intro and rant

hi joined sometime ago but have only been reading so far so thought id introduce myself.

i was diagnosed with IBS many moons ago, but very mild alcohol spicy food triggered pain and being sick. I've also had depression, well managed on meds, since teenager.

so, about 2.5 to 3 years ago i started feeling ill after eating, pains cramps and nausea that would basically leave me immobile for the rest of the day. still have to work, so gradually it got later in day before i'd eat and the amount i could eat before triggering stuff got less.

got good GP and after losing 7 stones in about 10 weeks or less, and waking up on floor after passing out i had a meltdown and ended up in with gp after emergency app was made. within 4 weeks i was at hospital to start tests, symptoms were exactly the same as for bowel cancer so that's what they started looking for, over year an a half i had every scan, camera, blood test etc that they could do. the hospital where i live has the country's top IBS consultant there, so he took over case, which after more tests he diagnosed an extreme form of IBS-d+c with clear links between stress/anxiety and weight loss, anorexia due to seeing food as levels of pain, with a prognosis of better management of symptoms the best outlook. i had been taken off depression meds as they were aggravating IBS as side effect was constipation. and still haven't found antidepressant that works, i'm in tears a lot of nights when its top much and have isolated my self so much ive been diagnosed with agorophobia.

on a daily basis i'm feel like, what a lot of you describe as a flare up, permanently bloated, stomach cramps, and pain. the only food i can eat at all now is stuff like yogurts , custard, rice pudding or banana smoothies. im on prescription of build up drinks and fortisip juice. the medication combination that has me at what is tolerable compared to how bad it was, is, domperidone 20mg thre times a day, for nausea and to force stomach to push any food through quickly, alverine, and colpermine 3 times a day. 2 marcogol laxative drinks. olazanzapine, sertraline and zopiclone in the evening.

I've now been put on enhanced rates of disability benefits, and been put on ill health retirement, which has restrictions on what work i'd be allowed to do if i ever feel well enough to try working,

when my sons home from uni we get a fish from chip shop, which i eat over about 4 hours, ill start getting nauseous and fall asleep usually, any other time i'm too scared to even try eating like this as i'm on my own, and I've been lucky to not hurt myself before with falls due to dizziness.

this last week has been a reminder to how bad i can feel, all due to one stupid thing. went to bank on Wednesday to check my benefits were in as there may have been a change due to starting pension. less than half my usual amount had gone in.

i called office to be told that i must be getting confused as i didnt have a claim for benefits, after ages convinced her that i had been getting them for over a year and she promised id get a call back. when i checked online bank money that had been put in was job seekers allowance. so the meltdown started, didn't sleep for 2 night, panicking which just escalated when letter from council arrived telling me to start paying full rent as benefits had been stopped. by the time someone called me i hadn't slept in almost 3 days and couldn't remember when i last ate or had meds and couldn't move off couch due to pain. i,ve also lost a stone in weight in a week.

i was told that they were sorry but they had recorded my £80 pension as £800, so when this amount was flagged on system they just automatically cancelled all my benefits. so one persons stupid mistake caused me to totally lose control and the IBS to become unbearable again.

well, thanks for letting me rant here, and thanks for all your posts that do show that your not alone in this crappy illness.

7 Replies

  • Thats very discouraging to be seen by top git doc for ibs and not to be helped.

    Maybe hospital again ? Even to sort antidepression meds for a start ?

  • Hi scotgaz.i feel for you i really do.people that dont understand about ibs havent a clue how bad it is.mines been going on for months.dont feel alone because thats how was but the people on here are with us all the best wishes.xx

  • Don't worry scotgaz, you are certainly not alone. I understand how IBS sufferers can think this as the medical profession are so bad at helping. For an illness that is so common their knowledge is shockingly poor. I have seen 3 gastroenterologists. The first said IBS was psychosomatic and did not really exist. The second said I had IBS-C, gave me no advice and said they did not need to see me again! The third believed in it's existence but had little advice and seemed to cofuse it with food allergies!

    I've had IBS-A for just under a year and still don't know what food triggers the flare ups.

    I strongly believe the mind-gut relationship is very strong. Stress is a big factor. Google "mindfulness" and research it as it helps me relax.

    I was passing out a lot when it first started, ending up in A&E with concussion, cut's & bruising to the head.

    I'd recommend trying a probiotic. I've just completed a trial of Clever Culture's Bowel Calm and have been feeling much better. I also take Heather's Tummy Tamers, enteric coated peppermint pills, 20 mins before eating.

    Good luck! :)

  • Also, if you haven't already try the FODMAP diet :)

  • So sorry for you Scotgaz, the problem with the benefits has of course just exacerbated your IBSd problem and you have my sympathy. When you have regained some energy I suggest you talk to your MP about that. It is appalling and wrecking so many lives, also making people ill with anxiety and stress. Your GP sounds like a good one so that will help, don't be afraid to go and talk to them. I had a similar problem with a severe flare up and went down to just over 8 stone, I too was on Fortisip and porridge, similar to yourself. At the time I was also in an extremely stressful situation as a carer for two people, trying to work (my business, I had to give it up), so I have some idea of the awful traumas you are going through. I did come out the other weight is normal, I still get flare ups, still have the tests, still worry. All I can do is give you some hope that it will get better. Don't be afraid to ask for help, and don't try too many of these 'faddy' diets (they never, ever worked for me), eat small amounts when you can. That's what my Gerontologist told me and it helps. Good luck.............

  • Hi Scotgaz:

    I really feel for you. I had problems getting my disability benefits. After about a year, I finally got my benefits in July. Keep on fighting to get your benefits. There are also a lot of IBS sites; one of the best is "Help For IBS". It is run by Van Doross, She has had IBS for over 20 years. She has several books, teas, Peppermint capsules all for IBS. Also, there is the Fod-map diet. I wish the best. Take care.

  • thanks for the replies, i see GP regularly to monitor weight, bloods, and they check regularly for any new meds that may help. problem here in Uk is there's very few that have passed trial stages yet. the domperidone for example, is only one in UK that does what it does, in states there's about 5 different kinds. my IBS seems particularly reactive to stress so now that i'm not working and benefits sorted , life should become less stressful.

You may also like...