Making the Best of a Shi$$y Situation :)

recent picture of me

recent picture of me

Intro:

Diagnosed in 2008, went in to remission within 6 months, just recently had a ghastly flare up (September 2013) now trying to hold down FT job with no energy and on day 6 of 25mg Prednisolone. On a positive note I am finding myself insisting every day on finding something positive about my life. I have a beautiful supportive partner who helps me get through the down times when things get too much.

Some more about me:

I am from Sydney Australia, I am an accountant who consults to small business, live near Bondi Beach and love the life that I have.

Symptoms:

regular BM, getting firmer but still blood and mucus present. Painful, painful tummy, GI has taken me off Sulfasalazine because of the headaches, joint pain, sciatic pain (a nightmare), nausea, brain just not quite as sharp as it normally is. and NO ENERGY to speak of :-(

Making the Best of a Shi$$y Situation

How long does a flare up stay around for?When does your energy come back?
Does diet really matter?

I would give anything for my energy back, I had just celebrated 45 days cigarette free which was a monumental achievement for me, I was exercising, running down the beach, loving life and woke up one morning feeling like I had been hit by a bus. It was that horrible feeling of dread when I put my symptoms all together and realised my UC was back, I cried all afternoon.

My partner has been truly amazing – he is the sort of person who never gets sick so it’s hard for him to understand what is going on but he asked me for some links to UC so he could get a better understanding of what I am going through which was so sweet.

My biggest concern is that My last flare up coincided with my stopping smoking back in 2008 and I started smoking again 8 months later. I am worried that taking up smoking kicked me in to remission due to the stopping smoking and consequent flare up that has occurred this year – make sense to anyone? Trying very hard not to just go buy a packet of cigs right now!

I am also worried about the articles and law suits i have been reading about in relation to UC being caused by Roaccutane which I was prescribed in 2002, feel like I have brought this on myself.

The good I can take from all the negativity is that I force myself every day to think positive – not n the Pollyanna way but in the “I am tougher than this and I won’t let it beat me”. tenacity is becoming my mantra for everything, that and my list of things I want to never take for granted once i get my energy back!

Medications:

Sulfasalazine Pyralin EN worked first flare really well.
scared about the long term effects about Prednisilone.
What does everyone use for pain relief?

written by Melissa J




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8 Responses to Making the Best of a Shi$$y Situation :)

  1. Amanda October 9, 2013 at 4:27 pm #

    Hi Melissa,

    I live in Sydney too and have UC, it’s almost 10 years since my diagnosis. I’ve been on Immuran for about five years with no flare ups. I have a great doctor, and I currently work full time, but I struggle with fatigue a lot of the time!

    I think my UC was brought on by stress, I was in a very busy job this time ten years and was having problems with the relationship I was in at that time, I was very anxious and worried and I think that’s what triggered my disease. I’m also of Jewish descent which is a contributing factor.

  2. Lindy October 9, 2013 at 4:37 pm #

    Your flare coinciding with your stopping smoking makes perfect sense! UC is the “non-smokers disease.” When I feel a flare coming on, my go-to is smoking. It’s almost ridiculous how quickly it can put me in remission! As much as I hate relying on that, it’s a quality of life situation. Obviously there are risks with smoking, but I honestly feel like I can live normally now if I do smoke!

    Good luck! I’m now trying 6mp. I respond great to prednisone, but my bone density is lessening. 6mp seems to be going okay right now. Although I was just hospitalized with a kidney infection that I’m sure occurred because 6mp is an immunosuppressant.

  3. Juliet
    Juliet October 9, 2013 at 4:39 pm #

    I can totally agree with your situation regarding the smoking!!!!!

    Hi Melissa!

    Every time I have quitt smoking, a few months later I am flaring again. I last quitt in Feb 2011 and have had the worst time ever since with 4 flare ups, one of which resulted in a hospital stay in Jan 2012. This year I’ve had problems since Feb/March and am on my 3rd course of steroids!!!

    I’ve been so tempted to go buy a pack of fags! But do I really want to risk lung cancer or emphysema??!!!

    I’ve been seeing a naturopath who is giving me great guidance with diet, supplements and herbs. Sticking to the diet is hard especially when you get setbacks and feel like why bother, or I just want to be normal and eat normally!

    It’s so good that your partner is taking an interest and trying to find out about the disease and to understand its effect on you. That means lots, trust me! My ex was a total selfish %#nt!!!! He made things worse by being a constant source of stress!

    With regards to the Roaccutane, I’m sure it didn’t help matters. But you didn’t bring this on yourself. I think it really is a combination of factors and events. My brother had that evil drug years ago and had such a bad reaction to it. He doesn’t have bowel issues but I do. Never think its something you did.

    There are steps we can take to improve the quality of our lives, we just have to find what works for us as individuals.

    You’re very lucky to live in Australia by the way! Such a beautiful country, I long to return :-)

  4. Andy October 10, 2013 at 12:40 am #

    The link between UC and smoking is well studied and proven. I actually got UC while smoking, but my flare up’s were much less severe when I was a smoker.

    There are two observations:

    – Smoking IBD patients have more diverse gut bacteria, and more butyrate producing species.
    – Smoking IBD patients and thicker gut linings(more mucus protection)

    I could post links, but will take forever for Adam to approve the post :p

    Smoking isn’t the only option here, I used patches/gum to get me out of a flare once. Most of the medical studies involve patches/gum.

    In the end I left nicotine behind, I haven’t taken any in 4 years. Being an eternal slave to nicotine seemed as bad as being a slave to UC.

    You could take a look at helminth/worm therapy it it works via a mechanism stimulating mucus production.

    Also checkout Mutaflor, it is a very strong probiotic available in Austrailia and a few other places. Different to Lacto/Bifido(VSL etc) based probiotics it is based on a non toxic strain of E.Coli that can better compete with the nasty that are implicated in UC. I have been making yogurt with here for the last few months, really helping with the fatigue and general symptoms.

  5. Graham from England
    graham lee October 10, 2013 at 4:49 am #

    Hi Melissa,

    Smoking has given many UC’ers their lives and no doubt their colons but some will pay the ultimate price for doing so. After quitting for 2 years I am back on them temporarily to get my colon back to 100%. After a serious reaction to a UC drug this is probably a reasonable option to take for me at least.

    My record by a very long way without cigarettes (and meds) was over a year by taking a big spoon of extra virgin olive oil, morning, noon and night, on an empty stomach.

    It works best when you start with a healthy colon as it may not pull you out of a flare permanently. EVOO’s benefits are well documented and it should help with pain relief. I had a back problem for years but not since taking the oil for two years. Look up oleocanthal, it’s a big component in extra virgins and you will be surprised of its powers. Australia has some great oils so why not give it a try, not quite as effective as full time smoking but so healthy and very effective for some of us at least.

  6. Adam
    Adam October 10, 2013 at 7:02 am #

    Hi Melissa,

    Thanks again for sharing your story. Super interesting comments above, that I hope will give you some perspective especially regarding smoking.

    As for your questions:

    “How long does a flare up stay around for?
    When does your energy come back?
    Does diet really matter?”

    Flare ups last for a varying amount of time. There is no set amount of time that a flare can go on for. I think its safe to say that some “flare ups can be anywhere from a few days to several years, but most of the time, UC’ers can find ways to get things under control in a few months.(it does vary greatly)

    Energy coming back…also varies. If there is lots of weight loss associated with a major flare up, it can take several weeks or even a few months to feel close to/ or back to “normal” again. I had a severe flare up that led to my diagnosis over 5 years ago (Oct. 2008) and it was several months before I felt my energy was back to where it should be. (I had lost about 40 pounds as well and in bed for a long time). so it all depends. But one thing is for sure that once the colon is healed or near fully healed shape, the recovery speeds up much faster compared to when symptoms are still present.

    Does Diet really matter?…

    For sure my personal answer is a 100% yes. Staying away from alcohol, grains, sugars other than from fruit or honey, staying away from dairy, staying away from processed foods from the grocery store that have ingredients which I could never pronouce… its helped me get back to 1 poop per day. (sometimes 2 sometimes none). Does diet make as big a positive difference for everyone with UC? No, some people have better results, some have worse results.

    I wish you the best Melissa, just googled some pictures of Bondi Beach…NICE!!

    -Adam

  7. Melissa J
    Melissa October 10, 2013 at 4:00 pm #

    Wow, thank you everyone for your responses, it is such a reassuring feeling knowing I am not alone!

    I have had such a rollercoaster ride over the last 4 weeks ( I cannot believe its only been 4 weeks) –

    I have only been living in Sydney Australia for 2 years after moving with my gorgeous partner Scott from Adelaide SA (wine country) where I lived for 26 years so I did not even have a regular Doctor let alone GI as I had been in remission since 2008.

    I went and saw the GI, he prescribed 50mg Prednisilone daily and wanted to book me in for a Colonoscopy in 3 days. Well I paid the bill went home and completely lost the plot, couldnt stop crying and did not know what to do I felt so alone!

    My GI Professor Bolin has been fantastic though. I rang them back and said I just couldnt go through the potential side effects right now, I am an accountant, I work on high pressure projects and I am studying for my CPA and needed time to finish them before I went on anything dramatic as I needed my brain to be working at full capacity.

    So he suggested just 25mg Pred, and to put off the colonoscopy. Phew Then came a night out with the girls and too much champagne and I woke up in AGONY the next day, I literally wanted to die. I was experiencing left side stomach pain and also the worst sciatic pain you can imagine. I was sick, couldnt lie down and all I could do was pace the floors.

    That was when I told my partner what I had and I also found this site and my life has been SO much better since then.

    Thank you everyone and thank you Adam so very much!

  8. mj October 11, 2013 at 3:13 am #

    Hi Melissa,

    I completely relate – I’m on 50mg pred at the moment too, and it’s been a crazy rollercoaster the last 2 weeks. My super supportive hubby doesn’t know what to make of my mood swings and pred makes working on anything that requires brain power impossible.

    I’ve had UC for about 13 years now (I’m almost 31). I have to admit I’ve been in a flare-y state for most of the year. I was on Pentasa and Imuran earlier this year but wanted to try and cope without the drugs and their side effects so came off them earlier this year (without telling my GI, oops). I was managing OK with acupuncture, exercise, diet restrictions but work stress kept on creeping up in my life without me dealing with it properly.

    I’m a fulltime and freelance graphic designer and I was burning myself out, working 8am-10pm most days, plus trying to hit the gym and have a social life. I was trying to manage my symptoms with Imodium and Nurofen Plus/Pandeine Extra for the cramps/joint pain/headaches. A little bonus with codeine – it stops the urgency/amount of BMs, so I’d also take some before going out to dinners/bars.

    But all this extra stress on my body hit me hard and I really paid the price. I had a whole week off work (I’ve NEVER done this before), went to hospital on wednesday because of dehydration/exhaustion/pain and was told to take Pred 50mg and Pentasa.

    • FLARE
    I think a flare can hang around for as long as you let it, I seriously have been suffering for most of the year but I have that stubborn “I’ll be ok” attitude… I paid for that this week, definitely need to listen to your body and figure out what’s causing the flare (for me = stress).

    • ENERGY
    Energy is a hard one, some days I’m amazing, the last week I’ve been horrible. Might be worth checking your iron levels, I generally need an iron infusion twice a year to get back to normal energy and brain function.

    • DIET
    Diet does matter – I’ve been good this year (avoiding gluten 95% of the time, mostly avoiding dairy, no beer/wine/cider but will always have a vodka), but let it go a bit nuts lately (coffee & chocolate to get through those hard days).

    So this time I’m trying the SCD diet – been on it today (with gatorade, although I know that’s a no-no) and I’m actually already seeing an improvement. My week-long cramp is finally going and even my mood/energy levels are coming back. SCD works for so many others so it’s worth a try.

    Good luck with your studies, you are most definitely not suffering alone and make sure you take care of yourself :)

    ps if you read my whole post thank you, obviously I had a bit of UC venting to do today!! haha

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