iBS chronic pain and bloating: Have had IBSC for... - IBS Network

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iBS chronic pain and bloating

Moose45
Moose45

Have had IBSC for many years with bad abdominal pain. Put on 10 mg amitryptaline last year with no help with pain only a dry mouth.Admitted to ED today with a week of severe pain. Discharged with nothing to help the pain.Totally interferes with my daily life.Not diet related. Any ideas with regard to pain and bad bloating gratefully received.

35 Replies
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If you're c, then that is automatically due to your diet. Anyway, let's not worry about that, let's try to help you sort yourself out. I was once a week or less often when I tried something I had been told about, but didn't believe. I checked with my GI consultant first, I didn't have much choice as I was an inpatient at the time. I drank two cans of Coca Cola (diet or whatever but must be the brand) on day one, the same again on day 2, one can on day 3 one can on day 4. I also made sure I was drinking approximately 2litres of water each day. How or why, I don't know (must be to do with the fizz and the secret recipe), I managed to have 1bm every other day (still had urgency, so had to be near toilets, but it was working). On my next OP appointment, I saw a different consultant, and she said oh it's just like Kiwis, they keep most people regular, well I love Kiwi fruits, but I only had them during the summer, so I gave them a try. Let me tell you, I now drink one can of Coca Cola every other day, and two Kiwi fruits every day, and I now have bms 2 in 3 days. That'll do me. Yes it's very firm, and there is a heck of a lot (tmi) but I feel a whole lot better for it. Give it a try.

Moose45
Moose45
in reply to FRreedman

Thank you but my IBS is not diet related more likely stress related.It can accompany very severe abdominal pain. I am hoping someone can advise on this pain as doctors say nothing they can do,_

Hi, I tried amitriptyline some years back when I was more IBS(D) and it made me constipated so I am wondering if it's making your constipation worse. It's just a thought. Perhaps speak to your doctor about it. I have never been given anything for pain that works. You mention something about a dry mouth, I get that when I am more constipated. I don't know if any of my ramblings help. Maureen.

Moose45
Moose45
in reply to Maureen1958

Thank you very much for your reply. I was put on 10 mg amitriptaline last year but not helpful and made my constipation worse . There does not appear to be any pain meds that can give you any pain relief. It is a very hard condition to live with and many sufferers.

janetmtt
janetmtt
in reply to Moose45

Did it make you gain weight

Moose45
Moose45
in reply to janetmtt

Hi, only around the middle ——severe bloating

janetmtt
janetmtt
in reply to Moose45

Well not good when you already have severe bloating! Just curious

Moose45
Moose45
in reply to janetmtt

Can be very uncomfortable and interfere with breathing if severe

janetmtt
janetmtt
in reply to Moose45

And clothes don't fit or you look pregnant - I am fed up with it

Moose45
Moose45
in reply to janetmtt

Too true

Just checking, have you been chewing gum ?

Moose45
Moose45
in reply to Azzu

No never chewed gum

I have ibs c all my life, alway was in pain , could never go to toilet and when i did it was painful.

Roll on to my 42nd birthday, ended up in A&E doubled over in pain and two weeks worth in there!!!! Not good...

After a very embarrassing 24 hours i got sent to a gastro , so glad i saw her it was like she knew me...

She told me ibs c or d is alway a food or stress problem.. i wasnt stressed at 5 years old so had to b food....

She told me to eliminate bread ... stodge and gluten first then go back see if i still had it then we would try something else....

Also peppermint capsule for the pain, probiotics, digestive enzyme to help break down food inside.

Well i got to say for the first time in 45 year i am now a ibs NON SUFFERER!!!

It been 3 years since i gave it all up and never looked back.. best thing i ever did.

I lost 2 stone, i look healthy.... no pain.. i poo everyday.

I look back and i think my main prob was bread and pastries anything with alot of yeast or gluten.....

Also figured out later down line it was red meat....

Pain wise use supplements.. peppermint cap are brilliant it helps wind and digestive tract and probiotics give u a good health gut bacteria

Moose45
Moose45
in reply to Lulububs

thank you for your reply. Have been under a gastroenterologist for a number of years

and tried FODMAP diet. He came to conclusion diet was not my problem. I have had

a lot of stress in my life and have never learnt to deal with it. I still follow quite a strict diet as I have diabetes.So pleased to hear you are out of pain and bowel function is now good.I have been old IBS can be a malfunction between brain and gut. nothing they can give you for somwtimes crippling pain

I can sense your utter desperation. I am in the same painful boat. Huge bloated belly , pain from sternum to womb. I use dolcoease to soften stool then a glycerine suppository to get it moving . Pain wise ? I've found nothing helps ! Hot water bottle is about it ! It's not taken seriously by my Dr but he has no clue how it can affect my life . I'm writing this whilst sipping water as I can't face anything else. It makes me extremely nauseous too. Do you get nausea? Take care of yourself.xxxx

Commiserations! Pain bloat and nausea are a dreadful combination when you don’t get any relief. Have not heard of dolcoease you say helps DROSSMAN CARE HAS SOME explanations. Is a world authority. O the condition Look up on google. But no satisfactory information or help Take care

Dolcoease is a soft capsule that you take to soften the stool . Makes it easier to pass but not always! You can buy it in supermarkets and chemists. I'll take a look on Google for thst name you gave me . Take care of yourself.xx

Drs don’t understand how bloat pain and constipation has such a detrimental effect on your life even gastroenterologist!Also suffer nausea and during a flare don’t like to eat anything. Drs don’t suffer and seem to think it’s all in your head!.Hope thing can improve for you soon

Lulububs
Lulububs
in reply to Moose45

Yes that very true... i dont suffer anymore but if i get nervous or upset it always my stomach that suffers

Have a look at Low Residue Diet

I use this along with mebeverine which helps prepare the bowel.

Works well for me

Hi, I had not heard of the Low Residue Diet, but just looked it up and it is more or less what I have been doing for quite some time now! :)

You are the same as me. IBS-C with intestinal nerve pain (visceral hypersensitivity). The pain is caused by a loss of neurons in pain control centres of the brain which registers normal activity of the bowel as pain. It can be caused by severe stress, PTSD or neglect or abuse in childhood. My pain got worse and worse after long bouts of work stress. I was given 10mg Amitriptyline too and I also tried gabapentin, but I got side effects with both. I am now on Linaclotide for IBS-C and intestinal nerve pain as recommended by my gastroenterlogist. I am also on the free 2 month trial of Alflorex priobiotic (which has been studied for IBS) on joining theibsnetwork.org. With the Linaclotide and Alflorex together I have had a considerable reduction in pain and a lot of the time I have no pain. I found that fodmaps made my pain worse (in addition to the stress), however I have been able to expand my diet to help with constipation and have even been eating prunes. Has the Linaclotide been offered to you? I have heard that Alflorex helps with bloating in some people and that enteric coated peppermint can also help with pain.

Runefinder61
Runefinder61
in reply to xjrs

Wow I've never heard of that medication . I'm.not even under the gastro dept! Off to Google .xxxx

xjrs
xjrs
in reply to Runefinder61

Note I found it didn't help with the constipation (though it does in some people) - for me the benefit has been in the pain relief. I am now trying to help my constipation with diet since I am able to eat more things. Note you can have a little rough ride when starting it - but this settles down after a few weeks. In some people it can initially give them diarrhea. In me, because it didn't help with the constipation I got overflow diarrhea (mucus and liquid stool escaping around the edges of impacted stool), so I paired it with Magnesium Oxide (an osmotic laxative) for a bit whilst I was trying to improve my diet

Also here's some of the research I did:

ncbi.nlm.nih.gov/pmc/articl...

the evidence suggests that clinical improvement in pain and bloating symptoms may not appear until after 4 weeks of treatment

pain and abdominal distension improved gradually, with partial relief after 4 weeks, while maximal effects were not observed until week 10.

reasonable to recommend that the first follow-up visit (or telephone interview) should take place 4 weeks after initiating the treatment and the second one after 3 months.

Thereafter, physicians should periodically assess the need for continued treatment according to the individual patient.....

Bowel habits, with the expectation that a satisfactory and adequate stool frequency should be achieved by the first follow-up visit (week 4).

Pain and abdominal distension would be expected to show some improvement by week 4; however, the peak analgesic effect would be expected from week 10 onwards, and therefore it would be better assessed at week 12.

If these clinical objectives have not been reached by week 12, drug withdrawal should be considered.

ncbi.nlm.nih.gov/pmc/articl...

In responders, linaclotide treatment must be maintained for 6–12 months. The possibility of stopping the treatment may be considered after taking

into consideration the time needed to achieve a therapeutic effect.

nice.org.uk/advice/esnm16/c...

guanylate cyclase-C receptor agonist (GCCA) that causes decreased visceral pain, increased intestinal fluid secretion and accelerated intestinal transit

linaclotide is metabolised locally in the gastrointestinal tract and is minimally detectable in plasma after therapeutic oral doses

ncbi.nlm.nih.gov/pmc/articl...

Increasing cGMP in the intestinal epithelium has also been shown by extensive preclinical studies to suppress intestinal carcinogenesis

and promote barrier function in the colon. These intriguing findings underscore the clinical potential of GC-C agonists for treating post-infectious IBS, ulcerative colitis, and for chemoprevention of colorectal cancer.

Runefinder61
Runefinder61
in reply to xjrs

Thank you so much for this. If it helps with bloating and pain that will do for me! I can't understand why I've never been offered this medication!! Fingers crossed they prescribe it . And I will be patient if they do . Thank you so much xxxx

xjrs
xjrs
in reply to Runefinder61

It's quite a new medication (better than that old stuff that was invented in the 1970s!). None of my local GPs had ever heard of it. I had read about it before I had my gastroenterlogy appointment, but I hadn't picked up on how good it might be for pain. It is very expensive, though, so they'll only give it to you on continuous prescription if it is working for you.

Runefinder61
Runefinder61
in reply to xjrs

I just hope they let me try it ! I'll keep you posted. X

xjrs
xjrs
in reply to Runefinder61

Please do. Good luck!

xjrs
xjrs
in reply to Runefinder61

Also don't forget about Alflorex probiotic. The Linaclotide reduced the pain significantly, but didn't eliminate it entirely. When I added in the Alflorex, that is when I experienced pain free days, so may be worth giving that a go if you need it after taking the Linaclotide.

Runefinder61
Runefinder61
in reply to xjrs

Already ordered it 😊 xxxx

xjrs
xjrs
in reply to Runefinder61

Haha. Nice one. Good luck :-) xx

Runefinder61
Runefinder61
in reply to xjrs

Thank you 😘😘😘

Moose45
Moose45
in reply to xjrs

Thanks for great information. I Linaclotide has never been offered to me.Visceral hypersensitivity has been mentioned in my notes, but I did not know what it was. Tried peppermint oil capsules but didn’t help me. Also been prescribed gabapentin but didn’t help and didn’t agree with me.

xjrs
xjrs
in reply to Moose45

You're welcome Moose45. I had a bad time on gabapentin too. I was still suffering side effects (stabbing pains in the stomach), three months after I stopped taking it. Thankfully that's all over now. Everyone is different and some people might get on with it. Good luck.

IBSNetwork
IBSNetworkAdministrator

Hi there,

Sorry to hear you're struggling. If you need help and support please get in touch theibsnetwork.org

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