Burning intestines not GERD or heartburn

[MyStar86]

Hi,

I wanted to ask if anyone experiences burning intestines when they have violent liquid bowels? It’s what I would call nerve pain as it prickles and burns in my upper abdomen not my stomach this is not GERD or heartburn it is my intestines that burn and the burning goes through to my back. It is not triggered by certain foods and I have a very restricted safe diet anyway so I know it’s not that but the doctors don’t know how to stop the burning. Imodium just puts a cork in it and just stops it coming out so it just burns inside me. The pain is driving me insane, has anyone experienced this if so what helps? Any medication not buscopan etc or ssri medication because neither work for me and I can tolerate anything with serotonin so that rules out most nerve drugs also pregabalin and gabapentin do not work either.

Any tips would be helpful but yes I have tried peppermint and camomile tea plus acupuncture. Thank you xx

[heartmatters1]

Hi

I think I know what you mean. I have been suffering with something similar for a while. My intestines feel ‘hot’. It gradually got worse with severe D. Feeling very ill too. GP has diagnosed bowel infection and has put me on antibiotics, which I have finished today. 5 days later bowel has settled down. I do have diverticulosis & I think it flared into diverticulitis. I have a theory that the sensation is all the inflammation occurring.

Hope you find an answer to yours.

Best wishes.

[MyStar86 in reply to heartmatters1]

Thank you for sharing and I’m glad the antibiotics helped you. Unfortunately mine started a few years ago when I had campylobacter and I couldn’t shift it and the burning began it was so scary then I was on antibiotics for weeks which did help but then once I stopped them I was back to the burning again then I had streptococcus and pneumonia and was on antibiotics for nearly 6months with a long stay in hospital but that caused the burning to ramp up and get so much worse now I’m plagued with the constant burning and vicious bowels it’s just awful nothing seems to take it away and it’s so painful all the time regardless of what I eat so I feel very lost 😞. I have had lots of inflammation previously in the colon and ulcers in the small intestine but I still have the burning even when then inflammation isn’t active and scopes come back clear. It was put down to nerve damage but the nerve drugs cause me bad reactions so that’s why I feel so scared as I can’t live like this so I just wish there was something that could help it and stop the burning and pain xx

[heartmatters1 in reply to MyStar86]

Oh dear I am sorry to hear what you’re going /you’ve been through. Our guts are so unpredictable. They just take over our lives 😣. I am frightened about planning anything!

I do hope things settle down for you soon.

Best wishes 🙏x

[MyStar86 in reply to heartmatters1]

Thank you that means a lot I wish mine were unpredictable then I would get a break from it but I don’t it’s 24:7 😭 xx

[-lilybet in reply to MyStar86]

Sorry to hear that your suffering.

After I’ve eaten I become extremely hot from the inside like my whole bowels are literally burning up I have not found any answers as of yet I was diagnosed with IBS 2017 and diverticula in 2020 I’m currently waiting on biopsies from an urgent suspected cancer colonoscopy where apparently no cancer was bittersweet moment as I’m still in excruciating pain, I’m also having bladder/kidney/urine flow issues which I’m damm sure is related to my colon as on the last colonoscopy they have found an abrasion/ulcer and put a tattoo on the opposite side for future/further investigations . I’ve just been let out from an overnight stay in the urology department where I apparently have a uti yet for the past 8 weeks whenever I’ve sent a sample into my drs and they dipped it it always showed blood( I’m post-menopausal) and sometimes lucicites yet when they send to lab nothing grows! So had a mri done just in case nerve damage was causing my bladder issues but that’s come back clear so another bittersweet moment…..

I’m 47 and feel hundred no quality of life and am feeling robbed as all my daughters are grown up so this is meant to be ME TIME sorry for the ramblings. Hope you get answers soon.

Take care and be kind to yourself

X

[TheSufferingOnes]

Hi. Sorry to hear you're suffering so much pain. I suffer horribly from ibs pain on a daily basis and I occasionally suffer stabbing/burning pains in my upper back which I'm sure is related to my gut trouble. Nothing really helps apart from a wireless tens machine. That does give a little relief although it's actually more effective on my lower back which is where I experience most of the agonising gut pain.Oh the joys of life!!😩

[MyStar86 in reply to TheSufferingOnes]

My pain is all also goes to my back and I can feel the burning in my back it’s so horrible it is all the time I cannot escape it I tried a tens before and it made it worse so it’s very confusing I just need some help as I can’t take much more x

[PXPXJ]

I take 300 mg of gabapentin twice a day for an entirely different medical problem. I can say, thank the Lord, I have never had any issues at all. That was even when I was taking 600 mg 3 times a day.

[MyStar86 in reply to PXPXJ]

Thank you I wish that would help me but I reacted badly to gabapentin and pregabalin they both give me vicious loose bowels and make the burning worse…..so I’m a bit of an odd case which is really upsetting me I feel so lost and confused x

[Ella59]

Yes, I get burning in the intestines, I have had it for several years but it comes and goes, it isn’t there constantly. I frequently get it in the morning sometimes before eating breakfast other times after but it usually goes by lunchtime. Other times it suddenly comes on in the afternoon for no reason. I must admit I haven’t seen a doctor about it and treated it as another symptom of IBS.

I have IBS-C and have a sneaking suspicion it happens when I am having or have had a flare up but others times it happens when I have no other symptoms.

[MyStar86 in reply to Ella59]

Mine is all the time that’s why it scares me as I’ve tried every medication and alternative treatment but nothing helps I can hardly sit for more than 30 mins without crying even laying in bed it just takes over everything it hurts so much regardless of what I eat or don’t eat it’s awful I can’t cope with the pain x

[Ella59 in reply to MyStar86]

That sounds absolutely terrible for you, I do hope you can find some treatment that if not curing it entirely will go some way to alleviating the pain.

[MyStar86 in reply to Ella59]

Thank you it really is that’s why I was hoping someone had a miracle cure or some medicine or some magic specialist to recommend but thank you for your kind words and thoughts it just really sucks I don’t know how much longer I can live with this pain as I can’t do anything I’m in agony all the time with zero life due to it xx

[301246]

I have different pains including the burning intestines. I tried 6 sessions of acupuncture which unfortunately didn't work.It's a proper nightmare and I feel for you. Have tried about 40 supplements all to no avail.

I am having a lidocaine/ketamin infusion on 29th January in the hope it will help with the severe pain. Best wishes in your quest to find something that will help you. Good luck and best wishes.

[MyStar86 in reply to 301246]

I was offered that but I am so scared as I’ve reacted badly to all medications, please can you let me know how you get on I would be really interested to know if it helps and how you feel after? Thank you so much for sharing your story xx

[301246 in reply to MyStar86]

Of course I will let you know the outcome. I have been in chronic pain for years so I am happy to try anything. I have has 12 sessions I'd gut directed hypnotherapy through Prof Whorwell in Manchester, didn't help.Tried Duloxetine through a private doctor plus more private hypnotherapy, still suffering. Of course I'm a bit anxious about how it will feel, just hope I'm sufficiently comfortable to take the infusion. Not long to wait now!! Best wishes

[MyStar86 in reply to 301246]

Ps. Good luck for it and do let me know how you get on. Are you seeing a private pain specialist for that? That’s who recommended it to me but I said I wanted to look into it as I don’t know much about it xx

[301246]

This was offered to me on the NHS in August 2022 with an apt. for August 2023. However just prior to this apt it was cancelled due to a national shortage of Ketamin. Hence an 18 month wait! I am that desperate to try to get some life back, I don't go out. I had previously had a Lidocaine alone Infusion but that had no affect on me at all.Hopefully with the added ketamine it will help. Everything crossed.!!

[MyStar86 in reply to 301246]

Wow that is awful waiting that long, how do you cope day to day? I cannot function at all I am in agony it is making me suicidal. Do you take any medication? Have you found anything helps? Thank you again for sharing and I will be thinking of you next week xx