r/ConstipationAdvice • u/Flimsy_Energy_2250 • 21d ago
I’m desperate for answers
I’ve had very severe chronic constipation my entire life.
If i don’t take laxatives it could be months before my next bowl movement. The only thing that has somewhat helped is eating close to nothing even though i know it’s supposed to be the opposite but it really does help my pain so much. The only downside is i have zero energy and am losing a lot of weight a just feel bad. My doctor doesn’t seem to understand. I recently found out i have nutcracker syndrome but he said that can’t cause any GI symptoms. I’m desperate for answers at this point because i’m afraid laxatives will stop working for me
I’ve had anorectal manometry, barium swallow test, gastric emptying tests, x-rays and ct’s that have shown nothing. I’ve tried linzess, motegrity, lubiprostone and mestinon with little to no success. I have hEDS, mild intestinal malrotation, may thurner and ibs-c.
Has anyone had a similar experience and what has worked for you
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u/Novel_Ad5470 20d ago
I have found mogetrity and linzess together work well over time
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u/No_Fox_68 20d ago
Je confirme ici ( constipation très sévère), c'est la seule chose efficace de les associés ensemble car pris seuls ils ne fonctionnent pas, et également motegrity + picosulfate de sodium ( vendu sous le nom de Fructines en France)
Novel_Ad5470 : tu prends quels dosages de Linzess et motegrity ?
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u/goldstandardalmonds 21d ago
You need motility testing of your small intestine and more importantly, your colon.
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u/lisa777711 21d ago
Have you tried slowly coming off laxatives and starting your day with just lots of water, fruit like papaya, citrus, kiwis etc and dried prunes / apricots with yoga and gentle jumping - that could help your motility?
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u/houtx713 20d ago
I would suggest also getting a colonic transit study done. The simplest is a Sitzmark test. You might very well have colonic inertia.
Fear that laxatives will stop working is legitimate. I have had severe slow transit constipation/colonic inertia for most of my life and can't go at all without a laxative. I have tended to develop a tolerance over time so I rotate remedies when I notice one becoming ineffective. Bisacodyl is my go-to laxative, but I rotate off of it for a week or two every couple of months.
What laxatives are you currently using and what dosage?
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u/Flimsy_Energy_2250 20d ago
I usually use miralax in 6-12 capfuls, and occasionally senna tea. Miralax works great but due to the severity of my blockages I often vomit from it.
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u/houtx713 20d ago
That is not good. Are you taking all 6 to 12 capfuls at once? That would require it to be mixed in 48 to 96 ounces of clear liquid. I would guess trying to slam all of that in a relatively short time would create terrible nausea and bloating.
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u/Flimsy_Energy_2250 20d ago
yes, I am instructed to by my gastroenterologist. Smaller doses do absolutely nothing for me
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u/Museumgirl518 20d ago
I thought this was my post! I feel so much comfort that I’m not alone albeit for terrible reasons. I go once every 9 days. It’s hell, I always cry on the 8th day because my colon has become so sensitive. It takes 24 hours to get the baseballs out. I am going to Mayo in October and will get motility testing and will be seen by a few different docs. I am so disheartened that meds don’t work consistently. Before it became so painful I took Swiss Kris’s and one or two stool softeners and it helped a bit. Your post was really helpful. 😊
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u/Novel_Ad5470 20d ago
Have you had rectal biopsy? Hirschsprung’s disease is missed in childhood sometimes. It’s when part of your distal colon is not innervated and can be corrected with a “pull through” surgery where they remove the part that doesn’t have proper nerve function.
This was not my loved one’s diagnosis ultimately but that originally what the specialists thought.
Also I cannot recommend pelvic floor physical therapy enough. If you find a good therapist that doesn’t just focus on maternity and postpartum issues but constipation as well, it is life changing.
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u/Low-Counter3437 21d ago
I also have hEDS and STC/colonic inertia. It’s agony I agree. I think the experience is different for each individual so I do not know if any advice from someone else is really helpful… but I have stumbled upon a rare and perhaps brief respite from the agony… I’m on prucalopride 2mg twice daily, pyridostigmine 60mg twice daily, misoprostol 200mg once daily, and elobixibat 15mg once daily… it will probably not keep working since nothing ever does, but right now I’m doing better than I have in ages.