PLEASE HELP ME

[pseudenim]

Hi, so when I was younger (around 5 or 6) I used to get a LOT of stomach aches and pains. I had many home/school stresses, more than a 5 year old should, and would often get anxious, which would always induce nausea.

It faded away for a number of years. But 3 years ago, when I was 15, things picked back up again. I became depressed and anxious. I didn't get the pains or the nausea, but I did have a funny tummy. It was also around this time that my brain thought it a good idea to get an eating disorder.

About a year ago, 2 and a half stone lighter, I was diagnosed with IBS. I had a bit of a dodgy gut and had to avoid dairy/gluten but I got used to it and it didn't really affect my day-to-day life. I no longer had the room to avoid food, I had to suck it up and just eat what I could without worrying about my weight.

3 months ago, I came down with what I can only describe as the worst "flare-up" of my life. I was shaking, being sick, dizzy, had breathing problems, struggled to stay concious. The shaking was so bad I had involuntary movements in my head, arms and legs. 12 weeks later... and I'm still here!

I've only experienced those very scary low points a few times, but I have spent the better part of this week in bed, shaking with headaches and pain, and quite honestly wanting to expire. The nausea and dizzyness is so bad, it feels like I'm about to die. The pains have gone from cramps to sharp, deep shooting pains all over my abdomen (mostly on the left). I've never been so scared in my life, which obviously doesn't help the symptoms. Because of this illness, I've been in bed for 3 months. I can't go to university, I have no friends. I went to IKEA for a few hours and ended up having another flare-up for 4 days.

I've apparently exhausted all my options as far the hospital are concerned. It's not Coeliacs, Crohn's, ulcers, tumours, cysts. Nothing. My bloodwork and other vital signs are all normal. From a medical stand-point, there's like a <1% chance it could be something other than IBS. They wont do scopes other than a sigmeudoscopy (spelling?) due to my age (18) and symptoms. I still have no date set for the scope.

What I want and need to know is - is THIS normal? This feeling of utter utter wretchedness? I don't understand how the human body can feel this way and it "just" be a little stress?!

I have a counsellor and a very supportive mum, but it's as though no matter how much I talk about my problems, nothing changes? I'm reaching my limit and, whilst I'd never actually do it, some days I feel like taking my own life it's so bad. Nothing makes any sense and I just want this to be over. I'm onto my 4th gastroenterologist on Wednesday, I'm losing faith.

Please, anyone who's ever gone through this similar feeling, tell me how you got out of it? It feels like I'm so alone in this, the doctors look at me like I'm muck on their shoe. So many of the medicines to treat this have lactose in, too. It feels like I'm getting nowhere. Help!

[Hidden]

Oh my goodness you poor thing. I just want to hug you and tell you it will be alright. It WILL be alright but you are so young to be going through all this. Take comfort in the fact that they have done a lot of tests and found NOTHING. Stress can be a huge factor in conditions such as this. I have IBS and get down days but I am older and can cope, you are only 18 and I feel so much for you. If your Doctor looks at you like "muck on their shoe" then get rid of them and go elsewhere. They have absolutely no right to treat you like that. I wish I could tell you how to get better but you have your Mum and your counsellor so just keep going. Try to get lots of sleep and eat healthy and drink water. You WILL get there I promise.

[pseudenim in reply to Hidden]

Thank you so much!

Its so hard to get through these things as it feels so lonely, reading these forums helps a lot but not much in the long term. I've seen well over 10 different doctors now and they all treat me the same. I think they look at me and just see a stupid teenager over-reacting/being a drama queen. It's so so hard to stay positive, especially with the paranoia and intrusive thoughts all the time. I'd say I'm definitely at the point of breakdown now, my anxiety is based around dignity and grace and keeping calm in the face of peril: so losing control like this is just making the symptoms worse! It's a vicious cycle and its scary not knowing how to break out of it. Just wish I could sleep until its all over. But alas If nothing else though, I'll be stronger for it in the end. It's just keeping my head above water thats the difficult part. Any help/support or suggestions for other sites and stuff would be really helpful! Again thank you so much its so nice to hear from someone who actually understands.

[Hidden in reply to pseudenim]

You are welcome and you WILL get there. You sound a lovely and very articulate person that is just sacred. All this will pass I'm sure. You may have to live with food restrictions (I'm like you lactose intolerant) and all the other stuff you have to avoid, but you can live with it and build your life around it. You are not over reacting or a drama queen. You are just overwhelmed by what is going on. I hope this doesn't sound stupid or patronising but deep slow breathing and camomile tea helps me a lot. Concentrating on the breath is very relaxing. Take a deep breath and count to 4. Hold that breath for 7 and then push the breath out for 8. It helps me feel calm.

[pseudenim in reply to Hidden]

Yes thank you! Haha it doesn't sound stupid - I do try to do deep diaphramatic breathing but when it gets really bad I find that that just makes things worse, especially the nausea :/ Best I can do in those situations is wait for it to pass! We're cursed with overactive brains, unfortunately!! Thank you for your help, I take it you have your symptoms under control?

[cheshirecat48 in reply to pseudenim]

Hold on my friend! I am sorry you suffer so much,but things will get better. As mentioned earlier stress can do the most wicked things to the body. And even when we don't think we are stressed,our body thinks otherwise! You're words are a testament to your suffering.You will feel better soon.

Fight,fight,fight. IBS for 30 years, but living with it.

[pseudenim in reply to cheshirecat48]

Thank you!! You're right, its a daily struggle but its worth it for those good days.

[Hidden]

Yes, all under control now.

[pseudenim in reply to Hidden]

I'm glad! What did you find helped, beyond breathing/chamomile tea? ☺️

[Hidden in reply to pseudenim]

Oh just the breathing, camomile tea and watching what i eat

[pseudenim in reply to Hidden]

Wow thats lucky! Thanks again

[Hidden in reply to pseudenim]

Luck doesn't come into really. It's a conscious effort on my part to control my symptoms.

[Hidden]

So sorry you feeling this bad, Stress has a big factor in IBS-D, as you are so young it must be a nightmare, but if it helps mine started when I was 15, mine was also triggered by stress and food intolerance, none of the doctors take this illness seriously, they just think oh yeah upset tummy and on your way. I found a lot later on that it was sugar and natural carb sugar that would trigger mine. Like you I went through the dreaded eating disorder and at 19 my two main muscles that hold your back up collapsed due to stress and continuous going to the Loo . This made me think I have to find a place where I can try and stay calm and get rid of the dreaded cotton wool as I use to say in my head. For me I found a really good guy who stuck by me through it all, he some how got me better. And my IBS calmed and my depression got better. Then he got double Kidney disease and my IBS came back, it took some years but he got a transplant and once agin my IBS calmed. What I am trying to say is all the stress in life takes a toll on our Bowels, try and find something that may calm your mind, also on here you can find people in your area, you could get to know someone and poss meet up, I am sad to hear you have no friends, that can't help, but it's good you have such a lovely Mum. Give it a go for people near you on here, you just might make a great friend.

Good luck and I wish you all the best and happiness that you so much deserve.

Take care, it will somehow get better with time

[pseudenim in reply to Hidden]

Thank you very much, this message really made a difference. I'm glad you've found your bliss!! I'm working on having a "safe place" in my head that I can go to, perhaps that will help

[Hidden in reply to pseudenim]

You will one day, but don't get me wrong my IBS flares up every now and again, especially when on antibiotics, I take Colpamin for the bad days is seems to work for me

[pseudenim in reply to Hidden]

Of course, its a subjective illness for sure. Thank you I'll take that into account :))

[Pixie-jade]

That sounds like my life story, it also started for me around 18 I'm now 22 and had it for almost 4 years. Mine got a lot I repeat a lot worse before it got better. It made me leave university early it got that bad but now since I've left it has very slowly started to improve and there are days now that it is better than before but also worse. You'll learn it's just a big roller coaster.

[pseudenim in reply to Pixie-jade]

Thank you pixie that means a lot - its such a difficult illness to cope with but I'm glad I'm not alone :))

[brities]

yes its tough - cutting out foods can help as does accepting your limitations and the support of others. Keep a good network so you don't feel isolated when fatigue sets in making normal social activites impossible is the best advice so that when are old and grey you still have n understanding circle x

[pseudenim in reply to brities]

Thanks Brities - fatigue is definitely setting in, the past few days I've been so drowsy and light-headed I can't even stand up We'll get through it though, it is managable with the right network!

[Hidden]

Could you possibly be withdrawing from some type of medicine? I have gotten very sick when I stopped taking a some kinds of medicines suddenly. I hope you feel better.

[Hidden]

Could you possibly be withdrawing from some type of medicine? I have gotten very sick from stopping a medicine suddenly. I hope you feel better.

[pseudenim in reply to Hidden]

It's unlikely! I usually get severe symptoms when I'm "blocked up" - just in that awkward stage where the docs dont want to give me anything to help the symptoms!

[jenny89119]

Pseudenim: I am so sorry that you are going through this. You are so young. I have had so called IBS for three years now. There is a lot of information on line. My favorite site is: "Help for IBS". It is run by Heather Van Doross. She has had IBS for over 20 years. Sign up up for her newsletter? She even has Yoga exercises that you can do for IBS. books!, etc. She has the latest information on IBS. Another resource is Monash University, they have a low Fod-map diet app. I don't know what the cost. There is a lot information on IBS diets on the web. You are not alone in this.

[pseudenim in reply to jenny89119]

Thank you so much Jenny! I will take a look at those sites today x

[Hidden]

My IBS got so bad that at times I considered whether a future suffering every day was worth it. So many people said my IBS was bad because I was stresses but they just didn't understand that I was stressed because of my IBS and the damage is was causing my health. I lost so much weight and lived on biscuits...couldn't leave the house some days. In June whilst waiting for a gastroenterologist appt I started the FODMAP diet. It has changed my life...my symptoms improved and slowly my stomach started to heal. I feel like a new person now and my stress is almost non existent. I have suffered since a child, never going to friends house for fear of getting sick etc. My point is...it could be food that is the underlying problem...have you tried the fOdmap diet? I also take really good probiotics which has helped in the healing process. Don't give up! I read and researched til the early hours of each morning, desperate to find something! You don't have to live like this...ywhich is basically what doctors told me. It's hard for other people to realise how encompassing IBS can be and how it can take over your day to day living. I hope you find your answers soon 😄

[pseudenim in reply to Hidden]

Hiya! Yes I am on the low-FODMAP diet although its so hard to follow it amongst avoiding dairy/gluten! I will give it my best shot though since a few people have recommended to me now, thank you!! :))

[JoyGreennhalgh]

Hang on in there! Your health WILL improve if you stick at finding a solution. BUT YOU NEED HELP. Ask to see a dietician trained in the low FODMAP diet. You can also help youself. 75% of sufferers are helped by a low FODMAP diet. So there is a very good chance it will help you.

Read this book !!!!!!!!!!!!!!!!!!!!!

Free at Last by Patsy Catsos.

And ask your Mum to read it too. It seems complicated at first, just read the book through and it will become clear. The low FODMAP diet is really worth a try. It is scientifically proven, it is even on the NHS website, although not in enough detail to be of any use.

Your reaction was a very violent health turn that you describe : don't rule out being allergic to something, could be food, could be something in the environment.

I found IBS made me very stressed and depressed, I am self aware enough now (being old!) to realise that. Stress does not give me IBS, but it makes me stressed. This is a very clear distinction. Although for some people I know that IBS is brought on by stress.

If you feel very , very depressed, phone The Samaritans for support.

For a starter try cutting out these foods as they are common triggers

Onions, leeks, garlic (all the onion family)

Pulses such as chick peas, kidney beans and baked beans

Lactose : buy lactose free milk, cheese, cream and butter like spread widely available from big supermarkets. Very nice! Infact I prefer lactose free milk to ordinairy just for the taste! You said you avoid lactose, have you cut it out altogether? If you are very lactose intolerant you need to cut it all out, if lactose is not the whole problem you can have a little of it, the low FODMAP approach will help you find that out.

Coffee

You say you avoid gluten/dairy. Have you cut them out all together ? Look at the Coeliac Society website. If gluten is the problem you must have absolutely NO gluten . there is no cheating. Even a bread crumb, even breathing in flour dust can make you ill. Dont go near the bakery section of the supermarket if they bake on the premises. Don't have flour in your kitchen at home, unless someone really cleans up all the flour dust. If gluten is a problem, you should also try cutting out OATS , even gluten free oats as they contain a protein that is very similar to gluten . I cannot eat oats for this reason, and many other Coeliacs have the same problem. You could also try going gluten free : even if you have had the test it may not have been accurate. Also, as you will see from the low FODMAP diet, cuttingout wheat may help you for other reasons besides the gluten.

Have you been tested for Gluten Intolerance (Coeliacs Disease) ?????????? Get tested before you cut gluten out of your diet.

What do you eat ?????

Keep a food diary, keep a symptom diary . It will help you and a dietician to work out what is going on.

Many people on this forum will recognise some or even all of your symptoms. Yes, the medical proffession can be very off hand. BUT they are taking you seriously and they are checking you out thoroughly. So don't give up, battle on and keep postiong here.

Let us all know how you get on : it might help some of us. We need you !

By the way, after a 2 year battle I am now 95% symptom free, still have some horrid days, but life definately worth living now! I am on a Gluten free, lactose free, caffeine free, low fodmap diet, no red meat, I eat chicken and fish. I eat all freshly prepared food from fresh ingredients: no processed food and I never eat out. BUT what works for me may not work for you. You have to find what is right for your body.

Joy

[pseudenim in reply to JoyGreennhalgh]

Hi Joy, thank you so much for your advice!!! I am on the low-FODMAP diet and do conpletely avoid lactose and gluten, no exceptions :)) Although I am struggling to stick to low-Fodmap, its impossible! But i'll keep at it and do my best, thank you x

[JoyGreennhalgh]

Woops , sorry,I re read your post and see you have been teated for Coeliacs, but as I said, the test is not 100% accurate. Joy

[Angel25]

I once tested negative supposedly - without the tests I know they do. So years later family said to stop. I get worse each time I get gluten and when first case of IBS recognized ten years before that nobody knew but said IBS for life. Well, I have to get a lot of gluten to do it and it's ironic it usually coincides with getting my gut messed up from antibiotics. I too was weak and shaky first bad episode and walking helps. Lately not walking sooooooo we're doing it all wrong if not moving and if you've been in bed a lot or inside it gets worse. It took commuting and sitting my first case. Eating I shook, if I didn't eat I shook. So off to do the Colonoscopy. Of course, nothing was wrong. If you got a food you can't eat, normally don't eat now, etc., almost anything can set it off. Keep trying to figure it out to get well and then be careful. Maybe something in something you ate and didn't know. People do that one to me a lot and it's annoying when eating out chefs will even poison your food if they have an attitude. Hey, rare, but it happens or by accident. Good luck and listen to the people who care. When I feel bad I know this too shall pass but yes it's a royal pain.

[pseudenim in reply to Angel25]

Thank you Angel! I appreciate the support x

[mimijessbag]

I can't explain how relatable this is to me. I'm 17 and I have IBS, I also get "flare ups" of random dizzy spells and feeling sick. I also have severe eczema, migraines, depression and anxiety. I've cut out all lactose and it doesn't seem to be making much of a difference but I guess I'll have to test it out for a little while longer. My doctors have always been pretty rubbish and think I'm being an utter drama queen, my friends don't understand it either, well I've never really told them, I feel kinda embarrassed about it. I also suffer from anxiety and panic attacks, I used to get them quite bad but now I have learned to control them. Anxiety started to wreck my life, I couldn't cope at college and had to drop out, but I'm doing okay now, I don't get as many "flare ups" or panic attacks as I used to, I just tried to be a happier person and focus on the positives. I still suffer from IBS everyday but from growing up with IBS I've just learned to live with it. Don't give up just yet, I realised that no one can give me support but myself, it might not be the same for everyone but I've managed to get my life back on track. I'm back at college and so far I'm doing well. I really hope you find answers and don't suffer for too much longer. Best of luck for the future x