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

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.

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 .

Anne

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

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?

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

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, 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.

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

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

*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!! :(

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

 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

  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