Is a total colectomy a cure for constipation if the entire GI tract is slow?

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murphy's mom
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Date Joined Dec 2010
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   Posted 12/3/2010 3:35 PM (GMT -6)   
After suffering lifelong constipation and being offered nothing but laxatives by my GI Doc, I finally decided to get properly tested. The tests revealed a very sluggish small intestine and a barely functioning, very long and tortuous large intestine. I've been told that a total colectomy is now my only hope for a somewhat normal life. My concern is with such a sluggish small intestine, will removing my colon alleviate my constipation? I can't imagine going through such a major surgery, only to remain constipated.

Murphy's Mom

Trixiemom
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Total Posts : 89
   Posted 12/3/2010 7:52 PM (GMT -6)   
Murphy's mom...I do not know about a sluggish small intestine but my large intestine was very slow and the dr gave me a loop ileostomy nov 17th of this yr I am doing fine with some minor issues ie. stoma bleeding but I as of this time have NO regrets!!! i know that I am only 2 1/2 weeks out from surgery.But it may do you some good i would get some more opinions just to be sure. Hopefully someone on this board will respond God Bless Trixiemom
have loopileostomy
diagnosed with colon inertia
still in hospital waiting to get on w/my life

murphy's mom
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   Posted 12/3/2010 9:36 PM (GMT -6)   
Thanks for responding. I'm glad you're recovering well. I'm not sure what a loop ileostomy is. Do you know why they couldn't do an end-to-end anastomosis, connecting your ileum to your rectum?
Best wishes!

Trixiemom
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   Posted 12/3/2010 10:08 PM (GMT -6)   
Murphy's mom...they could not do it due to pelvic floor dysfunction so if the did that i would still have problems going potty. A loop ileostomy is where they bring up a loop of the small intestines up and kinda cut it not all the way through and 1 part is where mucous can be discharged and the other part is where stool passes out into a bag. I have to wear a bag all the time and the stool can be anywhere from watery to thick and pasty. Mine is thick and pasty which is fine with me. My quality of life is so much better than it was weeks ago. In fact so much easier....Trixiemom
have loop ileostomy
diagnosed with colon inertia
2 1/2 weeks doing well

pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 12/4/2010 11:20 AM (GMT -6)   
I also have dysmotility throughout the GI tract. Finally, after years of extreme suffering, I had my colon removed and an ileostomy done and it was the most helpful tretament so far. Sure, it is not a cure, you will still have problems due to the imapired motility of small bowel, but the pressure from the colon will be gone. If I were you, I would directly opt for an ileostomy and not for an ileorectal anastomosis since ileos tend to work better in people with dymotility problems.
It is no cure, I still have problems/sympotms but I was very thankful for the improvement. I would not have been able to go on like this any longer, being every day in such a extreme amount of pain, unable to eat etc.
However, one must consider that this improvement may be only temporary due to the progressive nature of dysmotility syndromes. But there is a great chance of at least temporary improvement and sometimes it will last for the rest of the life. I easiliy decided to dare the surgery: either I would survive and have the chance of a "better" life or I would stay the same which simply would mean no life at all, wishing to go to sleep and never wake up again.
Moreover, a sluggish small bowel is even more slowed down by a small transit colon, so your actual small bowel transit may be faster than the small bowel transit with the backed up colon.

How wasyour small bowel dysmotilitry diagnosed? If it was by tranist studies then the mentioned effect yould have worsen the apparent small bowel motility. The best test to evaluate transit is the small bowel manometry since you can measure the contractile pattern and not the transit which may be also prolonged by severe constipation.

murphy's mom
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   Posted 12/4/2010 1:54 PM (GMT -6)   
Thanks for your response. My sluggish small intestine was diagnosed by a "Small intestine follow-through", in which you drink barium, then they x-ray you every 30-45 minutes or so to see how long it takes for the barium to work it's way through. On a normal, healthy young person, it should take about an hour and a half. It took 4 hours for me, and that was after the radiologist sent me to get something to eat and drink to hasten the process.

In addition to the slow transit, an abdominal CT scan showed a rather large mensenteric hernia of the small bowel. The mesentery is an apron of connective tissue that lies over the abdominal organs, anchoring them in place. Mine is herniated, allowing the jejunum, the middle part of the small intestine, to fall into my pelvic cavity. It's also very twisted, what the radiologist called a "whirlwind jejunum" It has displaced my sigmoid colon, which is also very twisted.

I'm only 47, thin and athletic. I could have been born with this hernia or it could have developed due to slow bowel transit. But whatever the cause, I'm hoping that repairing the hernia, and possibly even removing part of the jejunum will help with transit time.

Please tell me, with an ileostomy, do you where a bag? I'm a nurse and have cared for ostomy patients, but I'm not ready to personally go through that. May I ask how old you are?

Are you able to tolerate food now? I've been on soups and smoothies for so long, I think I've forgotten how to chew. I really don't mind not being to eat normally, but I'd do anything to not feel constantly bloated and queasy.

Thanks so much for sharing your experience with me.

pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 12/4/2010 8:46 PM (GMT -6)   
Yes, with an ileo you have to wear a bag 24h/day. But I cannot see the problem accepting this when you do have an improvement of your pain etc. I think it is a matter of choice of priority.
Sorry, I might be quite strict in this regard but I am 24 years old, and so far, I have been unable to live a normal life for most of my living time; in the recent years I have been unable to do anything regarding education etc and I got to the point when suffering was so bad that I wished to be released by it in any way - even if this would mean dying, and of course, wearing a bag is a much better option. I had to fight for getting a bag since my docs did not want to do it - partially because there were many misdiagnoses in the past which still acted like a stigmata , partially because they considered a bag as not "suitable" for a young woman. If I had had cancer they would  not have talked like that.
 
I also have to wear a permanent bladder catheter, since I cannot empty my bladder by my own (bladder is affected as well). I should have surgery since a permanent bladder catheter, even through the abdominal wall, is not a long-term solution but nobody wants to do it or cannot do it.
I am in pain from recurrent infections and spasms.
 
I also have a hickman catheter for intravenous feeding I do not use any more. By means of iv-feeding I was able to improve my severe underweight.
I have had three bowel surgeries and numerous little procedures so far, and I think more surgeries will come in the future.
Biggest problem is still dealing with the ignorance of docs here.
 
Your transit from the small bowel studies could be prolonged by the backed up colon and the small bowel hernia..such things can have a huge impact on motility, too. I was told that tranist times from the small bowel studies are extremely variable even in healthy subjects and that this test is inaccurate for determining transit. You would need a scinitgraphy of the tract to determine the transit time. Anyway, regarding the small bowel transit in the follow-through up to six hours is sometimes considered as normal. So 4 hours can be completely normal or it may be slightly prolonged but you can't say this from this study. Moreover, if you drink the contrast dye one must consider the gastric emptying time. If this is slowed down, then your small bowel transit time seems to be longer than it actually is. With my ileo I already had transit times from oral intake to output up to 18hours and more when most people with ileos have a transit time of less than 2 hours.
 
As far as eating is concerned I am able to eat by mouth again but I am extremely limited in variety and amount, and eating is often still associated with an increase in symptoms, but compared with my preoperative condition that's really ok. You can't compare this, actually.
 
A bag is not a disgusting thing for me, especially an ileo, since the small bowel does not produce actual stool. In contrary being 8 hours plus occupied with getting my bowels "moved" -many times invain- that was disgusting and extreme painful.
Again, I think it is a matter of choice, one must know what is most important in life.

Post Edited (pelztier86) : 12/4/2010 7:50:24 PM (GMT-7)


Booka
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Date Joined May 2008
Total Posts : 60
   Posted 12/4/2010 9:41 PM (GMT -6)   
Hi Murphy's Mom,
I agree with Pelztier86... My daughter Takera who just turned 13 , is almost identical to Pelztier86 story and symptoms, but she has had many more operations, and along with her GI tract, and Urinary tract being involved her GYN system is also involved.....but we did try everything before going to an illeostomy, but it has given her the best quality of life that she has ever had. She actually loves her "bag", and it doesn't bother her at all, she can even change it by herself now !! If her colon was the only problem we had it would have been a cure, but with the other systems being involved we still have our problems, but this has been a HUGE step forword, and we don't regret it at all. Again like Pelztier86 has said you really have to think about quality of life, pain etc....having an illeo is a small price to pay for having less pain, better life,etc... Alot of people on this thread have illeo and live a total normal life, it is a cure for them...My daughter said it best when she woke up from her illeo operation"Why did you wait so long to do this?" That was directed to me and the DRs...I had to fight the Drs for it after i was convinced that was our only option, and now her Drs agree with her that maybe they should not have waited so long...Hope this helps you, if theres anything else feel free to ask.
Krista

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 12/5/2010 3:30 AM (GMT -6)   
hi Murphy's Mom,
 
i had a total colectomy w/ ileorectal anastomosis on Aug 2009 for slow transit constipation. my drs didn't test my small intestine's motility before the surgery and it turned out my small intestine is also very slow, so i did remain constipated. i also have a pelvic floor dysfunction, so even if the stools reached my rectum, i couldn't expel it well, and it was a torture every morning, cuz it took me hours to make it all out. i then opted for an ileostomy and very happy i did, with the ileostomy i feel the best i've felt in 17 yrs and i love it. i had it done on July of this year. my small intestine is slow and if i don't take enormous amounts of prune juice, i'll hardly have any output - about 300-400 ml/24 hrs.
 
but even tho my small intestine is slow, i still feel the surgery helped greatly and i feel millions times better now than before the surgery. i'm now 5 mons post ileostomy op and for now prune juice is helping me, but i'm still so scared that one day it'll stop helping me, cuz then i don't know what i'll do.
 
but in any case, i couldn't go on the way i was before the colectomy, it was an impossible situation. i'm certain that if i had it done yrs ago (i had my constipation for 17 yrs), it would have been much more effective. a colorectal surgeon, who's also a friend of my family, told me that b/c my problem wasn't taken care of on time, that's why my pelvic deteriorated so much and also my small intestine got affected  sad  but for so many yrs i couldn't find a dr to listen to me and help me. oh well, what can i do about it now..?
 
but i'm ok with the ileostomy and really feel great, and as long as prune juice is helping me, then i'm happy with it. i just hope it helps me forever.
 
i wish you all the best with your decision!

murphy's mom
New Member


Date Joined Dec 2010
Total Posts : 5
   Posted 12/5/2010 7:48 AM (GMT -6)   
Thank you everyone for sharing your stories with me. I've taken notes to share with the colorectal surgeon (the 3rd one I've consulted with) on Wednesday. I'm so happy to hear that all of you are experiencing improvement in your quality of life. I'm so looking forward to being able to re-engage with the world after suffering silently for so long.

answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 12/5/2010 1:02 PM (GMT -6)   
OMG, I just lost my long post to you. GRRRRRRR mad
 
Okay, here we go again. Murphysmom, hello and welcome. :-)
 
I had colonic inertia and an obstructive defecation syndrome. This means that my colon was slow and I could not release stool or gas from the rectum normally. I also suffered with nausea, heartburn, and extreme bloat. I could not eat alot of food at one time, or else I could not eat at all. There were even times when I could not even drink a sip of water. I had to sleep sitting up or else my food and stomach acids would back up into my throat.
 
I saw a few gastro doctors and 3 colorectal surgeons. I was told to eat small, frequent meals and to take as much miralax as I needed to make my bowels move. I was also prescribed nexium and zofran. I spent several hours in the bathroom daily, using suppositories, enemas, and manually removing stool from my rectum.
 
In June, I had some of my colon removed, rectal repairs, and a temporary loop ileostomy to allow the areas to heal and also allow me a break from my disgusting bathroom acrobats.
 
Well, since then my quality of life has improved 100%. I can eat normally now and even have to make sure I don't overeat since I don't think I ever truly felt hungry in my entire life.
 
I can sleep laying down and no longer suffer with relentless nausea and heartburn. I take zofran now once or twice a week compared to 3x a day before surgery.
 
Having the bag is not bad at all and I can go hours now without even feeling that I have the bag on. It just now feels like a part of my clothing.
 
Did you take a sitz marker test? If so, what were the results of that? I know I have read and was told by my doctor that if you are diagnosed with colonic inertia, that removal of the entire colon is recommended as leaving only a few inches usually causes the same symptoms of constipation and usually requires another surgery to remove the remaining colon.
 
Do you have any type of pelvic floor dysfunction? Can you get the stool out if you can get it to the rectum?
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

murphy's mom
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Date Joined Dec 2010
Total Posts : 5
   Posted 12/5/2010 2:44 PM (GMT -6)   
Thank you for taking so much time to reply to my post. I'm really happy that you are feeling so much better. I can totally relate to having forgotten what it's like to feel hunger.
I haven't taken the sitz marker test that was prescribed by one surgeon. The 2nd surgeon doesn't feel I need it. I personally can't go 5 days without doing an enema or taking huge amounts of laxatives, neither of which are allowed during the test. I would be completely unable to eat during that time, which would not give a realistic test result.
I'm scheduled for a gastrograffin enema this week to better visualize the colon. I hope that will be the last test. I'm also consulting with my 3rd surgeon.
I don't have problems with my rectum, thankfully. And my stomach transit is normal. I sure hope I'm addressing this problem in time before it progresses any further.
Best luck to you!

pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 12/5/2010 7:44 PM (GMT -6)   
booka,
 
how do you know the Gyn system of your daughter is affected as well? I also experience symtoms in this regard which had let me think about the possibility of the syndrome affecting the GYN smooth muslces as well...do you know if your daughter suffers from a neuropathic or myopathic variant of CIP?
 
And what do you do against the bladder problem? Does your daughter catheterize herself?? Is she painfree in this regard? Which problems did she have with the urogenital system before?
 

Nurse Cyndi
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Date Joined Nov 2010
Total Posts : 5
   Posted 12/6/2010 5:03 AM (GMT -6)   
Murphy's Mom, I had my Large Intestine removed, the small seemed to be fine, on Nov. 4th of this year. Mine was due to colonic inertia and chronic constipation. I had the ileorectal anastomosis so no ostomies for me. Not sure about the small intestine with the same problem but I am having very good results with mine. I eat and about 3 hours or so later I now go to the bathroom. I had to have the muscles around my pelvic floor and large intestine repaired due to them becoming very weak over the years due to the chronic constipation. I truly wish you lots of luck with this. Also, I hope you have a great surgeon like I did. I couldn't have asked for better.
Have you had your PSA checked lately?
Urological Nurses Rule!!!
Nurse Cyndi W, LPN

Bebe0111
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Date Joined Feb 2011
Total Posts : 6
   Posted 2/8/2011 6:59 AM (GMT -6)   
mad  Hi, this is the first time to this blog... I had a total colectomy Aug 2006 due to Colonic Inertia, I've had 4yrs of feeling absolutely wonderful and had lived life like I've never known how it is to feel well.  For the past 6 months I've not been feeling the best and have had a few 'accidents', so along to the Dr's then Specialists to find I have a Rectal Prolapse.... ouch!  I'm due to have sugery again in a week... but my last visit to my Specialist, he tells me that the Prolapse is secondary to worse problems... My small intestine is slowly giving up and I need to get my head around having an ileostomy... I had an ileostomy when I had my TC done...  Is there any other way I can prevent this... or is my health just slowly going to get worse???

Post Edited (Bebe0111) : 2/8/2011 6:12:02 AM (GMT-7)


gmark
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Date Joined Jan 2011
Total Posts : 55
   Posted 2/8/2011 10:12 AM (GMT -6)   
Bebe, I am assuming the doctor was meaning that your j-pouch was giving up. Correct me if I misunderstood your post. Sad fact is that a certain % of the pouches eventually fail and have to be removed. Some people have had pouch revisions, which can involve more major surgery, a temporary ileostomy, takedown, and another recovery period. My guess is the doctors statement for going to an ileostomy is due to several problems going on at once, likelyhood that a revision is no cure, and most likely your health will keep getting worse. Don't let worry about having an ileostomy keep you from needed surgery, and ruin your health. Good health, and a long life is what is most important. Best wishes.

Bebe0111
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Date Joined Feb 2011
Total Posts : 6
   Posted 2/10/2011 2:33 AM (GMT -6)   
Thanks for your reply... I don't have a pouch... I had a total colectomy and had an ileostomy for 3 months.  It was my large bowel that gave up, now my small bowel is doing the same... I guess for the last 6 months I've been managing it.... but, I've gone from having at least 3 motions a day to having one every other day... and when I do, it's very painful and alot of effort.  I also get the sweats and feel nausesa... What gives me an indication to empty is; I get a lot of pain on my right side which requires me to massage and manipulate what I can only say is my small bowel... otherwise I just sit and push with no result... other than a rectal prolapse which is what I have now... yeah

Teddy1986
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Date Joined Feb 2011
Total Posts : 5
   Posted 3/2/2011 7:39 AM (GMT -6)   
Hi All,

I am a new member, I have cronic constipation and have been advise to have a sub-total colectomy (where they re-attach your small intestine to your anus). I am only 24 and am totally fed up of taking enimas/laxatives to be able to have a BM and feel like I want this operation, but I am scared and feel like I need to know more from people who have had the surgery and what life is like afterwards? I like fruit and vegtables but have heard that I won't be able to have them after this operation?? Is this true? Also it will be laranscopic but understand there will be 4-5 scars (1 larger one near my bellybutton) - as I am a young girl, I wanted to know how obvious they are afterwards as well?

Any information would be so grateful of your own experiences with what foods you can / can't eat now afterwards and how long after and the issues with the scars afterwards (don't get me wrong, the scars are a small part of having to have this done and the quality of life I will have afterwards but it is just an aditional worry for me).

Thank you so much!

2b ColonFree
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Date Joined Nov 2008
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   Posted 3/2/2011 11:00 AM (GMT -6)   
hi Teddy and welcome,

the best way to learn about the surgery for colonic inertia and it's outcome is to read the "total colectomy" threads, google "total colectomy part 3", then 4 and so on. you'll find a wealth of information there.

if you have questions, you can also check in the total colectomy 2.2011 or total colectomy part 39 (currently active).

i had the total colectomy with attaching my small intestine to the rectum b/c of colonic inertia, but it wasn't successful for me and i now have an ileostomy, but there are many others who's surgery was a great succuss, i'm sure they will be able to answer your questions on the total colectomy threads.

good luck with everything!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Teddy1986
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Date Joined Feb 2011
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   Posted 3/3/2011 1:03 AM (GMT -6)   
Thanks Hodaya I will look on those posts!

Bebe0111
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Date Joined Feb 2011
Total Posts : 6
   Posted 3/3/2011 9:19 PM (GMT -6)   
Hi Teddy

As per my thread a little earlier, I had a total colectomy 4 yrs ago due to colonic inertia, which ended with me having a temp bag. I also have pelvic floor dysfunction. I'm recovering at the moment from having a Delorme procedure last week. I can tell you that I've had 4 good years but my diet has gotten narrower and narrower. I try to stick to things I know won't harm me, but this is not always possible. Most fruit are out and some vegs. Coffee and Beer are certainly out. This is not the same for everyone. I'm due to have an ileostomy in June, hopefully then my range of food will increase.

Scars - I'm a little older than you, but not being able to wear a bikini or what I felt flattered me also frightened me, however, my surgeon took these concerns on and did the best he could... I still wore a bikini...
Hope this helps...

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/4/2011 1:47 AM (GMT -6)   
bebe, i also had a total colectomy w/ileo-rectal anastomosis for colonic inertia. it worked for maybe 2-3 mons then the constipation was back big time and i had a very limited list of maybe 10 foods i could tolerate. i had a loop ileostomy 11 mons later and i can say that my range of foods has increased significantly. i believe yours will too :) i'm still very limited, but it's much better now than before the ileostomy. are they going to do a loop ileostomy or an end? are they leaving the rectum in or removing it? best of luck to you with your ileostomy surgery!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Bebe0111
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Date Joined Feb 2011
Total Posts : 6
   Posted 3/6/2011 12:22 AM (GMT -6)   
Thanks Hodaya, your information helps heaps.. I think I'm having an end, but not sure... they've taken 12cm of my rectum out and if I don't have the ileostomy sooner rather than later, then I run the risk of having it completely removed. turn

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 3/6/2011 12:47 AM (GMT -6)   
i want to have it completely removed too, and have an end ileo, but the drs are scaring me so much with the complications and all. well i've only asked one dr so far, so maybe i should see what other drs have to say about this. this nonfunctional rectum gives me a lot of grief :(
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Bebe0111
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Date Joined Feb 2011
Total Posts : 6
   Posted 3/6/2011 3:57 AM (GMT -6)   
confused  What are the complications? I don't think anything can be as bad as living with a dysfunctional pelvic floor and CI with a TC...
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