Introduction:
Kia ora people!
Translation: Kia ora is a Māori language greeting which has entered New Zealand English. It means literally “be well/healthy” and is translated as an informal “hi”, so I thought it completely appropriate as a greeting to my fellow UC’ers!
I’m Anne. I’m 41 and I’m a Kiwi living in Australia and I have UC. I was first diagnosed in Feb 2011 after some pretty telling symptoms that eventually became horrific and scary… needless to say, here I am and it’s all a bit daunting to say the least. In fact, based on recent symptoms, it turns out that I may not have UC as initially diagnosed by my GI, but CD. A worrying concern hopefully to be determined by colonoscopy number 2 in about a week’s time. I am trying to stay positive, but it’s difficult to remain so, as I have experienced issues with my usual GP and the management of my symptoms which have bordered on weird and random, to robbing me of my usual kick-boxing, fit, happy self and turning me into a fatigued shell of no energy who spends way too long in the toilet!! Not fun, but it’s nice to meet you!
Some more about me:
Fun weird UC fact: I LOVE to travel! So much in fact, that I work in the travel industry. When travelling, which is pretty frequently, mostly I pretend I’m fine and ‘manage to manage’ when travelling long haul.
Unfortunately having UC has definitely has changed my perspective about planes and airports!! I’ve never really felt great about using public toilets(who does?) and nothing’s changed there really, except I avoid them even more if I can help it, but it doesn’t stop the urge…. to travel!
I’m married to an amazing British man, whom I met when HE was travelling around NZ (My home Country) 11 years ago. Let’s just say that it was fate, and we were engaged after 8 weeks and married less than a year later after immigration agreed it wasn’t a sham!! We made our home in Australia in 2006 and have been enjoying the sun, sea and sand with travel home to NZ and the UK every other year ever since. Christmas is the main debate…. We usually toss a coin and I win!!! ALWAYS. Hahaha!
Symptoms:
This is the bit that’s difficult as I have battled to get my symptoms appropriately recognised or managed by my GP (after diagnosis of UC by a GI colonoscopy) since 2011. He’s generally just brushed over most of it. Things got so bad that I started taking ‘selfie’s of the issues. Eughh!! I can hear you all now!! NO!! Not the toilet ones!! Geez!! I’m talking about the skin, joint and other stuff because usually by the time I get to the doctor, they’ve disappeared on cue. (Sound familiar?) The photos have definitely woken up the doctor. Yes, finally!! A picture paints a thousand words, it’s true!
I have the classic symptoms of UC. Frequent BM (at least 3-5 every morning before work and again after dinner).
Grumbles so loud that I have to just laugh and make jokes because they can’t be stifled!!
Bleeding, lots lately in particular and just general nastiness… you know what I mean.
But the other symptoms which have all appeared since I was diagnosed are the ones that really bother me. Rosacea. Badly. Across my face and chest and usually requires steroid cream or antibiotics to settle, but never completely disappears. Only started 1 year ago. My skin used to be so clear. I never had any issues on my face at all. Now it’s a constant concern and I’m 41 years old!
Joint pain. Wrists, elbows, knees and ankles. Particularly bad in wrists and elbows and the random puffy, swollen knee.
Eyes, puffing up every morning like I’ve been crying. Looks like I never sleep or I have an extreme allergy. Usually goes down by midday though thankfully.
Sleep issues, including restlessness, frequent toilet visits and general wakefulness and horrific night-sweats. Changing the sheets variety.
Fatigue is the worst. Have had to change from a full time to a part time role due to extreme fatigue. Used to be active, kickboxing 2-3 times/week in a full on circuit session + 45 mins brisk walking/day…. to sweet nothingness, if barely 20 mins activity. Too tired all the time.
There’s also bizarre rashes as well. Mostly on my feet and sometimes my legs. I bruise very easily and sometimes I don’t even know how I get them!
Resorting to Crazy Medical “Selfie” Pics Freaks out My GP!
What do you do with the skin issues? I am not keen to be given steroid creams, especially for my face, so I try to use natural and organic products where possible. I have always had sensitive skin since childhood, but since being diagnosed with UC it’s gotten ridiculous and I can’t seem to find something that works on a long-term basis. Any suggestions?
How do you like your GP? I have been told by a specialist organization that I shouldn’t even bother with my GP and go straight to the GI doc, but it’s not always practical, let alone the waiting to get in, even with private insurance. I want to have a go-to person that I trust and listens. I don’t like being given a medical ‘try this’ every time something crops up, but this is what is happening! I think he’s a bit unsure about ulcerative colitis patients. Has anyone found this with their GP?
I always feel like I’m complaining, but I know that I’m not the way I was and I want answers, not a prescription on a ‘lets see’ basis.
Have any of you had UC and then found out later it was Crohns? Just wondering as this is a possibility for me apparently.
Less than 3 years ago, I didn’t even know what UC or Crohns was! I’m still learning!
I can definitely pin point the beginning symptoms now that I’ve had my diagnosis. My Dad passed away suddenly in October 2010 and I clearly remember having extreme stomach pain and ‘knot’ like cramps at the time, out of nowhere. Stress and distress was what I assumed was the cause, but they never stopped. In Feb 2011 I got diagnosed after colonoscopy. I’ve been hospitalised once since then for 10 days in October 2012. Is it just the evolution of this mean disease? Stress, I mean?
Just wondering…
Medications:
Sulfasalazine is my current medication. I take other supplements including Calcium, Magnesium and Omega 3 with a very good multi vitamin each day.
I was on 2 x 2 500 Sulfasalazine daily. It has been doubled since last week after seeing my GI. I’ve adapted ok actually as I thought I might get headaches again like when I first started, but that hasn’t been the case thankfully.
When I was first diagnosed I was also on Colifoam but I have not needed this since 2011. Recently my GP prescribed it with no dosage directions after I complained of excessive bleeding, but there was no examination of any kind (including abdominal) which is why chose not to take it and I sought advice from my GI doctor directly.
The GI believes I will need steroids, but has scheduled a colonoscopy first to be sure. I agree entirely. I’m worried though as he now thinks I may have Crohn’s and not UC. Scary prospect.
I will wait for the outcome before panicking too much. Hopefully it’s not the CD.
written by Anne H
submitted in the colitis venting area
I’m Anne. I’m 41 and I’m a Kiwi living in Australia and I have UC. I was first diagnosed in Feb 2011 after some pretty telling symptoms that eventually became horrific and scary… needless to say, here I am and it’s all a bit daunting to say the least.
Hi Anne! First of all, I think your selfie idea is a great one – so many times I forget things and what they looked like. I have heard that skin issues can be common with UC – I think that I had skin issues that came as a warning a few months before my flare started last fall. I went to the dermatologist, who diagnosed me with perioral dermatitis. It was pretty gross – my face looked red and chapped, and I had tiny little bumps that felt like they were on fire. It crept up around my eyes, which was especially lovely. I did a lot of research online and learned of a very gentle skincare line called California Baby. I have been using that ever since- it’s all natural (and I believe organic). It has been the only thing that soothed my face. Something else you may want to consider is adding a probiotic – I have heard that those can help everyone with skin issues, not just those of us with UC!
Take care and feel better soon! Keep us posted.
Caroline
Thanks Caroline! I guess it’s part and parcel of having uc. I’m seeing a Dermatologist soon so I will probably find out more, but thanks for the info on probiotics. I’ve heard mixed reviews on whether they actually have any benefit for uc patients, but I’ll give anything a go if it has organic benefits! I’m currently checking out some organic skin care products as well so hopefully things will improve for both of us! :-)
She’ll be right maaaate. Bit of prednisone and Bob’s ya uncle.
Thanks Peter!! LOL. Maaaaaate!!! (Not sure if I want Bob to be the ‘FAT’ Uncle though! Isn’t that what happens with prednisone?? But I guess if I get back some energy then I probably get my kick back on! Catch 22! Say hi to NZ for me!
Hey Anne,
I know what you mean with skin issues – recently I had horrible red scaley patches up and down my arms – I think it’s got a lot to do with stress. My acupuncturist confirmed it. I was extremely overworked at the time, my colitis was in a horrible flare and then I had all this gross red skin to match! Since reducing my stress, getting back on western meds (pred/pentasa) and going SCD my skin is back to it’s normal self. I do get crazy bruises though that take ages too heal, half the time I don’t know where they come from either!!
In regards to seeing a GP/GI I think it helps to have a GP that knows a little about UC/CD. Recently I saw my GP like 3/4 times in 2 weeks while I was waiting to speak to my GI, my GP ended up putting me on antibiotics because I was so sick during this time and it made me worse. My GI got upset at this, and said it’s best to go straight to him next time… Even with private health insurance it can be exxy to deal direct with your specialist all the time. My GI is really good though in that he will take my calls without me having to go to his office to speak to him, especially if I am having an issue with meds. It helps if they’re flexible.
Whereabouts in Oz do you live? I’m based in Sydney and I am (secretly) half kiwi – my mum is from Christchurch :)
Good luck with your next colonoscopy, hoping that it’s only UC!!
Cheers,
mj
Hi mj
Secret Kiwi!! Hahaha!! Thanks for luck! I think I might need it. I’m originally from Christchurch too, but mostly lived in Wellington and Auckland. Been in Australia since 2006 in QLD . Lived in Perth for a while as well. I get itchy feet!! Luckily, itchy isn’t something I’ve really dealt with having UC. Annoying and irritating, but not really itchy. I totally agree with you about stress though. I’m 100% sure it’s a catalyst in flares and weird symptoms. Watched Adam’s video last night about the last survey results. Seems there’s no definition of normal for anyone with IBD!! I like my Gastro doc, and his staff are very personable and empathetic, which makes life easier, and I did get an apology from my GP clinic today and they have made me feel a lot better about my care plan going forward. I think it just took a nudge in the right direction and their knowledge I had seen another GP for a second opinion (because I copied the results into both GP’s and the Gastro doc) for some action. Well, starting the colonoscopy fast and prep tomorrow. Thanks for the luck!! I’m steeling myself up for the hell to follow…. !!