Severe Constipation after Total Colectomy

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missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 7/2/2008 12:53 PM (GMT -6)   
I am simply at my witts end. I had a total colectomy at the Mayo Clinic in February of this year for colonic inertia. From the time I left the hospital I have been constipated. My small bowels were extensively tested and all the results said the motility there was normal. At first, I could control the constipation with Miralax. The dosages slowly had to get larger and larger. The last month has been hell. I cannot go to the bathroom. I have tried everything you can imagine, every bowel cleanout method, even experimented with stimulant laxatives. All that happens is the liquid I drink comes out clear yellow, no solid. The solid will just not come out. It has been almost three weeks since I was able to pass any solid. I talked to Mayo and my gastro here at home, and no one knows what to tell me. Has anyone out there experienced this? What helps? I am desperate to go to the bathroom. I am not a big girl and I am so distended. I even went to the ER last weekend and they said I was not obstructed, just constipated. I went to a colo-rectal specialist Monday and he told me to take Metamucil (something Mayo told me to take only if I got diarrhea) and he would not offer any advice, he said it was fine if I went 5 weeks without a BM!?! I feel like my doctors are not taking me seriously. I have a very good diet and drink a lot of water. I get daily exercise. I don't take constipating medications. I simply don't know what to do. Any advice would be sooooo much appreciated. This is very much interfering with my quality of life. Thank you!!!

ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 7/2/2008 2:05 PM (GMT -6)   
Wow, that has to be so disheartening after going thru surgery. I had a total colectomy last Oct. I take stool softener pills. My surgeon and GI doctor said it would not hurt me to take them. I've found that I am much more regular and it is easer to go to the bathroom when I take them. Good luck!
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin


spasman
Regular Member


Date Joined Jul 2006
Total Posts : 361
   Posted 7/2/2008 11:59 PM (GMT -6)   
There is a website called www.jpounch.org maybe they have ideas.
 
Normally,they should do a barium small bowel or something.Did they offer you a bag?


-IBS induced by NSAID
-IBS-A,C with meteorism(trapped gas) and pubic burning-
 


spasman
Regular Member


Date Joined Jul 2006
Total Posts : 361
   Posted 7/3/2008 8:33 AM (GMT -6)   
Have you tried Dulcolax?Normally,if you take 2 it should turn you stools liquid and give you diarrhea.
-IBS induced by NSAID
-IBS-A,C with meteorism(trapped gas) and pubic burning-
 


rmbausa
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 8/15/2008 8:52 PM (GMT -6)   
A friend of mine is going through the same thing; she had the total colectomy due to severe colonic inertia and remains constipated, compounded by her eating disorder.  Any more ideas out there?  She is totally frustrated.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5419
   Posted 8/15/2008 9:01 PM (GMT -6)   

No ideas other then to say that it is not uncommon for CI to affect the small intestine, not just the colon.  People continuing to have problems should be persistant in seeking additional treatment at reknown hospitals for this condition.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 8/18/2008 12:39 AM (GMT -6)   
How does a person find a hospital that specializes in this? A friend of mine is going to be having a total colectomy for colonic inertia and is worried that if her small intestine ends up having a problem that she won't know what to do. She has consulted several colorectal doctors about having a transit test to check the small intestine but they tell her they never do that and it's not necessary.

I totally feel for you guys who had the total colectomy and are still having constipation. I have read that sometimes this occurs if the surgeon leaves in some of the colon (sigmoid, maybe?) instead of attaching the small intestine directly to the rectum. Do you guys know if that's how your doctors did it? I don't understand why a doctor would attach it to the colon, knowing a person has the colonic inertia. I will be praying for you guys!!

danaalbertine
Regular Member


Date Joined Apr 2007
Total Posts : 34
   Posted 8/18/2008 7:21 AM (GMT -6)   

I am from Germany and have had general dysmotility in all of my gut for over 10 years ( I am 24 now). I haven´t had a colectomy, but you NEED to have ALL of your digestive system checked out before surgery!!! There are tests to find out about the motility of your stomach and your small intestine (even though they aren´t always accurate!). I know from other people from the US that a lot of clinics do them, like Mayo or other University hospitals. If you have upper digestive dysmotility as well as colonic inertia, surgery might not be successful! A test for the stomach is a so called GES and for the small intestine they do a small bowel manometry.

Andrea


KAP
Regular Member


Date Joined Jun 2006
Total Posts : 78
   Posted 8/22/2008 1:24 AM (GMT -6)   
Andrea, thanks so much for your response. My friend is scheduled to have a total colectomy on September 8, but I told her about the importance of these tests and now she's trying to find a place that does these tests but can't find one. I will tell her to contact the Mayo clinic and see if they know of any place near here that does it. Her other problem is finding a place that takes her coverage (she's on Section 8 and has a plan called Caresource). Hopefully she'll be able to find somewhere to do these tests. Thanks again! :-)

mema03
New Member


Date Joined Jul 2010
Total Posts : 7
   Posted 7/22/2010 12:12 AM (GMT -6)   
I couldn't believe your article, i didn't think anyone else was going through what i have been through. i
I had a total colectomy June of 2009, here it is July 2010 and since surgery I have had four small bowel obstructions, now the colon surgeon says im constipated with impaction., he avoids my suggestions, questions, complaints and pain, I've about to give up. The doctors ask about depression and anxiety - NO CRAP! what do they think, i have been battling constipation for over a decade, dismotility, colonic inertia, mega colon, and bowel obstructions since surgery. my advice is to eat anything i want with fiber in my diet, after surgery for the first three months i had no problems with constipation just the opposite like they said is normal without a colon. please let me know if you have received answers or a cure without surgery. I have had two surgeries just for this, including interssusuption. please e-mail me at lavern_66@hotmail.com or find me on myspace lavern barton, Missouri. You are not alone.

mema03
New Member


Date Joined Jul 2010
Total Posts : 7
   Posted 7/22/2010 12:19 AM (GMT -6)   
Dont let these docs fool you, i have the same motility problem IC with small bowel as i did colon and i had total colectomy, rectum reattached to ilium, u can not live without a small bowel like a colon so doctors ignore and do not inform u by the time u have a colectomy it has already effected the small bowel or even started there in the first place, colon rectal surgeons need a paycheck too.
Lavern
St. Charles, MO

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3071
   Posted 7/22/2010 5:51 AM (GMT -6)   
Lavern~welcome to the forum. I just wanted to let you know that this is a very old thread so you may not get a response...you should check out the Total Colectomy threads...they are very active! I think the current one is 35? but there are older ones too if you do a search.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 201
   Posted 7/22/2010 7:44 PM (GMT -6)   
My two cents:

Tell your friend to get a new doctor. Not getting a transit study done is a red flag.

Ask your doctor to prescribe you Golytely or get the "prep" at your local drugstore as if you were going in for a colonoscopy. Have you tried enemas? You might need to get the large enema bag so you can fill it up with lots and lots of water.

Try several laxatives at once. Taking even 2 a day when I'm backed up sometimes doesn't do anything for me.

Good luck.
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids

Tried: Pentasa, exercise, diet changes, pro-biotics, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran

Future: Biofeedback (beginning mid-July)

"You can either sit on the bench or get up and play"

Atlanta, GA


mema03
New Member


Date Joined Jul 2010
Total Posts : 7
   Posted 7/24/2010 8:20 AM (GMT -6)   
I have had all these studies, the purpose of colectomy,sitzmark study alone after 6 days still had 23 of the 24 markers throughout the small bowel and colon, repeated after colectomy, same results. without a colon you must be careful to over induldge in laatives of any form, as i have tryed many, from liquid form, to pill
form, supositories to enema's. the prep for colonscopy is useless in all forms forms for me, they all induce vomiting, had my colon removed completely impacted because bowel preps were not successfull. how do i get to total colectomy threads? is it the same site, i can be illetrerate with this internet stuff, learning though.
any other suggestions. or any advice on diet habits, its been just trial and miss with me, i avoided what i know seems to make things worse and to eat foods with fiber, which seems to distend, bloat and cramp me even worse with yet still no results. I go one to two weeks at a time with very small and little bowel movements if at all. Seems to induce high blood pressure. Pain and anxiety?

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1161
   Posted 7/24/2010 10:02 AM (GMT -6)   
Mema, here is the link to the total colectomy thread.

http://www.healingwell.com/community/default.aspx?f=33&m=1842579&p=1

Remember, there are several pages, so after page 1, you need to click on page 2. These total colectomy threads are all on the ostomies board. You can also type in total colectomy part 1, part 2, part 3, etc. into the search toolbar at the top right and go back to get all sorts of useful information about total colectomies, constipation, poop problems of all kinds. LOL

Welcome, Tracy
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
Take-Down-TBA
 


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 7/25/2010 11:53 AM (GMT -6)   
 
Wow, hi, that is sad to hear.  I too had my total colectomy in Feb of this year.  My doc told me constipation would not be a issue.  So it has not been.  I stick to chicken or turkey never fried broiled or BBQ for the chicken, and I make turkey half san for lunch and hot turkey san for dinner so that keeps me free to poop.  Usually one or two days a week I will have something different for dinner, but never anything with grease, or the vegetables that give me gas.
 
I don't know what your eating but try to do the chicken and turkey thing and see if that will help you
 
mema03
Hope that your doing better.  I canno't believe that people with Total Colectomy are having issues like this.  I pray that mine stays good, dont ever want it to go backwards on me....Good luck and prayers to all of you
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


zuzupetals
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 7/25/2010 3:23 PM (GMT -6)   
Mema03,
If I am reading the post right, Are you from Missouri? St Louis? I have seen alot of doctors here about these issues. I didn't have you email address or I would email you. I would be very interested in talking with you . Thanks
Susan

becksaroo
New Member


Date Joined Sep 2011
Total Posts : 1
   Posted 9/20/2011 10:04 AM (GMT -6)   
I also had a total colectomy qt University of Chicago and have tons of problems since. I was only 14 when I had the surgery and was really looking forward to eating what I wanted and getting off medications with annoying side effects, like the prenisone that made me look like a chubby chipmunk.

Although I did get off the meds, I traded it in for the side effects of surgery including chronic pouchitis, constipation, anal fissures, and ongoing nausea. I often get hospitalized, but they never are able to help me find a remedy.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 9/20/2011 10:28 PM (GMT -6)   
MissVirginia,

You need a gastrograffin enema right away to be sure you don't have a stricture (narrowing) at the anastomosis where they joined the rectum to the small intestine. If you do, you need it dilated.....SOON.

A number of people on this board have had their ileorectal anastomosis not work out due to either stricture or malfunction of the pelvic muscles following surgery or malfunction of anal sphincters that worked fine prior to surgery but not afterwards.

You have to get more assertive than you have ever been and get the help you need and deserve. I know, I have been there. If Mayo will not deal, ask them for a referral. Have SOME doc, even your PCP, order the gastrograffin enema xray. You also will need a repeat defecogram to see if any of your pelvic rectal muscles are now now functioning. ANY doc can order this for you. ALSO you will need to talk to the radiology DOCTOR, not just the tech, and tell him or her exactly what surgery you had done and how long ago it was. In this way these tests can be done safely. In my quest for help, I found radiology docs to be wonderful.

ALL MY BEST. You have a fight ahead of you, but if you persist you will get resolution in some form. I feel for you. Been there and done that. Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 9/20/2011 10:34 PM (GMT -6)   
MissVirginia,

Didn't you say that you had normal small bowel function on all of the pre-op tests? It would not slow to this extent. I really think your issue is at the outlet like I mentioned above. The stricture of scar tissue within the walls of the bowel where the small is hooked to the rectum is hardly ever mentioned to patients prior to surgery and yet is a VERY common complication. I ended up with a permanent bag, but after 13 months of obstructing I was lucky to get it. It is hard to get help when you get a poor result from a prestigious institute who will then not deal. So do give them first crack at dealing with the issue that was created by their surgery. I'm not saying they did anything wrong, scarring is just how some people heal, but try to get Mayo to make the referral or deal with this themselves. The technicians at Mayo are super. So keep after the docs to keep the inhouse so to speak. Then, you will have tried, then if you go elsewhere for help, you can get all your office visit records of your attempts to get help from them. Also start keeping a calendar of all calls you make to them for help. Best to you. Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 9/20/2011 10:37 PM (GMT -6)   
MissV,

Ask the GI that told you that you could go 5 weeks without a BM to put that in writing! Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 9/21/2011 3:43 AM (GMT -6)   
hi becksaroo,

i'm sorry to hear about your ongoing complications :( you had surgery at such a young age. from the names of meds you used to take and from the type of suregry you had (j pouch), i get the impression you had UC/Crohns. am i right? constipation after surgeries can occur due to scar tissue that can cause adhesions and strictures along the intestine, esp at the anastomosis site. did they ever do you a gastrographin enema? if not, then they really should!

also, it could be an anatomic or functional problem of your pelvic. i don't know how exactly the defecation process works for j pouchers, but I for instance, have anismus, which in short means my pelvic muscles are too tight and won't let go of the stools. the tests needed to diagnose anatomic or functional disorders in the pelvic are: ano-rectal manometry, defecography/MRI defecography (or either pelvic ultrasound, cuz again, i'm not sure how it goes for j pouchers). about anismus, most times surgeons can detect an anismus easily by a simple finger check.

in my opinion, if after doing all tests possible and all treatments possible and you're still this miserable, i would go for an end ileostomy if i were you. most chances an ileostomy can make a big difference in your simptoms. i have an ileostomy and after being so miserable for so many yrs, an ileostomy is heaven for me. it's so not the end of the world as i thought it would be and i'm totally glad i had it done. it gave me my life back.

i wish you best of luck down the road and pls keep us posted on how you're doing.
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
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