# Would a stoma and colostomy bag be better than chronic constipation?



## Tlepr (Nov 9, 2014)

I really do wonder sometimes.


----------



## annie7 (Aug 16, 2002)

lots of tests are required before having any type of surgery for chronic constipation because other problems have to be ruled out. (at least here in the usa) .

if one is diagnosed severe colonic inertia which has become refractory to medication and if one does not have any outlet problems such as pelvic floor dysfunction or slow transit in the small intestine, then a total colectomy with ileorectal anastomosis can be preformed--which is no bag. the colon is removed and the small intestine is hooked up to the rectum. i desperately wanted to have this surgery but was told by two colorectal surgeons and both my gastros that because i had severe pfd as well as other outlet problems, that i was not a candidate for it.

if one has outlet problems only -- severe pfd etc-- that is refractory to treatment including biofeedback, but the colonic transit tests out ok, then a colostomy can be done. if there is both severe colonic inertia and severe outlet problems, then an ileostomy can be done.

surgery of any kind is a last resort and, in the usa, has to be deemed medically necessary by both the surgeon and the insurance company.


----------



## Pinskers (May 16, 2013)

A word of note on the total colectomy with ileorectal anastomosis (also known as j-pouch, iirc [ETA: looked up, similar, but not the same, one keeps the rectum, one doesn't])-in most instances, a bag is indeed required, but only temporarily (about six months) before the ends are connected so the intestine can heal. That being said, I know a lot of people who got their life back after this, and I'd gladly take the pouch for six months if it meant less constipation!

Speaking of, you couldn't have a total with the stoma because of slow transit in the small intestine as well, right, Annie? I can't recall. Is there a reason they didn't take the colon from your last obstruction (you're super brave, I'd be terrified of that every day thereafter)?


----------



## annie7 (Aug 16, 2002)

not to argue of course--just my own experience but from what my surgeons told me and from what I've read from people on Inspire who have had this surgery, a total colectomy with IRA does not necessarily result in a temporary ostomy--sometimes it does, but only if the surgeon thinks that this procedure is strictly necessary since it does involve more surgery and there's always a hernia risk with an ostomy, too.. I've read a number of stories on inspire from people who had a total colectomy with IRA and no ostomy beforehand. but this is just what I've been told by my own docs and what I've read from others. and i imagine it depends on the surgeon, too.

anyway--tests showed that I do not have slow transit in my small intestine, thankfully. my obstruction happened during my first sitz marker test because I had to go off my laxatives due to the test. surgery of any kind is a very last resort and my docs, at the time, wanted me to manage my constipation with laxatives. plus my sitz test showed outlet problems so a total colectomy was not on the table. much to my disappointment because I really wanted a total colectomy

very long story short, despite all my work with biofeedback and practicing with my home biofeedback machine, my pfd problems still remained severe because although I did learn to relax my muscles, I still was not able to coordinate them properly. and having megarectum and rectal hyposensitivity didn't help things either. also my laxatives began to make me feel quite ill every day, probably due to my age (63). the docs told me it can get harder to tolerate large amounts of laxatives when you're old. even so, in april my gastro doc suggested I do half a colonoscopy prep weekly in order to avoid backups and impaction. that proved to be a totally miserable experience since I could no longer --even with lots of dulcolax-- get rid of all the prep.

tired of feeling miserable daily and seeing the handwriting on the wall, I went to my colorectal surgeon and he agreed --since i'd tried everything else--to do a permanent colostomy. my surgery was seven weeks ago. having an ostomy is not without challenges of it's own but thank goodness i can "go" now without having to fight daily with a rectum that forgot how to work years ago. i feel much better. so for for me, it's been a good thing.


----------



## Nuffa (Sep 12, 2014)

You are brave annie! Do u still have to take laxatives?


----------



## annie7 (Aug 16, 2002)

oh I don't know about brave lol--just desperate...and miserable...a very motivating combination..

no--no laxatives anymore. just 100 mg colace (stool softener ) twice a day to keep the stool consistency right.


----------



## Pinskers (May 16, 2013)

Annie, do you find the colace works without a colon? I know as someone with a colon, Colace does nothing once it hits my large intestine. Do you find your softeners are more effective without the extra slow down? (Have you tried eating glittery cupcakes to get glitter in your bag yet? Apparently according to my colon-lacking friends, this is a very entertaining thing to do, haha!)


----------



## annie7 (Aug 16, 2002)

oh I have still have my colon, all right. it's just that it comes out through a hole in my belly--a "blow hole" as my surgeon called it--- lol way too funny. I had a sigmoid colostomy, so it's part of the sigmoid colon that comes out the blow hole







on my belly. I can now say "hi" to it. and i no longer have to use (fight with) my rectum anymore.

this article has diagrams of the different types of colostomies:

http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/ostomies/colostomyguide/colostomy-types-of-colostomies

Colace used to not work much for me but now it sure does. softens it all up nicely.

thanks for the glittery cupcake idea! what fun.







I'll have to try that. I love cupcakes. although I have SIBO so cupcakes don't love me... I have found that cheeze-its make everything a colorful orange....


----------



## kc99 (Jun 7, 2007)

Hi Annie, I've been living under a rock -- I didn't realize you had the ostomy surgery already! I do hope the aftermath has been going well, or as well as possible for you, and that you're finding some degree of relief. And, that's funny about the Cheez-its 

One of your comments from above -- "having to fight daily with a rectum that forgot how to work" -- I sympathize with completely. It seems that much of the treatment focus is on either anismus or pelvic floor dyssernegia (biofeedback / botox / etc), and it's hard to see what if any evidence-backed options are available for rectal hyposensitivity or weak rectal contraction. It's not even clear that there's much research addressing these specific outlet problems. Not to necessarily rant and complain, so much...I just hope that the powers that be will eventually get the message that there's this relatively untouched domain of unmet need. In the meantime, aside from the surgery route (on the GI treatment flow chart, I think I'm several boxes and arrows away from that point), I am crossing my own fingers for new lower GI prokinetics, or (in my dreams) some fantastical futuristic treatment involving a medical device or stem cells or who knows what. And, I still should look into ordering a Magic Bullet pack off of amazon....the Dulcolax biscodyl suppositories were sort of "eh."


----------



## marleyma (Aug 13, 2014)

This is more of a side note but how do they diagnose pfd? Could they do it without any test? My drs tell me this is most likely what's causes prolapse but is that an actual diagnosis? They never offered a test to check for sure.


----------



## annie7 (Aug 16, 2002)

marleyma-- a defecatory proctogram (defecogram) can diagnose pfd as well as any other outlet problems, such as a rectocele or any of the other 'celes--a rectal prolapse (both internal and external) etc.

an anal manometry is generally also used to further explore the pfd dx since the manometry gives more information about the tone of the anal sphincter muscles and rectal muscles, resting tone, squeezing tone and sensation, muscle coordination, etc.

did your doctor mention if you anal manometry gave any indication of pfd? might be something to ask him, if he hasn't mentioned it yet.

sometimes a simple rectal exam will tell the doc if pfd--anismus--might be a problem. both my university gastro and my colorectal surgeon did a rectal exam on me first thing and oh yes--they could tell it was bad. the gastro said i had some of the tightest muscles down there he'd ever felt.

kc--thanks so much for your good wishes. i feel completely recovered and am doing quite well, thanks. the surgery was robotic laparoscopic and was so easy, actually. very little pain afterwards. i was up and walking the halls that afternoon, ate a full breakfast the next day and was actually discharged the evening after surgery--all part of that hospital's enhanced recovery program--i'm sure the insurance companies love it lol. they sent a visiting nurse around once or twice a week to check up on me for a few weeks afterward.

good luck to you with everything. yes i do hope that soon better medications and/or treatment plans will be available to deal with rectal hyposensiitivity and pelvic floor problems.

balloon expulsion training can help with pfd but it didn't work well for me due to the rectal hyposensitivity---i couldn't even feel it in there, much less push it out.

and i hope the magic bullets will be just that...

wishing you both all the best...


----------



## annie7 (Aug 16, 2002)

kc---about research. i don't know if you saw this thread or not but there is some research being done on rectal hyposensitivity and neurostimulation treatment:

http://www.ibsgroup.org/forums/topic/226994-home-neurostimulation-treatment/

very thorough article on RH. good section on treatment, includes neuromodulation and other possible treatments.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3479250/


----------



## kc99 (Jun 7, 2007)

Thanks very much for the links -- I had missed the previous post, and am very happy to stand corrected. It looks like some people are taking this seriously. I will definitely take a thorough look at the article -- it looks like it goes into impressive detail. I will also keep my eyes open for more on the stimulation approach...


----------



## rewinj (Apr 19, 2012)

Since a surgery that worsened my condition significantly, my surgeon is thinking a permanent ostomy might be my best/only option. Will be keeping an eye on this thread & your experience Annie... thanks!


----------



## marleyma (Aug 13, 2014)

Is it odd that this is something I hope my dr wants to do?? I don't want to be in a constant battle with my bowels every moment of every day. Tired of dealing with this. How can I bring this up to my dr and have him get how desperate I am for relief?


----------



## annie7 (Aug 16, 2002)

rewinj--so very sorry to hear that surgery worsened your problems. you have been through so much already--so sorry. and yes, it really does come to a point for some of us that an ostomy is best. living with a bag does have some challenges but i do feel so much better now.. please feel free to PM me about this or anything if you want.

also--there is a terrific support group for people with ostomies over on Inspire. everyone there is so positive, helpful and supportive. i've been reading this board for a couple years now so i could get a realistic idea of what living with an ostomy is like. you might want to check it out. it's very informative and it made the whole thing seem much more do-able for me..

https://www.inspire.com/groups/ostomy/

and sure, with a bag there can be some problems especially at first when you're new to the whole thing and your stoma is changing from the surgery. i had a lot of leak problems right off the bat because i have a hypermobile sacrum and have to wear a sacroiliac belt 24/7 which wrinkles up my belly. but my stoma nurse (these nurses are terrific--there is nothing they do not know







) helped me find the right bag solution. so yes there can be some problems but there are also solutions.

marleyma-- oh yes--i was so tired of the battle, too--i felt the same way you do.

two years ago, when i found out i could not have a total colectomy because of pfd, i began seriously thinking about an ostomy. i still worked hard at my biofeedback but it just wasn't the whole solution. and both my gastros, of course, kept encouraging me to keep trying etc, etc... in april i went back to the colorectal surgeon i had seen two years ago. i brought all my tests and biofeedback records and told him i'd tried biofeedback like he had suggested but to no avail. and then i told him i wanted an ostomy. and we discussed it and i had another sitz marker test to see if my colonic transit was sufficient for a colostomy--and thankfully it was.

so that's what i did. i kind of by-passed my gastros and i just went back to surgeon. after that appointment, i had a follow up appointment (scheduled months earlier) with one of my gastros. i told him what i'd done and that i was ready to move on to surgery. he's really a great guy--he listened, he was supportive and he said i'd given it all a good run and gave me a referral to a stoma nurse because i had a lot of questions of course. i saw her and then set a surgery date.

so i don't know but maybe that's something you could do--just go to a surgeon to discuss things? i was lucky in that i'd already been referred to my surgeon much earlier (back then i had told my gastro i wanted the referral) so all i had to do in april (for insurance purposes) was renew the referral.

good luck to you with all this. you've been through way too much as it is...


----------



## flossy (Dec 8, 2012)

Tlepr said:


> I really do wonder sometimes.


I do too.

In a few years, if this 'S' keeps up? Perhaps that's what I'll do. What it comes down to is 'ya gotta do what ya gotta do.' You know?


----------



## flossy (Dec 8, 2012)

I really, really like this girl's gumption. She's brave and making the best of what life has dealt her.










BTW, she has Crohn's disease.

Link:

http://www.people.com/article/bethany-townsend-bikini-colostomy-bag-crohns-disease-inspiring-viral


----------



## annie7 (Aug 16, 2002)

oh yes, she has a terrific attitude. they had a thread going about her over on the ostomy board a while back...and there are others like her--both men and women....

now if only i looked that good in a bikini...lol...at my age, my bikini wearing days are so way long gone..


----------



## rewinj (Apr 19, 2012)

Thank you so much Annie. I'll stay in touch.

I still have a good deal of fighting and experimentation to do before I reach that stage, but realize how likely it may be. Your words of encouragement really mean a lot... intestinal issues are so damn isolating .

I may have said it before... but you really are a saint!


----------



## annie7 (Aug 16, 2002)

oh thanks so much, Rewinj, for your kind words.









and you are so right--intestinal issues are indeed very isolating. so hard to talk about with people who don't have them and when you do, most people don't understand or think things like it's all your fault..you're not "eating right" etc.

and oh yes--do keep fighting and experimenting--good for you. i do admire your fighting spirit. and that of everyone on here. that's what we do...and it give us hope. because there is always hope.

i've always liked what sir winston churchill said about "when you're going through hell, keep going".

wishing you all the best with this. keep me posted if you get the chance--thanks--i'll follow that thread you're on over on the other board--the one that quiet desperation started. i do hope it all works out for you.


----------



## Diana63 (Oct 20, 2009)

Hello,just thought I would let you know I had a Colostomy in May of this year and now live with a Stoma.I have had decades of bowel issues and all the tests that could be done were.Like Annie I just got so miserable and fed up and depressed with it all that this surgery was a last resort.I was offered this surgery a few years back but at that time I just did not feel ready for it yet but now I am glad I had it done and that it is all over and done with and though it has come with some problems I am glad I had it done.I am not persistently day in day out sitting on the toilet making myself ill,trying to go!!

I wish you lots of luck with whatever you decide.

Take care...


----------



## kc99 (Jun 7, 2007)

So, coincidentally, I ran across this story the other day, which is relevant to the discussion here:

http://www.pghcitypaper.com/pittsburgh/at-78-and-with-a-myriad-of-health-issues-surf-rock-legend-dick-dale-plays-through-the-pain/Content?oid=1843341


----------



## annie7 (Aug 16, 2002)

thanks, kc. what an inspirational story.


----------



## SweetLilSadness (Jul 9, 2015)

Hi, annie7!







Thank you so much for sharing your story....before reading this thread, I was actually scared of the idea of an ostomy, but I'm so happy and inspired by how well it seems to have worked for you! If treatment for my possible PFD doesn't help, even after I've exhausted all other options, I'll definitely keep an ostomy in mind.


----------



## annie7 (Aug 16, 2002)

thanks, SweetlilSadness

the vast majority of people with pelvic floor and/or outlet problems do not end up with an ostomy. they are able to find relief with more conservative treatments. when i asked my biofeedback physical therapist about an ostomy, she said that in her 18 years of experience, she'd never heard of anyone ending up with one due to pelvic floor dysfunction.

but oh yes, for those of us who do end up having this surgery, it does provide much needed relief. and any challenges that it may present do have solutions.


----------



## flossy (Dec 8, 2012)

Very inspirational:

http://jezebel.com/male-body-building-model-shows-off-his-colostomy-bag-1615516576


----------



## annie7 (Aug 16, 2002)

thanks, Flossy! what a hottie!









and what an inspirational story. good for him! his story is so encouraging and really shows the value of determination and positive thinking.


----------

