So much pain: I'm just having a rant about how... - IBS Network

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So much pain

edwangy profile image

I'm just having a rant about how much pain I'm in today, still no sleep, don't know what to do. Got yet another appontment with a consultant, just want him to check what's going on inside, this constant pain can't just be IBS it's been continuous for about 4-5 weeks, GP gave me amitriptyline have taken them for 4 nights up to now and they seem to make things worse, burning sensation when I pee and even worse constipation than before! I know it says that these things take a few weeks to have an effect, but I can't put up with that foreven another day. Does anybody else have these side effects? I know there's not much anyone can say but I just needed to rant. x

72 Replies

Is the pain in one place? Did you get a face to face GP appointment?? I can't believe it's been going on that long!

edwangy profile image
edwangy in reply to binks

Pain is all over lower abdomen, had 3 GP telephone appointments and 1 face to face . GP said if it continues to go to A&E but can't face sitting there for hours when in so much pain. Have been referred again to a consultant on 3rd September, just keep getting passed around. Nobody seems to care x

binks profile image
binks in reply to edwangy

They really don’t. I’m not sure what’s happened to GP’s. We are left feeling like a nuisance and it shouldn’t be like this

Catgirl1976 profile image
Catgirl1976 in reply to binks

I know gp appointments have become like gold dust lately!

Do you have a fever at all?

edwangy profile image
edwangy in reply to Krn210

My temperature is normal when I take it, but I do get bad night sweats sometimes.x

Krn210 profile image
Krn210 in reply to edwangy

Normal temp is good. I wouldn’t be surprised if the sweats aren’t from all the pain. Have you tried ice packs on your tummy at all?

edwangy profile image
edwangy in reply to Krn210

No but I've used a hot water bottle sometimes but it doesn't really help. I've recently bought a tens machine which I've been using which seems to help numb the pain somewhat, it's the lack of sleep seems to make it worse, a vicious circle. Seeing gastro consultant on 3rd September, just hope he can help. Thank you for taking the time to reply x

edwangy these links may offer a possible diet/deficiency cause for some of your symptoms. The first link on sibo has a good graphic of the brain gut connection. Searching on "thiamine IBS" will expand on it. Pain causes loss of magnesium needed to activate thiamine resulting in the a deficiency impacting the vagus nerve. In addition to B complex and additional magnesium it may be beneficial using a TTFD form of thiamine to pass through the blood brain barrier. Always consult your health care provider before using any supplement.

eonutrition.co.uk/post/thia...

chroniclesinhealth.com/inde...

stuttersense.blogspot.com/2...

edwangy profile image
edwangy in reply to Pte82

Thanks for the links. I don't think I'm lacking magnesium though, I take milk of magnesia to help with constipation x

Pte82 profile image
Pte82 in reply to edwangy

edwangy reliance on milk of magnesia should be cleared with your health care provider. It could be contributing to your symptoms.

my.clevelandclinic.org/heal...

edwangy profile image
edwangy in reply to Pte82

I've thought this, I have tried lactulose and that causes cramps, I've tried dulcoease and that doesn't work I've just taken half a sachet of cosmocol to see if that helps. Just can't go without taking something and then the constipation causes cramps. I'm between the devil and the deep blue sea!

Pte82 profile image
Pte82 in reply to edwangy

Completely understand. Senna is an over the counter laxative to check out. In the earlier post I sent a link about the vagus nerve. I mentioned TTFD earlier, sulbutiamine is another form of thiamine that can pass through the blood/brain barrier while benfotiamine is great elsewhere. This link on magnesium will provide dose info along with forms of magnesium and causes of magnesium loss. Always consult your health care provider before using any supplement.

krispin.com/magnes.html

Smeese profile image
Smeese in reply to edwangy

Psyllium husk is a god send to me when I'm like this. A spoonful in a glass of water morning and afternoon. Will help soothe your gut, feed the good gut flora and aid mobility.

You may have to go to A&E to get some answers. If you go breakfast time you may have a better chance of not so long a wait.You could ring 911 and say your GP said to go to A&E if the pain gets worse, in the area where I live they can make you an A&E Appointment ...

It worked for me when I had a strangulated hernia.

Good luck.

edwangy profile image
edwangy in reply to bookeater

Thanks for that, but I assume you live in the US with your emergency number being 911, I tried A&E and told them my GP advised me to come it makes no difference, they don't prioritise at all, you have to be near deaths door before anyone takes any notice. A&Es are not nice places to have to wait for hours when you're in pain and sometimes need the loo. x

bookeater profile image
bookeater in reply to edwangy

No, I'm in North West Greater Manchester the number was a typing error it should have been 111

It was 111 who rang the A&E and made the appointment for me. This was in January height of the Pandemic.

The 111 person had to get a nurse to contact me then someone else I spoke to did not live in the area so I told her which A&E I needed to go to and I was given a specific time to go.

I then was kept in. for emergency surgery by A&E.

edwangy profile image
edwangy in reply to bookeater

I have rang 111 before, just asked my symptoms and told me to go to A&E.

When you went at the height of the pandemic, A&E dept were virtually empty as people were too scared to go near hospitals. They are now crowded like cattle markets x

Did u try hot compress? Of not working, try warmth from a soft pillow by hugging it in your abdomen where the pain . Hug it until it feels warm. It may ease ur pain , its like warm compress but the softness and puffiness helps. It might be gas pain that u are feeling and if it is, try farting and butping a lot continuosly until most gas are out. U said u have constipation, when u eat, eat food with warm liquid like hot soup or hot tea or hot water etc.. if food is eaten like these, stools are usually softer. Fiber also helps in moving the bowel out. High fibers are brown rice, oats, green veggies etc.

If it burns when you pee you might need to check out a urinary tract infection (uti) it's a common companion to IBS and they tend to get worse together. It will help if you make your diet a little more aklaline with some root vegetable soup/stew or green leafy things and drastically reduce sugar/caffeine/alcohol - coffee and chocolate will make it much worse. If I get one then it always triggers the other and the pain goes from front to back :( sorry you are suffering. Drink plenty of water it will help both.

Hi fellow mancunian I'm sorry to hear you're suffering so badly. I've tried everything for chronic constipation over the years. I'm now on prucalopride which is the first thing that has helped after seeing a gastroenterologist. I wonder if your gp can prescribe them for you and see if they help? Worth a try I guess I really hope you get sorted x

For soothing nighttime pain nothing beats hot pads ( wheat bags) heated in the microwave. Much better than hot water bottles, they mould to your tummy.

Meant to add, my GP has warned me against going to A&E...long and uncomfortable wait and only any good if there’s a gastroenterologist around. A&E doctors simply don’t have the specialist knowledge.

I really sympathise. I've had IBS for over 40 yrs. It ruined my life don't let it ruin yours. I took Amytriptoline for another condition and it made my IBS much worse.Blood tests don't show IBS they can only rule out other conditions. Its difficult for doctors to make a diagnosis when they cant see whats hapoening inside and all tests come back clear.

The things that can make IBS worse are some medications. I had horrific pain when I took Omeprazole. But, usually its all down to what you eat and drink plus intolerances that you may have developed. The Fodmap diet can help by telling you what foods to avoid....high fibre foods and replacing it with soluable fibre foods but that doesn't mean everyone can eat all the foods listed.

I can only eat well cooked carrots as a veg and to keep things moving round the gut without pain I eat a half a kilo of them every day. I love carrots. There's no real cure for IBS at present and I haven't found any medications that help either so it's all down to management and finding what you can and can't eat.

I am you !! My lower gut / belly is so painful . I constantly feel the need to go to the loo. Chronic wind too. I am so bloated I look pregnant and no one seems to care. I've had colonoscopy examination. Oh it's just IBS. JUST! I've had IBS for 32 years and it's never been this bad or painful before. I'm even wondering if the covid jabs have made it like this? So im ranting too. I may insist on seeing a gastro specialist!! Be very interested to hear what your gastro Dr has to say XxxxxX

Hi edwangy you’re prob right maybe it’s your fibroid degenerating it can cause awful pain and some people with fibroids have endo too which doesn’t show up on scans , I would call 111 you shouldn’t have to live with that kind of pain x

edwangy profile image
edwangy in reply to Pansy2

Had hysterectomy 9 weeks ago, had to take stool softener everyday during revoery, I now can't go without them. I've been back to my gynae for check and all is well regarding the op, but I want to make sure. I'm going to ask the gastro for an MRI to check all is well inside and this pain is because of my IBS

Pansy2 profile image
Pansy2 in reply to edwangy

I’m glad the op went well and yes ask the gastro for more tests do you take the movicol every day ? As that will soften it but not speed transit up if you have slow bowels x

edwangy profile image
edwangy in reply to Pansy2

Thanks Pansy, I've been taking small doses of milk of magnesia each day and am wondering if this could be causing the cramps so last night I took half a sachet of cosmocol and again this morning. Nothings happened yet but cramps aren't so bad. I just want to take it slowly and not bombard my bowels with it in case it causes worse symptoms. I'll up the dose tonight if l still haven't been. Just hope I can get through the day without pain. If I'm desparate I'll use a glycerine suppository. x

Pansy2 profile image
Pansy2 in reply to edwangy

It could be the magnesium I would try 1 sachet every day it does take a while to work very slow acting , try getting some Epsom salts and putting it into a warm bath it’s another way of getting magnesium and it will relax the muscles , I do sympathise I had no sleep for 3 months solid I was tearing my hair out with the pain , not seen a gp for 2 years still have no diagnosis ☹️X

edwangy profile image
edwangy in reply to Pansy2

How did you eventually get some sleep?x

Pansy2 profile image
Pansy2 in reply to edwangy

I asked for antidepressants now I take them everyday and if my back is good I knacker myself out in the day and I use magnesium creams which relaxes muscles and listen to healing reiki music on YouTube , I still struggle to get to sleep even now but the pain is not so bad x

edwangy profile image
edwangy in reply to Pansy2

Do you get pain from ibs? x

Pansy2 profile image
Pansy2 in reply to edwangy

Hell yes especially right side pain trapped wind , bloating x

Bless you. I’m devastated by your post. You are so eloquent I’m not going to get you out of my mind. Now is the time to go for the Oscar. Take yourself to gen pract surgery or casualty and just lie in a ball on the floor and keep saying help me. Don’t leave. Just keep saying you are too weak to move. I feigned a total collapse in Washington DC airport and was rushed to hospital. They said I was seriously ill with a bug and they saved my life. I don’t know to this day how much was real and how much was acting. You need urgent psychological attention as well as physical assistance. How can you be an asset to the human race if you are ill? You can’t. Get yourself sorted today. Please. Con amore Bx

edwangy profile image
edwangy in reply to Batteria

What was wrong with you at the time?

Batteria profile image
Batteria in reply to edwangy

I was on holiday in America at the time. I have had Ibsd for 43 years but it is well controlled at the moment. My symptoms in the airport were nothing to do with IBSd. I just wanted to vomit but couldn’t and the lack of energy was alarming. I couldn’t keep my balance and had to lie on the floor. I asked other passengers for help and an ambulance was called and I was taken to casualty at Baltimore. They were wonderful. They did all sorts of tests and put me on various drips and and gave me antiviral injections. They came to the conclusion that I’d picked up a bug and they said I’d done the right thing by asking for medical assistance. They kept me on the ward for a couple of days and I recovered quickly. Thank goodness I had medical insurance. If you think your illness is more than ibs then you should be investigated. Buona fortuna. Bx

Hi edwangy I don't post very often but your problems relate very closely to my situation and I completely emphasize. Variable constipation for the past 6 months , now I'm completely blocked , even using laxatives ,for the past 4 days which I think is in the colon , not the rectum although I have strong urges. Have see Consultants and had a full body CT scan back in Feb 2020 and all was clear. Gastroscopy July 2020 , clear. No rectal bleeding but narrow stools . GP and Consultants just say it's my IBS or you are constipated take this laxative . Like you I have abdominal pain . I just feel pushed to one side and not taken seriously. Like you just need a scan so they can decide on the problem , quite clearly I have some symptons of something more sinister.

Tried NHS111 on Monday referred me to a Care Center , they said I should not be here and sent me back to the GP. Spoke with him the same day and prescribed more laxatives.Joday still no movement and still mild pain.

I'm 72 widowed and feel totally let down by the NHS. How do we access care when needed. If I walk into A&E they will send me home and talk to my GP for a referral which will take week. I guess the only option is to dial 999.

Seems I'm not the only one

Take care and thanks for posting your situation. Sorry about my rant Hope your situation is resolved soon xx

edwangy profile image
edwangy in reply to guitarman49

Hi there, it's an awful feeling of helplessness, you just want somebody to tell you what is wrong. I was in that much pain a few weeks ago that I did call an Ambulance (never been in one in my life) they asked about my symptoms and I explained how bad I was, they said it would be 11 hours before they could get here and I would still have to wait in the que in A&E. If they don't see it as life threatening, youdon't get priority you just have to wait. Regarding your constipation, try an gelatin suppository, I've used them a few times and they do work

guitarman49 profile image
guitarman49 in reply to edwangy

Hi edwangy Thank you for your reply and supportive words and your suggestion re suppositories. I'll give them a try. I think my issues are further up the bowel possibly a faecal impaction or even some sort of blockage. Like you I just would like some answers.I know I suffer from Health Anxiety , GBT has helped , otherwise I'm pretty healthy for my age. I just think they badge my problens as IBS !!!

Thanks again Take care

edwangy profile image
edwangy in reply to guitarman49

I know exactly what you mean, it's like you get to a certain age and they treat you as though all these things are inevitable. If the suppository doesn't work, I believe you can buy an enema from the chemist , I've never used one myself but I've heard of others that have. I think the suppository will work, but we can't go on like this can we. Have you been back to your GP? Keep on at them until they send you for more tests, it's the people who shout the loudest who get listened too. I kept ringing my GP for urgent appointments until they have referred me to consultant. Let's hope he doesn't try to fob me off, for his sake! x

guitarman49 profile image
guitarman49 in reply to edwangy

Thank you Good luck with your Consultants appointment. Let us all know the outcome. Take care

guitarman49 profile image
guitarman49 in reply to edwangy

Hi edwangy

Looked the NHS again to find a quick way forward , no luck. Very frustrated. Like you just need to understand what is going on.Have decided to go Privately via my local Spires Hospital to have some Radiology/Imaging scans. Spires will accept a referral from my GP (hopefully he will support me). Result are sent back directly to the GP. I expect anything from £300 to a £1000 for a full body CT Scan.

If using a Consultant fee £250 plus radiology costs but around 3 weeks wait for an appointment. Then the wait for the scan and results.

I feel really guilty about using this route but lucky I can afford to do it this way. Covid has certainly had a massive effect on Heathcare and accessability even in the private sector.

Do you have your Consultation date ?

Keep you updated. Take care.

Cortes3 profile image
Cortes3 in reply to guitarman49

Never feel guilty hope all goes well .

guitarman49 profile image
guitarman49 in reply to Cortes3

Hi Thank you Take care

edwangy profile image
edwangy in reply to guitarman49

Don't feel guilty guitarman, I'm going to do the same. My appointment is 3rd September NHS, he will probably want some tests which will probably take months, so depending on what he says I'm going to pay as well. I've put up with this for so long and NHS has let me down, they try to fob you off by saying there's nothing they can do etc. Want to know exactly what's going on inside, MRI is best, more detail, I had scans in the past but they don't show the same details as MRIs.

Hope your GP supports you, insist and don't take no for an answer. Let's know how you get on x

binks profile image
binks in reply to edwangy

Our healthcare system is a bit like the USA right now. Treated if you’re on deaths door otherwise pay for it. Which we actually do anyway through taxation 😬

edwangy profile image
edwangy in reply to binks

That's what I think and I think that's the intention. It's all about money.

guitarman49 profile image
guitarman49 in reply to edwangy

Hi edwangy Well I briefly spoke with my GP this morning. He is ware of my referral request for scan , I will push hard for an MRI (at least he currently has not refused) and we have a consultation on Tuesday 31st Aug to discuss the referral and review my symptoms. I think my email yesterday has helped now it's in writing. Shame really cause I like the guy and he is very attentive to your needs but the real problem is within the NHS.In the meantime he has changed the laxatives to Dulcoease 2 x 2 capsules per day and Laxido 8 sachets per day. Thinks it could be faecal impaction. I guess time will tell. Hopefully this will avoid suppositories.

Hope all goes well with your consulataion on the 3rd Sept . Please keep us informed.

Take care

Hi edwangy Hope all went well on Tuesday with your Consultant. Would be interest if they could help you particurly with pain management and the cause of your constant pain. With me the pain comes and goes and does not have a focal point.

Some good news I will have the CT (abdo + pelvic + constrast)Scan on the 16th Sept followup with the Gastro Consultant the following Wednesday 22nd Sept. The anxiety has already clicked in but I also hope they get to the bottom (no pun intended) of the problem. I don't think it's IBS but at least no blood in my poo , just from the rather large pile which I think is part of the constipation issue. In for removale with the surgeon on the 5th Oct.

Take care and keep in touch

edwangy profile image
edwangy in reply to guitarman49

Thanks so much for remembering guitarman. I'm having a colonoscopy on 16th September, I have diverticular disease as well which he said maybe the cause of pain but obviously not sure yet. No new painkiller though, he said to take buscopan which I take already which doesn't work. There's really nothing else I can take. I've tried amitriptyline for a few days, but it affected my waterworks so I stopped it,maybe I should persevere with it. Anyway, I'm glad you're going for all these tests, don't be surprised if they tell you that you have diverticular disease, a high percentage of people have these pouches which can cause pain. I hope they can find what it is that's causing the pain for both of us. I'll keep you posted, and if I find anything that can help, I'll let you know. Stay safe and pain free if possible xx

@

guitarman49 profile image
guitarman49 in reply to edwangy

Thank you , your words are very comforting. That's an interesting comment about diverticular disease When I meet with my GP's Locum back at the beginning of July this year he though I could be impacted due to diverticular disease.

Guess we will both have something to talk about on the 16th. Kind regards

Runefinder61 profile image
Runefinder61 in reply to edwangy

If I don't use suppository I don't go to the toilet. I've been out with my Daughter and two granddaughters today. I smiled my way to thru day . Came home and am in tears. My belly is so very bloated and painful , yet I'm told I'm not constipated. I'm scared to be quite honest. We all seem to be in the same ruddy boat with no one to help us ashore 🥺🥺

edwangy profile image
edwangy in reply to Runefinder61

Sorry you're feeling so down,I get the same way. You're right. Keep pestering your GP and insist on some tests, don't take no for an answer. Tell them you are bleeding and that you are not eating and have lost weight, they should make an urgent referral. In the meantime try lactulose or milk of magnesia, that's what I've been using up to now although they can cause cramps plus the suppositories.

Runefinder61 profile image
Runefinder61 in reply to edwangy

Oh lactulose is the devil in disguise! Got dolcoease and the suppositories too!! Take Andrews..oh lord you name it I've taken it . Even cosmocol. But it made me have an accident . I was mortified. But 8 sachets in a day will do that won't it ?? Why oh why isn't IBS treated as disease like it is in America! I think it's auto immune disease myself. Bless you for replying. We're a mess to be sure . But at least we have each other ❤️❤️❤️❤️

edwangy profile image
edwangy in reply to Runefinder61

Yes at least we're not alone. x

Pansy2 profile image
Pansy2 in reply to edwangy

Sorry for jumping in but laculose is not recommended for ibs c as it ferments in the gut causing wind and cramps I chucked mine in the bin 😖 bloody stuff x

JulieB5200 profile image
JulieB5200 in reply to Pansy2

Yes I totally agree!Never taking that again 🙈xx

Cortes3 profile image
Cortes3 in reply to Pansy2

Yes I found that out after taking it for at least 2 flipping years of it changed it myself to dulcoease no wind now fermentation in the gut it causes I think too .I'm still struggling most days to keep a soft stool will take a few more I think .I ended up at triage this week at our local hospital! They gave me ultrasound found I had thickening of the bowel right hand side bloods all normal 🤗so sick of it all now though felt really nausea ted this morning.🙄

Pansy2 profile image
Pansy2 in reply to Cortes3

Blimey that sounds bad what can they do for thickening and what’s caused it ? X

edwangy profile image
edwangy in reply to Cortes3

At least they gave you an ultrasound and found out what the problem is. I went to A&E on friday after advice from111, still waited 3 1/2 hours and got sent away with buscopan! I suffer with constipation and this doesn't help at all, still in severe pain every day. I hope you get sorted x

Cortes3 profile image
Cortes3 in reply to edwangy

Hi yes they had to do something I had a temperature ! Yesterday felt ok today feel rough again feels like my intestines are on fire anyway got to go back to docs he said phone them in 2 weeks lol ! I must admit he is pretty useless got rid of me to hospital no idea ! after having gall bladder removed never felt right apparently makes it all worse so ithink I'm done for just bear the pain everyday ! keep taking the ondensetron for nausea and al the rest lol .hope your ok 😆

edwangy profile image
edwangy in reply to Cortes3

If you can't go on like this, just keep pestering your doctor, ask for an urgent appointment and tell him you want an urgent referral to a specialist, otherwise you'll wait forever. I had several telephone appointments with my GP and they eventually sent a referral and I have appointment on Friday. I'll see what he says and tell him I want some tests. If I have to wait months I'll have to pay cos I can't take much more of this pain and sleepness nights . It's the people who shout loudest get heard, don't give up x

guitarman49 profile image
guitarman49 in reply to edwangy

Hi edwangy Sorry to hear you still have pain , you would think the medical guys would have something that really helps with the problems we have.A&E dissapointing , holiday weekends are not the best of times to present at A&E. Hopefully you will have a more positive meeting with your consultant on Tuesday.

Update : GP agreed the private referral , went down to the Radiology Dept to progress on Friday at the local Spires Hospital. The clinicians will review the referral and agree on the most suitable scan given my symptoms and history. Should get to know during this week when the scan will take place.

I have IBS-C and Lactulose works for me but yes had the same side effects and now use Laxido which I find works well. Lactulose contains Fructose which is a high FODMAP and should be avoided. Dolcoease prescribed by my GP also works well both of which I'm using for a 'clean out' in case my constipation is faecal impaction.Have also used suppositries.It's not easy coping with IBS but like many other people we have to manage other issues , for me it's GERD Gastris and Piles .

Take care and hope all goes well for you.

edwangy profile image
edwangy in reply to guitarman49

Thanks guitarman, I take a very small dose of milk of magnesia ( 10ml)

and have tried calgif quite sparingly I manage to go most mornings, but nothing helps with the pain, I've tried everything, can't take codeine or nsaids, so only paracetamol which does nothing. The only respite I get is taking 2 zopliclone every other night, so I get some sleep. They only last about 5 hours but at least its something. My doctor gave me 14 weeks ago but wouldn't give me anymore because they can be addictive and become ineffective. I get them from my Mum now, she has them on repeat and has done for the past 10 years! She doesn't take them very often, so she's giving them to me, thank God. Anyway, I hope you get some answers, let's know how you get on x

guitarman49 profile image
guitarman49 in reply to Pansy2

Hi Pansy2 Yep I have IBS-C and Lactulose works for me but yes had the same side effects and now use Laxido which I find works well. Lactulose contains Fructose which is a high FODMAP and should be avoided. Dolcoease prescribed by my GP also works well both of which I'm using for a 'clean out' in case my constipation is faecal impaction.It's not easy coping with IBS but like many other people we have to manage other issues , for me it's GERD Gastris and Piles .

Take care and hope all goes well for you.

Pansy2 profile image
Pansy2 in reply to guitarman49

Hi guitar man I use movicol too and optifibre it does work but still get right sided pain and bad low back pain , thankfully the piles are leaving me alone for now ! 🤣x

IBS is the diagnosis given by doctors when they haven't got the time to write down the proper diagnosis of :- I don't have a clue what is wrong with you because all the tests we know about so far have come back as negative. If Amitriptylene is not working for your pain ask your medics if you can be switched to Nortriptyline, which does the same but, in my case worked, with no side effects. Make a list of questions, for when you see your GI team, as otherwise, you will come out and forgotten to ask some of the important ones. Good luck, get well and stay safe.

edwangy profile image
edwangy in reply to FRreedman

Couldn't pee with amitriptyline and caused burning sensation, side effect of nortriptyline is also difficulty peeing. I think I'll leave them both alone, but thanks for the suggestion x

Hi edwangy, I sent you a private message on Chat last night, I just wondered if you have seen it!?

edwangy profile image
edwangy in reply to Maureen1958

Hi, I don't use chat, where did you send it to?

edwangy profile image
edwangy in reply to Maureen1958

Just seen chat on my mobile, I'll read it now

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