Colonic Inertia, doc wants to remove colon. WHAT?

Hello, I am new here and  just wanted to introduce myself. I am 38 years old with 4 kids. I have struggled with constipation my entire life. It has been severe at times. In 2005  I had a hysterectomy and pelvic prolapse repairs. Well, after that surgery I had an even more  difficult time having a bowel movement, it was like I  could pull the rectum up, but not push bm out. It is very hard to explain. Then in 2006 I had a sacral colpopexy because I still had a severe pelvic prolapse. Well, that was meant to help with bm's and it just made the problem worse. Now I struggle with the severe constipation and inability to have a normal bowel movement. I have  to use suppositories and other creative, too disgusting to talk about, measures to get the bowel movement out of my body. It is a miracle I am still sane. :) This  summer, I went to a colorectal doctor and he ran some different, interesting tests since my ct scan, ultrasound, and colonoscopy were all normal. Excuse if I don't spell all of these correct, but he performed an anal manometry test, defecogram, and sitz marker tests. It showed an extremely paralyzed colon. After 5 days the markers had hardly moved. The defecogram said that I did expell some  of the paste, but even after repeated pushing, majority of the paste would not come out....it also said some prolapse was evident and something about the small intestiines being too low???? I can't find the report to give you exact words. Well, when I went for the test results, he said I needed to have all of the large intestine removed and he would attatch the rectum to the small intestine. WHAT? I asked him, well, why can't I push the bm out without using acrobats? and he said it is because of my colonic inertia. Has anyone else had this problem? I take 2  doses of miralax a day and have to use suppositories to even get a bm started. I can't push it out even if I take the miralax. And enemas don't work...all they do is stay in or else just the water comes out. And most of the time I can't even push out the water normally. I also have  difficulty passing gas. 80% of the  time I can't pass gas. And then my stomach swells up like I am 6 months pregnant. I feel uncomfortable most of the time. I spend 3 to 6 hours a  day everyday on  the toilet. It rules my life. Does anyone know if the colon removal will cure all of these problems???? Will I be able to continue driving a school bus without a colon> Will I leak stool? I am so worried, but want to live more normally. But he said the surgery will give me diarrhea all the time. I don't want  that either. Then to top all of this off, my 13 y.o. daughter has the same thing. She has been unable  to have a bm and has been vomiting. I haven't taken  her to the er again because all  they do is give her tons of enemas without success and then send her home to  take miralax. How do you know if there is an obstruction? I am so tired of this colonic inertia and the doc said they don't even know what causes it. UGH Well,thanks and any advice would be appreciated...Thanks, TDR

Hey there

Yes its scary but a lot of people have colonic inertia and no dr can tell why so far.  Apparently it is common(?!) But of course no one talks about bowels in the real world do they - everything else but, it seems. 

Well you will be better off without your large bowel - i think diarrehoa is easier to manage then constipation any day - at least there is fibre and immodium one can take.  Yes lots of people have success but it is a personal thing of course and that nothing else is going on besides the colonic inertia has to be ruled out too.

cant believe at 38 they are just sorting you out. 

I have had problems for 10 years which is way long enough.  when i had scans and espcially an MRI last year it showed my sigmoid was twisted and stuck inbetwen the rectum and vagina - that could be why you feel an obstruction going on - as i did. before i had sigmoid colectomy last year i used about 24 glycerin suppositories and only 2-4 senna tablets a day and spent 4 hours a day morning and afternoon  in the loo - plus i had to press inside my back passage too with tissue (as i felt quite rightly that there was an obstruction).

anyway that is history and since that op i got rid of obstruction and then immediately got total colonic inertia - which i had anyway but the op exacerbated it.  so i cant wait to have the bloody thing removed - be for better or worse.  had enough now.

By the way it seems your daughter might take after you (seeing as you had constipation all your life?) so get her checked out prop (with full Gastro intestinal physiology tests) and dont let her suffer like you.

bless you and hope you get sorted soon.x

Hi. I feel your pain. At 46 I had lived with this all of my life. I had been on laxatives all of my life. When your colon doesn't move, the laxatives quit eventually. When I had gotten to the point that the Miralax, suppositories, etc. were being taken every day and the bowel movements were every 2 weeks I decided the time had come for a major decision. I weighed all of the pros and cons. My mom is a nurse and my dad is a doctor. I had seen every specialist that existed. I was on my fourth hernia from all of the pushing and needed surgery again. Everyone told me what I already knew, it wasn't going to get better. I took the final step and had my colon removed. They were able to save my rectum and removed my entire large intestine and connected my small intestine. I had no colostomy bag. The hospital stay was 12 days as they had to empty my very full colon. The incision goes from my naval to my pubic bone. The recovery was long. For the first 6 weeks I went to the bathroom an average of 6 times a day. I took medicine to help that and my doctor assured me it wouldn't last forever. He was right. After 8 weeks I was regulated to 2 times a day without pills. If I eat greasy food or sauces, etc. I go more often. I never eat before I go to bed, I wait at least 2 hours. Now it's in the morning and at night unless I cheat and eat the wrong foods (and you will discover what those are!). For the first few weeks you can't control it and need to remain near a bathroom, you will learn control and it gets better. Going from a bowel movement every 2 weeks to twice a day is unbelievable and the best thing I have ever done. NO regrets.

TO: ANGEL15

YOU SAID IN YOUR POST THAT YOUR HOSPITAL STAY WAS 12 DAYS BECAUSE THEY HAD TO EMPTY YOUR VERY FULL COLON. PLEASE EXPLAIN. MY CONSTIPATION IS SO BAD THAT I WILL NOT BE ABLE TO "CLEAN OUT" BEFORE THE SURGERY. I WILL HAVE TO HAVE IT DONE WITH MY COLON FILLED WITH FECAL MATTER. WAS THIS YOUR EXPERINCE?

hi march8,
i'm so sorry to read about your pain. how long ago did you have the starr? i too had the starr almost 2 yrs ago. it helped, but with colon inertia it's not enough cause the colon is SO slow that the stools don't even reach the rectum for at least 8-10 days, so i don't have spontenous bms at all but only with the help of lots of laxatives.

so you still have constipation? well, if your current dr doesn't cooporate with you, then go to another dr who'll listen to you.

i don't know which series of tests you've done and what exactly your simptoms are, but you should look till you find the right dr who'll take you seriously.

the pain in your pelvic may be due to scar tissue from the starr procedure. i had awful pain in my coccyx post starr. it wasn't right after, but it started a few mons later. something i nver experienced before. i had biofeedback and the PT did some manual treatment and the pain is gone ever since. i'm truly grateful for that.

i hope you can get answers as to what's causing all your problems and pain.

march,
yeah, i know the feeling of being dumped. i kinda felt that way too. my surgoen DID listened to my complaints, but labeled me with IBS, which i didn't like at all, cause you know, there's no cure for IBS and drs tell you to just live with it.. so i was determined to find a treatable prob for my simptoms.

anyway, my surgoen's determination of IBS was based on the fact that i had frequent bms, but determining it's IBS such short while after the starr is kinda irresponsible i'd say, cause after every recta/colon surgery there's an immediate reaction of frequent bms, but after a short while that slows down significantly. for me, after 2-3 mons things returned to the way they were before the starr, so i was back to square one.

well, after a series of tests (sigmoidoscopy, preanal u.s, manometry, defecography, barium enema, colonic transit time test) i was dx with colonic inertia. my colon simply barely function, if at all, so i'm planning to have my colon removed some time soon.

if it has been at least 6 mons since the starr, i highly recommend you go to a gastroenterologist and have a repeated defecography, and maybe some of the other tests i had - you have to know what goes on exactly that make you feel this way. do you feel an incomplete evacuation when you have a bm? does it happen every time you go? how frequent are your bms? do you go everyday?

i have no doubt that going to a gastro and doing these tests will give you the answers you need.

good luck to you and please keep me posted.

Hello, I'm attempting to finish a very quickly written reply from last evening as I wanted to sate the purpose of my joining on. Mainly, I have found with almost all gastro guys, if you still have your colon and the surgeries create worse or more problems, they don't much want to deal with you. Because I have now a major cyctocele that has increased because of the on-going constipation and rectocele and possibly because of the other injuries and entrapment issues, surgery is beginning to look necessary. However, the main problem is entrapment involving some nerves in the sacral area that are affecting or affected by a torqued pelvis, stool sitting in my rectosigmoid, and/or both. The pelvic floor dysfunction plays a role with the pushing, (as it relaxes), and there is compression from the small intestine above the prior rectocele surgery. I, too, like another member, have extrems gas and bloating, especially from eating the WRONG foods. Since I had the partial colectomy, it seems I'm more sensitive to foods(sugar and sugar alcohols, yeasts, alcohols, fermented foods, spicy foods etcc) and from a blood test for food intolerances, I found other intolerant foods. Avoiding them helps. Taking laxatives is unbearable because of the motility and GAS ISSUES WITH ADHESIONS.  What works best is fiber (triple fiber from whole foods), Vit C and especially taking plenty of CAL/MAG with zinc. I tale a charcoal formula when really bloaty with gas from GAIA . When desperate, I do babhy pear juice. I don't do well with DiARRHEA because it pulls on all the adhesions and causes pain. Sometimes it is so bad that my thighs hurt and I can hardly stand, so eliminating is the only relief. I also noticed that none of this severe constipation started until after the partial colectomy. Before that , things were tolerant.

I have IBS due to foods. I also found lots of Yeasts in stool that needed addressing and some not-so-great organisms thru a Great Smokies stool Test that are considered pathogens now, like Blastocyctis Hominis. But, the anti-biotics are really to harsh to handle as more yeasts grow from the antibiotic. 

Mainly, a good fiber, perfect diet avoiding sensitive foods, killing any pathogens, taking the minerals and any fish oils or other nutrients that help stool move thru are critical. And, without some enzymes like HCL and Pancreatin or plant enzymes to help digest just makes for more constipation. It ends that I do go every day, but not a big desirable elimination. Due to the state of my colon now, everything is uncomfortable or painful , but a total colectomy is not yet in the plans.  I may try organic psyllium from India at nite , as a friend said it did wonders for him.

So, if anyone has any ideas about the pudendal nerve thing or has gotten injections for that , please let me know. Also, anyone who has pain from stool pressing on something like scars or sacrum or nerve/ligaments, I would love to hear from you too. I'll try to address particular people I want to correspond with about a similiar issue, once I get familiar. I am a mature 60 yr old who had 3 children 30-25 yrs ago. Not everyone has similiar issues. Lastly, many people do better once they remove both gluten and especially dairy from their diet cause of the difficulty digesting these foods. You have to ask a nutritionist or alternative-type MD,. as the mainstream don't study much on these matters. good Luck everyone.

Rox, I started this post and still have not gotten any type of surgery. I am on my 3rd colorectal doctor and he is still in the "running tests" phase. This is fine by me because I don't want to have another surgery and it too fail as my hysterectomy and 2 pelvic prolapse repairs only made my issues worse.

You need to join us at total colectomy part 34....this is where most of us with colonic inertia post and there are several women who have already had their total colectomies who can give you some advice.

Rox, I am also finally having a total colectomy on june 10. I can not wait. this has been a very long process at least 10 years worth., but I finally found a really good GI doctor at the Borland Groover Clinic in florida. I had all the test and as I have always known my colon does not work very well, so I am just counting down the days for this surgery. I know that recovery will not be easy but I'm ready. My surgeon is going to put a NG TUBE for 2-3 days after surery so that I will not vomit since I have problems with anasthesia. I will also have a epidural for 3 days forr pain control then I will be given a pain pump for 3-4 days. Do you know what type of pain control you will be having?
Dianna