Fed up: Anyone else just get so fed up with... - IBS Network

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Fed up

charlotte1706
charlotte1706

Anyone else just get so fed up with their IBS that they wish they didn’t live this life anymore. I don’t feel suicidal, I sort of mean I wish I could live a different life, an IBS free life, be myself again. Just when I think I’m starting to get somewhere BAM I’m on my 7th trip to the toilet today, stomach pains every time I move and the worst indigestion. Last time this happened I ended up being awake all night with diarrhoea. Just got to try and plod along though 😭 I’m feeling so down about my health at the minute, I’m already a bit heavier than what I like to be, but then to be constantly bloated and uncomfortable due to my stomach it just makes things 10x worse for my self confidence and now I’m going totally off subject and just ranting on 🙃 thanks for listening x

41 Replies
oldestnewest

Totally empathize. We just have to get through as much as we can.

Hidden
Hidden

When this used to happen to me I ate a banana and it sorted it out.

charlotte1706
charlotte1706
in reply to Hidden

I’ve got to be in the mood for a banana or it knocks me sick. But definitely worth a try if I can face it, thanks!

Flik22
Flik22
in reply to Hidden

Banana didn't work for me today 😰😰 sometimes it does to be fair!! Xx

I’m so sorry you’re feeling so down. Yes, I’m with you - I often wish I lived an IBS-free life. People who don’t have it have no idea how much our guts rule our lives! How did you manage through the night? I don’t think that it helps us, that doctors really belittle the condition. I have Generalised Anxiety Disorder, which makes my IBS worse, but the IBS makes me anxious. It’s a vicious circle.

Do you mind giving me some background on your IBS? I wondered if you are on any meds or considering cutting anything out of your diet etc. Xx

Hi. I didn’t get to sleep until quite late but managed to have a half decent nights sleep thanks. I agree. I have anxiety too, also in a vicious circle.

So I’ve had IBS since I was 13, and I’m 23 now. I have cut out wheat as that’s helped in the past, but isn’t making much difference so considering cutting out dairy too. I take buscopan and mebeverine and my doctor has just started me on lanzaprazole last week. Which in a day to day basis is making a difference but I’ve had really bad indigestion a night a few times this last week, worse than usual xx

ANB80
ANB80
in reply to charlotte1706

Has your doctor prescribed you both Buscopan and Mebeverine? I used to take Mebeverine, he swapped it a while back to Alverine, but I started taking Buscopan too but he told me not to as it does exactly the same thing as Mebeverine and Alverine, so I stopped taking it. I haven't been better or worse for taking it or not.

Of course, he could be wrong!

In terms of being sick of IBS, I am in that camp, as I am sure everyone here is. You can't spontaneously go out for the day or go out to places you know don't have decent toilets.

There are also many occasions when I have to cancel at the last minute from going out because I don't feel "strong enough".

I have found that in order to give myself the best possibility of going out then I need to prepare myself mentally and physically. I need to plan exactly where I am going and where the nearest toilets are. Sometimes I even make a map. Then, on the day, I give myself at least 2 hours from waking up to setting off to give my body time to steady itself before leaving. In this 2 hours I could go to the toilet 3 - 4 times, with the last visit right before you have to leave. This is just to make sure everything is gone, so helps my anxiety levels and IBS.

I then find keeping cool, as stress free as possible, and as distracted as possible for the journey, in order to not keep it at the front of your mind which then increases your anxiety and makes you feel like you need to go.

But this is just me. Everyone is different.

I can totally feel you ..i'm on this awful sensation every day ..dunno what to do any more ..but i would like to advise you to watch your self during treatment with Lanzaprazole as it can cause sever diahrrea as a side effect ..so just notice if there is a relation or pattern between taking your Lanzaprazole and your flare ups ..

i have found that taking antidepressants alleviated ( not cured ) my condition ..so may be you want to discuss this with your doctor .

Good luck and take care 🌹

Absolutely get where you’re coming from, I felt the same. I had been bad for over 3mths, frequent trips to the Doc, changes of meds but not much benefit to me. At my last visit my Doc asked me if I’d heard of the Fodmap Diet, said I’d heard of it but that was about all. He told me to go research it and see what I thought, so I did just that and have been on it now for a week. Not long but there has been a huge improvement already. If you think you’re at that point then thoroughly research it (trusted sites) and see what you think. It’s a long old haul I’m told but ultimately worth it. My top would be to download the Monash Fodmap App (costs about £5) it’s really, really helpful x

Hi. Thank you, I will do some research into it. It does not help I’m quite fussy so already don’t eat loads of foods without cutting out more foods haha. But I will definitely look into it xx

I would definitely try the FODMAP diet as Annenic suggested. You may actually find you can add some foods back. It is supposed to help about 80% of people. Also, if you have to be out and about, my gastro has suggested taking an Immodium.

It’s always worth a look xx

Yes I am fed up of my IBS and this heat isn’t helping! Hope you feel better soon and I am thinking about trying the fodmap diet to see if that helps at all x

Yes this heat doesn’t help at all! When you’re bad you’re already uncomfortable enough without being a boiling sweaty mess too! X

Yes know that feeling too. When you have a flare up that just drags on it makes you feel so unwell and fed up. I get acid reflux and indigestion too so then it’s a double whammy! Docs not very helpful, just placate you till the next visit. Anxiety goes through the roof, so it’s a viscious circle x

Yes my anxiety goes through the roof because of it too. I seem to be getting really and indigestion at the minute, I’ve started on lanzaprazole last week so hoping to see an improvement soon xx

Sorry to hear it’s getting you down - I’m beginning to wonder, at the moment, if the heat is actually affecting more than ourselves - I take Acidophilus for my IBS and realised (probably too late) that the instructions refer to ‘a cool, dry place’ and ‘refrigerate after opening’....

So the top shelf of the warmest cupboard in the house probably wasn’t the best place...

Only solution - buy some more - but do the shops store them cool?

Just a thought - do you use any meds or supplements that are heat-sensitive?

The best kind of probiotics actually don't need storing in the fridge. Have a look at the Just For Tummies range or Optibac - both stored at room temperature and much higher quality than the ones you buy in the shops.

Thanks! I’ll certainly do that!

Wow I didn’t know tablets for IBS would be heat sensitive. As far as I’m aware all my tablets can be stored in the cupboard but I’ll definitely double check this now xx

Hi Charley, so sorry to hear you're going through all this. I was told/ diagnosed as ibs 10 years ago as I used to get terrible pain, and be worried about eating anything due to how I felt afterwards. However, after having many failed ivf cycles, 1 miscarriage and reaching an all time low, I insisted my private clinic do a Thyroid Function Test on me to rule it out and bingo. It came back positive for extremely high antibodies and levels. What I'm saying is, after many, many years of being told ibs, watching what and when I eat etc it wasn't that after all. I've been completely gluten free for over a year and although I'm still feeling exhausted etc, my stomach feels so much better and is functioning better than I ever thought possible. My mum was also diagnosed with ibs and it turned out to be ovarian cancer. Not trying to scare you, but I'm just saying they don't always get it right and after I was agonizing about my diet, bathroom visits and miserable for many years I do feel so much better. May be worth going COMPLETELY gluten free for a while, or asking your GP to run the Thyroid blood test to rule things out. Before that, I felt I couldn't eat out, go away on holiday, and would often end up with extreme cramping and symptoms that left me feeling ... somewhat like you. Wishing you all the best. Hope you get some answers/ relief soon. Best wishes x

Hi. No it’s not scary because stuff like that happens all the time. I’ve been completely gluten free for about a week now. I am tired all the time but just put it down to my anxiety/the heat/ my increase in sertraline. If I see no improvement in the next few weeks I’ll definitely go back to the doctors and ask them to run blood tests. Thank you xx

Don’t go gluten free until you’ve had a coeliac test. The GP will only ask you to eat gluten again for 6 weeks until they can run the test.x

I’ve had coeliac tests before and always came back clear

Sorry, someone has posted a reply to me which has made me think. If you do have the Thyroid Function Test done at some point they also have to test antibodies. I was told this is initially part of the thyroid test (but worth asking). It's the 2 blood antibodies that would suggest whether you have gluten sensitivity. Best wishes x

Eternity78
Eternity78
in reply to Music1

Hi ! may i ask how does the Thyroid function test correlate to gluten sensitivity ..i thought they were totally seperate different tests ??

i mean can someone find they are gluten intolerant from a Thyroid test ??

Music1
Music1
in reply to Eternity78

My clinic tested TSH level and 2 blood antibodies. All of which were extremely high. It's the antibodies that suggest I have something called 'Hashimoto Thyroiditis'. When I posted my blood results on this site on the thyroid pages of HealthUnlocked, a lot of people said I had Hashimotos and should go completely gluten free as that was raising my antibodies and destroying my thyroid. When I went to see the Endocrinologist consultant at the hospital he confirmed my results were Hashimoto and said I should be completely gluten free as well. I must say, I have actually felt so much better (stomach and gut) being completely GF. It came as a huge blow, as I was someone who would eat pasta and bread almost every day at work and drink beer 2 or 3 times a week. In all honesty I do miss the beer and the snacking. I did ask my GP if I could be tested for gluten sensitivity or ceoliac over a year ago and she said 'no you look fine, you don't need that'. I do think, If they don't test your blood antibodies you wouldn't know alone from a Thyroid Test.

Eternity78
Eternity78
in reply to Music1

Thank you so much for clarifying these points ..i asked because i have just done the Thyroid function test but it doesn't include the 2 blood antibodies ..i did it twice in different labs ..both came back with low FreeT3 but normal TSH ..starting to feel the symptoms already ..sleepy all day , fatigue ..loss of hair ( even No armpit hair 🙈🙊 ) dramatic weight loss ..overly dry itchy skin that bleeds fast and doesn't stop easily ..the lab doctor said we will ( wait & watch ) and not rush into treatment yet !!

i don't know if i should see a specialist about this issue or just wait and observe as she said 😳

do you remember the names of these 2 specific blood antibodies tests that confirmed the " Hashimoto Thyroditis " ??

Music1
Music1
in reply to Eternity78

Hi, I've just looked at an email with my blood results on, and I was tested for the following:

T4

TSH

Free T3

Free Thyroxine

Thyroglobulin Antibody IU/mL (0-115)

Peroxidase Antibodies IU/mL (0-34)

My TSH came back in red print, but would be considered NORMAL at 4.2, but too high for someone starting ivf as they have to be between 1-2. Antibodies were both nearly at 500 each, which worries me as the range for Peroxidase is from 0-34. I was at this point feeling really ill and quite 'run down'. The clinic put it down to a stressful job and failed ivf. I think they only run all these tests as they seriously thought there was nothing wrong with me and wanted to say "we told you so". We paid for the Thyroid Test not knowing anything about it or that antibodies would be tested etc. My GP doesn't check my Antibodies anymore as I've been told I will always have them even if the level does come down a bit it doesn't make much difference. I think once you have them etc. Maybe your TSH is 'normal' but they just haven't checked antibodies? I had similar symptoms as you... except for the lack of armpit hair and I was gaining weight, size 10, 12 and then 14. I didn't even eat that bad but was eating more pasta and carbs thinking I'd get more energy. Little did I know. See if she or anywhere else can get these 2 antibodies tested. Wishing you all the best. x

Eternity78
Eternity78
in reply to Music1

Thank you again for for your detailed reply 🌹 i will test for these 2 antibodies privately ..as i'm fed up of doctors saying i only have severe ibs and drugging me with antidepressants and now antipsychotic drugs ..losing weight ( now i'm only 40 kg ) loosing body hair ..mostly every where ..sleepy and sick all the time is not normal !

That's why i decided to take things into my own hands and do my research ..imagine i say to my doctor that i feel cold even in this hot weather ..he says because you are "delusional" you feel things that are not real !! then prescribed me with an anti psychotic in addition to a tricyclic antidepressant for diahrrea 😩😩 i feel i'm not in the right track ..Thanks again wish you too All the best 👍

Music1
Music1
in reply to Eternity78

I've been there, done that. I think it's worth testing the antibodies even to rule it out. I was put on antidepressants and told there was nothing wrong with me as well, and so was my mum. Best wishes, I hope you get some answers soon x

I totally understand how you feel. As a chronic IBS sufferer for many years it takes its toll on you. It makes you feel so alone at times even though you can have family and friends. I live a day at a time and find that helps my anxiety due to my IBS. Im always here if you need to talk and just to offload about how you feel. Keep your chin up and always know that there are others out there who know how you are feeling.

The good thing about this app is knowing you are not alone and other people feel the same way you do. Thank you xx

You are very welcome. 👍

Sorry about how you feel, I feel the same, if I eat ice cream, coffee it sets me off, even nuts are starting to give me diarrhoea. I am going to see if I am coeliac. Last night I had severe mucus coughing nausea due to dairy products. This has made me fed up as I have other health issues. I am really fed up of feeling like this, but hopefully there will be some relief from my symptoms,

Can I ask what u take for IBS.i have colofac I find these effective.

Awww no I’m so sorry you’re having such bother too. That sounds awful.

I take buscopan, mebeverine and have recently started on lanzaprazole. I’ve never heard of Colofac before xx

Charleywall95: My doctor prescribed Welchol for me and it stopped my diarrhea in it's creepy tracks. I couldn't afford to continue taking it, so he switched me to Colestipol, which works just as well. No need to suffer with diarrhea. These 2 drugs are bile acid sequestrants and are also used for high cholesterol (along with a statin) and type II diabetes...neither of which I have. I feel free for the first time in years, as I spent many, many years sitting on the pot.

Hidden
Hidden

Like you, and many others, I have walked that road too.

It took me years, but I found the way out. I don't have IBS any more. I don't manage symptoms. I don't take any products. And I don't follow a specific diet.

Know that it is possible. And if you are in need of inspiration, you may find just the right article that can move your forward on my blog, SickofIBS.

Alison

Sorry your feeling so down I also feel down when I have a bad tummy the doctors offers you antidepressants because it makes people with ibs feel so low I wish there was a cure for it as it totally takes over your life, I'm scared to go on holiday even incase I'm ill, hope your feeling better soon.

I totally understand I’ve had it ruin holidays for me because I’ve been so scared to go. I also wish there was cure but don’t think it will happen in my lifetime.

Hello, this is my general response to help people find a baseline. First, go to the doctors and get yourself checked for intestinal infections, and whatever other tests they want to do. Most people find they are all clear, and that IBS is a condition brought on by our modern diet, freely accessible food, sedentary lifestyles and a trigger of an earlier infection. After 27 years of suffering with IBS I have found that the long-term solution that actually works is all about vitamins and fasting and both are equally important. You are effectively the manager of a “food nutrient extraction factory”, I know that is obvious, but I have found that IBS is not about medicines, but about changing the way you run the factory, and thinking about it in that way.

This is based on some excellent publications, and also by observing how healthy people live. But, if you are all clear from the Doctor’s, then the first thing to sort out is your vitamins and the timing of your eating and fasting periods. An incident of food poisoning or infection can start you on a cycle that you need to make a really concerted effort to break out of. IBS causes vitamin deficiencies which are very difficult to overcome in most people’s diets, especially because you are probably eating selectively to manage your symptoms. Your vitamin levels affect the health of your intestines, and the health of your intestines affects your vitamin absorption, so it is a vicious circle that you have to break. Get some really good, expensive, multi-vitamins (ideally constituted for your age) and take them without fail every day before your breakfast. Get a blood test for Vitamin D and get you doctor to judge your supplement level required in IU’s. Do not get the ones with high calcium and magnesium content initially as certainly in large doses these minerals can mess you up as they consume your stomach acid, and you should get enough of these minerals from your diet. If you are on low FODMAPs, go for all lactose free dairy products to boost your calcium. At the same time, sort out your fasting periods immediately. This is normally completely overlooked by GP’s, but is critical. Your small intestine should be practically sterile, and your stomach acid along with bowel cleaning during fasting (called MMC) will usually do this. You need to fast for this to be effective, and by that I mean, ABSOLUTELY NO eating in between meals, only water, or zero-sugar drinks. Imagine that you never washed your dinner plates and just kept putting food on them all the time!, they would be permanently loaded with bacteria. You need to give your small intestine plenty of time free of food for cleaning and maintaining the factory. The modern scenario of have cupboards full of rich foods permanently available day and night is a modern luxury outside of the original design of the human being. Your stomach will sort itself out when you have got control of your small intestine (although if you've got gastritis you'll need to finish a course of omeprazole first), and then your large intestine will improve later as nutrients are more efficiently absorbed from your small intestine. Furthermore, you should be able to avoid bouts of gastritis as during the fasting periods, your stomach acid is more neutral at nearly pH 4. As a basic program, eat a good breakfast at say 7am (porridge with 50% lactose free milk) or what suits you and then a good lunch at 12 o'clock - absolutely no food in between. After lunch, no food again for at least 5 hours, and eat well again for your evening meal because it has got to get you through the night. No supper or snacks, no food or milk at all until breakfast the next day.

Further to this there are some things that cause direct inflammation of the colon by toxicity, and are are considered separate to the usual SIBO mechanism described here:

1.) Seek out and try to eliminate “trans-fats”. These cause direct inflammation of the colon, separately to bacterial overgrowth and you will be more sensitive than most because of SIBO and this confuses what is causing you trouble. Chips, hash browns, butter, popcorn and things cooked in cheap or old frying oil as you find in many restaurants can give you colon pain directly through inflammation. It usually passes in a day or so, but trans-fats are bad for you in a miriad of ways, not only by inflammation of the colon. Ideally, starches should only be boiled, rather than fried.

2.) E407, or “Carrageenan” – is a high MW galactose food additive derived from a red seaweed, which is only present in small quantities as a thickener, but even at that level it has been shown to be “highly inflammatory to the digestive tract” and associated with IBS, colitis and other GI diseases. There is loads of literature and objections to this substance on the internet. It is present in Milbona Crème Caramel, and many other products. After weeks of good health, just one of these products knocks me out with colon bloating and pain. I have found this by trial and error several times. Food tests show that even the food grade carrageenan contains between 2 and 25% of the non-approved “degraded” carrageenan, which is colon damaging and carcinogenic. Some food agencies now prohibit this additive altogether, and it may be responsible for a lot of IBS cases. It may be found in chocolate milk, cottage cheese, cream, crème caramel, ice cream, almond milk, diary alternatives, such as vegan cheeses or non-dairy desserts, coconut milk, creamers, hemp milk, rice milk, soy milk, and particularly processed meat. It is used extensively in cheap meats and is injected even into beef joints – so always get organic or local butcher fresh good quality meat!). It may be labelled as E407 or Carrageenan, but if you’ve got IBS, consider it as highly toxic for you. It may take a couple of days to get over a dose of this.

3.) E451 and E452, are sodium triphosphate and sodium polyphosphate predominantly used for packaged ham. These are also allergens for IBS and give me a similar reaction to E407. The diphosphate (E450) is commonly used in many foods and is not troublesome in my experience. Make sure you buy fresh ham “on the bone”, and check with your butcher whether it has been treated.

Red meats take a long time to digest, and also contain some trans-fats, but are usually tolerable. Only have them once a day, and just a light salad to go with them, not a load of starchy food or grains, as they have long digestion times. Ideally, you don’t want carbohydrates being held up in transit with heavy meats.

You will feel hunger in the fasting periods, but this is doing you good, and you must NOT respond to it - only with water or no-sugar drinks. This is CRITICAL. Importantly, when you are feeling better, do not resort to your old ways, you are still recovering, and you need to make a life-style change to have this level of discipline in your eating and continue with it. Do start doing some exercise if you don’t already, as this will really help with your gut motility, and your general health. It takes a few weeks at least, and you need to persevere. You then need to maintain a healthy and consistent way of eating and always keep the vitamins topped to prevent you from relapsing. In a couple of weeks, you should be able to be getting off the low FODMAP diet, and mixing back in the higher FODMAPs.

There is a lot of support for L-glutamine to help with repair of your intestinal lining; this means buying 500g of the bodybuilder powder type and having a couple of tea-spoons of this a day, one before breakfast and one just before you go to bed, and you can have this in a light cordial drink. A lot of this was taken from this excellent paper below, but it does fit exactly with what I have experienced. For the first time I really feel in control of the IBS mystery that has been a burden for years. Good luck. Please reply if this works for you.

Treatment and Management of SIBO — Taking a Dietary Approach Can Control Intestinal Fermentation and Inflammation

By Aglaée Jacob, MS, RD

Today’s Dietitian

December 2012, Vol. 14 No. 12 P. 16

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