Treating IBS-C

Posted by aegis1952 @aegis1952, Aug 20, 2024

I would be very interested, and grateful, to hear from anybody who has experienced prolonged “adjustment symptoms” after taking a probiotic, who then, subsequently, experienced a significant, successful and permanent improvement in their IBS symptoms, or know of any bona fide clinical
studies relating to the duration of adjustment symptoms. The manufacturers of the myriad number of probiotics, regularly vaunt reviews from patients who claim significant changes to their IBS symptoms with their product without, apparently, citing clinical validation- , or long term post-marketing studies.

My IBS-C developed 8 years ago after a severe viral illness, against a background of very stressful employment, and an adverse lifestyle, both factors of which were the undoubted cause of significant gut microbiome dysbiosis. Colonoscopy revealed IBS confined to the sigmoid colon not reversed with IV Hyoscine, and was labelled as, severe, atypical IBS-C

I have suffered intractable symptoms of IBS-C for eight years, without any significant improvement from the array of allopathic treatments, including Amitriptyline and SSRI’s, and dietary manipulation, but I did experience an improvement in constipation with Alflorex, but not bloating or pain.
I started, some 18 weeks ago, a relatively new, novel probiotic, marketed in the UK as Ferrocalm. It’s a single strain of Streptococcus Thermophilus which, purportedly, has been engineered to utilise iron released into the gut during periods of stress when IBS relapses, which standard probiotics are unable to do, and, thus, compete with pathogenic bacteria. The suggestion is that explains why some IBS sufferers do not respond to those standard probiotics.
My adjustment symptoms, including those of the Jarisch-Herheimar type, began on day 1 , and still persist to date, without any features to suggest IBD or a GI neoplasm.

I have spoken to the clinical lead of the company which manufactures this product, but she was unable to furnish any post-marketing studies beyond 8 weeks.

I understand that the correction process can take up to two years to correct, depending on the severity of the dysbiosis, and other factors.

I remain quite sanguine that my IBS will improve significantly once the adjustment has taken place. Moreover, that I have been led to believe that microbiological analysis of stool samples are not helpful in determining the correction process.

Regards

Michael

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researchmaven | @researchmaven | Feb 25 3:51pm

In reply to @emoecurly "I’m a 68-year-old male and I’ve had IBSC for years although I didn’t know it till..." + (show)

@emoecurly

It is great that taking some meds/OTCs actually helped you for a while. Not everyone has such luck. I haven't read that you have tried changing your diet. Or certain foods may no longer move well in your gut and therefore cause IBS-C. What you eat and how much of what you eat, might be a factor for you now.

Or, could you have changed your diet in such a way to sabotage your meds/OTCs? For example, melatonin and CoQ10 turn my gut into concrete. Maybe you are taking something that triggers IBS-C for you.

I also got on top of my stress/anxiety with the help of a gut/CBT therapist. Seven weekly sessions and I learned/practiced how to calm down. It was so worth it. Being calmer is part of my IBS-C solution.

Hopefully reading posts on this site and doing your own web searches will give you some new things to try. An earlier post, detailing my health practice, is above.

mark1952 | @mark1952 | Feb 27 6:22pm

Hello, @emoecurly ,
I don't have much to add to what I already posted here above, but I will just give a quick update.

I suffer from IBS-C, chronic gastritis, redundant sigmoid, pelvic floor issues, hiatal hernia, etc.

I am several months into the following regimen. Haven't changed much.

I now take 2 peppermint gel capsules about 20 minutes before a meal, 2 mg Motegrity once daily with breakfast, 4 Senna (8.6) twice daily (morning and early evening), 1 Colace twice a day when I take the Senna, Visbiome probiotic one tablet twice a day (10 am and 8 pm), medium fiber diet, plus I drink a gulp of Kefir twice daily with Visbiome. After each meal, I take two deglycyrrhizinated licorice tablets. I eliminated the, Greek, plain, unsweetened yogurt.

After a rocky start with the Motegrity, now after several months, it seems to be working reliably. Constipation is much better. I usually have three productive bowel movements a day--first thing in the morning, late morning, mid-afternoon. I do sometimes have a diarrhea bowel movement, but I eat some binding food to correct that.

The costs for me of Motegrity and Visbiome are pretty outrageous. With my United Healthcare Medicare Advantage RX plan, the Motegrity is $1600 a year. There is a generic but it costs the same for me as the Motegrity brand. The Visbiome is OTC and costs about $720 a year. With all of this, I still fairly frequently have trapped gas and cramps from the diarrhea. But where I am now is miles ahead of where I was. I still occasionally experiment with reducing the Senna/Colace but I usually wind up with constipation again. I also sip a daily smoothie of spinach, soy milk, blueberries, strawberries, banana, flax seed, sometimes celery and dried cranberries. It definitely helps with my chronic gastritis.

As I am sure you know, the IBS-C makes your intestine nerve endings inflamed and highly sensitive. Hence the discomfort when I have stool or gas in my sigmoid colon. Massaging my buttocks around the rectal area helps, as does walking on a walking pad that I have here in the house. I try to think soothing thoughts with calming biofeedback. We all do what works for us. All I can say is I no longer contemplate suicide daily the way I used to. I am 74 and I feel I can live a few more years with the way things are now. Very best wishes to you!

emoecurly | @emoecurly | Mar 1 9:32am

My nearly frozen stomach is immune to linzess, stool softener. And us and most everything but someone suggested a new one Luba something down. I don’t know how to spell it, but it seems to be having some early effect. Tell me, am I destined for a colostomy someday? I have a hard time living with that mentally I mean. Now I’m embarrassed mostly, I’m embarrassed when I have to talk to the doctor about it. I’m embarrassed when I have to carry the supplies that I need on a plane trip. I never really expected to be here until the last help was received a few days ago, I was at my wits end and I didn’t really know if I could come home and go only again. The new meds seem to be helping right now so maybe that will continue. Thank you to everyone. I hope everyone’s well.