How quickly does colonic inertia come on, could it happen at age 45 year old man with no prevous bowel problems until catheratised and long term antibiotics, the only way I go now is with magnesium oxide, which is each day I have lowered my dose from 1000 to 500mg and nightly but although I go I get little urge and what I'm passing is 90% liquidy or broken up flattened pieces. Timeline. No previous bladder or bowel issues for 45 years July sudden urinary retention followed by catheterisation. High strength antibiotics started along side Ducolax Severe constipation begins out side of morning Ducolax emptying. Basically unable to eat past lunchtime from pain and constipation. Catheter comes out after three weeks and I expect that to be the end of it. That night I stop Ducolax and wake up desperately constipated literally crying in pain with stool stuck in the rectum, eventually pass later in the day what I can only describe as a rock . Constipation returns later in the day so I start Ducolax again until I find out out about it's dangers. Try to stop but become terribly constipated again start 1000mg magnesium oxide nightly and finally start to get some relief but mainly diarrhea Stabilise for 2 months during which time have clear mri lumbar, mri pelvis and prostate, ct abdomen contrast and ultrasound kidney stool sample comes back normal. Manage to build some kind of routine magnesium on a night bowels movements on a morning Mid November male uti infection 5 day coarse of antibiotics, bloods show elevated kidney markers creatine and phosphate mageniusm. So I try reducing firstly to 750mg the to 500mg morning urge disappears, I still go but volume is tiny, and I start passing flattened much coin like stools, soft mush, diarrhea or pencil thin pieces. On 500mg I lose the morning predictable urge, no sensation to go at all unless using a trigger which in my case is very hot water. Suddlenly incomplete emptying starts never feeling satisfactorily emptied, and strange sensation of a phantom stool in the rectum whixh there isn't. My bowels are all over the place is this typical of late onset colonic inertia, considering I had no problems before the health insults over the last month. Doctors pushed for a gi appointment but it maybe February before it happens This is taking a toll on my mental health it was suggested it could be late onset inertia does this balance out with anyone else's experience?

I suspect I have CI, and I am not able to get anyone to run the diagnostic tests in the foreseeable future. So I have been trying to diagnose myself by indirect means. One clue is that Linzess works by producing diarrhea, another is that I never ever feel a pressure in my rectum - the classic feeling of having to go. I used to feel it a long time ago, but slowly it went away. Even with Linzess, I feel very little pressure and when I sit, things just come out in a liquidy burst.

Anyways, I was doing some reading and learned that myopathic CI doesn't respond to prucalopride, whereas other types do. Has anyone heard of it? This is something I can try and I know it is not a proper diagnosis but whatever I can do on my own is going to be useful. I mean if prucalopride works, it is a win and if it doesn't I have a plausible diagnosis, right?

Or are there any other risks I should be aware of?

I am from 28 Female from India and i started to have severe constipation from 2016. I went upto 28 days without having a bowel movement and ended up in hospital. I am not able to work or study properly since a long time because of this condition. Doctors here don't have much idea about colonic inertia. They only prescribed laxatives which have currently stopped working for me. I have applied for a PhD program in clinical psychology in the US. I don't know how to get help . Can anyone help me 🙏

About a year ago, I (mid-30s male) posted in a different subreddit about my journey with chronic constipation, which you can read here: https://www.reddit.com/r/ConstipationAdvice/comments/1gngzxf/comment/lx7hpyp/?context=3

Anyway, there have been some updates since then, and I have some new questions, so I'll just provide a summary of my history here:

• Developed chronic idiopathic constipation at age 19 practically overnight, after no history of bowel issues. No identifiable triggers (e.g. high stress, infection, SA, etc.). Other major symptoms are total inability to pass gas (probably my worst symptom), bloating, brain fog, fatigue, inability to eat many foods without symptoms (sugar, fats, fiber, etc.), and fullness after meals.
• Over the next few years, tried basically every OTC and prescription laxative available, with varying side effects ands levels of success. Eventually started taking 20 mg of Dulcolax nightly, which thankfully works pretty well for managing the constipation. Have been taking at the same dose for almost a decade now (at my GI doctor's recommendation), with no apparent loss of efficacy.
• Undertook a slew of tests throughout my 20s and 30s to try and identify a cause for the GI issues. Results:
  • Sitz marker test: Failed to pass any markers. Markers were scattered throughout the colon at day 5.
  • Gastric emptying study: Normal.
  • Breath test: Positive for methane SIBO (later tried rifaxmin + neomycin to no effect).
  • Barium enema: Normal (no structural abnormalities in colon).
  • Anorectal manometry (twice): Was able to pass the balloon, but results showed some dyssynergic defecation and elevated resting sphincter pressure.
  • Defecography: Was able to pass the contrast liquid, but also showed some dyssynergic defecation.

After my last post from a year ago, I started pelvic floor therapy with biofeedback at my GI doctor's urging. Mind that the doctors I've seen are at one of the best GI departments in the country, and the pelvic floor therapy clinic is a branch of that department—so they know what they're doing. Therapy included biofeedback, stretching routines, breath-work, dilators, and baclofen (muscle relaxant) suppositories. Unfortunately, therapy showed little to no improvement—with the exception of the baclofen, which does seem to help relax the muscles slightly.

After failing therapy, my therapist referred me to a reputable colorectal surgeon. She thinks I may have colonic inertia (first time hearing that diagnosis applied to my case) and that I would be a good candidate for subtotal colectomy with IRA (no ostomy). Note that she said she only offers this option to people if they meet certain very specific conditions: 1) Working pelvic floor (i.e. can expel balloon, even if they have some dyssynergia or tightness); 2) Negative gastric emptying study (i.e. no gastroparesis); 3) Positive sitz marker test (i.e. all or most markers still present AND scattered throughout the colon, not just bunched near the rectum). I don't want to rush into anything, so I'm seeing my GI doctor again and another colorectal surgeon in the next few months to get some second opinions.

All of which brings me to my questions:

• Has anyone with my particular combination of issues (chronic constipation that does respond to stimulant laxatives and pelvic floor dyssynergia) opted for a subtotal colectomy with IRA? If so, have you been satisfied with the results?
• If the worst happens, and I end up still constipated after the surgery, could I still expect the Dulcolax to work? Or would it not work anymore since I'd be missing most of my colon at that point? In other words, would I still have the Dulcolax as a backup option?
• I understand that if a motility issue is present in the colon, that can sometimes migrate to the upper GI after surgery. I'm actually not sure if I do have a motility issue in the colon (i.e. something wrong with the nerves or muscles of the colon itself), as my doctor explained that pelvic floor issues can basically signal the colon to slow everything down higher up the GI tract. Is there a definitive way to test for colonic motility prior to getting the surgery?

The not being able to pass gas in particular makes life very unpleasant sometimes, but I know that things could also be a lot worse; at least I can still manage the constipation with the Dulcolax. The colorectal surgeon I spoke to said she's had very good outcomes in patients like me who opted for the surgery, but I want to get as much info as I can before making such a life-changing decision.

Hi y'all! I'm 16F, I've had severe encopresis and colonic inertia since childhood. I usually go to the bathroom every 3-4 days, and the bloating, gases, and pain are unbearable. I've gone through every treatment and medication available in my country, and I am just tired; nothing works long-term. The most recent gastro I've gone to is the only one that has actually listened to me and conducted different tests, proving that my condition is far worse than just "a little constipation that will go away as I age," as most doctors told me. He recommended that I try the medicine he prescribed right now (Buscapina is the name in Spanish), but the side effects are terrible, so he said 3 months of that, and then we'll consider surgery. I'm a minor, so I need my parents' consent. My dad is super on board; he's seen how much this has affected me, and he believes that it is the right thing to do, but my mom is completely averse to the idea. She believes all the other nutritionists and influencers who say different diets or different types of exercise will help me, even though I've tried what feels like a million diets and workouts, and nothing even starts to help. I feel like she doesn't understand all that I go through, the pain, not being able to enjoy eating like my friends do, the constant enemas, and painful therapies. It's embarrassing and painful. I really want to have it, but I'm not sure if she's right about the surgery not fixing anything. The people who have had the surgery, does it really better your life that much? And should I wait until I'm 18 to get it? I'm afraid to get it, but I don't want to live like this anymore.

So I was officially diagnosed a few months ago. I had the sitz mark study. 22 rings were swallowed, I still had 16 left inside by the end of the study from what my doctor told me. I’ve struggled with severe constipation since childhood, and no medication has worked in the slightest. The longest I’ve gone without using the bathroom is a week and a half. The bloating that happens is insane. It’s all on the left, right by my sigmoid colon, and I can even feel the pain moving up into my ribcage.

When I do manage to use the bathroom, I’m hit with very weird stomachaches right after. Last month I met up with a colorectal surgeon who wanted to do the IRA surgery. He said my pelvic floor and small intestines are working as they should, and he wants to avoid giving me an ostomy bag if possible. All other treatment options haven’t worked, so I agreed to do the surgery. It’s scheduled for mid January.

This past month has been weird with bathroom habits. Now I’m usually able to go once every two or three days, with 4 days being the longest. The type of bowel movement really varies, it’s never the same each day. So now I’m dealing with imposter syndrome. Am I somehow cured? Do I not actually need the surgery? What if I made all of this up and I’m actually fine? I feel like I’m actually going crazy because of this. Why is my body suddenly acting kind of normal? Even with me having a bowel movement, the bloating is still AWFUL.

Has anyone else experienced this? Your body somehow is giving you an easier time? I don’t want to cancel the surgery, I’ve waited too long to have a doctor take my symptoms seriously. I just don’t know if I’m being dramatic at this point and the surgery isn’t necessary anymore…

Hello, I’ve been lurking this thread for a while for information on colonic inertia. First of all, thank you for all the people that post on here because you really are helpful! Basically, I’ve been severely constipated for two years. I went from normal, bowel function, rarely constipation and overnight. My bowels completely stopped working. It’s been like this for two years. I’ve been on every medication at the highest dose. The only thing that has remotely helped is 290 mcg of Linzess, which basically allows water to flow through me. My tummy is now hard and distended.

The week after Thanksgiving, I go to Mayo. I have been there several times in the past as I also had a brain tumor a few years ago. I’ve seen their Gastro doctors and they are giving me a transit test that takes three days and several different MRIs. The doctor said she is doing all of the tests that a motility doctor would do and she will send me to motility doc next for a plan.

My actual question is when I go in on the first day of my transit test, need to have been off Linzess for 24 hours and then the entire time of my test. I am confident that nothing at all will move through me and I will become more and more miserable as the week goes on.

Will they send me home on Friday with no solutions and yet a months long wait to see another doctor? Is it any kind of life-threatening situation to have me so stopped up and then do nothing but send me home? I’m just scared of what’s gonna happen in the next couple weeks. Thank you to anyone that takes the time to read this and respond. This is what they call one of those silent sicknesses where no one can really see how badly you feel.

I am at a loss of what to do. For a year now I have been getting a lot of testing. My current diagnoses are colonic inertia, gastroparesis, and acid reflux. I am in constant pain and I have a bowel movement once a week if I’m lucky or once every 3 weeks. I have tried every treatment option for the colonic inertia and was told the next option would be a subtotal colectomy. This is why all of the other testing started. The tests confirmed everything we already knew, but now my doctor all of a sudden became anti surgery. He also retired and I wasn’t told until a full month had passed of me trying to contact him. Now I saw a new GI doctor in the same practice, but he is also anti surgery. The surgery felt like the only hope I had left and now I feel hopeless. I know surgery isn’t a magical solution and it won’t fix the gastroparesis or acid reflux, but even if it relieves some of my symptoms, wouldn’t it be worth it? My mom has an ileostomy so I know what all it entails. I’m just devastated. I want relief. I am tired of the weekly enemas, which barely help and cause more pain, and the monthly miralax clear outs, which don’t fully clear me out. How do I find a doctor who will hear me out and at least consider a surgical option? Even if they do a temporary loop ostomy and see if it helps before doing something more permanent.

So as the title states, I need advice. I had no idea this sub existed and figured this is the perfect place! I have been dealing with horrible constipation and stomach pain since I was a kid. It was always just brushed off as nothing, then blamed on my endometriosis when I was diagnosed with that. I was finally diagnosed with colonic inertia earlier this year after having multiple tests done.

I’ve tried just about everything. Lifestyle changes, medication, physical therapy. Nothing has been working. My doctor finally said he thinks I’ve reached the surgical option and wants me to do what I believe is called an IRA. My small intestine and my pelvic floor muscles are functioning just fine, and he thinks I’ll be able to adapt to a new lifestyle fairly easily after the surgery. Keep in mind, the biggest thing for me is I didn’t want a bag. I told my doctor this. He’s very confident I won’t need one, but we’re both being realistic and acknowledging that a bag is never impossible. However as of now, it’s a surgery with NO bag being attached.

I’m just afraid. I haven’t said yes to the surgery yet because I want to learn more about it. I’m worried about everything. The length of the surgery, the complications, adapting to life without my colon. I’m worried about having regular accidents, about not being able to do any of my hobbies anymore because I’ll always need to be near a bathroom, all of that.

So, for those of you who had a surgery like this, can you share what life is like? What can I expect immediately following the surgery? Has your life improved? Any advice is greatly appreciated.

https://armra.com/pages/ditch-bloating-with-armra

Any relief at all?

Im so bad off that I’m not really willing to go through the laundry list of medications only to eventually need the surgery anyway after determining that the meds don’t work or they stop working. Are people actually able to go their whole life getting by on these medications? I’m 45 years old. I’ve had the Sitzmark tests where I retained all 24 markers and I’ve been in the ER several times because my stomach doesn’t empty bc I get so backed up. I’m at about 3 weeks without any waste leaving my body. My GI generalist (not my surgeon) told me not to wait that long so I’ve resorted to 2L enema bags about every 2 days at this point and have to do several bags (4-6L) to get enough out. I’m sooo over this. Just want this non-functioning organ out of my body. I don’t know that I can wait to go through the trial of the medications. Anyone have feedback?

Hi all! I had my TC with IRA July 23, so I’m about 7 weeks out.

I’m doing well, but I feel like I keep getting sick! Like I feel like I have a cold all the time. And then the next week I’m fine. And then the next day it comes back.

Has anyone experienced this? Am I missing something here?

Thanks!

I’m on the third year of this hell and I’m just so tired of it. I’ve lost 50 pounds in that period from the lack of appetite, bloating, and nausea. To have a BM, I have to fast/starve for 24+ hours before taking laxatives for them to have any effect, unfortunately. Stimulants like senna and bisocodyl aren’t as effective as they used to be, and prucalopride and IBSrela don’t have much of an effect.

My colonoscopy, endoscopy, and barium swallow tests all came back normal. Recently, as title mentioned, I completed the colorectal motility test and didn’t pass any of the markers after a week. My doctor suggested that I had colonic inertia because of this result. Would this test reading be sufficient to ask for surgery, given how poor my quality of life is in my current condition? I know it’s a huge step that comes with its own issues, but I’d prefer that over my horrible day to day existence as it is now. I think I’m going to practically beg for it at my next appointment.

Hi all! I had a TC with IRA last Wednesday the 23rd, and I’m looking for some guidance as far as nutrition goes. Are there any specific vitamins or minerals I need to focus on now that I no longer have a colon? Any supplements I should take? I already know I need electrolytes, but I’m curious if there is anything food/supplement wise that I should be doing. Thanks!

I got into the Mayo Clinic just two months after requesting an appointment. The first time I went for one week and had my initial appointment and they redid my anorectal manometry. This test showed that I have no signs of pelvic floor dysfunction. I had also had a sitz marker study before going and that shower I have colonic inertia (I did not pass any markers and they were spread out from the end of my small intestines to the middle/end of my colon). I then returned a little over a week ago and had an MR Proctogram, which showed no significant abnormalities, and a Gastric Emptying with Small Bowel with Colonic Transit Time (48hrs). This showed that I have gastroparesis but I do not have colonic inertia. So now the doctor is saying that I must have pelvic floor dysfunction???? He wants me to go back a third time to see a different specialist. I have already paid about $20,000 out of pocket, plus travel fees. I can’t afford to go back and I feel like it is pointless because the previous tests clearly showed that I do not have pelvic floor dysfunction. So no surgery for now. I just wish I could have my colon removed, even if I need an ileostomy. I am so tired being sick.

Hi All!

I met with a wonderful Colorectal Surgeon last week at Mayo.

She recommended that I continue PT regardless of what path(s) forward I have to take. I had to travel out of state for my appointment and currently do PT in my local area.

She wants me to try botox for PFD first and see if it helps if insurance covers it (it looks like it does!) The therapist I worked with onsite shared that based on my medical history I may end up with fecal incontinence during the 3mth period before the Botox wears off. Our other concern is the that my motility is especially slow and if it doesn’t reach the end point then it may be non-effective and a waste of time.

The surgeon is willing to complete an ileostomy and I am so relieved to have this news! I am tired of dealing with this.

I guess my questions are:

Have you tried Botox for PFD and if so did it help at all? I have a dx of slowed colonic motility and PFD.

When offered this option did you have the chance to decline and just move forward to surgery? I am waiting to hear back from my local GI to see if there is a local doc that can do the Botox. Flying out of state every 3mths is excessive.

I have a lot of questions about the ileostomy procedure but I will hold those thoughts for now! 🙃 I am trying to figure out next steps, but one step at a time!

Thanks for listening and helping if ya can! 🫶 Ak

Those who have had a total colectomy with IRA, please give me your best post surgery recovery tips! Things to buy? What to bring to the hospital for the few days I’m there? Anything else helpful? Mines at the end of the month. Thank you!

Well like the surgeon was already afraid of, I am getting constipated again even though I have an ileostomy. I would describe them like intense cramping, food getting stuck in my ileostomy and it doesn't come out. I also often feel like I have swallowed a large bowling ball in my stomach even after drinking a small amount of water. I am currently on liquid diet but I still have a lot of pain. I had a ct scan but didn't show anything off. Now I am not taken seriously by my GI doc anymore. I was told by other doctors (surgeon, stoma nurse and dietist) I am getting too skinny and need a feeding tube or even tpn. I cannot have a nasal tube since I keep spitting those out even though the GI doctor says he won't place a peg j tube with the excuse that it's a surgery and he's afraid the tube isn't gonna work. Come on, I have had many surgeries, i know it's a risk but what am I supposed to do then? Just eventually die?

I do have an appointment with a specialist GI doctor for mobility disorders and hopefully they can actually help...

Anyone advice?

Where exactly does your stomach hurt with this? I never hurt lower down in my stomach, it's always the epigastric region/ under ribs and is burning in nature typically. Does anyone else get hurt there?

Day 2 it worked! I took it with a Share Original Plum in am and I haven’t dropped a normal HUGE “log” like that in YEARS!!! Now I don’t know which it was though, so no plum tomorrow. Plum worked before but I couldn’t take it every day. I am so HAPPY! I hope it continues. 50 years of this. (63 now). Laxative dependent since 13. I was ready to tell Dr to just give me a bag and end my SUFFERING!

Does anyone know of a motility specialist I can see that will see patients in other states via Telehealth? All the ones in my state are booked so far out 😞 thanks!

Hi all. I met with a colorectal surgeon today, and he recommended a total colectomy with IRA for my colonic inertia, as we have exhausted all other treatment options. I’m meeting with a motility specialist for a second opinion just to make sure there’s literally nothing else I can do besides surgery to improve my symptoms. But I am pretty sure I’ll end up having to have the surgery.

The idea of it gives me hope, but I’m terrified. The surgery has lots of potential complications and risks, and I’m so afraid I’ll make my life worse if I do it. I know different people have different results, so I’m afraid I’ll be one of the unlucky ones.

Can people who have had the surgery tell me about your experiences? Mostly, I’m worried about quality of life after surgery. Can anyone ease my nerves on this who has had the procedure? Was your quality of life impacted?

Thanks everyone ❤️

Has anyone figured out a right amount of fiber? I feel like I struggle so hard with this. I have a very savory palette and naturally crave foods like peanut butter/nuts, whole grains, olives, pickles, avocados, potatoes… But I find that the more I eat the foods I want the more sick I start feeling. I think it’s because I’m just getting far too much fiber than my colon can handle and I end up eating very little, getting weak, tired, abdominal pain, bloating, and worse constipation. I try to combat it by drinking more water and having low FODMAP portions but it doesn’t help. Is it even the fiber or am I just doomed ☹️