IBS Network
21,426 members7,283 posts

struggling

hi,

I recently got diagnosed with severe IBS and a sensitive gut after six years of my illness being unknown. The doctor who told me then proceeded to tell me he won't be giving me any medication because to quote him - "not one medication can fix all of your problems."

I don't know how deep we're getting on here but I'm honestly ready to end my life. I'm actually disappointed when I wake up in the morning. I'm in constant pain and discomfort and I feel completely alone.

I'm sorry if this isn't what the board is for I just don't know where to turn.

35 Replies
oldestnewest

Hello and welcome. You're not alone. Many people here suffer with similar physical symptoms of pain, bloating, incontinence, diarrhea or constipation. And it's a disease that takes its mental toll in stress, anxiety and isolation.

What have you tried so far to help with your guts? I always recommend trying the FODMAPS elimination diet and keeping a good food and symptom diary - I used an ap for my phone. Stress reduction has also been key.

Feel free to share what you need here.

2 likes
Reply

I've tried a lot of medication and I've also tried the FODMAP which did not work as due to this illness (way back when I first started getting ill) I became fruit and veg intolerant, there's a lot of things my stomach cannot actually handle.

I'm finding it so difficult I feel like I've got nowhere to turn to.

Thank you for your help and advice I appreciate it.

1 like
Reply

Could stress be a component? It probably wouldn't hurt to up the gentle activities that you find relaxing. I've been doing some meditation podcasts for an unrelated health issue. It's very cheesy and not really my thing but I'm finding it does reduce stress which affects my health issues big time, including IBS. Or a gentle yoga session, walk or stretch every day?

It might be worth a shot to see a psychologist. Again, I'm seeing one now for an unrelated health issue, but she specializes in chronic pain so I'm hopeful that I'll learn things I haven't yet tried. It's also nice to just offload your feelings.

I'm sorry you're struggling.

1 like
Reply

I've been trying to find online therapy as I actually struggle leaving the house. So far no luck, I might try and ask my doctor when I next see him. Hope your IBS improves with your therapy x

Reply

Hi, I just read your initial post & it made me so angry & so sad on yours & all of our behalf's.....basically we have a series of, as yet, undiagnosed disorders which are labelled under an umbrella title 'Ibs'. Very often ibs is dismissed & not considered particularly important, unless you're the sufferer. I want to tell you, it is a big deal, it is,at times, absolutely debilitating & please don't give up.

The comment above regarding stress is actually very relevant & ironically the stress of your symptoms, may be increasing your symptoms. Demand help from your health care provider, read books & do get on line for any form of mindfulness, relaxation etc

I wish you all the best dealing with this Ax

Reply

Hi thanks for your reply.

I've begged and even cried (even my mum has) in front of doctors - I've told them it's making me feel suicidal and still nothing 🤷🏼‍♀️ I once wrote a letter begging my (now previous) gastro doctor for help because I was going through a really awful stage that I'm still recovering from and dya know how he responded? He cancelled my appointment.

Thank you for the tips I try to stay stress free, I keep my mind busy (although being house bound is boring) I try. I've learnt a lot more through the internet than I have doctors.

Thank you, wishing you well too.

1 like
Reply

Take heart you are not alone. After all the tests and investigations Fodmap diet and every medication on the shelf I am now successfully coping by Food Combining. After all this time it is a miracle for me. There s loads of help on the Internet and easy to follow charts to help you combine different foods. If only I had known about it earlier. Do try it. It becomes second nature in the end. Good luck. Oh and get out of the house walk and exercise take your food with you! !

Reply

Hey thanks for the reply, I'm glad things are working for you x

Unfortunately I'm unable to walk most days due to the pain being so extreme.

Thank you for the advice I appreciate it.

Reply

I understand your complete frustration but you must go to a naturopath who will help diagnose this. The medical field don't really know how to treat IBS - it's a big unknown really.

Have you tried the fodmap diet? Have you been tested for fructose intolerance, celiac, sibo?

You definately should be off dairy and wheat and processed foods, fruits and alcohol as all those things are irritants to your gut.

Also stress doesn't help it - it doesn't cause it but it makes it worse. Have you tried deep meditation. Or even anti depressants to help with the worry.

There are medications out there for the bloating and pain - and i'm sure someone here will be able to tell you what they are.

Stay strong - i know it's hard. I've been struggling for 8 months and have lost heaps of weight and still don't have an appetite. It affects your life.

Take care.

1 like
Reply

Hi,

Thanks for the reply. Due to being ill for six years I've tried mannny things - including FODMAP and being tube fed and neither agreed with either my bowels or stomach.

I'm under 6 and a half stone now and I'm at a loss - I'm fruit and veg intolerant and recently realised I'm not being affected by lactose so I've switched to a different milk that seems to be more gentle.

All I seem to do is pop pills in the hope they'll help - can I ask what you do for bloating because I suffer really badly with this?

x

Reply

Fennel tea and these drops called Iberogast, it has all natural ingredients. Google it.

I had to stop eating meat, it's very hard on the digestive system.

Reply

Hi, sorry to hear how I'll you are feeling. I've recently started to use A2 milk and after a whole year of really bad IBS symptoms, I am feeling a bit better. It's worth a try. It took about 2 weeks to show slight improvement but I'm going through a quiet patch now.

Reply

Hey,

I'm glad you're feeling a bit better I'll start doing some research I don't think I've heard of term A2 milk before. Thank you x

Reply

Hi there,

I have actually made my way out of the IBS maze and recovered - so it is possible. One thing I always recommend is to get checked for Candida and SIBO: sickofibs.com/ibs-symptoms/...

Something I wish I had known sooner and crossed off the list.

I had (and still have, though much reduced) food intolerance. This article may help you see more clearly and how it all works: sickofibs.com/ibs-triggers/...

Hope this helps,

Alison

2 likes
Reply

Hi,

Thank you, I just started to read - I've already been checked for bacteria in the gut and it was fine would this not be the same thing?

x

Reply

I would check with your doctor to make sure that it was SIBO and Candida he checked for.

Do know that tests are not 100% accurate, so what is your intuition telling you? Do you feel that your symptoms match the specific ones in the article for Sibo or Candida, or not really?

Reply

Oh I know that doctors are known to miss things.

probably the sibo but it's hard to pinpoint that as also being a problem due to my symptoms falling under a lot of different problems - I don't like to say "I think I have this" until a doctor tells me 🤷🏼‍♀️

Reply

Hi greatgatsby

So sorry to read of your major problems with IBS!. It's a really tough condition to live with., very stressful!. My mum has it and takes peppermint capsules for bloating!. Have you tried them?. Can either be prescription or over the counter, best to check with GP first. Bread also bloats her quite a bit so I wonder have you tried to be gluten free, it can help ?. She eats different crackers as an alternative. hope your better soon. X

Reply

Hey,

Thanks for your reply, sorry to hear about your mum - IBS is awful :(

I've tried one kind of tablet that had peppermint in but the fact I could taste peppermint for most of the day after made me feel a lil sick lol. Willing to go to the doctors and ask for other options though!

It's hard as I can't actually eat many things as it is. I might look in to buying some crackers though.

Thank you, I hope things get better for your mum too. Thank you for the advice

X

Reply

Thanks for your great reply great gatsby. Mum has had it for years and managed it well until recently when it's been really bad!. She's helping it by eating low fibre like the Fodmap diet but her own version. I'm interested that your doctors said you have a very sensitive gut!. She's been told the same and has cut out a lot of wheat breakfast cereal too which has helped. Good luck for when you go to your GP. There are treatments called Mebeverine and buscopan that might help you. Keep us posted. X

Reply

Flare ups are the absolute worst! I hope she's feeling better now x

A sensitive gut is literally the worst paired with IBS because everythingggggg hurts 😭 I'm living mainly on one thing which I know isn't healthy but it's to get by ykno?

Yeah I have buscopan!

Thank you

X

Reply

What's that your living on great gatsby?. Mum's improving thanks so I hope you do to. X

Reply

Cereal, it's the only thing that doesn't hurt me 🤷🏼‍♀️

Reply

Which ones great gatsby?. Mum changed hers to cornflakes and rice pops only. You can't live on just that!. Hope you get help this week.

Reply

umm it's a mixture of clusters (can't think of the name right now I've been up since 1am due to pains so apologies.) I know i can't but if it's what helps me - occasionally I'll try different things but the pains aren't worth it 😞

Reply

So sorry greatgatsby that your so bad. There must be help for you.

Reply

You would think so lol 😞 I'm hoping I hear something from my doctor in London about this IBS school soon...

Reply

That sounds interesting gatsby!. There's been very little research into IBS or new treatments!. Hope this will redress the balance a bit. Let me know. X

Reply

This I recently discovered, and I think it makes sense for me...Salycitic Food Sensitivities...read up on it too, I have tested it, wow it is true. I do low fodmap, and am gluten, dairy free and organic. I do not understand why people stay on milk, we are not baby cows. I have had an intolerance to aspirin, and do not take any nsaids (gastritis, after dental work). I have IBSC, and have taken MAGO7 before sleep for a long time, best thing I have found, it is not a supplement, uses large molcules of oxygenated magnesium, and works every day...no cramps, no chemicals. Stress is most likely my worst trigger, and was working on this, but had a horrendous band ligation recently (thank God for Mago7), when healed going back to therapist to try some hypnosis, as I hold all stress in my gut! Meanwhile I have to try to blow things off, listen to rain or ocean CDs, and meditate (usually fall asleep), and journal...when it is really bad! We live in extremely stressful times, and I am just too sensitive. I pray too, can not forget about that. My body is just constantly reminding me I am getting old, that really bugs! Accupuncturist is extremely relaxing, and massage. I suppose we just have to take one day at a time, and read and be smart enough to know all the scams! I wish I could b like my Son, and Husband, and just let things roll off my back...getting better at it, because stress kills! Oh and very few docs know zip, that is why it's called ibs, we know more about space than our intestines, and all the things going on and lots of scammers are really on the take...research well. I have a dear friend who goes to a Chinese practitioner, I think I just might give that a try, as she swears by him, in two months my medicare will cover him, I have nothing to lose at this point. It is just such a battle, even going gluten free, they say it can take years before you ever get normal, whatever normal is!

Well enough of my babble, I am a lot better than I use to be! Lost 50 lbs. Blood work is now almost perfect, so something is going right...gonna work on stress!

Hope everyone on here gets good guidance, and feels better soon!😁

Reply

Hello there, try drinking fennel tea and peppermint tea, the second one is good for pain and spasms. Buscupan is over the counter and is also good for pain.

Reply

I have buscopan thank you for the response

Reply

I had IBS-D and some very severe belching and dull stomach ache issues. I too, was weary of the daily pain and frustration of it all. My gastroenterologist suggested a low dose of amitriptyline (old tri-cyclic antidepressant). Apparently, it is used a lot off-label for IBS, nerve pain, migraines (which I also dealt with).

For me, I found that the combination of amitriptyline, 20 mg of omeprazole, and chewing gum after meals (helps stimulate saliva and calm acid reflux).

It sounds like you've already tried a lot of medication. I really hope you can find a combination of therapy that will work for you!

Joe

Reply

Hi thank you for your reply,

I've already tried that amitriptyline twice and had no luck. My doctor who is currently trying to treat me refuses to give me medication as "not one can fix all my problems." He wants me to go to an IBS school but the waiting list is extremely long 😞

I'm glad things are working you, all the best x

Reply

I had a feeling that may be the case. I don't necessarily advocate for medication, but I do believe there are cases where it's necessary in order to enjoy your life. To make such a callous remark, shows that he has never quite been in your shoes.

Don't give up! I'm sure there is some combination of treatment that could help you! I know how frustrating it can be until you come up with that solution!

Take care,

Joe

1 like
Reply

Thank you x

Reply

You may also like...