what is the main trigger for your anxiety? ibs taken hold of my life.

[LunaRose14]

Mine started off about 5 years ago when i got diagnosed with ibs. That gut wrenching sinking feeling that you think you're going to have an accident in public and won't make it home in time to relieve yourself.
Every since then my anxiety about going to the loo/ needing the loo when out has taken over my life.
I'm now agoraphobic and currently can't leave the house at all.
I did get to a point where I was able to do simple things just to get by with minor worry like school run, small trips to the shop and if feeling really brave a little trip out.
All of the coping mechanisms I had once taught myself no longer comfort me. I wake up anxious and on the brink of a panic attack until I finally pass out exhaustion in the early hours. No matter how much i tell myself "you can alway come straight home" "I don't care if I have an accident" "so what if I go to the loo in public, everyone has to go" just doesn't work and it is beyond exhausting!! And one experience anything similar?

Have you seen a specialist? Lots of IBS info on health threads here. If you haven' t read them already I would recommend trawling through them and going back to your gp with a list of questions. You shouldn't have to put up with this.

Thank you for the advice, I'll have a look for them now.
I was referred to a gastroenterologist about 4 years ago and got given the all clear for anything more sinister.
To be honest it isn't so much of a problem now physically it just mentally. Even if I'm having a good day, week, month I can't convince myself to get out of the house.

Yes I know that feeling. Heart pounding, anxiety in your stomach and chest. Have you tried therapy or hypnotherapy? I think someone tried acupuncture. I take an Immodium before a day out or a meal out - it lessens the anxiety. Not a popular choice with everyone but works for me.

I've tried cbt in the past but after 8 sessions I just couldn't feel it working for me and the constant thinking about it was making me want to have a breakdown.
I hit rock bottom again last week and had to go to the gp because I've slipped into a dark depression about it all with the anxiety ramped up on top and have been put on 50mg sertraline which isn't helping the anxiety and has given me an upset stomach just to add more anxiety. I have left the house for a week now and today my mil is over and I'm hid in the bedroom banning the kids coming upstairs because i simply can't keep my anxiety under control any other way.

Hi Luna I have been exactly where you are now - I first got IBS 15 years ago and it completely controlled my life and I too became almost housebound and lost lots of friends as I gave up on a social life. I have tried everything from CBT to hypnotherapy to strange 'alternative therapies' some worked for a while but I still ended going back to square one, worrying about going out and fretting I needed the loo as soon as I did. Four years ago I started seeing a dietician at my local hospital and was put on the Low Fodmap diet, its tough but has changed my life around:) Although my anxiety does still play a part in my ibs it no longer controls me. I really would recommend it. On a side note my mum has just come off sertraline as it was, like you, giving her a bad tummy, so it may be a common side effect of this medication.

I understand how you feel.
I have tried every IBS tablet going and now awaiting to see if it's anything else because it isn't Coeliac either.
Everywhere I go I have to know where the loo is, I have to be careful what I eat, and when I eat it's within five to ten minutes I need the loo/ very windy/bloated. It's got to the point - that I get nervous about going out because of the bloating etc. I have lost my sense to have fun :/

Do you use inmodium? I have ibs-d and during times of stress or anxiety I def get a fair amount of d. Could you take an inmodium or 1/2 of one an hour before you leave the house to bung you up? Doing that would definitely help with the phobia of being away from a loo and the agoraphobia. Once you are comfortable doing that then work on trying it without the immodium. Good luck.

Hey
I take up to 50 Imodium a day, eight codeine and numerous other drugs to control my badly behaved bowel and so I can work and look after my boys.

Please Don't let this control you and take away anymore of your precious life. See someone this week and make some changes.....

please don't use immodium, get a second opinion, as i was mis-diagnosed with ibs but i actually have inflammatory bowel disease which in usually inherited and was only found with biopsies of my bowel, use pads at the other end and wear dark trousers just in case, try and elimination diet, where by you only eat 3 basic foods say bread, rice and pasta for at least 3 days then add one more food after each 3 days, eventually you will find out what your body can digest

Have you had a SeCHAT test to rule out bile acid malabsorption? An astonishingly large number people who think they have IBS actually have BAM and gastroenterologists are behind the curve on this. There is medication to treat it which is very effective.

Also recommend the low FODMAP diet - very good scientific evidence to show that it helps in IBS.

Sorry should point out I have crohns not ibs

Thank you all for all of your advice. I definitely will ask for a second opinion when I see my gp in two weeks time to review meds.
I was referred to a gastroenterologist but he couldn't see anything wrong so discharged me and that was that. I was given colief I think it was by the gp but after a couple of months it stopped working.
Sometimes it gets so bad no even Imodium bungs me up so i still have the anxiety about going out.
I managed to go to the shop today, the first time I've been out since Monday when i had to go to the doctors. I think I'm going to cut out lactose and wheat for a while and see if that helps. I find myself not eating in the day anyway because I'm so anxious i feel physically sick.

LadyPeter do you have experience of bam? The reason I ask is I googled it after reading your post as I've had ibs for nearly 20 yrs. One of the medicines for bam is questran. I took this for years prior to getting ibs for hypercholesterolaemia and it seems a huge coincidence to develop ibs-d after stopping. Hmmmmm

I had really bad IBS-d, it really was awful, I was taken immodium daily just so I could do normal things, had an emergency camping loo in the car ... just incase, barely went out socislising and definitely not for dinners.

6 months ago I gave up Gluten (I've previously been tested for ceoliacs but it came back negative) as I'd heard it can make diarrhoea worse and tbh I was desperate and willing to try anything to get my life back. In the last 6 months I've taken immodium twice - both precautionary because I felt a rumbling rather than having any diarrhoea. It has been utterly life changing for me. Never again will I eat Gluten as it's just not worth the effects.

I'm not saying that your's is definitely a gluten thing but it might be worth a try. If you can stop the ibs then hopefully with time your anxiety will ease and you'll get your life back.

Big hugs, ibs is soul destroying.

I had bad IBS for almost 3 years, it was the contraceptive pill. Utterly fucked me up. I asked at FP clinics again and again if it could be the pill, all said noooo, course not. I had an appointment with a private gynaecologist about my completely messed up cycle, who just said, 'oh yes, progesterone slows and alters bowel function... The FP clinics simply want you to stay on it'. Years of my life I'll never get back. All those yoghurt adverts and probiotic adverts for funny tummy's are always aimed at women- for bloody good reason, but no one wants to admit what the real problem is likely to be.

Good luck anyway OP. Try reading a book by Dr Claire Weeks called Self help for your nerves, it should help the agoraphobia x

ridingthegravytrain sorry, have only just seen your question.

Yes, I've just been diagnosed with BAM and am debating whether to take meds or not. I googled after a gall bladder op which seemed to make things so much worse, and that's how I found out about it, although I am pretty sure I have had it for a long time. I do think I have some IBS symptoms as well, so I am going to try the low FODMAP diet to see if that irons anything out, and then reconsider the meds. I have a great gastroenterologist.

So, yes - it does seem a lot of a coincidence to me. The SeCHAT test was a bit time-consuming but not painful so I would definitely recommend asking for it.

LadyPeterWimsey, funny you talk about gall bladder removal, i had mine removed over 10 years ago, lots of gall stones getting stuck they caused sickness, the runs and i was starting to turn yellow just before they took it out!! but as a knock on effect later discovered i had colitis!! what is BAM?
have you have camera's and biopsies?? that's how they found mine! nothing shows with routine blood tests for me either

LunaRose14 don't wait 2 weeks, go back now and ask for camera's there's no point waiting 2 weeks it can take a while to actually get the appointment the quicker your in the system the better, even if its nothing, being stuck indoors and too scared to eat and go out is not nice, i know i've been there, many times! other symptoms of IBD are depression, tiredness as well as the constant runs!

www.uhcw.nhs.uk/bam/what-is-bam

I think I have Type 2 which got worse post gall bladder surgery. It can also cause gall stones, hence the need for the surgery!

I'd second cutting out gluten and doing low fodmap. I'm on day six and the difference is unbelievable.

Please try it, it might be the answer.

Bit gross but have you had a stool test? I have also been suffering for ibs symptoms for 5 months now and have recently had a test which detected a parasite - blastocystis which isn't harmful in everyone but can be in some people. Unfortunately standard antibiotics didn't work for me so will see another specialist in a couple of weeks to see what else can be done. I really feel for you - it's miserable. I also cannot tolerate Imodium as I feel really painfully bunged up the next day. Fortunately my d has calmed down by itself now but still suffering from bad gassy cramps and general discomfort. Low fodmap/gluten free didn't work for me. I definitely found being ill has massively affected my mood.,