Colonic Inertia, doc wants to remove colon. WHAT?

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answers4me2
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Date Joined Dec 2008
Total Posts : 1321
   Posted 12/28/2008 8:01 PM (GMT -6)   
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

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 12/29/2008 2:28 AM (GMT -6)   

hi TDR   :-) ,

it's so nice to meet you. i'm so sorry to read about all the troubles you've been through and still do. sounds like you got it bad   sad .
i'm 35 yrs. old and i have colonic inertia as well. i've been having it for 15 yrs. now, and now i'm on my way for a solution (hopefully) - a colectomy. finally, after 15 yrs. i found drs. that listen to me and willing to help me and i'm so thankful for that.

as to your storry, it sounds to me like you not only have colonic inertia and rectal prolapse, but you have an enterocele as well. as far as i know, it's a condition where the small bowls like droped and sitting on your pelvic and block the stool from passasin.

i had a prolapse and rectocele repair as well in 06/2007 and it didn't help, well, it helped a little bit, cause now i can have relief with the laxatives (lots and lots of them), but before that even the laxatives didn't help, but it's not enough in order to fix the prob. of constipation, b/c the prob. with CI is that the colon is soooooooo slow and it's not enough to have the rectum repaired as long as the colon doesn't function. our colon can't push the stool foreward. my drs. explained to me that it's b/c there's a damage to the nerves in there, therefore it's like a handicapped organ, and yes, they also told me they don't know why it happens/what causes it, and the only solution is a colectomy.

i'm scared, cause i feel my rectum, although the repair i had, is starting to deteriorate again and if the rectum doesn't function well, then the colectomy may be useless and i may need a bag for the rest of my life.... i really hope i'm wrong and i won't need one.

i too spend 5-6 hrs. every morning in order to create a small bm and i don't have a life at all. half of the day i'm bound to my home and the other half i'm at work struggling with the pain and bloating. if i don't make the effort to have some kind of a bm, then the pain is unbearable and i can't function at all. i'm so tired of being like this for so many yrs. and i want a solution. i can't live like this anymore and even if i end up with a bag, then so be it. it will be better than how i'm doing now.

BUT, don't get me wrong, i really don't want you to get scared, b/c i've read about tens of women who had this surgery for the same reason and only 3-4 of them ended up with an ileostomy - what i mean to say is that the chance this could happen is very little and in 90% of the cases it doesn't happen and the results are usually good (i hope i stressed that enough), so hopefully we can be optimistic, cause it's possible that my fears are not justified.

please join us at the "TOTAL COLECTOMY PART 20" thread, that's where all the girls with CI are posting. and i also recommend you to read the older parts total colectomy parts 1-19 as well - there's a wealth of information there and you can learn sooooooooo much from reading about tens of wonderful women who had the same prob. as we do and had the colectomy. reading their storry can provide you with lots of knowlege and to know how to prepare youself for the surgery.

good luck to you and please keep us posted in the "TOTAL COLECTOMY PART 20" thread.

 


Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 12/29/2008 5:23 AM (GMT -6)   

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


Karen 46 yrs
1997: Diagnosed IBS
2003: Pelvic floor repair surgery (rectocele/cystocele)
2006: STARR surgery for mucosal prolapse/Obstruction
2006: Diagnosed with slow transit constipation
2007: Sigmoid resection because of partial volvulus resulting in immediate colonic inertia
 
15 JAN 2009: scheduled for T/C
 


pepperann27
Regular Member


Date Joined Dec 2008
Total Posts : 147
   Posted 12/29/2008 1:14 PM (GMT -6)   
I don't think colonic inertia is common or else they'd know more about it. Just my opinion
thanks, Dusti

Diagnosed with colonic inertia at 13 years old, had my colon removed

Diagnosed with rectal inertia at 16 years old, had my rectum removed and had a jpouch made.

Diagnosed with small bowel inertia at 18 years old, and got an ileostomy wich I still have.

If you want to know more, just ask me!


angel15
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/21/2009 10:58 AM (GMT -6)   
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.

marymagdalen
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 3/21/2009 10:39 PM (GMT -6)   
I am having a proctocolectomy (removal of entire colon and entire rectum) on March 30, 2009. I have colonic inertia. I have been suffering from severe and chronic constipation every day for 17 years. Although I have had IBS for 30 years. From all the research I've done, and all the people I have talked to who have had thier colons removed (but were able to keep their rectum) for this reason, the outcome is very, very good. They no longer have constipation, they have far fewer bowel movements and complicatons than people who have to get J pouches because their rectums are removed. They also can go to the bathroom normally...meaning they don't ever have to worry about wearing a bag. If I were able to have my colon removed, and have my small intestine hooked to my rectum, I would be thrilled. Truly, if this is your case, don't worry. You'll be happy you had the surgery. I have 2 friends who had this done for colonic inertia. And they are very happy they did it. As for me.....

I have been told that J pouches do not work well for people who have them because of colonic inertia. I was told that the reason is because our pelvic floors are too weak. And since my rectum is as dead as my colon, it must come out and I must have a J pouch. If it doesn't work, I'll have to wear a bag the rest of my life. I would greatly appreciate any response from anyone who has had to have a J pouch for colonic inertia. How long have you had it? How many bowel movements do you have a day? Have you had any complications? Thank you so much for your help

marymagdalen
New Member


Date Joined Mar 2009
Total Posts : 18
   Posted 3/21/2009 10:43 PM (GMT -6)   
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?

march8
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/17/2009 7:34 AM (GMT -6)   
I am a new member on this forum. I have suffered with IBS since I was a teenager. Then when I hit 40 I began to have severe constipation. I am 50 now and have had a starr procedure with the hope that this would cure my problem but it hasn't. I still have to take milk of mag. every night to go, and most of the time I still dont empty out. I also due to this surgery have fecal urgency and bloating and pelvic pain that I did not have before. When I have gone back to the Dr. who performed the surgery all they do is say the staples look fine...Well I dont feel fine and I am upset that they can do surgeries and then just dump patients......

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/17/2009 9:26 AM (GMT -6)   
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.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


march8
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/17/2009 5:23 PM (GMT -6)   
thanks for replying...I'm so gad to have found this web-site. Sometimes you feel as if you are the only person expierencing pain and discomfort,but its good to talk with others who are in the same boat......I had sitz marker test pre starr procedure and they said slightly slow on the left side and also had a defacography and was diagnosed with rectal prolapse. Now since the starr I am having bloating and pain that comes and goes on both sides of my pelvis and feel as though everything has dropped even more.I have chronic discomfort and am wishing I had never had this procedure......I went back to the dr several times with these problems and all they did was check the staples and say they looked fine, then they told me they didn't want me to come back. I honestly was so embarassed and upset that I dont know who to go to......

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/18/2009 1:22 PM (GMT -6)   
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.


Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction

Post Edited (2b ColonFree) : 4/18/2009 1:31:45 PM (GMT-6)


hollybelle
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/29/2009 10:04 PM (GMT -6)   
Hello everone, I am amazed by this site and so grateful to the members for sharing their stories. I have much in common with everyone. 1975left ovary/tube removed; 1992-rectocele surgery plus adhesion removal and enterocele surgery, 05-partial colectomy for diverticulitis w/abcess and removal of R tube/ovary and mesentary at Mayo Clinic. The rectocele was done w/o any tests to verify need and exact problems. It lasted 4 years before major constipation again. I was told on 04 I had internal rectal prolapse w pelvic floor dysfunction , cystocele and rtectocele and dyspareunia(?). This surgeon did the rectocele and he did not mention that a ridge of scar was along the posterior vaginal wall that seemed tender. Nor did he mention the scarring above cervix and rectocele. this Dr. won't do scans, ultrasounds, etc... I saw many others in after 92 surgery between 2004 and now and everyone has a different assessment of rectocele and cystocele. Most mention the scarring & prolapse, but at defferent degrees. The urogyn sees the cystocele and the OB sees the rectocele and some see all of it. I have no trust in the colectomy Dr's as they fired me after knowing they gave me internal abdominal permanent polyester sutures that I am reacting to and I mentioned my disappointment and their defensiveness. My colon doesn't work at all well. The rectum is damaged and scarred and there is loss of nerves and dysfunction of muscles that make pooping and pushing impossible. And I do have a small intestine compressing the anterior something above rectocele when straining at stool. So much damage has been done and no-one explained the possible problems. They make you feel like it is your fault that your colon doesn't work right. And they forget to mention they gave you the wrong sutures. My life is drastically changed. My poop feels like it is lying on the floor of my perineum. And on top of it, I fell on my sacrum 7 mos after partial colectomy and injured my sacrum area. Now the stool presses on something and gets stuck there and while I work at emptying this piled up stool, I have pain in my r buttock, leg, foot and upper r perineum and around the top of where my thigh meets the pelvic floor. Oh! did I mention that a DR tested m e and believes the leg/foot/rectal/sacral pain with numbness and tingling in the r perineum is because I have pudendal nerve entrapment.l No-one else gets that diagnosis. so it has beeen a nightmare!!!! I will finish tomorrow as I have to leave the coffee shop.

hollybelle
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/30/2009 1:17 PM (GMT -6)   

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.


roxanedaz123
New Member


Date Joined May 2010
Total Posts : 9
   Posted 5/5/2010 3:58 AM (GMT -6)   
HI guys


im new on this site, i have been diagnosed after many many years with STC. I cant eat properly anylonger food has become my enemy, i get so bloated and uncomforatble i was smaller a 6 month pregnant 12 years ago.. I am 34 years, now 6stone 10 and have bmi of 15,, not good, I am now having a total colectomy in june10 yippee, via key hole and prob wont need a ileostomy, i am unsure pain after the op, not real bothered tho i will deal with it when it happens, i also know v little about life there after, will all my bloating be gone, can i eat what i want months after the op?

Has anyone got any experiance to share with me on this,, there are many people that sound in similar situations on here for dif reasons, any help would be much appreciated ..... thanks

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 5/5/2010 8:41 AM (GMT -6)   
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.

roxanedaz123
New Member


Date Joined May 2010
Total Posts : 9
   Posted 5/5/2010 10:13 AM (GMT -6)   
Many thanks for ur reply and info re this matter,, much appraciated rox

scoobydoo
Regular Member


Date Joined Mar 2010
Total Posts : 35
   Posted 5/17/2010 7:34 PM (GMT -6)   
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
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