Just Jenny - new and Ive been pretty blue

Hi there, My name is Jenny and Im new to this forum and to Crohns, 56 years old and last year lost my job and my home after a flare that wouldnt stop following 30 years of not being diagnosed correctly :eek2: having been told I had severe food poisoning (even at ER!), rumbling apendicitis, slight bleed in the gut etc etc, not to mention being neurotic! As it turned out, one concerned county GP took me seriously and finally after having to go private (due to pain and weight/strength loss) dicovered the crohns test was 'off the scale' and my gut partially blocked and/or full of big swollen boil looking patches (sometimes on patches) and the illium looked like half cooked mince meat stalagtites and stalagmites. I was wacked on heavy duty steroids ASAP and left on them for nearly a year - seriously the drug had so many problems of its own initially I just though SHOOT ME but slowly symptoms began to abate - a degree of pain never left and funny tum still very touchy and loads of dysentry but that was so much better than lying in bed afraid to move or eat and clutching the phone wondering if I should dial 111 every day. The weird thing was, other problems I have lived with for years ALSO disappeared. Severe joint pain in a heel and my thumbs disappeared, swollen lumps down the sides of my toungue making it hard and sore to swallow - gone! And swollen gums and loose teeth came right and toothache gone. As well sore lumps I used to get deep under my arms disappeared.

So - an MRI showed that scar tissue isnt yet bad enough to require any innards to be chopped out - yayyy! They put me on a different steroid which works through my bone marrow (and isnt so strong I think) and started to wean me of the mean drug - the less I took the more symptoms returned but as yet Ive had no reason to wonder if I should dial 111 BUT Dysentry has become worse and Ive developed the sore mouth again and loads of boils, but the worst change is that Im getting the joint pain back but its much worse - and it seems to move in intensity sometimes even day to day. I have it permanently in my heels, thumbs, real bad in my shoulders and off and on in what feels like my spine/hips. On ocasiion I can hardly move its so painful, other times its an ache I can live with.

I few weeks ago I had an epiphany, :dance: after a year much spent on the couch and the loo, Ive decided bugger it, Ill do what I can and live life to the best I can. I have a motorbike and decided to save up for he petrol and ride and too bad about the pain. I joined a gym under a hospital scheme and it kills me some days but at least Im regaining fitness and any adventure crohns will let me do - even if its a push Im up for it! Ive crapped myself a few times now in public - but Im ready for it and ppl are cool. I told friends recently that I have a disease that makes me pooh my pants sometimes, they burst out laughing - I sait ITS TRUUUUUE!! and they kept laughing! Well thats the attitude isnt it! :rof: Dont get me wrong, I get REALLY blue some days - buts thats OK - Ive got a rubbish disease and it can bring me down sometimes physically and mentally, but Ive decided I wont let it keep me down - so there you are, thats me. Id love to hear from peeps with similar journeys and symptoms, I live in the country in NZ and feel like Im the only person in the world with crohns sometimes! Jenny

Hi Jenny, welcome to the forum. I'm sorry to hear about all your struggles. Nobody will laugh at you about the poop disease here, although sometimes we need some humor and have a good joke about our disease, it's very serious and no laughing matter.

I also often get sad about the toll it's taken but I try to focus on getting the right treatment and the hopefully brighter days ahead.

Also, you aren't the only one in NZ, we have a few members here from there and you have an IBD organization.

http://crohnsandcolitis.org.nz/

Hello and welcome to the forum

Just to confirm you are still under the care of a GI? I am wondering why they are sticking with long term steroids fo treatment rather than getting you onto a maintainence med that will keep the tum settled for you - have any alternative meds been discussed with you or the current treatment regime explained? Have you been given any type of guidance on diet? The returning symptoms that you are getting can definetly be contributed to the crohn's but I think it is also worth asking your GI or GP to have your vitamin levels tested as this is a common area for us folks spto suffer deficiences. Also are you or have you been put on a calcium supplement for whilst you are on the steroids?

AB
xx

Hi Jenny, loving the attitude and outlook you have! Good inspiration and welcome.

ANGRYBIRD, yes I am under a GI but here in NZ the wheels of our free health system grind very slowly unless you are nearly dead. When I did see him - the second visit in 18 months - he told me there are two drugs approved by Pharmac generally used for Crohns. I have come off Entocort which did its job, sort of, but made me as miserable as miserable and I am now on the first of the approved steroids which he explained works through my bone marrow to suppress my immune system. It doesnt seem to be doing such a great job other than (so far) not allowing damage that makes the pain excruciating and you feel like youre having baby! Pharmac is a NZ Govt org that buys drugs in bulk and provides them at no cost or cheap. Drugs not approved you pay for yourself, as Im now on about $400 worth of drugs (I have other health probs) a month I could never afford to pay and some non-crohns related keep me alive. I take nothing else for Crohns other than the steroid. Thanks for the advise re vitamins - Ill ask next visit. I do eat relatively well now - I have a high pain tolerance which allows me to cope with the after effects of eating, I also have worked out that sugar free, gluten free and lactose free really helps and some foods I cant touch like coldslaw and nuts. Thanks again for the advice.
BADBELLY (are you a relation of badjelly the witch? LOL) Thank you for your encouragement - a year ago I wouldnt have inspired a thing - it was pretty black there for a while but you learn to adjust and cope and make a new life married to crohns dont you? At least we are alive - Facebook is now my best friend LOL - I didnt know what it was til I got Crohns Hope you are well and happy.

Jenny,
Welcome to the forum. Like you it took them years to find my crohns. I'm 62 and they DX me at age 61. I did have to have 3 operations in the last year or so.
You said it right, I not going to let the crohns win. I find that if I keep my head up I do much better. Thank you for your story.
Come to the chatrrom sometime, we have alot of fun there, hope to see ya.
Jim