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Colonic Inertia with Tortuous Colon - Is

surgery my best option?
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By ng1031 | Nov 25, 2011

46 Comments

I am 30 years old and have been suffering with GI problems for the last 6 years.
They consists of terrible gas stomach aches, bloating (to the point I dont fit in my
clothes and look pregnant), girggling/trapped air in my chest, chest pains and the
worst of them all.. severe constipation (don't go for 2 weeks and when I do its
rock hard and barely anything). I have seen 4 different doctors getting various
Weight Tracker
opinions that range from a regular dr who put me on Amitiza low dose and when
Weight Tracker
that didnt work recommended me to see a gi dr. That GI dr told me "oh its just
IBS..nothing we can do for you." Then I went to the city to see a dr at a well Start Tracking Now
known university hospital and they ran a million and one tests on me...........

1.) Sigmoidoscopy Result = hemmrhoids internal due to straining, some irritation

and redness but biopsies say no cancer
Popular Resources
2.) Upper scope = some irritation and redness but biopsies say no cancer
Fish Oil Capsules and
3.) Mannometry = lower esophagus is weak causing the trapped air and pains Supplementation for Heart
(taking Aciphex and Gas X for this, avoiding gas causing/acid causing foods) Disease: The Benefits and Side
Effects
4.) Empty Stomach Study = stomach is emptying in a normal range What are the pros and cons of taking
fish oil for heart health? Find out in
5.) Physical Therapy for pelvic floor dysfunction = not the cause of constipation. this article from Missouri Medicine.
When this did not work I begged my gi dr to do a colonoscopy to set my mind at
ease. 15 Cancer Symptoms Women
Ignore
6.) Colonoscopy = they found I have a very long and very torturous colon.. my GI From skin changes to weight loss to
dr was not able to complete the whole thing.. she got to my ascending colon and unusual bleeding, here are 15 cancer
had to stop. She says surgery is not needed unless there was a knot or warning signs that women tend to
blockage (pretty much on my death bed) but this definitely is why I am ignore.
experiencing gas, upset stomach and bloating. I begged her to give me Childproofing Your Home and
something for some relief now that she knew this was the cause. She took me Medicine Cabinet
off of Miralax and put me on a high dose of Amitiza. This time I didnt stop taking 9 steps you can take to properly
it because it didnt do anything but because it made me VERY sick. I missed store medicines in your home.
more work because the side effects made me feel as though I had the flu
(aches, pains, chills, hot flashes, headaches). I took it as instructed with a meal 12 Habits That Can Save Your Life
to not get nauseated which does help... but when ever I finally have a BM I Keep yourself healthy with just 10
become nauseated before, during and after. I still didn't go to the bathroom for a minutes.
week or two so the side effects were not worth the results. I was then taken off of
Foods to Avoid During Pregnancy
of it and put back on Miralax.
Learn which foods are not safe to eat
when you're eating for two
7.) Barium enema xray = because my colon is so long and loopy they had to fill
me up with 3 bags of barium instead of 1 and had to flip me upside down for Vitamins, Nutrients and Minerals
quite a long time to even get the test going. The results showed the same thing Every Woman Needs
as the colonoscopy. Longest 2 hours of my life. Worse procedure EVER! Are you getting enough of the
nutrients your body needs to feel its
At this point the GI dr told me there was really nothing they could do for me but best?
continue running more tests to eliminate other things. She continued to tell me
that surgery was not an option even though my colon was so long, loopy and
making my life miserable. I took it upon myself at this point to see the colon
surgeon to see what he had to tell me etc as I kept reading and hearing about
colectomy surgeries. The surgeon looked over all my files from all my various
Related Forums
drs....
Communities Experts
8.) Sitz Marker Xray = I have colonic inertia. My stomach and small intestine are
working but my large intestine is not. I actually went to a colon surgeon after not Celiac (Sprue) Disease
getting any treatments answers from my GI dr.
Cirrhosis of the Liver
My question is what can really be done for colonic inertia with a tortuous very Colon Cancer
long colon. The colon surgeon called and spoke with my GI dr whom I was trying Crohn's Disease / Ulcerative Colitis
not to go back to as I was done with getting no answers from her. He gave me
Cystic Fibrosis
the option to see a constipation specialist that she recommended at the hospital
I had all the tests done at. Which I find funny that until now that I go and get More
another opinion then she recommends this specialist. She never once
mentioned this specialist to me in all the times I saw her. She told him that this
specialist could give me drugs not available to most doctors and try more tests
instead of surgery. I really am not interested in experimental medications.. does
anyone have any idea what he could possibly prescribe to me that hasnt already
been tried? Amitiza and laxatives make me soooo sick. And I honestly dont see
what else he can do for me?

My other option is to have a total colectomy surgery where my small intestine is

attached to my rectum. Since my stomach and small intestine are working
properly and its my large intestine giving me the issues.

I personally do not want to be a experiment for new drugs and I am done with
having any more tests done on me (not to mention the dr bills) just for nothing to
work for me and just for me to end up having the surgery after trying all that stuff
anyways. I am highly considering the surgery.

I have spent a majority of my 20's being tested, medicated and my life being ran
by how my stomach is feeling that day. I don't to spend my 30's this was as well!

If you are having success with colonic inertia and a tortuous colon and you are
on some type of special regimen or medication please let me know. I am very
curious for feedback on this as I make my decision. The more I talk to other
people on the forums about the surgery the more I am thinking this might be the
answer for me. I am scared about the frequent bm's but at the same time it is
better then having waste in my body for 2 weeks at a time.

I just dont see that this specialist will have much to offer me.. unless anyone out
there has any ideas on what they might be able to offer me.. I would like to hear
them.

Tags: colonic inertia, tortuous colon, surgery, total colectomy, stomach aches,
colon surgeon, Colon Surgery, Colon, Stomach, GI

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46 Comments Post a Comment

Morecambe Nov 27, 2011

To: ng1031

If you decide to undergo a total colectomy then this is a well-practised

operation. Don't get me wrong - it is a "big operation" and I recommend that you
entrust yourself to a top-grade colorectal surgeon rather than a general surgeon.

I underwent a total colectomy in 2004 for torrential diverticular bleeding and

recorded my experiences on:-

http://www.medhelp.org/posts/show/523166

There are ways that the frequency - and consistency - of bowel motions (after
surgery) can be moderated and I would suggest that you balance whether the
relief of your suffering is a "greater need" than the prospect of looser and more
frequent bowel motions.

regards
Morecambe

Reply

ng1031 Nov 28, 2011

To: Morecambe
Thank you once again for all your info on this surgery. I truely appreciate it. After
having my Thanksgiving weekend almost ruined due to stomach aches it was a
good pushing point for me as to why I am moving forward with surgery. Or would
like to. I have left a message with my colon surgeon's nurse (since he is out)
saying I would like to know what can be done to move forward with this. Not
going for 2 weeks at a time is making me miserable and it depresses me.

Reply

ng1031 Dec 07, 2011

Has anyone had there large intestine removed and had their small intestine
attached to their rectum for colonic inertia and ended up with constipation after
surgery? I heard that is a risk factor. That you can get the surgery but there
might be a chance you will have constipation again one day. Also has anyone
had their large intestine removed for colonic inertia and then their small intestine
eventually give out on them? What happened then? .

Reply

ng1031 Dec 19, 2011

Well I went to see the constipation specialist that my GI dr and colon surgeon
wanted me to see.

He agreed with me that medication is not the answer to what is wrong with me
and I'm to continue only the Miralax, Aciphex and Hyoscyamine. The good thing
is he told me that it is safe to start taking my Hyoscyamine daily to prevent
stomach cramping/aches instead of taking it when I feel them coming on or when
I get them really bad. He told me I can take it up to 2 times a day if I need to. I
am happy to hear this as it is the only thing that gives me any relief when I get
the massive stomach aches.

However there are 2 more procedures he would like me to have. He wants me to

have an Anorectal Manometry and a Defecography. As much as I don't want to
go through anymore procedures his reasoning made sense to me and I have
agreed to move forward with them. The reason he wants these tests done is to
make sure my rectum and pelvic floor are for sure working. Seeing that when I
did physical therapy for pelvic floor dysfunction did temporarily help me
somewhat he wants to be sure that the rectum is strong enough for the total
colectomy surgery (which is removing the large intestine and attaching the small
intestine to the rectum with no bag). He said that he has had numerous patients
come to him after having this surgery that did not have these tests done prior
and regret it. What can happen is if the large intestine is removed and the small
intestine is attached to the rectum but the rectum is not working correctly I could
have worse issues then I am having now. He told me with the large intestine no
longer there to maintain water and the rectum not working I would be worse off
etc. so they have to make sure all is functioning before going in there and
removing and reattaching things. He also told me that if the rectum muscles are
not working properly they can actually be the reason I have colonic inertia and
the colonic inertia is probably what led to my tortuous colon. He told me that he
does feel that I have tried everything that he would have suggested and
normally he would not suggest a total colectomy to his patients unless he really
feels it should be done and would benefit the patient. He does feel that I am a
good candidate for it as long as everything else is functioning the way it should
be.

While I was there I had him double check all the blood work and biopsies that I
had and he reassured me that celiac is not my issue. I mention this as a lot of
people have mentioned this to me and I made sure to ask him if I was tested. He
said I was tested for it both ways and that is definitely ruled out. He also
apologized for all the testing I have gone through. He feels some of the tests
were not neccessary and wishes I had been referred to him sooner as the gi dr I
was going to that referred me is a specialist with upper gi issues and not
constipation like he is. He told me the sitz maker xray test was definitely
important and was one he would have had me do as well so he was happy the
colon surgeon issued that for me. He did tell me that the 2 hour empty stomach
study (the zombie eggs ha ha) was pointless as they have recently received
research showing that unless that test is done for 4 hours it really is not
accurate. Ugh! Thank god insurance covered most of that one! He is very up to
date and on top of things as a specialist which makes me feel better about
seeing him. He is working with my colon surgeon to set up a game plan for me..
and told me he will work with the surgeon as well if surgery is in my future etc.

So my next steps are to get these 2 procedures to make sure everything else is
functioning correctly and go from there. Time to get ready for some more doctor
bills and preps! Fun Fun!

Reply
 ng1031 Feb 18, 2012

so my 2 procedures are complete and the results show I now have anterior
rectocele on top of everything else. My next step is to see a surgeon for my
options on this now

Reply

JulesA Feb 18, 2012

To: ng1o131

Hi Im sorry you are suffering like this and it has gone on a long time. Im suffering
too with digestive problems but its to do with my stomach. Ive been through
tests and in hospital. I have been having problems eating and pain. Once I had
a blocked colon and couldn,t go for a week,the pain was terrible. I understand
what you are going through. I know that if you have the problems you do with
the colon then you may have to consider surgery. I hope you get some relief if
you go ahead. I was wondering what you eat? Also if any kind of diet might
help or even the Chinese medicine,just to ease symptoms. I had acupunture,I
wouldn,t give up. Try what you can,we battle on.

Reply

ng1031 Feb 19, 2012

To: JulesA

Herb wise there is a tea called Eaters Digest that helps me when my stomach is
uneasy or hurting.

Reply

kris697 May 23, 2012

To: ng1031

I am a 34 yr old woman. Giving birth to my daughter 5 yrs ago,

everything(vagina, rectum, bladder, uterous, and even my intestines) prolapsed.
I've had several reconstructive surguries, a hysterectomy, rectocele, cystocele,
and a total colectomy. My small intestines are hooked up to my rectum and this
wouldn't be so bad if I didnt have crohn's disease on top of everything. Even with
taking Mirilac 4 times a day, I am still having problems defecating and was
wondering if anyone else had a similar issues with this resection?

Also I was wondering if anyone else has ever had a problem with a colon transit
study, Shortly after I had the study done, my large intestines were removed due
to the colonic enertia. I never passed the tags(until recently) and they became
lodged into the lining of my small intestines. I probably have a very rare case but
it never hurts to ask!

Any advice would be greatly appreciated! Thanks!

Kris

Reply

ng1031 May 23, 2012

To: kris697

Wow I didnt have that issue with the colon transit study. I still had almost all the
rings inside me on the 3rd xray. They were all in my large intestine. The surgeon
that had the test order said I had colonic inertian but then another doctor said I
didn't. So who knows ..

Reply

khitch39 Jun 21, 2012

To: ng1031

Well, I don't know what you ever found out, but I am in the same situation. I
have an elongated and tortuous colon with colonic inertia and a rectocele. . I
am seeing another surgeon on this Monday to see if the rectocele needs to be
addressed. The surgeon stated that he believes this is secondary and that if it is
not bad, they are not going to fix it until they absolutley have to. they said that
this is something that gets worse with age and since I am only 36, they would
prefer not to do it until later in life as with each surgery it gets less effective. So
they will evaluate this Monday and if all is ok - they will schedule me for the
subtotal coloctomy with ileorectal anastomosis.

Reply
 ng1031 Jun 25, 2012
To: khitch39

Yes thats what happened to me. My rectocele is pretty normal from what my
urogyno told me. So no surgery there. Right now I have removed sugars, white
flours and wheat from my diet and my stomach aches and bloating have
decreased. Still working on my constipation issues though.

Reply

ng1031 Dec 01, 2012

Just an update..

I got into the Mayo Clinic in MN and finally am getting answers. I had a slow
transit study that was a 48 hour one as well as an EKG more blood work and a
colonic manometry test. I have a very long, verry loopy slow transit colon. My
pacemaker cells in my right side of my colon are dead or dieing off and it is
causing me to back up all the way to my small intestine. IBS and SIBO are no
longer even diagnosed for me as the symptoms of those happen in patients who
have slow transit etc. I was on Resolor for one month and that did not work. I
am now setting up my surgery! The surgery I will be having is called
laparoscopic colectomy with ileorectal anastomosis and I will not need a
colostomy bag. My surgery will also take place at Mayo Clinic. Another 7 hour
drive from home but well worth it! FINALLY getting answers!!!

Reply

emway Jan 09, 2013

To: ng1031

your story sounds like mine - have you had the colectomy surgery yet? I am
seriously considering it .... I had a rectal prolapse and severely redundant
transverse and sigmoid colon and slow transit constipation following difficult
childbirth and underwent a resection rectopexy last May (2012) to fix the
prolapse and resect the redundant sigmoid colon but my redundant transverse
colon was left as the surgeon at that time didn't want to run the risk of me having
a total colectomy. Whilst things have improved a bit - the improvements are not
good enough and I am having a sacral nerve stimulator implanted next week
which should help with some of the pain and also the frequency and amount of
bowel movements ..... but my fear is that this still won't be good enough and that
I will end up with a total colectomy at some point. I'm with you - the pain and the
discomfort etc from not having normal bowel movements seems far worse than
having to go for a No 2 6-8 times a day and I'd be interested to hear how you get
on.

Reply

ng1031 Jan 10, 2013

To: emway

I have my surgery next Friday actually. My rectocele was too small to be causing
me any issues. Mine is a side effect of straining from the colonic inertia/slow
transit motility. Because mine is so small it should not effect my surgery. Some
people who have larger ones have more complications or risk of complications
for surgery. My surgery is a laparoscopic colectomy with ileorectal anastomosis

Reply

ng1031 Feb 12, 2013

To: Morecambe

I formed an ileus and it was hell!! I was in the hospital in so much pain after
surgery.. was actually released after 8 days and then rushed to the ER and
readmitted for another 10 days.

Reply

ng1031 Mar 12, 2013

Just wanted to update everyone incase they experience the same thing. The
reason I was experiencing so much cramping was actually NOT normal and was
a sign of a very serious blockage.

On February 26, 2013 I was rushed to my local ER because of course I could

not go back to Mayo in MN. After weeks of cramping my bowel movements
started to slow down drastically. Each time I was concerned I would contact my
surgeon at Mayo who would refer me to his nurse who would call me and tell me
this was normal. Before I knew it I had not gone in 3 days and was feeling worse
so I contacted my motility specialist at Mayo who instructed me to go to my local
ER. I am glad that I did. The ileus blockage at the anastomosis came back with
a vengenous. The doctors told me that the first blockage I got may have been
due to the flopped over section of the small intestine blocking my rectum
however the twist did not "form". The twist was the way my small bowl was
when the surgeons connected it to my rectum. When they cleared the blockage
the twist was still there and opened up but it formed a crease where it was
flopped over. So now my body was trying to heal the crease and in the process
was closing up that area of the connection. It was to the point they could not
open me up with a decompression tube like last time because it was pretty much
healed shut with only 2 cm if that to spare. Another surgery was the only way to
fix it. The surgeon at my local hospital went in to do laproscopic but ended up
having to do "open" surgery to be able to see and fix things correctly. He
removed the healed up/closed shut anastomosis connection. He then created a
new one that flows with my body and has a larger diameter. The small bowel no
longer twists as it connects to the rectum. It not flows with the curvature correctly
to allow bowel to flow the way it is suppose to.

Reply

Jenny421 Apr 08, 2013

Hi, I am scheduled this Friday to have a total colectomy the same as you
connecting my small intestine to rectum as a solution to my constipation. My
colon is long with extra loop as well. I am scared for sure, I'm just not sure if I
should've put it off & continued trying natural alternatives. I've been taking
Turkey Rhubarb supplements, Align, & Coconut oil, also milk of magnesia &
ducolax suppositories as needed. As it so happens I have been having very
good bowel movements the past few days--which now leaves me questioning if I
could continue to have such luck or not. It has been many years of constipation
& I thought I was mentally ready for surgury but now not so sure. I'm curious
how you are doing now & if your quality of life is better having had the surgery?
Unlike you, my surgeon was quick to recommend surgery on our first meeting
which lasted only 5-10 minutes, I hadn't expected that, however he is a top
surgeon in my area & I do trust his judgement

Reply

ng1031 Apr 08, 2013

To: Jenny421

As long as you have had all the tests done that show your small intestine,
stomach, pelvic floor and rectum are working then you should be ok.

I am doing WAY better. Next week will be 6 weeks since the 2nd surgery I had to
have the anastomosis redone due to the blockage etc. But I am going to the
bathroom every single day. I eat and then within an hour to 3 hours I have to go.
It's easy to pass too. Sometimes too easy but since my rectum works I am able
to hold it etc. No worries about accidents. The only concern I have is when I will
be out in public and have to go. I just have to be sure that when I feel any bit of
urge to get to the bathroom to be sure no one beats me to it. Baby wipes
unscented are my best friend. Keeps things clean and from hurting. I can eat
things I never could before. I got the pathology report back recently and the
nerves in my large intestine lining were non existant. They showed me a pic of a
regular one and mine and there were no nerves left. Mine was stretched out 10ft
and a normal one is 5ft long. Had I not had surgery I would have only gotten
worse and it was headed that way. It's nice not to be bloated and looking
pregnant because I have not had a BM in 2-3 weeks.

Reply

Jenny421 Apr 10, 2013

To: ng1031

Thanks for your quick reply. That's great that you are feeling better as you've
had a long road & deserve some relief. I will check out the link you sent. My
surgery is Friday & I am going through with it, I guess my main anxiety is
worrying how it will affect my parenting ability if I have complications or a long
recovery. I'm doing this in part to be a better functioning parent & I hope that will
be the case. Good luck to you

Reply

ng1031 Apr 10, 2013

To: Jenny421

just keep thinking long term how this will be a better life for you and your kids.

Reply
 CRRusty Sep 07, 2013

Hey folks, new 'guy' Rusty....I have read all the posts and comments...
amazing!! I am a 54 yr old male (soon to be 55)...recent history of abdominal
pain since Jan 2013. Have lost 25 pounds (now weigh what I did in 10th grade)
trying to avoid the constipation & pain. Miralax is no help, now using Relistor 12
mg injections just to relieve gas pains & constipation; 3 days with no BM is...well
yall know!!! I'm very active, big eater (of the right foods) with 3 meals a day.
When all this started in Jan I was at 188 lbs...now weighing 163-165 lbs. Three
attempted colonoscopy...couldn't get cleaned out. Frustrated I went to our local
Mayo...did a 6 day liquid diet used the prep liquid and relistor injections to finally
get cleaned...the 4th scope went well. The doc writes; '...the scope was
technically difficult and complex due to a tortuous colon. The procedure was
aided by applying abdominal pressure.'

Bottom line is everything is done...aside from the hernia (developed sometime in

January) on the lower right quadrant the Mayo doc says I'll be fine and I can
deal with it...just get off pain meds, she says "you don't need them" and "your
body will fix itself (aside from the hernia) and the constipation & abdominal pain
will go away."

Mayo has my surgical history; left knee X 4 (with partial knee replacement),
lumbar surgery (w/ hardware) times 2, cervical spine surgery times 2 (three disc
removed w/ 4 level fusion), left shoulder repairs w/ mumford resuction times 2,
and a right shoulder rebuild. Being a former athlete has it's price!!! And I still
believe in working hard & playing hard. And even today I have rotator cuff tears
in both shoulders (again) and the partial left knee (done 11 years) giving out...
and the doc says get off pain meds. What I did do to prove to the world it's not
the meds is cut all pain meds by two-thirds... and nothing has changed except
increase in pain levels & stress!!

I'm done with Mayo...the GI department is under staffed and over booked. A
simple follow-up appt was 60 days out. Yea, I pulled strings to get in
sooner...what a waste of time!!!!

With two college degrees and a 30 yr Air Force career behind me I have to
ask...why can't these docs just remove parts of the colon causing the
problems?? I short...and simple terms...reach inside pinch and pull parts of the
colon inside itself? Visualize the toy Life Savers (the flashlight wand things) kids
play with; the plastic wand part goes inside itself 'gets shorter' without removing
anything.

Anyway...all that I've read, you folks have offered the most info and insight. What
I can't grasp is the majority of people having these problems are females...not a
bad thing...just scratching my head as to how did I get so lucky.

As I mentioned earlier, I eat well and eat good foods; morning breakfast (daily) is
4 eggs and 2 cups of grits (sometimes include canalope), lunch is usually grilled
chicken or I make flat bread pizza with grilled chicken, and dinner always
includes a salad and green vegies along with a meat or fish. I do take B12
(sublingual) daily (improves energy & nerve health), I do my own juicing once a
week... I'm not a health nut but do eat well. And yes I cook my own meals and
clean up my own mess!!!

I am at odds with all this!!! Life was just fine...then all the sudden...I'm stuck all
these problems. Thanks for letting me vent...and I'll take all the advise and
helpful hints I can get.

If anyone else need help getting things to move along please talk to your doctor
about relistor self injection pens. Comes in 4mg, 6mg, & 12mg pens with very
small & short needles. Pinch the skin above the waist line and inject into the skin
& fat...takes 6 seconds or less and generally produces a BM within 20 min (or
some gas). It will not affect or lessen the impact of any meds you may be
taking... like the stool softners do!!

Reply

CalGal Sep 07, 2013

CRRusty, I don't have the issue you're facing, but I'm wondering about
something. Does any one in your family have any food intolerances? A couple of
the 'biggies' are: gluten (wheat, rye and barley), dairy, eggs and soy.

I'm not discounting the fact of the longer than normal colon, but it seemed to be
working fairly well for you for some time. I've worked with individuals who
suddenly seemed to 'develop' constipation - severe constipation - almost
overnight and the problem resulted from food issues as crazy as that might
sound. When the food or foods were removed from their diet the constipation
reversed itself. Any possibility in your case? Any other small symptoms that
might not seem to tie in to the constipation like rashes, brain fog, fatigue or
lethargy, migraines, or?????
As far as the colon resection goes, many times it can depend on the 'routing' of
the vasculature. It's not uniform throughout the colon, nor is it the same in each
individual. If the length of the colon is mapped during the workup for this
operation and sections are found that are not 'working' or involved in the
'looping,' and they have good input of vasculature, but the surrounding areas
don't, you can't put together large sections without a decent blood supply. That
section of the colon just won't survive and you're in for trouble. I'm sure there are
other considerations, but that's one of them.

Reply

ConflictedReSurgery Oct 22, 2013

To: ng1031

Thank you for taking the time to post your story. I have a similar story with
chronic constipation for years. I've gotten the "formula" down where I can have a
BM each time I take the med combo, but the med combo causes significant
bloating and pain.
My surgeon already performed a surgery on me in Jan 2013 due to rectal
prolapse. Now given the colonic inertia, my surgeon says it's a quality of life
issue, not an emergency, to have the surgery or not (remove colon). It was
verified that my small intestine and rectum work. I'm just trying to figure out if the
full colon removal is worth it?
Like I said, the meds I take nightly have me up and down most of the night with
painful bloating and distention. However, I am able to go each night (IF I take the
meds). If I take nothing, I wouldn't go for about a week, and then it would only be
a little bit that is very hard.
Now that it's been some time since your surgery, I'm wondering how satisfied
you are? Would you do the surgery again? Do you tend to get bloated and/or
distended? Since the surgery and presumably not taking laxatives/ other
prescriptions to have BMs, have you found that you've gained a bunch of
weight? Do you seem to have control or do you tend to have accidents/ not be
able to get to a restroom quickly?
I have a new job coming up where I will be traveling a bunch... just wondering if I
have the surgery, if I'll be able to manage the urges? Alternatively, not having
the surgery, I would continue taking a bunch of meds nightly and be up a lot at
nights and feel pain/ bloating/ distended.... but I do have control and don't worry
about accidents.

If you wouldn't mind, could you give me your opinion on all of this now that
you've lived it for a while? Thank you in advance for any input you have!

Reply

ng1031 Oct 23, 2013

I would not change it for the world. I went through really odd and very scary
complications. I even had to have a 2nd surgery to correct things and I will tell
you I am SOOO much happier. I will be at 8 months post my 2nd surgery. I still
am not 100% me yet cause I did have 2 major surgeries this year but in the
bathroom dept I could not be happier. I go more than the average person and
some foods dont agree with me (or go through me quicker) but I GO! And I am
so grateful for that. It is VERY important that your rectum works because you
have to be able to hold it. I have not had any accident issues. The only time I did
was right after surgery in the hospital. They tell you to keep trying to pass gas
and when you do sometimes it is watery etc. That scared me when I went home.
I was like how will I know.. but as time went on that got better and have not any
issues with control. My surgeon made sure to keep enough rectum that I still
have my reserve so to say. A common mistake some make is their surgeons will
take away too much rectum and then they are running to the washroom etc. I
lost a ton of weight. I actually was back to my high school weight but that was
because I was living off tubes and then soft foods for months due to the
extended hospital stays and complications with my surgery. I gained a healthy
amount of weight back now that I am eating and my body adjusted. I am still 10
lbs less then I was before my surgery. I also do not look bloated and pregnant.
See for me I would not go for 2 weeks at a time even with meds. It was getting
to the point I was starting to not go for 3 weeks. The pathology report showed
my large intestine was dead (no nerves) and it was stretching out to make room
when I would eat. I would only go when I was so filled up I would either throw up
or finally go. When the removed it they said it was double in length then a
normal large intestine. The surgeons kept saying it was sooo long. Just
knowing all that after surgery made me finally feel like I was not crazy! That
something was seriously wrong. As far as medications.. now the only thing I
take is for my bile reflux and I still take probiotics because I feel they are always
good to have. Before surgery I was popping meds like crazy. On top of just meds
to get me to go I was constantly fighting stomach aches and pains. I feel like I
am getting my life back again!

Reply
 ConflictedReSurgery Oct 23, 2013
To: ng1031

Wow, that is so great to hear!! I had one surgery previously in January 2013 bc I
was prolapsing (due to ongoing strain from chronic constipation), but my
surgeon did an exam yesterday to ensure that I have enough rectum left. She
said I do so that's good (~10 cm). I believe my rectum is working properly, as I'm
able to hold it; however, there are times that I can't go even though I feel like I
need to... hard to say if it's a functional issue or due to the chronic constipation.
(The surgeon referred to it as the "chicken/ egg" question).
How long was it before you were able to return to work? I am starting a new
position that will have me both in the office and traveling. I suspect it's a matter
of getting used to the changes, but wondering a ballpark on how long before you
were ready to resume normal work duties? My surgeon said 6 weeks before I
could lift whatever I want and return when I feel good enough. For my last
surgery, I was off 3.5 months (ugh!) but that was bc I couldn't get the med
combo mastered well enough not to feel sick, bloated and a lot of pain during the
work day due to continued constipation.
I am so grateful to you for your information and hearing your story. I feel so
alone and am so uncertain about my decision. I can't imagine making my
situation worse (if i choose surgery and it turns out not to be the right option)
since as you know, "once it's gone, it's gone".
My surgeon said my colon is not completely paralyzed like it sounds like yours
was, but she said it will not get any better... it may or may not get worse over
time. There is no way to predict that. It's just extremely slow. Also, she verified
that my small intestine works fine through the Sitz Marker test.
I know that none of us are getting any younger, so I'm kind of thinking that if I
have to do it at some point, why wait.... Just go back and forth in my head about
what the right thing is.
After hearing your story, sounds like it's the right thing..... I think. I know you had
complications including a second surgery, but after that, how long before you
returned to work (if you work?)
Thanks SO MUCH for all of your information and sharing your story!! Sounds
like such a life improvement for you and I couldn't be happier for you!

Reply

ng1031 Oct 23, 2013

To: ConflictedReSurgery

Once its gone is gone is exactly why I went to Mayo Clinic in MN and had them
do some tests on me that I had not done (and I had over 14 tests and
procedures at that point). Once I had those tests is when I decided to move
forward. I have a small rectocele due to straining from my condition. I had a full
urogynocologist exam and I also did biofeedback with a physical therapist just to
be sure that was not the cause of my issues. Both said that if anyone told me it
was then to get another opinion because my rectocele was pretty average to the
point most woman have it and don't really even know it. I only knew it cause it
showed up on my defecography test. They told me it was the reason I don't
always feel empty after a BM. Which makes sense. But it is a side effect of
straining all these years as I have not had any children and am only 32 years
old.

I am a hard one to go by as far as going back to work but I was told 6 weeks.. I
was far ready at 6 weeks due to complications. Here is a break down of my story
that is from my profile on the inspire website (ng1031 is my account if your on
there)...

On January 18th, 2013 I had a laparoscopic colectomy with ileorectal

anastomosis surgery done by Dr. Cima at Rochester Methodist Hospital (Mayo).
The surgery went well and they removed 10ft of large intestine. The surgeons
kept telling me "it was VERY VERY long" as if they had never seen one so long
before. They told me it was 2 times the size of a normal large intestine. I did not
have a megacolon but I had a lot of length. I was in the hospital for 8 days due to
complications. I was throwing up every day until I was given an NG tube. They
said my small bowel was taking its time to wake up. I was released from the
hospital on Jan 25th.

On January 27th, 2013 I was rushed back into Mayo by ambulance (thank god
we hadn't got on our flight home yet) and was readmitted. I was in massive
amounts of pain to the point the paramedics had to pick me up off the hotel
bathroom floor and I was having panic attacks . Apparently I had formed what
they referred to as an "ileus blockage" that only happens to 10% of patients after
this surgery. They told me there was a twist near the anastomosis site that was
"flopping over blocking the rectum". I was told they had never seen a blockage
like mine before and had to consult with other surgeons on how to move forward.
After a lot of morphine, another NG tube, CT scans, xrays, a sigmoidoscopy with
balloon dilation (to go in and blow air inside me to move the twisted portion off
the rectum) and a decompression tube, I was finally released on Feb 5th.

On February 26, 2013 I was rushed to my local Silvercross Hospital ER in

Illinois. After weeks of very painful cramping my bowel movements started to
slow down drastically. Each time I was concerned I would contact Dr. Cima and
his staff who would tell me this was the normal surgery healing process and not
to be alarmed. Before I knew it I had not had a bowel movement in 3 days and
was feeling worse and worse. I decided to contact Dr. Camilleri who instructed
me to go to my local ER. I am glad that I did. The blockage came back with a
vengeance. In a sense it never left. The doctors as Silvercross explained to me
that the first blockage I got may have been due to the flopped over twisted
section of the small intestine blocking my rectum however the twist was still
there and would continue to cause me problems. The twist was the way my
small bowl naturally curved when the surgeons connected it to my rectum.
However it was a 360 degree twist right before the anastomosis. When the
doctors at Mayo cleared the blockage with the balloon dilation the twist moved
away from the rectum and opened up but it formed a crease where it had
flopped over. So then my body tried to heal the crease and in the process was
closing up the anastomosis connection. A GI doctor at Silver Cross tried the less
evasive approach to see if another sigmoidoscopy/balloon dilation would open
up the anastomosis connection but it was to the point it was pretty much almost
completely healed shut. By then it was more days of no bowel movements and
my small intestine was becoming inflamed. It came down to it that another
surgery was the only way to fix it. I was given Dr. Bass who was a wonderful
surgeon. On March 2nd, he went in to do laproscopic surgery but ended up
having to do "open" surgery to be able to see and fix things correctly. He
removed the twisted area of the small intestine as well as the original
anastomosis connection that was closing shut. He then created a new
anastomosis connection that flows with my body and has a larger diameter. The
small bowel no longer twists as it connects to the rectum. It now flows with the
correct curvature to allow bowel movements to flow the way they are suppose to
with less chance of a recurring blockage. In a sense he fixed my plumbing :) He
also removed a small cyst on my right fallopian tube while he was in there that I
was not aware of. I was released to start my recovery process all over again on
the evening of March 6th.

I was released to go back to work finally on April 20th.

Reply

ConflictedReSurgery Oct 24, 2013

To: ng1031

I'm amazed at all you went through! What a story, and I'm so glad to hear that
you are so happy with the end results after all of that! It sounds like after your
last surgery to the time you started feeling human again wasn't too long, but I
give you a lot of credit for all of that surgery at such a young age. I guess you
didn't have a lot of choice, but still.
I am 37 y.o. and I feel like this has been all consuming for years and years. I too
have had all kinds of tests as well as physical therapy including biofeedback, and
the tests seem to point to colonic inertia. My colon as I mentioned isn't
completely paralyzed, just very very slow... no hope of getting better from what
they say, just the possibility of more of the same or worse.
I'm not as young as you, but still young. One of my biggest fears is having
something go wrong and ending up with a bag. (The dr just said it's a possibility
but rare). Since I'm single and have so many years of life left, I can't imagine
having a worse situation than I'm in now (with a bag or some other un-
pleasantry)
Did they ever say that having a bag permanently was a risk for you? My surgeon
verified I have enough rectum on Tuesday... it's just a concern that is probably
not based in reality.
Thank you again for all of your insight and experience. You sound like a super
hero :)

Reply

ng1031 Oct 24, 2013

To: ConflictedReSurgery

What I was told is that I could wake up from surgery with a temporary bag. But
that is if there was a worse case scenario and they thought it would be beneficial
to let me heal before reconnecting me. So say they went in and cut the large
intestine out and they saw it would be best to attach a bag and allow my body to
adjust and heal and then do another surgery to remove the bag and then
connect the small intestine to the rectum then they would do that. They told me
at Mayo that they frown upon doing that unless it is neccessary. They prefer to
do it all the first time around so they don't have to go in again. They try to avoid
more surgeries at all costs. So for me a bag was not needed even after all that I
went through. And like you I did not want one unless I had no other choice etc.

Reply

ConflictedReSurgery Oct 24, 2013

To: ng1031

Thanks again for all of your information and sharing your story. I think I'm going
to go through with the surgery, and I set the date for 12-4-13 to give me more
time to wrap some things up at work. Looking forward to feeling human again
and having a better quality of life!
Thanks again and good luck with your continued recovery!

Reply

ng1031 Oct 25, 2013

To: ConflictedReSurgery

Best of luck to you! Glad I could help :)

Reply

Kda6284 Oct 30, 2013

To: ng1031

Hello....I just read all your posts and I am going thru the exact same thing,
too. My surgery is scheduled for two weeks from today. Nov, 13 th. It's been a
LONG road to get to this decision...and I have also gone thru all the awful tests.
I'm so ready to have this done and get some quality of life back. I'm glad it has
worked for you after all you went thru. Thank you for sharing your story...it has
been very informative and helpful. I hope you continue to have good results
going forward. Thanks again for sharing.

Reply

ng1031 Oct 30, 2013

To: Kda6284

Good luck to you as well! After all the complications I would not trade it for the
world!

Reply

ConflictedReSurgery Nov 05, 2013

I wish you a lot of luck too! I am still going back and forth about whether to have
the surgery, as I'm really concerned about not having a lot of control and being
limited (more so than now) in what I can eat. Have you found that you have to
go right away after you eat ng1031? I am scheduled to move to Northern CA
from Southern CA right after the surgery for a job that requires a lot of
travel. Given some of the unknown of the new position and the unknown about
how urgently I'll need to use the restroom, I'm really conflicted. I guess I'm
wondering if there are a bunch of food limitations and if right after you eat, you
feel the need to go to the bathroom urgently? (I often eat in my car on my way to
places, and that won't work if you have to go right away)... Thanks again for all of
the information. My surgery is scheduled for 12/4/13 but still may back out of it...
Thank you!

Reply

ConflictedReSurgery Nov 05, 2013

To: ng1031

I wish you a lot of luck too! I am still going back and forth about whether to have
the surgery, as I'm really concerned about not having a lot of control and being
limited (more so than now) in what I can eat. Have you found that you have to
go right away after you eat ng1031? I am scheduled to move to Northern CA
from Southern CA right after the surgery for a job that requires a lot of
travel. Given some of the unknown of the new position and the unknown about
how urgently I'll need to use the restroom, I'm really conflicted. I guess I'm
wondering if there are a bunch of food limitations and if right after you eat, you
feel the need to go to the bathroom urgently? (I often eat in my car on my way to
places, and that won't work if you have to go right away)... Thanks again for all of
the information. My surgery is scheduled for 12/4/13 but still may back out of it...
Thank you!

Reply

ng1031 Nov 06, 2013

To: ConflictedReSurgery

I think this is the biggest fear everyone has before this surgery. I will admit at
first you do go quite a bit. You are going all day and be awaken at night to go.
Your bowls also have to wake up and learn to adjust without the large intestine
there. I still sometimes wake up in the middle of the night but not as often. At first
its frustrating but then you start to realize I AM FINALLY ABLE TO GO AGAIN!
And that makes it all worth it. You have to have patience at first. You start off on
mush foods and gradually introduce foods in. There are certain foods you will
learn that will cause you to go more liquidy and more frequently. One of them for
sure is fruit juice drinks. You learn your trigger foods. As time progresses you go
less and less. Now I go pretty regular as a normal person but maybe a little
more depending on what I eat. They will want you to start eating foods that bulk
the stool up. Like breads and cheeses. Its weird to go from staying away from
these foods to being told to eat them. They will also eventually have you
increase your fiber for the same reasons. Which can be scary as we are given
fiber shoved down our throats to go go go. But it actually does help keep things
thicker. When I go the consistency is either liquidy or that of toothpaste
depending on what I eat. If your rectum is good then you should be able to hold
it. The only issues I had with this was passing gas after surgery and during
recovery. There were times where I thought I was just passing gas (which is
encouraged cause you get gas stomach aches as your bowls start to wake up
and you need to get it out) and had messes. This was during the recovery
process at the hospital and at home. I was embarrassed when it happened to me
in the hospital but the nurse told me not to be. She was like your on the colon
rectal surgery floor for one we are use to this!!! and two we do not want you
holding in gas. And its not like you go to the bathroom in the bed. Its just liquid
that comes out. The surgeons told me that would start to go away in time and it
did. I was never told about this so that is why the TMI. If you feel you have to
pass gas I suggest sitting on the toilet instead of just letting one rip ha ha.
Atleast until this stops happening and you will know when it does stop.
Bring non scented baby wipes to the hospital with you. And keep them in your
purse. They will be your best friend. They will help you feel clean. They also
avoid pain down below from so much wiping. I know people told me to bring
ointment just in case but I never needed it. I used the wipes and they worked
wonders. They still do. I never have any issues and I actually never even use
toilet paper anymore. These just work best. I remember right out of surgery I
was being reminded to be patient and that things would start to get normal over
time and it did. I am 8 months post my 2nd surgery and I really do feel like a new
me. People just dont realize how serious of a surgery this is and how it takes
time for your body to adjust to it.

Reply

ConflictedReSurgery Nov 06, 2013

To: ng1031

I can't thank you enough for all of the info and for the details. It is exactly what I
need, and I appreciate your willingness to share it. I know it's not the most
pleasant thing to talk about, but what a help it is to hear! All of what you've
written have been concerns of mine, and you make it seem so natural and
doable. I requested the second opinion and I'm waiting on that authorization.
After reading your story and progression, it makes me want to go forward with it.
How soon was it after your second surgery (if you recall) did you feel like you
could control your urge to go enough and drive/ feel strong enough/ confident
enough to return to work? My doctor said 8 weeks before I can lift whatever I
want but I can go back to work "whenever I feel like it."
I don't know if I'll ever have an opportunity to have kids, but I have to believe that
doing the surgery and not having to take all of these drugs to go would be much
healthier for a baby... in fact, I probably couldn't be on all of these drugs and be
pregnant.
Thank you for your advice about the wipes. I think it's a great suggestion, and I
have carried them with me since my first surgery in Jan '13. The surgeon did
say that since I already had surgery due to rectal prolapse makes the colon
removal surgery more complicated. It's that tidbit coupled with her statement
that she doesn't know what she would do in my situation that makes me so
uncertain. (She said it comes down to a quality of life issue). However, the
being "up all night in pain, then finally going"... and going and going is taking a
toll. I don't recall the last time I ate normally or slept more than 2 hours
consecutively.
Again - thank you so much for all of your information; it is invaluable to me!

Reply

ng1031 Nov 07, 2013

To: ConflictedReSurgery

Not a problem at all. I have no shame talking about any of this stuff. I can tell
you what things looked like in the toilet bowl last night if you really wanted me to
ha ha. I think you just become desensitized about this stuff when you have
issues and you find others that make you feel less alone. I think my husband
has finally realized that he is going to hear me talk about this stuff no matter if he
wants to hear it or not ha ha. If I tell him I havent gone to the bathroom though
he freaks out and thinks we should go to the ER for a scan ha ha. And then I eat
dinner and I go ha ha. I went through so much he just doesnt want to see me
like that again.

So for me my 2nd surgery started the recovery process all over again (which
really sucked). They told me that from the time of my 1st surgery until the 2nd
surgery my body was never really in the recovery mode but in chaos mode not
knowing what to do. I had my 2nd surgery on March 2nd and was told I could go
back to work again on April 19th. I ended up running out of FMLA. Cause my 1st
surgery was on January 18th. I was suppose to be off for approx 6 weeks give or
take but then I ran into all the complications. Then I had to have the 2nd surgery
etc. I almost lost my job. 13 years I had worked for them and they had the nerve
to tell me that FMLA ran out so if I didnt come back the first week of April I could
be fired. All while I was in a hospital bed. They pulled some strings to get me to
keep my job. I went back on April 9th working from home but ended up quitting
the next week. The stress of that job was putting too much toll on my health. I
had already been applying places before my surgery and during recovery one of
those places contacted me and interviewed me over the phone. I started my new
job in another office (not from home) on May 1st. I just told them when I
interviewed what was going on and they just asked if I had any special need
requirements. I just told them just dont write me up for too many washroom
breaks ha ha. But for the most part I have been fine here at my new job. A doc
in pay but less stress and I really think that is why I am recovering now as well
as I am. Had I been at my other job I dont think I would have been this far along.
Stress is a very very terrible thing on our health. I feel it had a lot to do with why I
had issues to begin with.

The pathology report after my surgery showed that I had barely any nerves left
in my large intestine and that it was pretty much dead. So for me surgery was
really my only option.

Reply

ConflictedReSurgery Nov 07, 2013

To: ng1031

Gosh, we seem to have a lot in common relative to all of the job stuff. I'm in an
incredibly demanding/ stressful job, and it's been hard for me to set limits. I'm
single, and they look at it as I'm always available... and I haven't made myself
unavailable in fear of political repercussions. I feel like I'm rushing my decision
to get the surgery because have to move to Sacramento for the job from Los
Angeles. Today I got approved by the insurance company for the second
opinion, but that dr can't see me until after the first of the year. Trouble is, to
keep "on schedule" with work/ new position, I need to have the surgery (which is
scheduled) on 12/4, to start job in mid January. However, I really think I need to
get a second opinion before going through with all of this. Actually, I didn't know
that a pathology report could be run to test the functionality of the nerves in the
intestine until I read your note tonight. I've had the balloon test, sitz marker test
twice, some hydrogen test... maybe others - those are the ones that come to
mind, but they haven't tested the functionality of the nerves from what I know.
For me, the meds that I am on each day (a ton of magnesium, laxatives, and
Linzess which is a new drug as of Jan 2013) do help me go, but they also make
me incredibly bloated, distended, and go approx 10 times through the night and
early morning (bc I take them before bed... as not to have to go during the day at
work). So, I go, but feel sick nightly and sleep deprived. Overall, it's really a
quality of life issue... how long can I tolerate lack of sleep and feeling so sick/
bloated/ painful distension etc.
Geez, I wish my crystal ball and ability to predict the future was working
properly!! haha
It sounds like you really don't get stopped up much anymore, right? Do you also
feel like you empty out pretty well without excessive walking/ exercise to get
things moving?
That's another thing- I walk about 4 miles daily to get things moving before work
which adds to the fatigue.
Just wondering if you feel like you eat more normally and can get emptied out
without too much effort/ special diet/ regime?
I feel so lucky to have found you for advice - thanks so much again!

Reply

ng1031 Nov 08, 2013

To: ConflictedReSurgery

If you really feel you should get a 2nd opinion then do so. This is a no joke
surgery. And once the large intestine is gone its GONE! I got my another opinion
before going through with mine. I actually sent my story to a motility specialist at
Mayo Clinic who got me in and my husband and I drove over 8 hours to see him.
He ran tests on me at Mayo that were not available here in IL. I was getting way
too many mixed messages from doctors out here and was scared I was not
making a good sound decision. The thing for me is that meds did't do anything
for me. I would take things like Miralax, Laxatives, Fiber you name it and still not
go for 2 - 3 weeks and then when I finally did it would be 2 - 3 weeks worth all at
a time due to the medication all catching up to itself. I was finally just put on
Miralax just to make the stools soft and easy to pass. My final medication was
given to me as a last shot before moving forward with surgery. It was from the
UK and I had to have it filled in Canada cause its illegal here in the US. It did
nothing for me but make me sicker. When the motility specialist saw that he was
like if this on top of Miralax then nothing is going to work and surgery is the clear
option. Then I knew I had tried EVERY route and it was time to finally move
forward with the surgery.

By the time I made my decision to have surgery I had seen well over 14
doctors/surgeons and had the following tests done...
Ultrasound of gallbladder
Blood Work (redone by every dr I saw)
Rectal Exams
Flexible Sigmoidoscopy
Upper GI Endoscopy
Esophageal Manometry
Gastric Empty Stomach Study
Physical Therapy with Biofeedback
Colonoscopy
Barium Enema Xray
Sitz Marker Xray
Anal Manometry
Barium Defecography
Urogynocologist complete gyno/rectal exam
Glucose Hydrogen Breath Test
48 Hour Transit Study
Colonic Manometry

After surgery during my complications I had to have the following additional

tests...
CT Scan
Abdomanal Xrays
Hypaque Enema Xrays
Chest Xrays
EKG's

Another thing I wanted to tell you is that if you do have the surgery.. I highly
suggest not ignoring your urges to go. If you feel the slightest bit like you might
need to go.. that is your time to get up and go to the bathroom. Don't wait it out. I
learned that is the best method to the madness. Waiting until you really have to
go is not good. Like I said before if your rectums is all good you can hold it. The
thing is the consistency will always be soft or watery because you no longer
have the large intestine to absorb the water. So for me I just never ignore the
urge and if I don't go and it was just gas.. well then so be it ha ha ha.

Another thing.. you will live off of Gatorade and Powerade to stay hydrated.
Some doctors tell people to drink alot of water but after I got my 2nd surgery he
explained to me that water doesn't do much but make your mouth not dry ha ha.
He said with no large intestine if you drink water there is nothing in the water to
absorb into the small intestine and the water just goes right through you. If you
drink Gatorade and Powerade you absorb the electorlytes before it passes
through you and it keeps you hydrated. You want to do this EVERYDAY!
Because if you were to get the flu and you haven't been doing this.. you can
expect to be in the hospital on ivs getting you rehydrated again.

Reply

ConflictedReSurgery Nov 09, 2013

To: ng1031

This is all so very helpful - I can't thank you enough. I believe I've had most of
the tests that you listed, some more than once. I am working on getting a
second opinion and trying to race the clock before I have to move for my job.
Since I'm able to go each day I take all the meds the night before (even though
I'm up a lot feeling pain/ bloated etc), whereas you were not able to go with the
meds, I can understand why the doctor I have said it's a quality of life choice
instead of being required like yours.
Just wish I really knew how my body will respond since this is the end of the
road/ last option...
I am hoping that I can get a second opinion soon to maybe feel more certain of
the decision. You were really smart to have gotten so many opinions!
Also, thank you for the tip on Gatorade versus water! I will have to make a
Costco run :) You''re exactly right, getting the flu on top of it all would be a
disaster.
Hope you're having a great weekend - thanks again for all of your insights and
sharing - you've been a godsend!

Reply

ng1031 Nov 10, 2013

To: ConflictedReSurgery

Anytime. This is a huge decision to make and it is good to have people to ask
who have gone through it cause it can be really scary! I would have been lost
without my support group over at the Inspire group. There is a AGMD GI Motility
Disorders Support Community on that site that is amazing. Helped me a ton and
well still does. I am suffering now from post surgery bile reflux. I say post surgery
as I never had this before my surgery. Fun Fun. But it sure beats anything I had
wrong with me prior to my surgery.

Reply
 ConflictedReSurgery Nov 10, 2013
To: ng1031

I'll have to check that site out too... All the info I can get is so helpful. So sorry to
hear about the reflux issue. I've have acid reflux problems as long as I've had
the constipation issues. The Drs. say that the two are related and hope that I'll
get some relief when the constipation problems are "resolved." I've been taking
Protonix which has helped tremendously! It takes about 5 weeks to really work
with continued improvement for about 6 months. I highly recommend it. Now, I
mostly just get the reflux when I eat spicy foods or drink bubbly/ caffeinated
drinks like mountain dew :)
I sure hope you get some relief soon; that is no fun! Be sure not to eat and lay
down within about 2 hours, as that will make the reflux worse.
BTW, I've seen some of the posts say that they have struggled with keeping their
weight down after the surgery and I've seen others say they don't have trouble
with their weight. What's your experience with that?

Reply

ng1031 Nov 10, 2013

To: ConflictedReSurgery

Yah they ruled out acid reflux for me. I had that prior to surgery too and no longer
do. They did an upper scope after acid reflux medications stopped working for
me after surgery. The scope showed my stomach had a pool of bile in it. So it's
bile that is coming up instead of acid now. Sometimes those 2 go hand in hand
however since acid medication does nothing for me anymore I am now on
Carafate. I have found Marshmallow root tea to be my new best friend! Works
wonders and is all natural. I would like to eventually get completely off the
Carafate but its too risky right now. I get these chest pain attacks that feel like a
heart attack and they are so painful I sometimes experience panic attacks from
them. The Carafate seems to help keep them at bay if taken regulary before I
eat. But the minute I feel it coming on the tea seems to stop the attack from
happening. This seems to be the only thing I can do. They wanted to put me on
Reglan but I read the black box warning on it and said its not worth it to me.
Especially taking it every time I eat!! Thats alot of that drug to be taking on a
regular basis. No thank you!

For me due to my surgery and all the complications I was literally on NG tubes
for weeks at a time. I was on them for 3 weeks.. got to go home and live on
mush food.. then back in the hospital on the NG and iv tubes again for more
weeks and then back to eating. So after surgery I was as small as I use to be
back in high school. but I was weak and looked like hell so I didnt get to enjoy it
all that much. I gained back about 10lbs once I started to eat regularly again. I
am still down one pants size then I was prior to surgery tho so I guess that is
good. I noticed some weight is starting to stick more though now that I am eating
more and going less. So now 8 months post surgery I am trying to watch a little
more of my over eating habits and trying to keep things at bay. I would like to try
to keep the weight off. I think for me it was like OMG I CAN EAT THIS AGAIN!
And I sortof over did it at first. Now it's time to rethink things ha ha

If you join inspire.. feel free to be friend me. I am use ng1031 on there.

Reply

ConflictedReSurgery Nov 10, 2013

To: ng1031

I will definitely friend you on Inspire - thanks for the tip!! When I had my first
surgery for the rectal prolapse last January, they gave me Reglan to "help me
go." As it turned out, the Reglan made it worse for me and my problems with
constipation seemed worse. I ended up stopping it, and I was able to go some
(very little). Overall, I don't recommend reglan either.
Still really back and forth about the surgery in that the combo of Linzess and 6
ducloax and 2400mg of magnesium daily does help me go. Knowing that I am
putting all of that in my body daily and possibly causing damage is scary.... as is
having the surgery and not being in as much control. I am usually someone who
can make difficult decisions and feel confident that it is the right decision,
regardless of how difficult/ painful etc. Not sure why this one is so tough. I think
it's bc I am able to go each night after taking the laxative combo. Just makes me
bloated/ distended and in pain each night til it passes. It would be so nice to not
have all of that... but so afraid of the devil I don't know.
My surgeon said she could do a temporary bag to let me experience what it
would be like, but I'm not at all in favor of that.
Thanks again for the Inspire recommendation. I'm going to check that out too. I
hope you find relieve for the bile reflux soon! You've been thru so much; you
deserve a free pass from here on out!!

Reply

ng1031 Nov 11, 2013

To: ConflictedReSurgery
I had one surgeon tell me I had to have a temporary bag!! Hence why I got more
opinions. I can see them suggesting it to see if you can handle it but at the same
time it's not connected to your rectum. It will just show you what it will be like bm
wise once you have the surgery. You won't be able to experience the urgency or
anything of that matter. It also means more surgery. Cause they would do the
surgery add the bag and then have to eventually remove the bag if you didn't
want it anymore. I decided this weekend to go back to elimination diet. Just
posted about it on my gofundme and in my inspire journal. I think it will help me
with the bile reflux and the odd ball upset stomach aches I have been
experiencing. Atleast I hope so!

Reply

thelostgirl79 Feb 22, 2015

To: ng1031

I'm so happy to read your story, and your successful outcome. Congratulations
in persisting and demanding answers. It astounds me how many doctors are
ignorant of treatment options, or refuse to accept a patient has anything but
normal constipation due to poor diet and lack of exercise. It took four years to
finally be told I have colonic inertia and nerve damage, plus a long tortuous
colon. I was prescribed Reselor/Prucalopride in 2012 and thankfully it works
much of the time, however it's not a long-term solution. Surgery will be my next
step, should/when Reselor/Prucalopride ceases to be effective. I'm hoping for a
partial colectomy, as it's the transverse and descending colon that's most
tortuous and unresponsive. Sadly the medication only enables me to have a BM,
and does not eliminate any of the severe bloating, pain or discomfort I
experience almost daily. It rules my life, and prevents me from being out in
public at times. I've even had a dress tear at the seams once due to painful
bloating after a small meal. Good luck with your ongoing recovery and thank you
for sharing your story.

Reply

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