Severe IBS

[TynchyChica]

Hello everyone, I have joined this community to see if anyone can help or advise on my current condition, or if anyone is feeling the same really. I have had what me and the doctors assume is IBS for nearly 8 years now and it’s getting unbearable. I have had a colonoscopy, diet changes, therapy and multiple different medications but nothing is helping. At around 2-3am I wake up sweating profusely to the point I’m in a pool of sweat then my body begins shaking uncontrollably. I have fainted at this point to the pain in my back and weakness in my body many times and have been hospitalised. I can’t seem to go to the toilet for around half an hour which is agony then when I do go it’s very loose with quite a lot of blood in it. Honestly the pain makes me feel like I want to die in that time and it’s really making my life awful! The only thing that eases the pain is scolding heat put directly on my back or a hot bath! Sometimes it feels like contractions when giving birth then other times it feels much worse. These episodes happen maybe 3-4 times a month. I wondered if anyone else has this severity and what helps you? Thank you for reading.

[Zedi39]

Hi. I am so sorry to hear of your pain - it sounds truly unbearable.

I noted you said you and the drs “assume” you have IBS - have you had tests to rule out other possible issues? I’m sure you have, but thought I’d ask.

Also, have you considered another professional opinion? Maybe another dr or specialist could help?

As I say, I’m sure you’ve done all of this already, but wanted to throw it out there just in case.

I hope you get some help soon!

Take care 🙂🙏

[TynchyChica in reply to Zedi39]

Thank you very much Zedi39, really appreciate your response :). Years ago they ruled out Crohn's disease and the colonoscopy came back okay, so they responded with 'we are unsure, it will probably be IBS' so we just assumed that. Your right, i think i do need another opinion as no treatments have worked for me for IBS so maybe it could be something else? Thanks again for replying and you take care too

[Zedi39 in reply to TynchyChica]

No worries 😊

I am right at the start of my IBS journey and they did several tests to rule out other stuff first. I ended up doing 3 stool samples and a blood test (to rule out Coeliac disease, Chrons disease, cancer, etc.)

Maybe ask for these if you’ve not had them? Possibly a good place to start with a new GP/specialist?

Best of luck, let us know how you get on 🤞😊❤️

[Mummy09 in reply to TynchyChica]

Hi, I have the same issue, I am in agony most of the time and it is so severe now I have patches and oramorph which unless I take 20ml doesn’t take the pain away, of course then I fall asleep and not good when you have young children. I have had colonoscopy and MRI because my calproctien was over 700 and my FIT test came back high but now bowl cancer, the consultant has diagnosed me with severe IBS, I am awaiting pain management clinic to get more help as I am in so many different meds I am at my wits end.

[binks]

I posted last week about my episodes of severe diarrhoea and cramps as bad as childbirth. They start around 10pm, last 2-3 hours and I am in a state of collapse - cannot stand or walk.Dripping with sweat and very dizzy. This is an escalation of my ibs symptoms of 30 years. I called my GP on monday after the last bout on friday night and received a text on tuesday saying they were "inundated" and would reply later if I could text my concerns!

The reply to my text said intense colonic spams due to ibs.

I've also been to A&E in the past because the pain has been so bad I think I am dying. Thankfully this level of pain for me has been rare (so far). 3-4 times a month must be absolutely horrendous and judging by the state of healthcare in the UK right now it's impossible to get a proper answer. I really sympathise.

[TynchyChica in reply to binks]

That sounds horrible what you are going through and very similar to what i experience, i really hope you can get it sorted! If this happens to you again try putting a hot water bottle or heat pack either on your lower back or tummy as this is the only thing that gives me a bit of relief when i go through this, you never know it may work for you too Thank you for your reply and hope you can get the help you need as 30 years of IBS must be so difficult to deal with. Take care x

[binks in reply to TynchyChica]

Thank you, I've tried hot water bottles which do help for the usual ibs pains, also sitting in a warm bath. These episodes are so sudden and debilitating they catch me by surprise.Another of the joys of ibs

🙄

[scotsrish in reply to binks]

I live in BC, Canada and was diagnosed with IBS twenty years ago. Blanket diagnoses as far as i am concerned and to call it a "functional" disease is rediculous. A term frequently used by medical people who have never been dealt with the pain and horrors of IBS-D. I too have been trapped unable to go out because of the unpredictability of the disease, the pain which sometimes is so like childbirth. Many times i have been on the biffy with a bucket under my chin because the pain can get so intense that i throw up. I have had over the year four attempts by different specialists to do a colonoscopy but there are some serious bends and kinks in my colon that make it impossible. I have had two virtual colonoscopy's which they say look normal to possible celiac, diverticulosis..not helpful at all. Years ago i quit gluten and dairy on my own and at the time it made a huge difference. Sadly more and more children and people are being wrongfully diagnosed with IBS or just gluten and dairy allergy's. So many foods are smothered in herbicides/ pesticides like Glyphosate which absolutely not only kill all sorts of things in nature from other plants to bees to birds and bats. Causes cancer and tests show it damages the microbia of the gut but it is very hard to eliminate from the body.

We need more research on all bowel diseases as the gut is very important to all the other body parts including the brain. The title IBS just leaves a patient hanging and also the questions like " have you had any extra stress in your life lately" ..well gees doc besides being afraid to eat when i go out with friends or not knowing where i can access an open washroom or being terrified i might poop myself in public once again...all is fine!

[binks in reply to scotsrish]

You are so right. And the childbirth comparison is spot on with no exaggeration.When I had my colon scan 6 years ago the consultant said "so, it's just IBS". How many people have been told exactly that. It ruins my life.

[Mummy09 in reply to scotsrish]

Hi, I am new to this as just been diagnosed with severe IBS, do you have excess colon? I had an endoscopy and I have lots of redundant colon. I have never been in this much pain, even childbirth was easier and I have 9 children!

[Maureen1958]

Hi, I am thinking this might be something to do with the vagus nerve. I get what is called a vasovagal attack on the toilet sometimes. Other people on this site have it as well. I will try to explain it and then put a link on about it. From what I can work out the bowel sits on the vagus nerve and that pressure can make you faint, except in my case I don't faint but feel really ill, hot, and feel like I want to be sick (sometimes I am sick) and like I have no control over my body. I have this overwhelming desire to lay down and have on many occasions had to come out of the toilet and lay on the landing floor. I don't feel so bad whilst laying down but when I get up it is still there and I end up laying down and getting up and basicially getting nowhere. Whilst this is going on I have the overwhelming desire to go to the toilet whilst stand up but when I go back into the toilet to go, I can't always get anything out, and if I do it would be tiny but I would just continue to feel there was more in there and the feeling gets more and more intense. See link below:

ctvnews.ca/health/fainting-...

The vagus nerve is very involved with the digestive system and it runs all around your body. It is involved with the gagging reflex and being sick. I think what happens is that the nerve tightens and makes you feel you want to be sick or need to go to the toilet or both. And it makes you faint.

So I am wondering if this is what is causing your problem. There appears to be no answers, as far as I can see from googling, you just have to go through the process. But I am no expert on how the body works. But it may be something to consider. But I would go back to your doctor and get them to do some more tests because what you are going through must be hell.

[TynchyChica in reply to Maureen1958]

Hi Maureen, this is very helpful, thank you for taking the time to post this i really appreciate it I am sometimes sick so this makes sense, sorry you are going through this too and hope you get it sorted! I certainly will go back and keep on at them as i can't go through this for much longer, thanks again and take care x

[Maureen1958 in reply to TynchyChica]

I really hope you get some help with this. Let us know how you get on, we are like a little family on here and it's always good to know what's happening with each other. And the best of luck.

[b1b1b1]

Have you seen a gastroenterologist or just a GP? I think you should see a gastro, as what you are going through sounds unbearable. You definitely need help from a specialist, as no one should suffer this.

[TynchyChica in reply to b1b1b1]

Hi, yeah i have seen a gastro many years ago but i am thinking i need to go back and be more persistent to get the help i need, thank you for your reply

[raestien]

Hi, I would revisit gastro, I was treated for IBS for many years until I had to see another GP as my usual was on holiday. They referred me to to a gasto consultant and after a few tests I was diagnosed with Crohns. That was 30 years ago and since a bowel op 10 years ago I have been well. However since the start of this year I have been getting symptoms again and because a MRI in early February showed no active Crohns I am back to being told it must be IBS. It feels like deja vu.

[TynchyChica]

Hello, yes i will definitely do this, it was good the other GP noticed it was that! Oh no, that sounds terrible, especially thinking it was probably gone for good! I hope you get it sorted this time around. I have a doctors appointment booked for this afternoon so will ask to see a specialist at the hospital and hopefully i can get it sorted too. Take care x

[OldTimer74]

Well, I really feel sorry for you and all the others on here that are suffering. My condition has gotten worse over the last year ( could it be the vaccine?) I was plodding along with the problems I have had over the years and then it got worse after the jab. Is it to do with the jab! who knows and these sort of conditions seem to be beyond most doctors to sort for us. There is more of this sort of thing about now so it makes you wonder. Yes it is a stressful time so maybe that`s part and parcel of it but at 76 I`m not looking forward to the future. I have a major op coming up on my Aorta so how I`m gonna manage my system whilst in a ward I really don`t know. I am also waiting for an Inguinal Hernia repair. I recently had both my eyes sorted regarding cataracts so at least I can find my way to the toilet at night without searching for my glasses. Let us know how you get on and hopefully someone might listen to you but I wouldn`t hold your breath. Take Care.

[TynchyChica in reply to OldTimer74]

Thank you for your reply, sorry to hear you are suffering too. Yes i agree, most doctors don't seem to understand it or be able to treat it which is so frustrating especially when it hurts so bad. I hope the op goes well, it must be so difficult to go through that as well! Yes I will and i hope all goes well for you x

[Cookingca]

I am sorry to hear you are so bad not a lot of advice I can give I also joined looking for advice. I have chronic ibs -d have done for about 10yrs + was under gastro who just got embarrassed as I am a big lady !! I Do feel for you the pain is bad have they not prescribed you any pain killers? Have you tired a wheat pack that helps me. I am in flare at the moment so not going far.

[TynchyChica in reply to Cookingca]

Sorry to hear about your IBS too, i know how you feel about being embarrassed and its not nice. Yes ive tried many different pain killers, ones off the shelf like buscopan and also prescribed ones but they didn't help me unfortunately. I have found heat packs stop me from fainting with the pain which is a relief but they don't sop the whole pain, i'll keep trying to look for other ways and i hope you get it sorted too x

[Cookingca in reply to TynchyChica]

At lest you can see a gp in person my practice are only doing over the app. I have managed to get a referral I have had a letter saying I will get a phone call app in 21 days of the letter which was saturday but I don't how they can asses me over the phone. I am fed up of doing battle to try and get medical help for my other conditions as well. I have had to contact a specialist hosiery company about my compression stockings for my lipodema as the hospice did zoom measurements and did not order the right garments ! So found the item they should have ordered from the company direct so one little bit of stress gone.

Get that sorted and my jaw plays up again I have tmj the nerves on the side of the jaw became very tight when you concentrate only with tmj they become over tight and very painful no cure massage the nerve and do exercises of the face and try to have my mouth open if i am concentrating !

My ibs has seem to calmed a little not getting so much water stool as mushy but the pains are still horrendous dose not help that my period is due and that also triggers it. I am doing well on soya/ almond milk that seems to have helped so every now & again i have a decaf coffee as get fed up of fruit tea this had become one of my triggers but some one in the bowel & bladder group on fb suggested it could be the milk not the coffee.

I managed to go out to town yesterday so was pleased with that no dashes to the nearest toilet but back to being unsettled again today. Oh well just have to put up with it until the gastro get in touch. Hope every one else is doing better. Sorry for then long post just very frustrated with life at the moment xx

[TynchyChica in reply to Cookingca]

It sounds like you are going through so much! Really sorry to hear that, i really hope they can do something for you, but i get the fact its hard to explain over the phone and its certainly not ideal. Glad to hear the IBS has calmed a bit, my periods trigger them badly too, thats the only pattern i have found so far, but not sure what else makes it come on. No need to be sorry, sometimes it feels better just to get it out of your system, it certainly does for me. When i wrote the post i felt a bit relived just to write it down. I get your frustrations, it would be great if they could just give us a magic pill to make it all go away! I hope all goes well for you in the future x

[Cookingca in reply to TynchyChica]

Should have said only doing app over the phone very very few face to at my gp can't even turn up have to ring to take any think down or collect any think first! Due to covid but most other gp's in area gone back to norma. Now been told need antibiotics for my legs as weeping great more loo time x

[Batteria]

This is too much for anyone to have to bear. I have always found ice packs better pain killers than heat. Your condition sounds beyond ibs. You must insist on more attention from your gen pract. If not satisfied you must just say that you can’t move any more and ask for an ambulance to take you to hospital. Say it like it is. Like you’ve told us. Be sincere. Say you are unable to cope any longer. I will be thinking of you. Con amore Bx

[TynchyChica in reply to Batteria]

I haven't tried ice packs, ill give that a go next time, it may be a better pain killer, thank you for recommending that. I agree, i have looked at my symptoms and seems more like Crohns (as blood does not seem to be a symptom with IBS) I have had to have an ambulance come out a couple of times when i fainted and be put on a drip but then they just send me home and say we don't know what it is which is so frustrating. I went to the doctors on Monday and told them i can't take it anymore and its controlling my life, he has taken blood and stool samples so fingers crossed, but i don't hold out much hope. Thank you for your reply x