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
August 2nd, 2010 20:26
Iv just read ur blog..very interesting..But I just have to say it is true and although i know how ill u have been,(and are), u do look a hell of a lot better than u have in recent weeks…more colour to u…lets hope that things only get better, with ur new drugs n all… Love u so very much..xxxxx
October 4th, 2010 15:15
Hi,
I’d just like to say thanks for the honest and funny perspective you put on your life with Crohn’s. I was diagnosed last September when i was 20 after tests although I’ve had pretty bad stomach pain since I was about 14, which basically got worse over the years but I never had any of the ‘typical’ symptoms such as bleeding, diarrhea etc and I’m one of those stubborn people who doesn’t like to admit they’re ill until the end up in a&e weighing 6 stone! Anyway basically that backfired on me when I ended up in hospital in Feb this year for an emergency ileocaecal resection (this has not the best year of my life!) which as I have read in your blog is what you also had done.
I’m due to start on mercaptopurine in a few weeks and to be honest I’m terrified, all I seem to read online are the horror stories associated with the use of it and the best advice I’ve been given is to “avoid crowds, avoid stress and avoid ill people” Hard since I am 21, a uni student and work in a bar/restaurant.
The doctors/IBD nurses don’t seem to be bothered about really explain anything properly to me, they just tell me what to do/what to take but not why and they don’t seem bothered about my concerns. Don’t get me wrong I know they’re the experts but would it kill them to explain things?! For instance when I was admitted to hospital in Feb for my operation and they looked at the scans I had had done back in Sept (from my previous consultant) that they diagnosed me from they told me that no meds would have worked on my Crohn’s at that time as the stricturing was far too bad and that I should have been operated on back in September. Back in September they started me on Pentasa after my diagnosis, now they say ‘since the penatasa didn’t work then they don’t want to use it now as it wont work again.’ How would they know that since they said no meds would have worked then?! Which is why they want to put me on mercaptopurine.
Sorry for the long winded life story, I’m just fed up of my life being taken over by this stupid illness, when I want to get on with my life! And I’m worried about my immune system being ‘supressed’ as I am constantly around people!
And its been nice to read your experiences with this horrible disease.
It has been lovely feeling well since my recovery from my feb operation and so far I have been completely symptom free which I’ve been told probably wont last, but like I said the side effects of mercaptopurine really worry me!
October 6th, 2010 15:15
Hi Chrissy
It’s so nice to hear from people who read my blog. I try to make it a fun read, but also show how Crohn’s and the surrounding medication affect my life. The doctors don’t explain this kind of stuff and each person is so different; so I guess they couldn’t even if they wanted to.
Im so sorry you have had a rough year, but it will get easier, the more you learn about your body and illness.
My best advice about medication is not to read too much on the internet. If you read about paracetamol you will be scared, so the stronger drugs will be even worse to read about. MCAP is a strong drug and does affect your immune system. I have noticed since being on all the different meds that I get colds a bit more often but nothing worse than a weeks worth of coughing and nose running. So try not to worry about mixing with other people too much. If you do find yourself worrying then take some hand sanitiser gel and every now and again wash your hands with it. A good habit to break is putting your hands near your face. This is the way most colds get us. Try not to develop OCD though else you’ll be worse off!
Stress and meeting people is what Uni is all about. Try to live as normal as possible (I know this is a silly comment as we are no longer “normal”). Make sure all of your friends are aware of your condition. I found my friends to be really interested in what’s going on with my bowel. Also might be worth having a word with your course leader. If they are aware you have a medical condition, you might be able to get longer on reports etc (could be useful if you get too busy and stressed).
I think we are all stubborn with our Crohn’s. None of us want it to stop us from living our lives. Most of us succeed in putting the pains to the depths of our minds and visiting the loo every hour becomes normal. This is our life and we soon forget what it was like not to be feeling these things.
MCAP had rough side effects for 3 or 4 weeks then they died down. Unfortunately for me the “good” effects have stopped too. We have to try all these things and hope that one day we find remission. If you are unhappy with your IBD health staff then you are entitled to a second opinion; Could be worth finding another specialist and talking it through with them. If you have IBD nurses available, make sure you use them. I am always on the phone to mine asking whether a side effect is normal or if I am allowed to do certain things.
Make sure you sign up NACC and attend a local meeting. They are really helpful. The older guys there can give advice and the younger guys are in a similar situation. It’s the only place where you can talk openly about your illness and have the recipient know exactly what you mean. I have never talked about so much poo with strangers than when I attended my first meeting. I call it Crohn’s Anonymous.
Just out of interest would you like to write a story for my blog? It might help get some things off your chest. I enjoy writing them down, plus you can get other people to read it like your friends and parents. It can be easier doing this in written form rather than verbally face-to-face. Don’t worry if you don’t want to.
Please keep in touch
Ben
ben@meandmycrohns.co.uk