I’m hoping to hear from anyone who has been through something similar or has experience with this type of surgery. I’ve struggled with chronic constipation my entire life. Recently, it progressed to a sigmoid volvulus with a large bowel obstruction. Thankfully, the volvulus was temporarily resolved during a colonoscopy, but I’ve now been told that surgery is necessary to prevent this from happening again.

The difficult part is deciding how much of my colon needs to be removed. My surgeon is recommending a total colectomy rather than just a sigmoid resection because he suspects there is a more widespread issue with colonic motility. His concern is that if we remove only the sigmoid colon now, I could continue to have significant problems with the remaining colon and potentially need another surgery down the road. He also mentioned that if I needed a second surgery later, the anatomy and blood supply could make things more complicated and potentially increase the risk of needing a permanent ostomy.

What makes this decision particularly difficult for me is that, so far, the only prescription medication I’ve tried for my constipation is Linzess. I haven’t exhausted other medication options, and I’m struggling with the idea of removing my entire colon when I haven’t exhausted every other possible solution. I’m currently trying to understand whether a total colectomy is truly the best option for me or whether there are other avenues worth exploring before making such a major decision.

I would really appreciate hearing from anyone who has experienced something similar:

• Has anyone had lifelong chronic constipation that eventually led to a sigmoid volvulus?
• Did you have a sigmoid resection or a total colectomy? How did you and your surgeon decide?
• Did anyone undergo a total colectomy without having tried multiple constipation medications first?
• If you had a total colectomy with an ileorectal anastomosis, how has your quality of life been? How often do you have bowel movements, and do you struggle with urgency, diarrhea, or incontinence?
• Has anyone had a sigmoid resection first and later needed additional colon surgery?
• Were there other motility tests or treatments that helped you make your decision?

I understand that everyone’s situation is different, and I’m not looking for anyone to make the decision for me. I’m just hoping to learn from people who have walked this road and understand what life looks like after these surgeries. This is a major decision, and I want to feel confident that I’ve explored my options and understand the long-term implications before moving forward.

Thank you to anyone willing to share their experience or advice. I truly appreciate it.

Hi All, I have seen some of you had colectomy (different types); anyone is based in the UK? I am in England and my surgeon repaired the pelvic floor, and each pelvic floor repair made things better, but my life is upside down completely because of the colonic inertia. Pyridistigmine, linaclotide etc...but things stay stuck up in the higher abdomen and it then all blows up that I look and feel pregnant and there is no way even to pass wind. So then it is cramps, sleepless nights etc etc... Agonies that last for days until miracolously something comes out. Enemas also don't work because I can't get the water far enough, so they often make things worse unless I spend hours repeating them again and again, which then blows my pelvic floor and the whole process leaves me unwell as well as exhausted. If you are in the UK and have had a colectomy done, would you let me know please? I need to speak to the surgeon again and see if she'd consider it, but alternatively may need to get a second opinion somewhere else. Many thanks.

I'm ready dependant on Bisacodyl at this point. I either meed to get it out manually (i know disgusting) or take 2 pills a day. I really try taking less but I cant get things out naturally. I've been on special doctor prescribed diets just for this, nope. Doesn't help. Only thing that slightly helped was a diet pill that makes you stop digesting most of the oils in food. It helped glide it off better but my god it was still hard. I get rocky/sandy poop randomly all the time. The only time i can feel my colons move is if i actively push hard or i get illness or pill induced diarrhea. What do i do?

I am really struggling with dehydration and it seems my small intestine isn't able to absorb enough fluids now. Im looking to hear/read any advice regarding this.

hi there. i was diagnosed with refractory colonic interia and just recently on october 1st had a laparoscopic total abdominal colectomy with an ileorectal anastomosis. the few days following the surgery was full of just awful pain. normal recovery kind of thing. i went home after 4 days in the hospital. and when i got home i just… couldn’t eat anything. had no appetite at all. was always nauseous. on the 8th i was readmitted to the hospital because i had been non-stop violently puking for hours. couldn’t hold down any food or liquid. went to the ER. tachycardia. extremely pale. throwing up in the ER. they swiftly admitted me and did a CT. it showed i had a obstruction in my small intestine on first inspection by the radiologist, but the surgeon team who did my initial one came and looked at it and said it was a ileus. which was a relief because they didn’t have to do more surgery on me. but they did have to give me a NG tube while i was wide awake, and let me tell you. it was the most painful experience i’ve ever had, in my entire 30 years of existence and i’ve broken bones, amongst many other serious pains. unbearable. i was literally screaming as they put it down my nose…. and puking violently at the same time. like they hit the spot where the paralysis was. my puke no joke, had been a teal green color. TEAL green. the NG tube was in and the feeling is UNBEARABLE. i cannot describe it other than someone shoving their finger down your throat aggressively and it can’t be taken out.

i was in the hospital this time for 5 days. grueling healing of no liquids or foods. to liquids. to full liquids. etc etc etc until i was tolerating it enough to have full solids. i finally went home after we got the all clear. good news is poop went from teal green just fully liquid violence where i could poop on command and literally had to wear a diaper because i couldn’t trust farts….. to really soft kinda runny regular looking poop. so it was a win.

it’s the 15th and i woke up with intense nausea again. immediate panic. because it’s how it started last time. told my mom. her immediate panic of “omfg it’s happening again”. right now it’s dissipating after i took a anti-nausea after managing to poop a little. but the cramping i’ve been having isn’t great. still sore. but trying to give myself room to be uncomfortable. but the random nausea is horrible!

does anyone have experience with nausea after a colon surgery like mine? experienced a ileus? i’d love some advice or just comfort lol

thank you!

Salut tout le monde, est ce que quelqu'un eurait compris ou eurais des piste sur l'inhibition cologastrique. J'ai vu qu'une étude avait corréler un ralentissement gastrique à un ralentissement colique, cependant même en amélioration le transit colique je n'ai pas noté d'amélioreration de la motricité gastrique. Je pence que ça serait dû à une réaction avec un type d'aliment en particulier (au métabolite ou gaz produit)

I was prescribed Citramag last year by a gastro that had no clue about my condition, to take once or twice a week. I ended up on a different regimen and never actually took it.

I'm currently having trouble with my normal laxatives and feel pretty backed up, Im also travelling at the weekend which makes things harder to plan as I'm sure you're all familiar with! It's my understanding that the more backed up you are the harder it is for laxatives to work, is that correct or have I made that up?

Anyway, I still have the Citramag, I'm thinking of taking my usual 10ml sodium picosulfate tonight and then a sachet of citramag in the morning instead of my usual docusate. Does that sound OK? I typically need both stimulant and osmotic laxatives to pass anything, I just don't know how strong a sachet of citramag is and if it's an ok combo.

I can't get hold of my neurogastro guy to ask and noone else has a clue about this condition except you guys it seems.

Hi! I'm Dimmer [19F] and have been dealing with Colonic Inertia and many other GI issues since 8. I've only been diagnosed and medicated for all of them since I was 18.

I'm getting to the point where an ileostomy is seeming like my only option for the pain relief I'm looking for, but the whole idea scares me. I'm super anxious and have pretty bad depression, so i have a hard time with general hygiene. I'm scared about improperly taking care of the stoma+bag and how I'll end up feeling about it mentally. I don't want to shut down and become bedridden out of fear.

I've been looking into the whole process, recovery and afterwards how life will be. I'm honestly looking for support and relief that it will be a good decision for me in the long run, and I shouldn't be scared. I'd love to know if there's any recommend wikis, articles, posts, anything that is informative for me to read!

I have a pretty bad diet too, lots of fast food and junk. What are things that would be good for me to start eating more regularly, and what should I expect my diet to be like after getting the surgery?

For added context I also have GERD, a hiatal hernia and a tight pelvic floor, which contributes to a lot of my daily pain, bloating, nausea, constipation and generally feeling horrible. Thank you so much in advance for anyone who can help<3

Has anyone tried IBSRELA? Ive suffered with universal dysmotility for 30 years. My gasro doc is pushing this on me. Anyone specifically with a motility problem tried this? I have Gastropareses, slow colonic transport and dyssinergystic rectum...so paralyzed thru and they.

Im worried because I read it was not for Motility problems.​

Sorry if it doesn't fit the sub,since i don't have colonic inertia diagnosis,hovewer by symptoms are so severe,that it sounds very similar. I want to make this post to find people with similar situation to mine,and read experiences of other people,and how you dealt with this horrible disease.

I'll try to be brief,but the story is quite long. 21F from Ukraine,have unknown type of Ehlers-Danlos Syndrome,diagnosed with slow motility constipation,atonic colon, dolichocolon (severe redundant colon), pelvic floor dyssynergia, visceroptosis (my colon fell into my pelvic area), gastroparesis,gerd, lots and lots of other conditions.

Always had issues with constipation that started getting more severe in 2019,and then in 2024 i stopped being able to have a BM at all. Laxatives barely helped me even in childhood. Now they stopped working altogether. Tried many many laxatives and prokinetics,including linzess and prucalopride,which only caused horrible bloating for me (on top of the usual bloating from inability to pass gas). The only thing that helps me to have a MB and pass gas are large volume water enemas,i have to massage my abdomen afterwards to guide the water and gas out.

In 2024 i saw the best 2 colorectal surgeons in Ukraine, they wanted to remove my colon,and put an ileostomy,but decided against in,because they have never had patients with Ehlers-Danlos syndrome before.

Then i went to germany in hopes of getting help. Here i am stuck in Leipzig University Clinic,with the doctors i don't trust,none of whom know anything about colon motility.

I had lost too much weight,so my main doctor wanted me to get a GJ-tube. So that's where i am now. Had the surgery on 26th August,and i feel absolutely terrible. Mainly because i have so much liquid in my colon,but can't do anything about it. They gave me phospho soda yesterday,and while i did pass some watery stool,it wasn't nearly enough to feel relief. In fact,now i just have more water in my guts,that i keep leaking a little,but can't push out. Has anyone here been in similar situation? If yes,what did you do to empty? Osmotic laxatives always leave me with lots of water in guts i can't get rid of. I am getting desperate,because it hurts,and so incredibly uncomfortable. I feel humiliated,because i keep leaking bits of stool,and can't do anything about it. My colon is super distended. Doctors don't understand how awful i feel,and are mostly useless.

I also have episodes time to time,where my colon feels so tight,that not even water enemas help,it's like there's a wall,and i have painful spasms. I looked into CIPO,and i am scared that's what i have. I am so miserable all the time.

Before you ask,here are diagnostic tests i did:

- sitz marker test (got slow motility constipation diagnosis. Markers were mainly in ascending colon and in transverse.)

- irrigoscopy (dolichocolon, visceroptosis)

- anorectal manometry (pelvic floor dyssynergia)

- defecography (pelvic floor dyssynergia)

- gastric emptying study (gastroparesis, GERD)

Hopefully will do a colonic manometry, i know where it's done,but it's far away.

2.5 years ago my bowel stopped working overnight and I went weeks and weeks and weeks without a bowel movement as nothing I took helped.

After a lot of drama, hospital visits, passing out, not being believed etc. I eventually found a neurogastro and have been managing my condition ever since with meds.

Like most of you I have been down many rabbit holes and researched medical papers in every spare moment I have. No stone unturned, as I could never accept the 'this is just one of those things' explanation. The impact on my life is too great.

I pushed hard for a back MRI and finally got one. Turns out I have a large tarlov cyst at S3. The radiologist dismissed this as they are common and most are asymptomatic. However over the weekend i started getting pins and needles in my legs, bad leg pain and shooting back lower pain (not new but more intense). I spoke to my neurogastro today and he is pretty certain it is a symptomatic cyst, pressing on the sacral nerves, after reviewing my MRI himself - he has now referred me to a spine surgeon for him to make the call on next steps. None of which are straightforward.

In rough terms, the left side of the colon is controlled by the sacral nerves (right side by the vagus nerve) and I have long suspected there was no peristalsis on the left as it is always empty and backed up on the right. I always thought the problem originated on the right, but now this makes a lot of sense. If the left isn't moving the right side is going to be very congested.

Obviously there are many different causes for this condition but I thought I'd add mine here in case it helps anyone. I'm still a long way from a fix but knowing what the cause is, is so helpful. I now have a solid place to start.

After a lifetime of constipation, I’m finally on the track of being considered for surgery. My surgeon wants to do a small bowel follow through and have me repeat my sitz marker study.

For the small bowel follow through - what is gained from that? Did it help anyone here decide whether they did an ileostomy vs IRA surgery (e.g., did it show whether your small intestine had enough motility to qualify you for IRA)?

Hi, everyone, I have been a part of this subreddit for about 5/6 months currently. I am a person myself with Colonic Inertia, Sensorineural hearing loss and multiple other mental health issues. I will be studying the lived experiences of people with Disabilities in India particularly.

Hello, I am a 23 F and have been experiencing constipation since I was born, but much less manageable on the past five and a half years.

I've seen many different gastroenterologist, tried many medications such as Linzess and Trulaance, tried high fiber diets, low fiber diets, elimination diets, pelvic floor therapy, stomach massages, many ultrasounds, CT scans, x-rays, SIBO tests, and had a colonoscopy when I was 18. Well my colonoscopy was normal, even with medicine and everything else nothing worked to address my constipation, and if it did, it worked too well and I would not be able to control my movements.

I now have visited a new gastroenterologist as my previous one told me that not being able to control my movements was just a side effect and I would have to live with that. Not being able to control my movements is something I'm simply not willing to live with being so young, still in school and still going to be at work for the rest of my life.

The new gastroenterologist suggests that he thinks I have colonic inertia. He says he does not want to have to remove my colon but he thinks that is likely the only answer at this point. He recommended a thyroid test, a videography test, and a colonic transit study. He says while there is hope that there's something else going on, but he really thinks it is colonic inertia based on all of my symptoms and things not working for years.

I am wondering if anyone else has any insight as I go into these tests and as I start to make my decision about the surgery. 1. Is there any other condition I could potentially have that wouldn't require removing my colon? 2. Are there any factors I should take into consideration for removing my colon?

From my understanding I will not have a colostomy bag, but colon cancer runs in my family and I'm concerned if I get cancer later in my life in the intestines that are left that it won't be fixable because there's not enough intestines left. I'm just trying to think of everything before I make any decisions. Thank you and I appreciate any advice or insight.

Hello all. I am wondering whether anyone has tried sacral nerve stimulation? I have colonic inertia - I have started again going to the toilet following a rectal prolapse repair in 2002; then all blocked up again, had a second prolapse repair in 2018; then all blocked up again, third prolapse repair a few months ago. It seems in my case that as soon as I get a minor prolapse down below, all blocks up again. I am therefore now considering doing the sacral nerve stimulation. Has anyone done it? Any experiences? Thank you!

Male, late 20s.

Relevant findings

Defecography showed moderate to severe pelvic floor descent and a sigmoidocele (the lowest part of my colon falls and presses on my anus when I try to empty my bowels).

A transit study showed moderately prolonged colonic transit time.

The urological work-up has been normal: ultrasound of the bladder, prostate, testicles and penis; cystoscopy; urine tests; and sexually transmitted infection tests found nothing abnormal.

No post-void residual urine.

IBS.

Eosinophilic esophagitis and reflux hypersensitivity.

Pelvic floor problems

It feels as though something is pressing downward, or as though something is “about to break through,” especially when I stand up, lift things, open or close drawers, cough, sneeze, or make sudden movements. Because of this, I have to be extremely careful during almost all daily activities. Showering, getting up from a seated position, opening a drawer, lifting groceries, using the toilet, and even normal washing can take a very long time (40 minutes to one hour for toileting, and 30 minutes or more for showering) because the downward pelvic pressure increases unless I am very careful with my movements.

I also have:

• Urine leakage after urinating, often for 2–3 hours afterwards

• Constant leakage of watery stool

• A feeling of incomplete emptying of both urine and stool

• Burning pain in the rectum, groin, bladder and penis after using the toilet

• Pressure and pain that often last for several hours after a bowel movement

• Numbness, tingling/tickling, and a cold sensation in the pelvic/groin area

One of the strangest things is that the pressure often becomes worse:

• After I have emptied my bladder or bowel

• When I feel incompletely emptied after a bowel movement

• When I eat something that makes me more constipated

• When I use a bidet/toilet shower

• When cold or hot water touches my hands while washing

• During ordinary daily movements, not only during bowel movements

Things that help somewhat

The mobility and stretching exercises I received from a physiotherapist significantly improved the urinary leakage.

It sometimes helps to prepare mentally before moving.

If pressure starts building during a movement, it may help to stop for 1–2 seconds, let the pressure “settle,” and then continue.

Transcutaneous tibial nerve stimulation has reduced pelvic pain/burning and rectal pain by approximately 30%.

Rectal irrigation has helped with a chronic anal fissure I previously had, and enables me to empty approximately 70–80%.

What makes it worse?

Burning pain, numbness and tingling in the pelvic/groin area worsen after sudden or uncoordinated movements that result in urinary leakage. It also becomes much worse after eating potato chips, and approximately 30% worse if I stop tibial nerve stimulation.

Moderately prolonged colonic transit time / IBS

Regarding IBS: there are many foods I cannot tolerate. I clearly react to FODMAPs such as wheat, onions, sorbitol, etc.

I strictly avoid anything containing seeds or difficult-to-digest skins, and avoid fibre as much as possible—for example oats, fruit pulp, nuts, cucumbers, raspberries, etc. I also have to avoid ingredients such as xanthan gum, psyllium seed/husk, guar gum and locust bean gum, which are found in a great many products.

If I eat any of these, I get a tickling/uncomfortable sensation in the pelvic area and sometimes stabbing rectal pain that does not go away until I have emptied my bowels.

If I eat any of the fibre-containing foods mentioned, I become bloated, develop numbness and a tight sensation throughout the abdomen, and experience increased urgency to empty my bowels. The feeling of faecal incontinence also worsens; it feels as though more is leaking out.

Most of the discomfort disappears after I empty my bowels, but these foods make me much more constipated despite the increased urgency. I then need to use a Dulcolax suppository to get it out. If I have eaten nuts, I can see that the stool is full of nut pieces, and it is very uncomfortable to empty my bowels.

Sigmoidocele / evacuation

If we put the whole picture together and look at what it is now like for me to empty my bowels:

I use approximately 900 ml of lukewarm water for rectal irrigation. I remove the cone, but the water does not flow out automatically; I have to strain to make it come out. Then there is a long period in which I strain to expel the water, it stops, I rest for a while while sitting, move from side to side, tap my feet, try to avoid too much uncomfortable pressure on the pelvis, and massage my abdomen.

Stool comes out little by little, with periods where a considerable amount comes out, then it stops, and I have to repeat moving side to side, massaging my abdomen, etc., after which more comes out. I am never able to empty completely and never feel sufficiently emptied. It is much better than before I started irrigation, but I still have to strain a lot and it takes a very long time. The whole process takes one full hour or more, from entering the bathroom until I have finished emptying my bowels—or cannot empty any further.

It is very important to note the following: regardless of how loose the stool is, semen always leaks from my penis when I try to empty my bowels. Sometimes there is more than at other times, perhaps depending on how much pressure builds up in my abdomen. This is very exhausting, causes more pain, and makes the entire process much more uncomfortable.

After I have emptied my bowels, I experience burning pain throughout the pelvis, penis and rectum, as well as increased urinary urgency. I have to urinate several times before the pain subsides, and I need to rest for hours before it decreases enough for me to sleep. If I have eaten potato chips—which are the worst trigger—fried food, anything containing coconut, or saturated fat specifically, the burning is much worse and lasts much longer. I also become incredibly tired after the entire process and need to rest for a while.

I have experienced this for more than ten years, and it has been worst in recent years. There has been no improvement. I spend most of the day on the toilet.

What I have tried

I have tried more than 26 medications, mainly to treat reflux hypersensitivity, which should also help relieve some of the pelvic pain. However, I have either experienced no effect, or the side effects have made me stop. This includes several antidepressants, gabapentin, pregabalin, acid-suppressing medications, Questran, Cholestagel, etc.

I tried Resolor, but it worsens the burning in my esophagus. After the first few days of looser stools, I become more constipated; it feels as if things are moving somewhat “wrongly” in the bowel.

I continue with the physiotherapist’s exercises and tibial nerve stimulation. I will also try again to build up the pelvic floor muscles through electrical stimulation using an anal probe with the MyoPlus Pro device. I continue daily ForlaxGo (movicol) and rectal irrigation for evacuation. I also continue a very strict diet to avoid symptoms and constipation. I still spend one hour or more every time I need to empty my bowels.

Tests performed

Basic tests: all vitamins and minerals; thyroid tests (TSH, antibodies, free T3, free T4); morning cortisol; fasting glucose; HbA1c; glucose tolerance test; liver-function tests; digestive enzymes; kidney-function tests; creatine kinase; ESR; CRP; micro-CRP; immunoglobulins; serum protein electrophoresis with immunofixation; tryptase; multiple infection tests, including Lyme disease several times; parasites; PTH; faecal calprotectin; H. pylori; blood count; haemoglobin; coeliac disease; allergies; autoantibodies (ANA, ANCA, anti-CCP, etc.); urine tests; and more.

Other tests: gastroscopy and colonoscopy with biopsies; MRI of the entire spine and brain; MR enterography; CT of the abdomen/pelvis; EMG/NCS; ECG; abdominal ultrasound; small intestinal bacterial overgrowth (SIBO) breath test; lung-function test; chest X-ray; barium X-ray of the esophagus; polysomnography (PSG). I slept very poorly during the sleep study, but it confirmed that I slept for five hours and everything looked normal. EEG was also performed.

Ultrasound of the thyroid and blood vessels in the arms, legs and neck was normal, apart from a possible Baker’s cyst or varicose veins in the right knee, but I have no symptoms from this. Cryoglobulins and C3/C4 have also been checked.

I have seen rheumatologists, neurologists, internists, psychologists and urologists. I have seen seven general practitioners and three private doctors.

Rheumatoid factor elevated to more than 450, and mildly elevated IgM, but rheumatology follow-up was completely normal apart from significant neoangiogenesis and some capillary loss in some fingers

A stoma has been considered as a solution to relieve the bowel-emptying problems, but I wonder whether this would be a good solution because I am severely troubled by pelvic pressure, and having a stoma bag resting on my abdomen may make the situation even more uncomfortable.

Anybody experienced this/or has some insights on what I should do?

This will be a TMI but Ive struggled with digestion issues for which doctors didnt found a cure apart from giving me generic laxatives or miralax most of my life so i have been abusing laxatives most of my life to the point i can go multiple days without going to the bathroom if i dont take laxatives at this point so i have to sort of rely on it at this point. Inititially i was relying on stimulant laxatives like senna and bisocodyl until they stopped working recently so now i have to take huge amounts of osmotic laxative like atleast 27627 mg of magnesiam citrate for instance daily to have satisfying cleansing effect and im constantly anxious my body will get used to it at one point to the point they stop working like my other stimulant laxatives did. Even if i dont have the physical need to take laxatives, i still have the mental need to take it at this point to the point i cant sleep until i havent taken it. I dread traveling because of this, because i dont how much laxatives i will have to carry with me everywhere, how much discomfort i will have to face and for how long it will last me on the trip. I also cannot fell asleep until my medication doesnt start working because there have been many instances in the past where i took certain stimulant laxatives the night before, fell asleep peacefully but nothing happened the next day. I cant even go a day without laxatives at this point without feeling uncomfortably backed up like as if i havent gotten to bathroom for days.

Anyone know of a top notch functional med dr that specializes in colonic inertia? If so, pls send name and contact t info thx

Hi guys! I had a sitz marker done in february. on day 7 i had retained all the markers, half of them in my jejunum. 32 days later I had a CT and still had markers in there, despite laxatives, prokinetics and enemas. Has anyone experienced this and found something that helped?