medication you are reliant on.

Alongside my Mercaptopurine I was regularly taking a dose of Imodium and paracetamol. It had become a habit, a routine of popping pills not necessarily because I needed them but more a pre-emptive strike on what may come. Then there is the varying array of stronger painkillers I have stashed in my drawer for when I feel even worse than normal. My joints hurt most of the time and my bowel cramps and strains most days too; this is just my normal life, so why should I not try and deal with it before it happens?

After many years of this disease my pain threshold has moved on. Generally I can withstand much more pain than my old self could, so why was I finding the need to take so much medication?

I guess normality is wanted by each and every Crohnie. We want to live a normal life where our bodies don’t hurt or disrupt us.

I made a conscious effort to take the drug use down and go back to using medication if and when required. The only medication I try to take now as routine is Mercaptopurine.

This is actually quite difficult. Not all my aches and pains disrupt life, they are just annoying. So how do you decide what needs pain relief or what requires Loporimide? If I have 1 loose bowel movement do I need to strike or do I wait for a second just to be absolutely sure I need a pill to help block me up? Does an achey tummy mean later I’ll be in agony or will it pass?

I know if I don’t take action swiftly then all hell may break loose later but then again, maybe I’ll be totally fine and the symptoms will pass.

We become so reliant on medication that I believe we forget that they are toxic. Our body does not like them and has to process them. The more pills you take the more your body fights. As you see with alcoholics or other drug addictions, your body eventually gives up and cannot cope. I am terrified that I will damage my body. I know it is unlikely as my pill usage is relatively small and insignificant but it is still a niggle that plays on my mind.

Also I do not want to become resistant to the medication. I know of people who need morphine regularly but the more they have the more they need to control the pain. So what happens to them if they get a blockage and need something to control the pain? Morphine is lovely and is such a great relief when you are in A&E or after an operation, I would be gutted if I became resilient and couldn’t have it.

Don’t get me wrong I don’t want to stop all medication and become a hippy. I don’t want to feel guilty for taking a pain-killer; I just want to ensure I am taking them because I need to.

Even as I write this I have had to have some cocodemol just because my gut is aching and churning away. I am gritting my teeth and pretending life is normal. I need to be “normal” for a couple of hours – so let’s drop a pill and enjoy life.

Crohn’s Update

I have been a little rough recently. Really tired out and losing weight. I’ve not had a symptom’less day for quite a while. I am struggling to focus on tasks and finding work very difficult. Unfortunately my drug use is way up but on the plus side I seem to be in control and nothing has got that bad that I need hospital treatment.

Ben x

Posted in Mercaptopurine Diary | 4 Comments

Faecal Calprotectin Test (Better known as pooping in a pot)

I saw my IBD consultant last week and he wasn’t entirely happy with my progress. My bloods seem to be steady but my body is saying something else.

He recommended I be put forward for a Faecal Calprotectin test. This is a relatively new test for my part of the country. This test will become the first call for any undiagnosed bowel problem as well as ongoing disease maintenance.

It is a straight forward test that is cheap (the NHS is desperately trying new ways of saving money) and it is quick to see results. You can do it in your own home and have the results back within a week or two.

If you have never heard of this test and have no idea what it is (and you missed the title of this post), let me explain. Simply it is a stool sample. It looks for any abnormalities in the gut. It is being used instead of sending the patient for an endoscopy. We all know how difficult it can be to have a camera put in that special place we really wished it would not be put.  So any test that prevents an uncomfortable camera and mild embarrassment must be a winner.

If no abnormalities are found then it allows the doctor to focus their investigations elsewhere but if it does come back showing  something then the doctor may then refer you for an endoscopy for a more in-depth view of the problem area.

My consultant said he would like to bestow the honour of being one of his first patients to take this test. He ticked a box on a form and sent me off in search of his nurse. I had an image in my head of this nurse taking me to a dark room and expecting me to pass a suitable stool. I then worried that I wouldn’t be able to go and had visions of the latex gloves coming out! No need to worry. Thankfully it is not performed like that. Phew! She passed me a white plastic bag, the size of a bin liner, full of all the paraphernalia.

The bin bag contained a pair of latex gloves, an addressed envelope, a sample pot with an integrated spoon in the lid, a cardboard tray and an instruction leaflet. Now all those items seem relevant except for the addressed envelope. It turns out you can actually post your sample back to the lab. I pity the unsuspecting postman who delivers it and the poor receptionist who opens it. Nobody wants to be opening a packet full of poo when they get into the office on a Monday morning!

So I took the bag of goodies home and placed them next to my throne in the bathroom. The instructions are clear and repeat the need to wash your hands constantly. Cleanliness is important, even to ensure you clean the pot before taking it to the surgery.

So the morning comes when the sample is due. Luckily conditions were perfect. I was working from home this day, meaning I could do the test at any time plus my gut seemed to be on my side and running “normally”. Your sample needs to be pretty solid and of a certain consistency. This to me seems like it could cause trouble. If it is a test to look for IBD, then more than likely the patient will have loose stools. Anyway, this problem was miraculously not affecting me this morning; all systems were good to go.

I ran into the bathroom as soon as the first twangs of a movement stirred deep inside. I needed to prepare the area and get ready for the event.

Gloves on. Card board tray come Poop catcher was placed in front of the toilet. Sample pot lid was removed from sample pot and undergarments were now around my ankles.

I sat on the loo like normal and wedged the cardboard poop catcher under me. This was an awkward moment. One false move and I would be in a messy and embarrassing predicament.

Lady luck was on my side. A perfectly sized stool landed and the cardboard was removed. Now all that was left was the final, most horrifically terrible bit; the scooping of the sample into the pot. This was very difficult using the tiny spoon on the lid, but I did it. Gloves were removed, lid was reattached, everything (including me) cleaned up and the completed sample now safely sleeping in its envelope ready to be dropped off at the doctors.

Now this is an extremely simple test but it is quite a difficult task to do alone however, I would not want anyone joining in and helping me. This is definitely one to struggle alone with. It can be done, but do take your time.

I was pleased with how simple it had been and I am now awaiting my results. Fingers crossed they come back soon, with some sort of good news.

Ben x

Crohn’s Update

I’m still on Mercaptopurine. The doctors are no longer allowed to call it 6MP as NICE have deemed it possibly confusing for patients. They may think they need to take 6 pills, or maybe take the pill 6 times throughout the day. Obviously for most people this is not an issue, but if it helps one person, then it is a good move.

My Crohn’s has been a bit up and down for a few weeks. Mostly loose stools and weight loss. Luckily not a lot of pain, not from the Crohn’s anyway. My joints have been rather bad but I will discuss this in a further blog.

Posted in Mercaptopurine Diary | 5 Comments

A Partner In Crohn’s

I talk to many people throughout my life that suffer with an IBD, either through Twitter (@MrAwesomeBen), my blog or my local Crohn’s and Colitis UK (Leicestershire & Rutland) charity. These people have become a cruck for me to rely on. They know, pretty much, what I am going through. These people, some of whom are complete strangers, people who I would not recognise if I passed them in the street, are there for me and vice-versa.

I bang on about not suffering alone, especially in this modern era of the internet where a new friendship with someone is only a click away.  You can hide any embarrassment or anxiety behind the computer screen.

I class myself to be extremely lucky in this world. I found love. I found a woman to share my world with, who accepts me for what and who I am.

Granted neither of us knew at the beginning the trouble I would put us through with my diagnosis but I doubt that would have changed a thing. I struggle to remember a time where she wasn’t a part of my life.

Now I don’t want this blog to sound like one massive brag. I want to highlight that we are not all so lucky.

A fellow Crohnie “gets” you. They know the feelings you feel, they know the pain you suffer. They know all this because they have been in the same situation. You feel you can confide in them as you know they will not be judging you.

Whereas a spouse sometimes just doesn’t fully understand. This is not their fault but sometimes you need to talk to someone who has been to the depths you feel. Sometimes you find yourself so fed up with your IBD that you begin to get grouchy with the other half.

Sometimes your medication makes you tired, lethargic, irritable or sometimes it’s just the IBD symptoms driving you mad. You lash out on this one person you love the most. You take your frustrations out on them.

Now a good partner understands that you’re no meaning to be like this; they understand that it is a temporary glitch in your otherwise faultless personality!😉

Mrs Ben knows she is part of my healing. She gives me leeway when required; allows me time to myself to be a grump.

Not all Crohnies have this support at home. Their partners get angry and fed up with the IBD’er and basically tell them to get over it and offer no emotional support.

This post is dedicated to the partners of the Crohnie; the ones who don’t understand what their loved one is going through. You need to look back to the origins of your relationship and remember what it was like to love unconditionally. To give your partner a shoulder to cry on, offer them yourself as a punch bag to let all their emotion out. You may have forgotten that they need you. If they can’t let it out to you, then they will struggle to heal. We all need a good moan. You don’t need to offer help and advice, just be there, no matter what. Help and advice can come from us other Crohnies.

Ben x

Crohn’s update.

Vitamin D has dropped even though I’m on prescribed supplement tablets. My bloods have been taken and a new, different supplement has been prescribed to see if they help. With the sun showing his face a bit more, I’ve been out in the garden getting some natural Vit D flowing. Had a bit of a struggle cramp & pain wise recently, having to take a lot of pain killers and trying to watch my food intake. Mercaptopurine is still at 50mg at seems to be the best med so far. I’m fed up with constantly being drained. I’m so tired all of the time. My “get up and go” has got up and gone. Still smiling though. Life is what you make it and I’ve made mine a happy place. Keep well my friends.

Posted in Mercaptopurine Diary | 5 Comments