If you're not into my medical posts then that's cool, come back tomorrow where I will return to normal programming! :) Â But today I am sharing a couple of things on where I am up to with my crohn's. It's a good record for me so I can remember down the track and for those …
If you’re not into my medical posts then that’s cool, come back tomorrow where I will return to normal programming! 🙂  But today I am sharing a couple of things on where I am up to with my crohn’s. It’s a good record for me so I can remember down the track and for those who are in a similar situation….
Before Christmas I started on a drug called 6-MPÂ (Mercaptopurine). It’s an immunosuppressant drug. It’s similar to all other immunosuppressant drugs for crohn’s: imuran, humira, infliximab…. I’ve had no succes with any of them. I hadn’t tried 6-MP previously (apparently a lot of crohn’s patients try this early on in their disease) and after a failed drug trial back in August, I had to keep trying. I am nearing the end of available PSB drugs, so I am not thinking too far ahead and just taking it all as it comes.
Anyway, I started on the 6-MP and wasn’t having any positive results (surprise, surprise) and was a little nauseous from it. I needed to ditch it.
But the Doctor’s did some blood tests and discovered I was a ” shunter”. I am not entirely sure what this means still (even after researching it), but something to do with not tolerating it and showing some abnormal levels in my blood when taking an immunosuppressant drug. Awesome. Of course this would happen to me. Soooooo if I’d had this test 16 years ago maybe we could have not wasted all those years not getting results with immunosuppressants???… However, when I did question this the doctor said yes, but this test has only been available for the last 12 months. Bummer!
After this discovery I was offered a trial drug called allopurinol which is having some good results with switching this ‘ shunting’ thingy around. Unlike the last trial drug where I could be receiving the placebo, I am 100% receiving this drug. So what I have to do is take the 6-MP as well as the trial drug. I am having blood tests every fortnight and visiting the hospital monthly. It’s a 24 week trial.
It’s only early days so I have no idea how it’s going yet. I’m not great (as in, my crohn’s is still really active), but I’m managing.
I reckon I’ve had just about every symptom, every ailment, every drug possible. I’m an expert on the subject now! Just ask me…
Oh, and my Mummy has shingles at the moment. Far out! She is the 3rd person I have known to have shingles in the last few months. No fun!
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Comments
Lauren - Big Eejit
Lovely lady, you are so positive despite this horrible illness. I really hope and pray you get some relief from it via these new drugs. Keep smiling 🙂 xxx
deansmum
Hi Katrina, my son was on Mercaptopurine for months, the nauseous feeling was overwhelming for him.The fact that it is a chemo drug I guess explains that. He had to take anti nausea drugs before he could get out of bed. He has also been on Potassium Iodide, Imuran,and Prednisone . He is now on Cyclosporin, this is the only drug in the last 6 years that has done anything. It is expensive, but worth it.
Wishing you luck with the combination of these 2 drugs. would be interested to know if you have tried Cyclosporin?
Katrina
No I haven’t tried Cyclosporin. I will research it now actually. Glad to hear something is working for your son!
deansmum
Might be another option, and at least worth looking in to. Guess it’s not for everyone but works for my boy.
good luck <3
Leonie -Australia
I feel for you Katrina, I have Lupus & I hate having to take drugs as you take one then you end up with something else wrong with you from the original drug, you help one thing & wreck something else, very frustrating. Good luck with this new one I hope you get some positive results.
Leanne
Good luck Katrina! I’m on Imuran and Prednisone at the moment and hopefully will be somewhat ok at the end of it! So far, so good!!
Katrina
Good work Leanne! I hate pred and only take it if I’m forced. Mostly I refuse – I’m difficult! I do take budesonide – it’s like pred but not all the side effects.
Good luck!
Jane
Oh Katrina. How you manage to juggle everything in your busy life whilst all the while dealing with this just astounds me. You are such a strong woman. Fingers crossed this is the breakthrough you’ve been looking for! J x
Lisa King
Thinking of you Katrina. Hope you find something that works long term for you. My brother has colitis so I know a little of what you go through, but can’t really imagine how it affects your whole life.
Katrina
Thank you Lisa! X
designchic
So sorry you are having so much trouble…hoping this drug will help!!
Hayley
I was only diagnosed 12 months ago, started on prednisone and Imuran, tapered off the pred by August and flared again in November. Do you find stress plays a big part in flare ups? I’m finding it a vicious cycle, I’m so desperate to get better so we can have another baby, but I have so much stress in my life that it makes me sick, I stress about never getting better. I’m currently tapering off the pred for the 2nd time but I’m halfway and already have signs of flaring (actually I don’t think the inflammation has ever gotten better this time). Back to the doctor on Thursday, fingers crossed for a positive outcome…p.s. sorry for the rant!
Katrina
Fingers crossed for you too Hayley! I’ve had this on and off for 16 yrs. It’s tiring! Yes, stress can trigger it. That’s probably why I go so sick while on a tv show haha!
spark
Beautifully written post. I imagine it would also be very helpful for anyone with Crohn’s (as it is always good to see what other people are doing with the same condition). Really hope that you find a drug or treatment that will help you and cross my fingers that it comes soon. I have a chronic med condition that only recently seemed to resolve itself (wonder drug became available in Australia). Never thought it would happen but it did and sending you all my lucky vibes that it will happen to you too. xxx
Scandi Coast Home
It must be awful to feel so unwell all the time……
You certainly hide it well! My fingers are crossed for you that you have success with the new trial……
Tania xx
Mishaps and Mayhem of a gluten free life
Katrina,
What a great post. You have been on such a hard journey with this disease, as I imagine so have many of people. Even though I’m a coeliac and fairly well versed in that disease, I don’t know much about chrons. Thank you for educating me. I’d love to know more if ever your up to write that post, what it is etc! But by you and particulary celebrities as you are talk about diseases like Chrons it makes it easier for the average Joe to talk, as questions, see a dr, get help, be more empathic. Once again thanks and I hope your mum gets better!
Katrina
Thanks Rachel. I’ll be ok! You too! X
Mishaps and Mayhem of a gluten free life
I admire you and thanks for your support. Xx
Jo from the farm
All the best Katrina, I had surgery 8 years ago and haven’t been on any medication since, though I know I still have Crohn’s, but just something you get use to, obviously my symptoms are just mild… my brother had surgery 17 years ago and it’s like he doesn’t have it anymore… thinking of you and take care xx
Katrina
I am not sure whether surgery is an option for me – maybe soon though. I’m not sure. I’m hanging in there. Hope you are ok! X
Rozalicious
This post is very timely for me. My 5 year old son is just starting down the road of inflammatory bowel disease and while it may not be severe it has been a bit of an eye-opener to be presented with so many conditions that we were not aware of. We are awaiting the specialist appointment where the poor little man will find out when he has his colonoscopy. Wish us luck! Take care of your lovely self!!
Roz
Katrina
Hope your son is ok too! Wow, he is little. Poor little fella! X
Margaret
Hi Katrina
I found your blog last year via A-Ms blog, and I’ve enjoyed it every day since. Just wanted to say, watch out with the Shingles – if any of your boys, or you, have not had Chicken Pox they can get it from someone who has active Shingles. Not to be the bearer of bad news, but tell your mum to take care of herself – Shingles can come back – usually when you’re stressed and run down. I’ve had it twice. First, 10 years ago, the week before I had to return to work after maternity leave (obviously stressed over leaving my 11mth old son) and the second time two years agao when I was just plain run down – looking after two busy boys (now 11 & 8). To everyone else out there – the main thing with Shingles is that you have 72 hours after the rash first appears to get the drugs into you. If you do that you’ll be better within the week. If not – you’re in for a horrible few months!
Love your blog!
Margaret
Katrina
Thanks Margaret! Mum lives over and hour away and I haven’t seen her for a few weeks. The boys haven’t been near her either. She got the drugs within the 72 hr period, so hopefully she improves soon! Thank you for commenting xoxo
Jo from the farm
yeah I’ve had the shingles and my son was 9 months and I was still feeding him and he got chicken pox from me… it’s not much fun:( love to ya mum xx
Katrina
Thanks Jo! She’s pretty tough – but what a crap thing to get though!
Anna
Hi Katrina,
I really do hope you find something that will help you manage your Crohn’s and not leave you with nasty side effects.
I have epilepsy and over the years have tried a range of different medications to find a combination that works for me, and I understand how frustrating it can be to not be in control of your medical condition.
I will look forward to hearing how this trial will go for you, and sincerely hope that you will get some positive results to help you manage with your condition.
Katrina
Thanks Anna, I feel like I’ve been trying to find the one for years… sometimes I think it’s easier just to put up with the sickness than fiddling and swapping etc… there’s always side effects with new drugs and really, I have no idea what I am putting in to my body! Hope you are ok too xoxo
Cathy
It sounds like such a frustrating roller coaster. But I do detect a positive note in your writing and attitude, and that’s half the battle sometimes. It can’t be easy doing everything you do while running back and forth from doctors and hospitals. Really hope the new drug works for you! xx
Katrina
Thanks Cathy x
Samantha
Fingers crossed Katrina.x
Kate
Hi Katrina,
I’m a fellow Crohny from Melb, and am also on 6MP and it turns out I am also a shunter.
I’ve just been prescribed the Allopurinol and was wondering how it turned out for you?
I’m usually pretty upbeat about my crohns, but it’s just taking too long to get my meds right at the moment
Hope you’re going well xx
Katrina
Hi! I’m feeling awesome at the moment. It’s like a switch has been flicked. I think it’s been working. It took about 12 weeks to work though. Hope u see some results soon! X