Sub- total colecotomy/ colonic inertia..any advice??

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 2/24/2011 7:33 AM (GMT -6)   
Hi people.
 
For years I have had trouble going to the toilet. I went to gastrologists who just have me stonger and stronger laxatives.
 
I had a fissure operation in 1999 and since then have outlet problems. I was refered to leeds, they sai i had an oulet, anismus problem and injected botox. This did not work. Then I had the colonic transit study and 5 days later all markers there.
 
I have ME i dont know if this contributes but anyway he recommended a sub total colectomy.
 
I also have endometrosis and definetly bleed from my rectum when i menstrate. So I wondered if there was a link. My gynea said maybe and he says a sub total colecotmy is drastic and that I will be on the loo over 10 times a day and unless it was life threatening why remove it?.
 
 The bowel surgeon disagrees. If he opens me up, sees it might be endo he wont do the op. He says in 95% of cases problem solved , patient has 2-3 normal bowel movements a day. Quality of life issue.
 
So my doc might refer me to someone else , a gynecologist for a second opinion. My life has been spent in teh last 12 years, in the bathroom, using suppositories and laxatives. The laxatives they prescribed made the whole problem worse. To me the whole thing has to go. I have had enough!! I'm 42..ive been doing this since i was 29!! 8 suppostories a day or more.
 
Anyhow if anyone else in this world has colonic inertia....what is it like? do you sometimes pass ubndegiested food? can you eat peas one day and poop peas as they are the next? is it all about slow moving transit or are there issues that affect the working of teh bowel. Can you ever go with out supoostories? do you pass a lot when you go? How do you feel, doe sit make you tired, headachy, feel ill.....what is colonic inertia, ME or teh endo? are you in pain?
 
any experiences of colonic inertia or subtotal colectomies would be very very grafefully recived. I feel so alone with this and no one understands.

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 2/24/2011 11:29 AM (GMT -6)   
Hi Vickster
 
There is a wealth of information on here - particularly in the 'Total Colectomy Part.....' parts of the forum.  You can google this too to get other parts going back a few years too - it is an ongoing conversation on here.  there are many parts.
 
You know are you in England?  I am in Greater London.  You sound like you most definately have colonic inertia plus if you have been diagnosised with anisimus then double trouble.  If so then the only answer is a total colectomy - no bowel left - just rectum.  You need to see someone familiar with CI cause a lot of consultants over here are useless.  You may require an ileostomy because of hte anisimus - it will give you your life back believe me and it is worth it.  yeah
 
it is no life living on laxatives and supposittories - i know.  Life is too short. 
 
 
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal

AKTeach
Regular Member


Date Joined Sep 2005
Total Posts : 83
   Posted 2/24/2011 1:24 PM (GMT -6)   
I can certainly sympathize with you!!!  I have only had  colonic inertia problems for 3 years but I have reached my limit.  I am tired of all of the laxatives, all different kinds and forms,!!!  After going through all of the tests last summer and getting the final diagnosis of  CI  I have talked to all of my medical providers, PC, GI x 2, surgeon x 2, gyn and any other Dr. that will listen.  Surgeons say go for it, GI's have made me try more pills and remedies to "get things moving" and my PC is somewhere in the middle.
If I know what the long range prognosis was for the sub-total colectomy I would have had it done by now.
But I am realistic and I know that no two people are alike when healing and with the outcome of a particular surgery.  So here I am, in a quandry, not knowing what to do, because it is such a big decision!!!  I  am hoping my body will make up my mind for me and it will be the right choice, and that whatever happens it will have been the right decision for me...
I hope that the choice you make helps you feel more at peace and more importantly FEEL GOOD again!!!
My best wishes for a good outcome wink .
Anne

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 2/24/2011 1:58 PM (GMT -6)   
hi girls, Karen is right, google "total colectomy part 3", then 4 etc. reading those threads is the best way to learn about this surgery and it's outcome.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Trixiemom
Regular Member


Date Joined Nov 2010
Total Posts : 89
   Posted 2/24/2011 5:19 PM (GMT -6)   
I have colon inertia and pelvic floor dysfunction,Having an ileostomy was the BEST thing I did!!! I as you was dealing with this issue for years. Finally had enough of IT. Saw the best surgeon in Chicago he did it laproscopically. Chose not to remove my colon...no cancer history. When you have had enough,enough is enough just do the surgery it is life changing...Trixiemom
have loop ileostomy
diagnosed with colon inertia
I love my ileo and life

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 2/25/2011 3:47 AM (GMT -6)   
Thanks everyone. It seems a drastic op after one x-ray and Ia am going to get this second gynea opinion because of the endometosis but its been 12 years of my life snatched away now and I think an op is the way to go. Even if it means a bag!!

Funnily enough a school friend who was a bit odd said to me when i was 11 that i woild end up with a colosmy bag , aged 42 now she could be right! I hoped it was just cos she was weird though and still do ;)

I will read those parts and thanks so much for the replys. I cannot imagine a life without laxatives! and suppostories. They reckon the cured the anismus but i think the first test was done wrong and i cant see how thigs work without being retrained?

I know its graffic but honestly who can we ask? what is it like for you. I dunno if we can send private messages on here if people are embarrassed but I just thought with thios colonic inetria that you'd be stuffed full of hard poop. Well I go LOADS and it isnt properly formed even without laxatives. I feel so unwell I have to get everything out, by suppostories, rubbing my belly. I feel tired exhausted. I have to go times where I don't eat for days. Mt stomach sounds like a brewery and what i dont understand, if the transit is slow how something i have eaten one day comes out fully formed the next...like erm peas, and even sweetcorn (this is without laxatives and using suppositories)...... sorry :( but is tis all part of it.

A lot of you are not in the Uk . I am seen at Leeds which is a three hours trip away in teh uk.

I was getting checked ouyt by the gynea as I think I have endometsois in my rectum and want my rectum to work and its in my bowel to but i also dont want to wait and wait for more appoinions and put of what I know needs doing. darn thing rules my life!! thanks everso for teh replies means LOTS to not be alone.

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 2/25/2011 3:50 AM (GMT -6)   
i forgot to add...Anne my sympathy.... a pain in the **** literally! I think I have reached the stage where I really just want rid. Don't think endo could really cause all this so it'll have to go anyways. Are you treated in London anne?

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 2/25/2011 4:15 AM (GMT -6)   
Vikster

I used to 'go' everyday and when i was diagnosised in 2006 with slow transit at Kings College London i was very surprised. Told i was 'too young' for my bowel to be removed (what!?). It doesnt really matter because you could go everyday but be several days late. Plus did you know if you are constipated you can become incontinent?? happenend to my dad. So that is not an indicator nor the food either. believe me i also could see food the next day but means nothing.

I didnt feel right, daily bloating, pain, diets etc... spent 2-3 hours in the loo a.m and the same in the afternoon after coming home from work using a whole box of glycerin suppositories daily. i also felt the need to digitate with a finger inside also with some toilet paper. Lots of women do this it is common. it all turned out to be related problmes of a twisted bowel stuck between the rectum and vagina plus slow transit. i had many operations that were a waste of time and wrong diagnosis.

However, because i was impatient in between referrals to St Barts i went to my local surgeon in 2007 who found the twisted bowel and when he did a sigmoid resection i had no need for suppositiroes but my bowel packed up for good.

Then in 2009 i had the total colectomy with a temp bag - felt good and human first time in 10 years... i had it reversed 5 months ago but i am having issues again so it appears you really need to have the smal bowel tested too - i did not for some reason - and my consultant thinks my sb is not working properly... that is my story - and dont worry about being graphic we all are on here - nothing surprises anyone here.

In any event the tests you are having/had will prove your bowel function.
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 2/25/2011 5:15 AM (GMT -6)   
Thanks Karen. Sounds a lot like me. Peopel say can't you leave it for a day but the bloating is just horredous !

Its good that you are feeling well. I guess I am kinda hoping that the ME symptoms will go with the bowel. I did wonder if endometrosis could be causing the bowel to stick to other organs but like I said do I want another year of tests or just get on. My relationship broke up recently. I do not know if he was scared that I would have a normal life or whether I wouldnt but after 5 years I am in a bad place , which makes me think NO to the op but makes me think yes too..get my life back and not spend 5 or 6 hours a day in the loo!

My surgeouns says that my pelvic floor and small bowel are all okay, dunno how they know that without testing it? Would you have to go back to the bag? would you still feel it was worth it? Did you used to get headaches and tiredness... so many questions....lol relief at last to be able to talk to people who understand! thanks everso x

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 2/25/2011 8:41 AM (GMT -6)   
Hi

It would be really great if it is the endometriosis that is the cause and and not CI.

Sorry to hear about relationship break up. You should not have suffered since you were 29 at all!!! That is far too long. yeah true how do they konw that!?

Yes i may need to go back to the bag as it seems my small bowel is not working since the reversal. I am waiting to get a prescription he requested from my GP which is a new drug in the UK for constipation - it is not a laxative but works on the nerve endings. i cant remember the name.

Yes i was constantly tired in the past - but when i got my bag and health back i was still tired! i think i suffer with depression that is why. headaches could be staining and having all that stuff inside not getting out. yes ask away - no probs.x
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal

AKTeach
Regular Member


Date Joined Sep 2005
Total Posts : 83
   Posted 2/25/2011 7:21 PM (GMT -6)   
Hi Vickster!!  No, I am in the US in Oregon.  We have some great docs both here and up north in Portland.  I also visited the Cedars Sinai Hospital in LA last summer and that is where I received the Colonic Inertia diagnosis.  Great people down there too, they specialize in motility disorders where I went!! 
I get such good advice and opinions on this forum, it has really helped me = )

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 7/31/2011 9:02 AM (GMT -6)   
hi everyone.
 
I had a laproscopy and some endometrosis lazered away but it is not the cause :(
 
So back to maybe having the subtotal. I'm feeling pretty run down, got so much mucus when I go and I am sure I have chronic candadis. I now wonder if this was the cause of the chronic inertia or if its the other way round. Will teh candida go with the bowel?
 

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/31/2011 10:54 AM (GMT -6)   
Vikster, I do not think that an over growth of yeast is what causes CI. I think it is just what it is, a lazy colon. I am sorry that removal of the endomotriosis didn't help.

Last year, i got a subtotal colectomy with temporary loop ileostomy. I never felt so healthy in my entire life. I never had to worry about having a bowel movement because it just goes into the bag with no effort on my part. No laxatives, no suppositories, life has been great.

The only cure for CI is a total colectomy.
End ileostomy due to colonic inertia and pelvic floor dysfunction.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 7/31/2011 11:55 AM (GMT -6)   
Vikster, I do not think that an over growth of yeast is what causes CI. I think it is just what it is, a lazy colon. I am sorry that removal of the endomotriosis didn't help.

Last year, i got a subtotal colectomy with temporary loop ileostomy. I never felt so healthy in my entire life. I never had to worry about having a bowel movement because it just goes into the bag with no effort on my part. No laxatives, no suppositories, life has been great.

The only cure for CI is a total colectomy.
End ileostomy due to colonic inertia and pelvic floor dysfunction.

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 7/31/2011 5:21 PM (GMT -6)   
Probably not wha I wanted to hear in one sense as its a major op and I am scared witless but also encouraging and great to hear that you are doing so well. I think he intends to attached small intestine to rectum . I cant imagine ever not using suppostories and laxatives. I have M.E too and I do wonder if a lot of my symptoms are due to this condition. How did you feel before and it what ways do you feel better? How often do you go now? (if that isnt to personal)

I do go lots everyday with suppositories but its unformed mostly , even without laxatives and I cn spent all day in teh loo going ten times a day as is. I just hope that I won;'t still be like that and not have to be far from teh loo. I want my life back too. 13 years of this is toooooo long!

thanks for teh reply :) so pleased it has worked for you

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 8/1/2011 2:06 PM (GMT -6)   
Vikster, before surgery, I had bloating, unable to pass gas, unable to burp. I could only eat small amounts of food and was accused of being anorexic. I would get so bloated and backed up, that I could not even drink a sip of water.

I had to sleep sitting up with several pillows because of severe heartburn. I never had the urge to have a bm and could go weeks if I didn't take a laxative. I spent hours and hours taking laxatives, using suppositories, and pacing around and around hoping for a bm. This consumed hours of my day, everyday.

I had to be very careful about what foods I ate, because if I ate something with even a small amount of fiber, this caused even more constipation and bloating. Sometimes my stomach would grow to such an extent, that people, strangers and even co-workers would ask when my baby was due.

I not only was diagnosed with CI, but also a pelvic floor dysfunction. Somehow I lost the ability to push down to have a bm. This resulted in all bowel movements being manually removed. I could not even use enemas because I could not push the water out. My defogram showed that I was unable to empty the rectal vault despite repeated straining. I was dx with anismus, rectocele, and intussecption. I was not a candidate for the total colectomy with ileorectal anastmosis due to the pelvic floor dysfunction.

My life now is totally different. I can eat and drink and have to be careful not to over eat. I can pass gas into the bag and I can burp. I can sleep laying down and my heartburn is less. I probably spend 2 hours a WEEK in the bathroom. This includes emptying the bag and changing the bag. I have more time than I ever imagined. As far as how much I go....well, it just depends on how much I eat. I empty my bag 4 to 8 times a day.

I hope this helps, Tracy
End ileostomy due to colonic inertia and pelvic floor dysfunction.

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 8/2/2011 10:03 AM (GMT -6)   
Hi Vikster I'm also in the UK.. South of London near Tunbridge Wells. Really sorry to hear about your troubles.. it's truly miserable. Don't underestimate how bad you're feeling and how awful this can make you feel. You get used to living a different sort of 'normal' and forget how 'healthy' feels. I had only 10 months of utter misery (nothing compared to you) before I made the decision to have a permanent ileostomy.

My story is pretty long and boring but I had colonic dysmotility rather than 'inertia'... same thing though really. Mine came about after peritonitis last year which damaged the nerves in my colon. I had emergency surgery, partial colectomy, temp ileo but was then plumbed back together and was supposed to work!!! It didn't and after months of head scratching finally decided my colon wasn't going to work again.

I had the choice of a total colectomy but chose to have the bag instead as I'd had a good experience with the bag before and didn't want to risk being on the loo 20 times a day. I virtually had to beg my surgeon to do it though and at the time I felt it was ridiculous to be having this surgery for what essentially was constipation.... now only 3 weeks later I wish I'd done it sooner and can't believe how much better I feel.

When they were figuring out what was wrong with me they talked about a possible bacterial overgrowth (SIBO) and tried me on antibiotics but they didn't work and I think I underestimated my symptoms at the time too. I also had a spell on this new drug called prucalopride (resolor) which did take the 'edge' off but not enough to make me feel significantly better. So I finally made the decision to go for it... I didn't have much choice to be honest. Live life at 50% feeling sick, bloated, utterly miserable, unable to eat, sleep or function OR have a bag?? it was a no brainer in the end.

The problem is that most surgeons see the creation of a stoma as the last resort and some sort of failing on their part. In my mind this is the solution to my problem - I knew what I was facing and in the scheme of things it's not really a big deal. Just a different way of going to the loo :-)

My consultant said that when he did the ileo this time that he had a look at my colon and it was all long and floppy with little muscle tone - basically it wasn't going to work again. So far I'm SO glad I've done this.

I totally get what 'answers4me2' has to say above - I felt all of that too. It's just miserable. I would be awake ALL night long unable to lie flat, sleep and would have my fingers down my throat trying to make myself sick just for relief. When you're in it you somehow cope.. but when you look back you realise just how bad it was.

I was sooo scared before my surgery but now only 3 weeks later my life is transformed. I'm eating virtually anything and everthing, on Sunday I walked 5 miles and yesterday went swimming. I can't wait to get back running and our summer holiday with my kids is already so much better than it ever could have been when I was sick. The bag is a minor inconvenience ;-)

Life is too short. You have the choice of the total colectomy or an ileostomy? either way.. get rid of that nasty colon or bypass it and you'll feel tonnes better! good luck. Sarah x
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 8/2/2011 11:06 AM (GMT -6)   
Thankyou so so much :) Thats fabulous. Thanks for taking the time to type that up. I do wonder If a lot of my symptoms are this and not M.E , I already have severe intestinal candida so was hoping this would get worse.
 
I go to the loo a lot and pass food I have eaten the day before, for example. peas for tea...= peas the next day . I don't get how that works if I have colonic inertia but either way I ahve to use suppostories and the last two years after being given laxative after laxitive. I am now dependent on those for a good clear out. I can go now up to ten times or more a day and like you two my life is controlled...well...my life is crap basically (excuse my langauage!!)
 
I guess I will be chancing up this appoitnment. I keep thinking as ME is a neurological illness that this is neurological abd that I can fix it cure it, take a supplement, do more exercise but I guess I have wasted anough time. It would be great to hear from some people also who have had the subtotal and hear how often they are going. I so want my life back. I am so pleased you ahve got yours, so encouraging!! thankyou smilewinkgrin

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 8/10/2011 4:13 AM (GMT -6)   
*gulps*
 
I have to kind of phone them back today because they can do the op the start of sept I don't know what to do!! :(

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 9/9/2011 8:35 AM (GMT -6)   
This surgey has been delayed . I would love to hear from others who have had it done as I have heard from someone who is going every hour and wears diapers/nappies at night. I don't want this!! eek

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 9/9/2011 2:27 PM (GMT -6)   
haven't followed this for a while so just dropping in and noticed your latest posts.. what surgery are they suggesting?? total colectomy? I'm now 9 weeks into my new permanent ileo. I chose to have this done over having the TC although that could have been an option. I didn't want to risk the 20x per day to the loo, diapers, incontinence stuff (although not everyone does suffer like that) and am so happy with the bag. It's not the end of the world, you have control over it and it's 1 million times better than the symptoms of colonic inertia.

I do remember sobbing at my Doctor and asked her if I was depressed or needed medication.. she said 'no I think you'll be fine if you felt better' and she was SO right! here I am bouncing around and feeling like a million dollars. Perhaps your ME symptoms will disappear along with your colon!

Let us know where you are with your decisions... Sarah
Sarah - 39 year old mum of 2 boys, runner/triathlete from UK
June/Oct 2010 - Peritonitis/perforated diverticulitis. Sigmoid colectomy, temp ileo then reversed.
DX Colonic dysmotility.
July 2011 - Permanent end Ileostomy after begging surgeon to put it back
Follow my blog - http://bagthatruns.blogspot.com/

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 9/9/2011 3:35 PM (GMT -6)   
Hi Sarah. Thanks. Yes its the subtotal colectomy, attaching the small intestine to the rectum . My surgeon says in 95% of cases people go just 2-3 times a day but having heard from some people I knwo it isn't always like this. They think he is being optomistic. I posted on an M.E / CFS forum and people were coming back going DO NOT HAVE THIS SURGEY !! I'd made up my mind but that and a few horror stories have put me off. Thanks everso you have been so helpful. I have thought of perhaps PMing people of older posts, I really really need to know other peoples experiences of this, I can't go into this not being 100% sure that there is no other way.

AllysGG
Regular Member


Date Joined Jan 2005
Total Posts : 51
   Posted 9/9/2011 5:13 PM (GMT -6)   
 I had a subtotal colectomy 5 years ago.  It was the best thing I had ever done, felt better then; even going skydiving.  I did have to go to the bathroom about 8 times a day.  Unfortunately I had to undergo a permanent ileostomy and proctocolectomy back in August.  The decision for me to have the subtotal was the right decision for me at the time.  Making this decision is not an easy one.  We can never know the outcome, just have to trust in your own instincts to make the right one.
 
Best wishes,
 
Penny turn
Diagnosed with Ulcerative Colitis 1995
Subtotal Colectomy May 2006
Permanent Ileostomy August 2011

Vikster
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 9/10/2011 3:11 AM (GMT -6)   
Thanks Ally and well done for skydiving!! I wouldn't dare ;)

when you say you went 8 times a day is that urgent where you always have to be near the toilet or is it controlable?

Thannks so much for your reply.

AllysGG
Regular Member


Date Joined Jan 2005
Total Posts : 51
   Posted 9/11/2011 6:14 PM (GMT -6)   
  Vikster:
 
It was mostly controlable until the end when my rectum had such bad u/c it needed to be removed also.  But for almost 5 years, no problems.  Lost all the steroid weight, ran around with the grandchildren; felt great!
 
Best of luck,
 
Penny yeah
Diagnosed with Ulcerative Colitis 1995
Subtotal Colectomy May 2006
Permanent Ileostomy August 2011
New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Friday, June 22, 2018 9:04 PM (GMT -6)
There are a total of 2,974,425 posts in 326,174 threads.
View Active Threads


Who's Online
This forum has 161269 registered members. Please welcome our newest member, berrymanrochell.
372 Guest(s), 5 Registered Member(s) are currently online.  Details
HarryN, Hoagie, Sara14, Octorobo, fiddlecanoe