r/ColonicInertia

Hi, I have both gastroparesis and general intestinal dismotility which got so much worse lately. It’s really bad and I don’t know what to do because doctors are useless. Anyway, I cannot take the official markers test for several reasons but I heard that people track their transit time amateurishly either with corn or beetroot. I can’t have corn bc of my gastroparesis and I cannot have beetroot because it is high Fodmap (I have to follow a low fodmap diet) are there any other foods that are both gp friendly and low fodmap that can show up on the other side?

Bonjour

Je souffre d'inertie colique, on m'a fait le temps de transit des marqueurs à J+7, tous les laxatifs possibles prokinetiques et autres qui existent, alimentation sans résidu. J'ai un sibo a répétition depuis des années même après le traitement par antibiotiques plus alimentation sans fodmap et même regime élémentaire (bouillon, huile MCT, collagène) pendant deux mois. Je suis forcée de faire des lavements quotidiens eau parrafine à 2-2,5L, ils ne ressortent quasiment pas, je peux même dormir avec. Je n'évacue plus de gaz pour ainsi dire, aucune selle pour ainsi dire après les lavements (max l'équivalent d'un verre d'eau colorée). Je suis dans la souffrance H24, on a vu lors d'un scanner que j'ai réalisé aux urgences, un épaississement des voies biliaires. J'avais une dyssinergie anorectale qui a été vu à la manométrie ano-rectale, après des séances de khiné et test par sonde du khiné, c'est réglé apparemment. J'ai toujours le ventre gonflé et un gonflement omniprésent de l'intestin grêle et du caecum. Est ce qu'un gastro enterologue ou directement chirurgien peut accepter une ileostomie en attendant la manométrie colique qui n'est pas encore programmée mais qu'on m'envoie réaliser sachant que les délais sont de 9 mois, si mon dossier est accepté par le CH de Rouen (France). J'ai deja discuté avec plusieurs gastro et personne ne veut me proposer d'opération avant les résultats de la manometrie colique, je ne sais même pas quand elle aura lieu ni si elle aura lieu. Auriez vous des conseils? Ou peut être expériences voir noms de professionnels de santé qui seraient ouverts à cela en France ou même Belgique? Merci d'avance

Bonjour,

J'ai 29 ans, je souffre de constipation sévère depuis l'enfance. Je suis née grande prématurée et j'ai fait des subocclusions très jeune (3ans,8 ans etc..). Actuellement je ne peux plus du tout aller à la selle naturellement depuis deja 5 ans facile. Je suis sous lavements quotidien, les laxatifs de type purges et prokinetiques sont totalement inefficaces, tout s'entasse dans mon intestin grêle et rien ne parvient à passer dans le colon pour ainsi dire, si bien que mon corps réabsorbe l'eau et j'urine ce que j'ai avalé, idem pour les lavements externes, je ne parviens pas à les évacuer, de temps en temps un tout petit peu mais ça reste minime. Je dois manger sans résidus mais au final cela revient à me nourrir pour ainsi dire que de Peptamen et encore quand je n'ai pas de reflux gazeux + alimentaire/liquide. J'ai eu de nombreuses hospitalisations, même avec 6L de colopeg qu'on m'a fait prendre par sonde naso gastrique, je n'ai rien éliminé ... On m'envoit pour une manométrie colique mais j'ai du refaire le test des marqueurs sans laxatifs et sans lavements vu que l'hôpital n'avait pas fait correctement les choses ... Je ne sais pas à quoi m'attendre ni surtout quand je vais enfin être prise rapidement pour la manometrie du colon. Étant donné que j'attends dans la souffrance depuis des mois, en ayant de plus en plus de mal à vivre et m'alimenter ne serait ce qu'un petit peu. Savez vous si il existe des endroits qui proposent une manométrie colique dans le privé ? J'attends pour le CH de Rouen mais c'est très très long. On m'a bien diagnostiqué une inertie colique sévère mais aucun médecin ne souhaite me proposer d'intervention tant que la manométrie colique n'a pas ete réalisé, d'ailleurs je ne sais absolument pas comment cela se passe si il y a une impossibilité de vider complètement mon colon ? J'ai réalisé une coloscopie et le gastro a du aspirer mais il n'a pas pu aller que jusqu'à la moitié de mon transverse.

Merci d'avance

34F - diagnosed with dyssynergic defecation in my 20s after a few years of constipation and then an acute colonic obstruction…. underwent mesh rectopexy around 8 years ago with minimal improvement, subsequently diagnosed with colonic inertia and underwent laparoscopic colectomy with ileorectal anastomosis around 5 years ago, since this operation I have (as anticipated) very frequent liquid stools with urgency, but still struggle with incomplete evacuation and straining ++ , now have chronic perianal skin damage and fissures from acidic output and straining to pass the liquid stool…. I have the sensation that trapped gas is blocking my stool from passing and have to release the gas by doing various yoga poses in order to pass small amounts of stool at a time.. I am seeing a pelvic floor physio soon to have another go at biofeedback (did this years ago but was abandoned due to colonic inertia) but don’t even know how I can tolerate it with how painful my perianal area is and the likelihood that inserting something in my rectum as part of the therapy will cause fecal leakage… just seeking any advice, support, success stories…

Post

PREVIOUS POST:

https://www.reddit.com/r/ColonicInertia/s/U4M8ZPcqLl

CURRENT UPDATE:

Hello Everyone,

I originally made a post on this sub about my colonic inertia issues in August of last year, and a few people asked me to create a follow up post about my medical process, which I’m now making. I’ve tried and exhausted pretty much every possible avenue over the past 3-4 years since this began, and I’m finally having a total colectomy with ileorectal anastomisis at a large university hospital near me in May to hopefully rid myself of this condition once and for all. All four of my gastroenterologists I’ve been seeing have said that they think surgery would be the best treatment option for me now that everything else has been attempted. I’m quite excited for it considering how much colonic inertia has derailed my life and disabled me for so long, and I’m ready to leave this period of my life in the past. I know this procedure may come with new challenges that I haven’t experienced before, but enduring those is preferable to my current existence. I’ve heard countless people recount how surgery finally gave them some semblance of their normal life back, and I’m hoping I can have the same outcome. The possibility of no more pain, bloating, appetite loss, weight loss, starving, failed medications, etc is what gives me enthusiasm.

As for what I'm doing now, nothing really. Just waiting day to day for the surgery in a little over a month. I'm continuing to stretch daily to maintain my progress that I made in loosening my pelvic floor, but not much else. If anyone has any questions or feedback, feel free to ask.

TESTS I UNDERWENT FOR DIAGNOSIS:

•Sitzmarker Motility Test (July 2025): 72 out of 72 ring markers remaining after 7 days. Rings were spread out evenly throughout the entire large intestine, which my gastroenterologist suggested to be indicative of colonic inertia.

•Small Bowel Follow Through (August 2025): Completely normal. Barium drink reached colon after 90-120 minutes.

•Gastric Emptying Study (August 2025): Slightly slow, but otherwise normal.

•X-Ray Defecography (August 2025): Moderate to high retention of barium enema, which reflected pelvic floor tightness.

•Anorectal Manometry (October 2025): Scored poorly and failed balloon expulsion test. Began physical therapy immediately afterward. Doctor running the test noted that he thought my previous sitzmarker test indicated that my constipation was not being caused by my pelvic floor issues.

•Anorectal Manometry (February 2025): Second test to measure the efficacy of the biofeedback physical therapy I underwent for 4 months. Massive improvements in pelvic floor functionality, including passing the balloon expulsion test. Constipation remained unchanged, unfortunately.

•Countless other blood and genetic tests that revealed no answers, which aren’t worth mentioning.

MEDICATIONS/SUPPLEMENTS ATTEMPTED AND FAILED:

•Prucalopride

•Linzess

•Amitiza

•Trulance

•Miralax

•Sennosides

•Bisocodyl

•Mineral Oil

•Magnesium Oxide

•Soluble and Insoluble Fiber

OTHER NOTABLE TREATMENTS THAT FAILED:

•Psychological Counseling

•Meditation Techniques

•Fecal Transplant

•Biofeedback/Physical Therapy

•Expensive integrative medicine doctors who came to the same conclusion that surgery was the best option

I think I have colonic inertia. I’ve been on motility meds for 7 years, had an eating disorder 12 years ago, and it’s generally recognized by the GI’s I’ve seen that I have slow transit. I have done the gastric emptying study that came back normal and the anarectal motility which came back slightly weak, though I think that’s mostly because I’m terrified of invasive procedures and didn’t give it my all out of fear. Or maybe because my movements have been liquid for years because of meds. But anything else hasn’t been suggested where I live in the Midwest US. I’ve been to a general GI, a SIBO specialist who prescribed the gastric emptying study, a motility clinic that suggested I do the anarectal motility test, and yesterday, a gastro neurologist who said I’m doing everything right and put me back on IBSrella which I expressed doesn’t work for me.

I’m at wits end and my quality of life is bad. Stimulant laxatives on top of linzess and Motegrity, though Motegrity’s new generic was giving me crazy side effects and I had to go off, suppositories and enemas which I must have done too much of because they have stopped working.. I’ve tried miralax, milk of magnesia, magnesium citrate, magnaium supplements, mestinon, motility activatior, erythromycin (for SIBO,) and more. I drink coffee, eat kiwis, prunes, MCT oil, aloe juice, quit my job, live at home with my parents, and I’m still getting worse by the week. I feel like my docs either underestimate how bad it is even though I’ve explained, and even burst into tears in the office, or don’t even know about CI and the tests to find it. How do I ask for these tests in a way they don’t shut down? I feel like any time I ask for something it’s a no, and I’m dismissed as doing fine when I’m absolutely not. I don’t want to get out of bed, I don’t want to put on clothes, I stopped seeing friends, I have nothing left for my husband. I’m so lucky. I have support financially, I have a good family.. but I’m running out of ability to appreciate it when I’m too sick to enjoy anything.

I’m worried that where I live they just don’t have doctors that know about any of this but I even spent 5k on a trip to the Florida Mayo Clinic and was sent to a psychologist with no other testing. He took one look at “past of anorexia” and decided it must still be that, even though I said I’d been recovered for a decade and just want to be able to eat again. He didn’t let me even finish my sentences. I feel like I’m going crazy and that no one cares enough to help me. I’m sure you guys know the struggle. How easy it is to say someone’s doing fine when they don’t live our life. But any tips from anyone else who doesn’t live in a major city would be appreciated. I don’t think I have the money to risk out of state doctors again if I can’t be sure they will do something more than leave me at the hotel for the week I booked for tests. I am running out of funds, hope, energy, and support.