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Losing who I am to IBS-D

I posted on here a few weeks back as I had been having a flare up for months. I’ve been researching and trying a few things from all the advice I was given.

But for the past week it’s got worse to the point water is causing pain etc. I saw my gp who literally gave me a prescription of what I already have and told me to come back in a month.

I am exhausted, in pain and fed up. I’ve not been able to keep anything in with rushing to the loo anytime I eat or drink.

I’ve been trying to slowly sip water to make sure I don’t get dehydrated but even that’s causing nauseous and loo runs.

I live in west London so if anyone knows any private practices or anything that could help I’d really appreciate it.

I’m losing who i am and ibs is taking over my life no matter how hard I try to stop it. I have a 2 year old aswell so all he sees is a tired ill mum at the moment.

I’ve done low fodmap, I’ve done therapy, I’ve done no gluten, eggs or dairy. I exercise when I can and do yoga. I’ve had a colonoscopy, blood tests and stool tests and don’t know where to go next.

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Hi Lynn Loo - know the feeling. It's awful when you get these attacks. You mentioned you have been on a fodmap and do not have eggs and dairy or gluten. It is possible to have grain intolerances even if you are not gluten intolerant. If you have multi grain allergy you can have food intolerances which are not tested for on the NHS. I have wheat, rye, barley, maize and rice plus banana. I only found out through a test through Alphega pharmacy who have links with pharmacies with specialist services for allergy screening. It cost £70 but it was well worth it. Since removing all my allergens which included egg and dairy, Have been much better. I filter my water, as I do not like the chlorine in the water and can taste it. If you eat, mayonnaise, with malt vinegar, drink malt drinks, sweets, maltesers,

these are made from barley. Malt whisky too contains malt/barley. Maize - cornflour -

sweet corn - is added as corn syrup in many foods. Beers may contain barley derivatives.

Your doctor may have given you a drug to help relax your colon or prescribed fibre gel drink sachets. I take these and they help. I suppose you are not drinking milk. Sometimes you can go lactose free and it might help. If you have no allergy to casein milk protein you might be able to eat a little hard cheese. Stress is a major cause of IBS. As everybody is different having the test does pinpoint most food allergies. Multigrain allergies without gluten are slowly being recognised. Some people do well drinking Evian water. As aluminium is a known environmental irritant, I do not use aluminium cooking pans, or

kettle. You might find eating grated apple, with some oats- or porridge made of oats and

water with some honey might be easy to digest. I do hope you can see if stress is a major trigger. I found merbeverine - helped to relax the colon, without drowsiness, and the fibre gel helped a bit until I found the food intolerances which were making me ill.

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Hi thanks for your reply.

I will look into specialist services more. I have been looking but the only ones I can find cost a fortune and we are already on a tight budget with me not being able to work. I will look into other things you have mentioned thanks

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My reply won't be much help but you are me! I'm feeling exactly the same. So low. I could cry at any minute. Struggling to hold it together. ❤

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Thanks hun! It’s just becoming more difficult to keep everything together. My partner is very supportive and takes our son as much as he can but has taken far too much time off work so I’m on my own a lot and last night ibs just took over.

Hope you feel better soon ❤️❤️

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Hi Lynn Loo

Good news all your tests are O.K.

To help your gut which really needs food to work, have you tried the BRAT diet - plain boiled white easy cook rice, white toast, bananas and apples (tiny portions to start with).

Probiotics when your digestion returns to normal may help

As everyone with IBS knows stress is the big driver of the problem and worrying about your digestion or anything else puts it into a tail spin. For some people this means overeating for us it means the opposite!

Good luck.

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Amabile, stress may be the big driver of the problem for many IBS sufferers, but it wasn't for me - physical tension was. You might think tension is the same thing as stress, but tension is just tightness, and can be caused by other things as well as by stress. My tension was the result of connective tissue disorder, TMJ, a physical condition that builds up slowly following dental surgery or injury; it's like having your tendons all tangled up, tying you up in knots inside. It was really hard to figure out what was wrong, and the doctors helped very little with that, and being told repeatedly that IBS was caused by stress was very confusing for me!

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Hi

I've never heard of that disorder. It sounds really a really distressing condition. How did you get it diagnosed?

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I self-diagnosed. I thought well, although my gut obviously isn't reacting in the short term to stress, maybe I'm somehow storing stress over the longer term and never releasing it. I was aware there were parts of my body that seemed a bit tense almost all the time, though I'd never thought it was unusual. I spent time working on awareness of the sensations in my body and how they responded to my attempts to relax them and to exert particular muscles. I observed that there were areas that felt dead, that I was able to work on and alter in a way that felt positive. I was lucky enough to come across a reference to TMJ on this website, and the descriptions of the symptoms and causes matched my experience. The more I read about it, and the more I worked on my body, the surer I was that this was the cause of a whole variety of health problems I'd been having, some very minor and others much more serious.

Since my GPs and the gastro specialist had been unable to figure out what was wrong, I didn't bother going back to have my self-diagnosis confirmed - I didn't see the point. But for what it's worth, I think the Chronic Fatigue specialist might have been able to diagnose it, had I taken up the GP's offer to refer me there. My daughter, who has chronic fatigue syndrome, has been through the diagnostic system of the Chronic Fatigue Service, and connective tissue disorder is one of the things the specialist checked her for. I didn't understand at the time what the point was of the questions he was asking, but he mentioned in the letter to her GP that she had no history of it, and with hindsight once I'd read about TMJ, I could see how his questions had related to it. It took a lot of time working my way through all the tests and services related to my digestion, and I was keeping the option of the chronic fatigue service referral as something to try if that turned out to be a dead end, as it eventually did. I hadn't been very optimistic the chronic fatigue service would be able to help me, because it's common knowledge they can't do a lot for ME, although they do do what they can, and I thought perhaps the digestive problems might be causing the fatigue, maybe through malabsorption of nutrients since I had scored low B12 at one point on a blood test.

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Thanks for your reply

I’ve been eating a very plain diet for a while now and was taking probiotics but no sign of easing up

I try to keep stress free/calm so I don’t think it’s fully stress related for me.

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I think I advised you to get your doctor to prescribe you: Welchol, Colestipol, or Questran? That's all I know as I had chronic diarrhea for years and these drugs all stop it in it's tracks.

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Hi there

Yeah you did but my doctor didn’t want to prescribe me anything else. She gave me a number to ring for therapy and told me to go back in a month

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Sorry...there are a lot of doctors out there that are very closed minded and are not up with the most recent research, obviously...I'm just glad I have a doctor who listens to me...good luck...maybe try pushing back at her...tell her it can't hurt to try one of these...don't give up!!

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can you suggest to your gastro to put you on tubal feeding ? only for a temporary time until your guts returns to normal after having a break from eating ..i haven't tried it although i want to ( but because of my fear of hospitals and germs i couldn't do it without hospitalization ) but i know someone who did.. and had a great relief from diahrrea and the runs in addition she puts on more weight ..she had to put it on for 20 hours a day , then remove it for 4 hours as a break ..during this time she must not eat though just allowed to drink water . IBS sucks in every level , no matter what you do trying to control it ..some times it's just out of control and acts as a pain in the A** Literally 😤 ..i totally understand and feel you ..hope you feel better soon 🌹

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I’m not with a gastro doctor anymore. The last time I saw him was last may And that’s when he told me to just think of it as my new way of life and get on with it. And referred me back to my GP

I try to avoid everything I’m meant to and to stay stress free/calm but I’m now at my wits end

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may i ask what medication you are taking currently ??

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I’m only on Amytripyline currently. I stopped taking other meds when things got bad incase it was them. I was on the mini pill, sertraline and probiotics.

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Do you drink milk? I believe there are a lot of like milkshake type things around which you can have instead of a meal. One is called Ensure. A few years ago I started losing weight due to going to the loo too much. So instead of eating at lunchtime I had a bottle of Slimfast (I know it's supposed to be for slimming but I used it in order to put on weight and it helped and I did put back on the weight I had lost). I had it every lunchtime instead of food for about two years (even Christmas day). In the end I couldn't bear to drink it anymore, but by then my circumstances had changed a little. It had guar gum in it which I think was the key. These sort of drink give you all the nutrients you need. Just a thought. If you type in Ensure in Amazon, similar other products will come up.

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I’m not a huge fan of milk and if I have too much it hurts my tummy. I was thinking of trying slimfast to help give my tummy a break.

I’m not really losing weight and I’m overweight so my doctor isn’t taking me seriously

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Worth a try. The other thing I have had in the past is complan. You make this up by adding milk or water to powder. I just looked at their wesite, they do soup now as well. My mum used to give me complan when I was ill as a kid. I also had it when I was taking my 'O' levels because I kept being sick. (I didn't have IBS then).

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Hi ! may i ask which type you have been using ? there are many and i'm not sure which one is IBS/D friendly ?? or if you can DM me a picture of it please ..

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The one I used for IBS was Slimfast (it is supposed to be for slimming but I used it as a replacement meal because everytime I ate something during the day, it made me feel like I needed the toilet again). But I see you are from Kuwait, so that would probably be a bit of a problem. It is sold on Amazon.co (the American site) but I guess that would not help you. I would guess any meal replacement shake would do much the same as long as it has some kind of gum in it which thickens it up. I think that is what was helping the IBS(D). But I would also assume that they all have some kind of gum in them. Sorry I can't be of more help.

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Thank you for your reply ! we always order stuff from Amazon the American site as i have a subscription with a shipping company that provides us members with USA address / zip code ..So No problem with that ..Thanks

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I wouldn't buy loads of them in case they don't work for you, we are all different and it is no way a fix-all thing but I hope it helps a little like it did for me at the time.

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I know what you mean, the gastro docs advice to me was eat more veg! I’d already told him that there were lots of things including veg that made my ibs worse. I’m suffering a bad flare up today, had to cancel a hair appointment, and like you I’m at my wits end. Seeing a dietician at the end of April after waiting 7 months for an appointment, pinning my hopes that something positive will come from them. I’ve exhausted everything else. Suffer from stress too, which I’m working on🤞🏼

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Hi Alphega has 118 pharmacy link with West London. You can log onto their location finder. I have made a list of the ones that offer allergy screening services. It is a private test which cost £70. It is highly professional with a private room for the test.

The test is German. it is a smart test with your finger prick blood test being put through the computer. List as follows:-

Turnbulls Chemist N1 2SN - Savemain Pharmacy N1 8LY - Florida Pharmacy - E2 6AH

Regionchoice Pharmacy E1 5Q J - D.H. Roberts Pharmacy - NW5 2HK

Sheel Pharmacy SE15 3QE - Achaeson Pharmacy E11 4HH

Maxwell Gordon Pharmacy NW2 1EX - Weston Pharmacy E13 8E- LRM Pharmacy E13 OQU

Healthchem Pharmacy SW12 9AZ - Zaxgate Pharmacy NW4 2EL -

Brentmead Pharmacy NW10 9NH - Turnbulls Chemist N1 25N (Islington)

Reids Pharmacy N9 9JJ - Newman Chemist KT6 6AH (Surbiton)

Shaftesbury pharmacy HA2 OAJ (Harrow) - Revelstone Pharmacy SW18 5AE (Merton Rd)

Herman Pharmacy TW2 6HT (Twickenham)- Jallas Pharmacy( Acton) W3 OBU

(jallaspharmacy@gmail.com telephone 02089926558 )

Manor farm Pharmacy WD7 7LB ( Radlett Herts.)- Cootes pharmacy (East Finchley)

(cootespharmacy@gmail.com telephone 0208830073

Skot Pharmacy (Edmonton) N9 9BA Telephone 0208803321

Salepick Pharmacy ( Caffley Potters Bar Herts) EN6 4HT

Hope there is one in your postcode/area.

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Thank you so much for this. I was just on their website and showing my partner as I will defiantly want to do this!

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