Me & My Crohns

So we come to the end of the third week and I am slowly beginning to feel better. The side effects are dwindling down now. I feel sick in the morning and occasionally later on in the day, but no where near as often as when I first started taking it. I am having a slight problem with fatigue; not tiredness, actual fatigue. Around 2 or 3 in the afternoon my eyes hurt and my body is drained and I struggle to think straight. Caffeine seems to help perk the brain up a little, but the body is still a torture to move.

I have found that my moods are starting to swing around. I am generally a cheery person who doesn’t get fed up that often, but lately, since taking the medication, I have started to feel down. I am finding it tricky to listen to people. I feel as though I want to be alone a lot of the time. It doesn’t help that the office I am working in is taking a turn for the worse. I am lucky to have a strong mind though and I soon realise that my moods are pretty much based on the chemical imbalance and I soon fight my way to the happy side of life.

The best advice I have when taking M-Cap, is to take it at night. This way you have a tummy full of food to line it well, hopefully preventing the awful sickness feeling. It took me calling the IBD nurse to be told that. I would also recommend exercise. I never normally endorse exercise; I hate exercise. However, I do like cycling, so I ride my bike to work as much as possible. This really helps wake me up and get me ready for the day ahead. Exercise also helps keep the mind strong as well as your body. These drugs are very potent, so it is always best to bit the fittest you can be, mentally and physically. Never suffer in silence, if you have any worries talk to your GP or IBD specialist nurses. They are all there for a reason, and they can generally offer some decent advice. I have also found that talking with the Crohn’s and Colitis UK local group (Mine is Leics & Rutland) can help a lot. A few of the guys at my local group have taken this medication or are still on it, so it’s nice to know you’re not the only one feeling these emotions and side effects.

Apart from the unwanted side effects, I am having some positive effects on my Crohn’s. I use the loo once or twice a day (I still occasionally have a bad day, so not 100% improvement) and my pains and cramps seem more under control. I am still quite sore from the operation which was done about 3 months ago, but that will hopefully die down. Does anyone out there have any soreness around your scars? My main scar is quite painful at times, but it has stopped leaking, which is a good sign; so at least my insides won’t drop out! Don’t want to ruin any more decent T-Shirts!

If I can get over the last of the side effects in the next few weeks, I am feeling confident that my Crohn’s may become fully controlled. Fingers crossed. The main fear I have is becoming immune to the drug. This has happened with most of the drugs I have taken so far. The bad side effects lesson and the positive effects diminish, leaving me back at square one.

Hope you are all working your way to a happy Crohn’s free life. Take care

Ben x

As the title suggests,  I have just completed my first 2 weeks of taking Mercaptopurine. I think it has started to have an affect on my Crohn’s symptoms. I am using the around twice a day, which as we know is a major leap forward. I have been having cramps and pains, but these may still be related to the ongoing healing from the operation. I am finding it difficult to see the benefits of the medication though as I have been busy trying not to throw up and trying to stay. As the weeks go on, it is getting slightly easier and the side effects are lessoning, but they are still pretty rough.

Mercaptopurine is sometimes known as 6-mcap. It is an immunosuppressive drug and is mostly used to treat leukaemia. It is also used to help treat inflammatory bowel disease and arthritis. It is a very strong medication that the body really doesn’t like. For the past 2 weeks I have been feeling exhausted, even more than usual and a constant “sickly” feeling. The sickness is there when I wake then fades an hour or so after eating. Then after another hour, it begins to come back and will stay until after eating again: it’s a vicious cycle. I find myself eating to suppress the sickness, which probably isn’t that great for my health but it is the only thing that works.

I spoke with the IBD nurse who suggested that I take the medication in the evening, with my dinner. This way the stomach will have some lining and hopefully stop the nausea. I find this difficult to believe, as it is not just before food that I feel ill, it is most of the day. Even so, I have tried taking the pill in the evening for 2 days and found no real difference, except that I wake up in the morning feeling more sick than ever. On the plus side though, taking the pill in the evening seems to have helped with the fatigue. I am more alert for the majority of the working day, but after lunch I still take a bit of a nose dive and feel very tired. I can keep it at bay until I get home, but once home, all I want to do is sleep. My eyes are constantly heavy and my head is cloudy. 

I’ll keep you posted on the progress

Keep Well, Ben x

Thanks, it’s always nice to hear that.

“You’re Looking Well” is something I have been hearing a lot from people recently. I just thought they meant I was looking well compared to when I came out of hospital after the operation, but people are now saying it compared to how I looked before the operation.

The only problem with hearing “you’re looking well” is that people think because you look well, you are well. This is not always true. Even my friends from NACC, or Crohn’s and Colitis UK as it is now known, have said that I look well. These are people that know that the disease is on the inside and generally we cover it up so that our “happy” face mask shows on the outside.

But when you have heard it so much, maybe it’s true. Maybe I am much better than I was. I have certainly gained some weight and hearing that you look healthy makes you a tiny bit happier. To be fair to all of these people though, I am feeling better within myself compared to a little while ago, but I am definitely still poorly. I have been waking up in the night with pains and my toilet frequency is picking back up again after a week or 2 of steady 2 movements a day. I actually convinced myself that I was well; this is why you haven’t heard much from me recently. I haven’t had any major problems so I forget to write about my Crohn’s. I guess as soon as you feel “normal”, you try and act normal. I find it difficult to remember to write about the good times. I know I need to share more good times with you, as Crohn’s isn’t always horrible. There are good days occasionally.

On the upside, hearing “You’re looking well” is much better than hearing, “Wow, you look really awful, truly dreadful. How are you still walking around when you look so ill? Please take you’re unhappy, poorly face away from me, it’s making me feel sad” I haven’t heard that one yet and hopefully never will.

I spoke with my consultant on Friday; well my Bowel Nurse who had spoken with my consultant, and they have decided to put me back on medication. This is a plus, because since my operation 2 months ago I have been riding solo with no medication, just me doing my best not to get ill.

I will be starting a course of mercaptopurine or 6-Mcap as it is sometimes known. This is a relation to Azathioprine which I didn’t take to when I was taking it last year. Hopefully this related drug will have the desired affect. My only fear is that as it is so similar to Azathioprine, so it may give me the same side effects and not work for the Crohn’s either. I have to go for blood tests every week which is a bit rubbish, but at least they are making sure my body is accepting this drug and not slowly coming to a stop!

I with held from starting the drug until the Monday, so that if I do get sick from it, I will not have ruined my weekend. My boss may not be too happy though if I am sick at work, but that is a risk I am willing to take.

I would like to hear from anyone who has taken Mercaptopurine, whether it was a good experience or bad.

Take care and keep well

Ben x