For SM - with love :)
I tweet. Sometimes, I even tweet sense. I use Twitter and Facebook differently, Twitter for politik (homelessness etc) and crafts, and Facebook for friends and other stuff. I follow a lady called Sue - a couple weeks ago she tweeted the following:
Controversial tweet : I don't believe in IBS. It's nearly always something else a doctor is too lazy too diagnose
I won’t lie. At first read I was angry, really angry. And in my anger I thought: How can someone say that something I have (and suffer with, and have for many years now) doesn’t exist? Especially someone who does and has what suey does and has? But I kept quiet, I don’t know this woman and don’t like it when someone might think I’m being rude, but it was one of those inflammatory sentences that stays with you. (I should point out that this was her intention, as far as I can gather!) And the more I thought about it the more I realised that I didn’t feel angry after all, I felt terrified.
Because this is what I secretly wonder too. Partly because of the offhand way I was diagnosed in the first place and partly because help and medication (in the broadest sense of that word) has been up to ME, not my doctor. Over the years I have spent time reading about immune conditions and the interactions between IBS and P/COS (which I have too). I am not sure my GP thinks it exists either, and whatever it is, I certainly have something going on and it would help if someone believed it existed.
Whenever it gets really bad for a longer time - and by that I mean longer than 36-72 hours - I get really scared. I start to wonder what is really wrong with me. In pain and exhausted, probably bloated and awash with peppermint tea and altoids my brain takes itself off to imagine the worst - what if it’s ......... Cancer. Crohns, IBD, Colitis.... I see colonoscopies and all kinds of other results and procedures.
I wonder how long it will take for “IBS” to be a precursor state for other conditions. Immune response (PCOS links there) is now known to heavily linked to gut health. Part of me would like to know what might be in store for me down the line, but given that you can’t exactly go to your GP and ask for a diagnostic colonoscopy (well you could I guess, but I don’t like to think about what the response would be from mine, for certain) I am also scared of that too. What if they found something?.......................but more worryingly for me, what if they found nothing? What if I was once again left in the gap between mind and body? I was there once before and it took a long time to sort it out because nobody would actually listen to me. The links that are now being found do make me wonder why people with intestinal symptoms aren’t taken more seriously.
So I guess that whatever it might turn into, this is the diagnosis that I have to live with for now however incomplete it might turn out to be.
Thanks for the thoughts Sue, painful as they may be, at least I’m facing up to these things and in that I might be at least a little bit mentally prepared (tho I realise too that this is the stuff that blindsides you when you aren't looking!!) It never harms to have a weather eye on yourself. Bless You.
For anyone who is reading this and doesn’t know much about IBS....here are some fairly good links:
http://www.nhs.uk/Conditions/Irritable-bowel-syndrome/Pages/Symptoms.aspx
http://www.nhs.uk/Conditions/Irritable-bowel-syndrome/Pages/Causes.aspx
http://www.nhs.uk/Conditions/Irritable-bowel-syndrome/Pages/Treatment.aspx
In terms of descriptors, these pages are not too bad in describing my case. I am broadly stress-related although “stress” doesn’t cover it. I have been tracking my symptoms for years and have a fairly good picture of what works and what doesn’t.....and Sue, the “have you tried................” thing.............tell me about it *L*
FTR: Antispasmodics (don’t do much for me) Fibre (does plenty, not all of it good..) Probiotic yogurt (no idea what it does, but thank God it does it!), Peppermint tea (helps) Pilates (good for general stress, good for everything IMHO and when I was able to do class regularly, I had better and faster recovery and my muscles were just in better condition for coping with the aftereffects of spasmodic attacks). I have been recently prescribed amitriptyline but have not yet taken it....for me to know what effect its having, I need to be in a chronic spell lasting more than a couple of days. Presently I am not, thankfully.