Help please. Immense pain and discomfort - IBS Network

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Help please. Immense pain and discomfort

vixylouise profile image
16 Replies

Help . . . At my wit's end. Had diverticulitis for years and I think it's getting worse. I suffer from IBS and gastritis symptoms all the time. Fed up of trying to get doctors to listen as the pain is dreadful and I can not cope. Bloated severely, can't eat properly and loosing weight constantly. Toilet habits go from constipation to diorhea, gone lactose free which helps a little and stay away from heavy gluten. Always have trapped wind with intense pain under ribs to both left and right and even trapped wind in my back. My rib cage makes noises with the simplest of movements. Had endoscopy, CT and a small ultrasound which didn't even check where my pains are ?? Due colonoscopy in a few days if I can manage the solutions as I'm so sore. Can't sleep more than 4 hours a day as pain is so bad. Doctors put me on gabapentin and paracetamol but it barely touches the pain. I have the diet of a small child and feel chronic. Any help appreciated.

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vixylouise
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16 Replies
FRreedman profile image
FRreedman

I think I would go back to basics...…. First, only eat grilled chicken or fish, with plain boiled potatoes, and only drink water (at least 2 litres per day). Slowly add other items of food into your diet, as well as increasing and varying your liquid intake (avoid alcohol and fizzy drinks). Keep an accurate food and drink diary so you can see what upsets you and what doesn't.

vixylouise profile image
vixylouise in reply to FRreedman

Thanks for replying. I'm already doing gluten and lactose free on the low fodmap, but not eating much really (small child's diet) I've lost 1 and half stone in 7-8 weeks. So I'm not eating anything that can disagree with me. I have pain to under both ribs and pain in far left and far right and mild grating pain in the middle of my stomach. Endoscopy found nothing, they did a CT but without contrast dye (as I get reactions) and said it was vague without the dye ? I paid for a private ultrasound doing but strangely they hardly even when the areas of pain. In the last 8 weeks I have attended A and E 7 times which I don't like doing but was beside myself, my bloods show high reds and have previously shown infection and been given antibiotics but just constant pain and living on 4 hours sleep a day as the pains are impossible to sleep with. My bowel habits go from constipated to diorhea with no pattern. I also get pain in my mid back (ribs) and mild chest pain on the left. I feel like I have no life and can't go on. I am sick of been sent away by doctors both at my local doctors and at hospital. They did give me tramadol which helped the pains but within 3 days had me in more pain with constipation. DOES ANYONE KNOW OF ANY CONSULTANT THAT WOULD SEE ME PRIVATELY IN SOUTH OR WEST YORKSHIRE as I need to get myself sorted. ASAP PLEASE

BabsyWabsy profile image
BabsyWabsy in reply to vixylouise

Hi, So sorry you are in such pain. I am also in West Yorkshire and in 2018, I saw Mr Henry Sue-Ling at The Nuffield in Leeds. nuffieldhealth.com/consulta...

He was excellent, and very pleasant to deal with. I was referred through NHS, but I think there are prices on the hospital website.

vixylouise profile image
vixylouise in reply to BabsyWabsy

I had a look at both Nuffield and the Claremont too but they won't see you without a referral ?? (Thanks for replying) I will honestly do or try anything to get well and pain free.

BabsyWabsy profile image
BabsyWabsy in reply to vixylouise

Can you ask for a referral from your GP?

vixylouise profile image
vixylouise in reply to BabsyWabsy

I tried sending my gastro referral letter to Claremont but when they got back to me it seems they need a referral from actual gastro department itself who aren't been particularly helpful.

vixylouise profile image
vixylouise in reply to vixylouise

I survived the moviprep and the colonoscopy but sore and tender. Showed the diverticulitis obviously but nothing else. 2 days on and trying to eat is hard, pain and bloating with cramps just the same as before. Seeing doctors again in the morning. I've had this everyday for over 2 months , no sleep and hardly any food. Feel chronic. What do you have to do to get the doctor's and gastro consultant to do something and help you. The discomfort is unbearable.

Katerina1 profile image
Katerina1 in reply to vixylouise

Hello,

Diverticular disease and IBS can be very painful. I have suffered for several years. I don't know about your area, but there is a well known private provider in my area where you can book to see a consultant privately without a referral. I tried this route, but he was dismissive and with a shrug suggested paracetamol. A worry for you losing weight and doctors should take notice and try to help with this. My NHS gastros always ask whether I have lost weight. I take multivitamins to try to help the limitation on range of food. A bland diet seems to help a bit and I add in small extras on better days. No curry, spiced food or onions ever for me though. I haven't found a way yet to deal with the pain. All the best.

asbayford profile image
asbayford

Hi you said you're only doing gluten and lacto free on low fodmap diet, what about the other fodmaps (fructans, fructose, sorbitol, mannitol and GOS). They're finding out most IBS are not sensitive to gluten, but instead intolerant to the fructans in wheat/grains. Monash university app is amazing, very eye opening :)

vixylouise profile image
vixylouise in reply to asbayford

I will have s look on Google and see what I can research on it (thanks) as nobody has mentioned that to me before. Thanks for replying.

asbayford profile image
asbayford in reply to vixylouise

No worries! Keep us all updated:)

hi there i was diagnosed with diverticular disease in 2017 after months of bowel problems it was picked up on a ct scan ive since stopped eating red meat and alot of food i used to eat , however i still get regular symptoms like bloating mostly of which is caused by gas and although really painful and annoying its harmless im still full of gas after two years i drink lots of water i avoid foods with skins no white bread and even lots of veg that cause gas . Its possible you have IBS along side diverticular disease so symptoms seem to be always there. I take extra Vitamin D aswell . Diverticular disease is for life .

FicusElastica profile image
FicusElastica

So sad you have these horrible symptoms to deal with. You said you had antibiotics at one point. My partner's diverticulitis became a lot quieter after he had hospital level antibiotics for appendicitis, I also have a friend whose chronic cystitis cleared up after she had appendicitis. Maybe heavy duty antibiotic treatment is called for. Do they ever check for infection levels? He was never offered this till he had appendicitis.

If pain is hopeless maybe you could ask about a pain clinic (make the point ... ) but if you can afford it, sometimes acupuncture can help pain just by distracting the body ... not a treatment, but helps some people. If it's going to help, it will show within 2 or 3 sessions.

IBSNetwork profile image
IBSNetworkPartnerIBS Network

Hi there,

Sorry to hear you're struggling. If you need help and support we are here theibsnetwork.org

vixylouise profile image
vixylouise in reply to IBSNetwork

Can you recommend anything ?

IBSNetwork profile image
IBSNetworkPartnerIBS Network in reply to vixylouise

If you'd like to speak to one of our medical professionals more info on how you can do that here theibsnetwork.org/contact/

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