relentless IBS symptoms

[GKT1969]

From the moment I wake up to when I go to sleep I have severe IBS symptoms. In the morning I can have up to 10 large, loose, mud like bowel movements despite eating very little food the previous day. For the rest of the day I am cramping and bloating and pass small soft stools by pressing the down on the left side of my groin. Sometimes my bowel movements are like mucus strings, long and yellow. I eat very little and have lost half of my body weight and am painfully thin. Of course this brings a great deal of stress and deep depression and I am finding it very difficult to cope. All my Gastro visits, test and colonoscopy endoscopy are not showing much other than some inflammation. But my symptoms are such that I’m in constant pain and distress. I adopted the low Fodmap diet cut out lactose and gluten, do not drink or smoke but nothing seems to work. I would appreciate any advise or someone who has had similar symptoms who can provide some path forward for me

thank you

[Maureen1958]

Hi, this sounds like it could be BAM (Bile Acid Malabsorption). As you are in the US, I would suggest you ask your doctor for a bile acid sequestrant to see if it helps.

[Orchard33]

I am finding that taking a mixture of slippery elm with hot goats milk and manuka honey is easing my IBS symptoms very well. I take the mixture every other night now.

[sickandsore]

Hi have you seen a dietician at all? The inflammation must be caused by something I think I’d ask for a second opinion. It sounds like diverticulitis to me. I hope you find some answers soon x

[winfong]

Are you taking any meds?

[GKT1969]

I was taking verberzi but it didn’t help at all. I take supplements and have engaged now with a nutritionist so hopeful we can identify the underlying causes.

[Whitesugar]

Definitely get tested for, or have a trial of medication for Bile Acid Malabsorption. The common med is colestyramine and can be a miracle worker to stop the diarrhoea. Many people diagnosed with IBS Diarrhoea probably have this condition.

[GKT1969 in reply to Whitesugar]

is colestyramine prescription?

[Whitesugar in reply to GKT1969]

It is in the UK. As Maureen1958 says, it is a bile acid sequestrant. It helps to lower the concentration of bile salts reaching the large bowel and causing diarrhoea in people who have the malabsorption syndrome.

[SurfingSteve]

I had very symptoms similar to you a few years ago. Initially the dr's said it was IBS however once they detected inflammation from doing a colonoscopy, the diagnoses changed to IBD. In my case it was Crohn's as the inflammation and pain was in the small intestine but Ulcerative Colitis is the the other diagnosis depending upon the location of the inflammation. Once i had this diagnosis, they were able to treat my inflammation with medication and that really helped reduce the symptoms. I'm not a doctor and in your case there may be a reason why they have chosen IBS over IBD, but i would ask your doctor this, especially if the colonoscopy biopsy indicated inflammation.

[GKT1969]

thanks for the comments and feedback. I recently had a pill endoscopy where I swallow a camera and the results did not show any major problems but some inflammation. They did not change their diagnosis but I sure do feel enflamed and the volume and frequency of bowel movements does not correspond to what I eat which is close to nothing. I don’t know where it all comes from. I will speak to my doctor about BAM and IBD. Also, my nutritionist is helping with new stool and saliva tests. I would like to feel normal and with relief for one hour. That would be nice

[GKT1969]

here is the stool test profile which I hope can detect some of the conditions highlighted in your helpful comments. Let me know if this looks comprehensive

regeneruslabs.com/products/...

[Puffnstuff]

Thankyou, thankyou, thankyou for posting as I'm am having similar symtoms. I have days when I have bowel moment all day until there is nothing left im Just waiting for endoscopy and colonoscopy next weds and I'm sure it's worse thinking about it. But just to help you I have had this most of my life and k am 75 now so if you read most of the posts you will see many people with the same symtoms. So like me you probably do have IBS and it maybe a stress related thing. As I have blamed it on certain foods for years but it's seems to make no difference. It is very worrying I know but try to be positive and I hope you feel better soon.

[binks in reply to Puffnstuff]

I’m 64 and have had ibs since I was 30. The last few years have steadily got worse. It’s supposed to get easier as we get older but my experience is quite the opposite. It doesn’t seem to matter what I eat, it’s random and totally erratic. All I can say is that no day is symptom free. And some are unbearable xx

[Maureen1958 in reply to binks]

I'm in much the same situation as yourself binks. Mine started when I was about 27/28 and I am now 65. I always hoped I would figure out what I was doing wrong but I am, like you, no wiser what I am doing wrong. I really don't think mine is to do with food because I have it all the time even when I don't eat, I am lucky if I get about 4 hours a week without pain these days!

[binks in reply to Maureen1958]

I know exactly what that feels like. It wears you down. I have pelvic floor dysfunction which means I have to take a sachet of movicol every night. Otherwise I’d be totally bunged up. It’s developed in the last few years after a hysterectomy when I was 50. That’s just amplified my ibs problems. At the moment I’m getting lots of cramps and bloating. Having to go several times a day but I don’t have diarrhoea. Instead of feeling better after a BM my guts seem to gurgle and churn even more. I did see the last Rome ibs criteria has altered to say better or worse after a BM so I hang onto that when I worry! My husband tries to be sympathetic 🙄

[Maureen1958 in reply to binks]

My current second husband is very understanding, he has never known me without IBS, although it wasn't so bad when I was younger! My first husband, however, was probably the cause of my IBS!

[GKT1969]

I wonder how you cope #puffnstuff I am struggling and dread every day

[Puffnstuff in reply to GKT1969]

Thanks for reply, I am coping as best I can by keeping busy. But I am trying to be strong about going anywhere any distance I manage by getting up early so it gives me plenty of time to empty my bowel before I go out. Its painful often but at least I know I should be OK and not have to worry about finding a toilet