Long-term outcome of colectomy for colonic inertia/general motor dysfunction

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pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/17/2009 9:04 AM (GMT -6)   
Hi guys,

I am a German girl suffering from Chronic Intestinal Pseudo-Obstruction (general motor dysfuction, not only CI affecting solely te colon) that affects my stomach, small and large intestines and my bladder.
Although I was probably born with CIP I just got my diagnosis in December 2008 from an Italian motility expert after several years of increasing suffering and being accused of having anorexia/psychic problems. I assume you all know this difficult route.

In December 2008 I got an ileostomy after three extensive bowel resections that had not brought me any relief. I am glad, the ileostomy finally did help and I have now a better quality of life so far.
However my sugeons decided to remove the last part of my colon, too as it was grossly dilated and hardly supplied with blood. In this way they did not consider the recommendation of the motility expert in Italy I had gone to and had finally given me my diagnosis.
This expert had recommended a temporary/decompression ileostomy to decompress the residual large bowel but any further resections should be avoided. Since CIP is mostly a progressing disease and tends to affect the entire GI tract progressively with an increasing severity resections of the colon could accelerate this process. The disease might shift to the to the small intestine with a greater extent and with an increased severity so that resections could make things worse. At the moment my small bowel is less affected than the large bowel was.

I already read some stories of people here who underwent colectomy and experienced worse symptoms after 6months or a year or who developed severe gastroparesis symptoms then.
I have the impression that my original stomach function has been deteriorating even independently from the bowl function.
The removal of the colon and the lacking pressure of it upon the small intestine and the stomach helped a lot as the stomach symptoms had been increased by this. But I do not experience the great relief of the stomach problems I would have assumed. I rather have the impression that the original stomach function has been continuously deteriorating.

To come to an end: I would like to hear about your experiences for colectomy (due to colonic inertia etc.) and its long-term outcome(impact on small bowel/stomach motility)
I know that there are some people who experience constipation and obstrcutions even after colectomy....)like Lizzi etc.)

I would like to hear from your experiences. Thank you very much and sorry for my English!
Sarah

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 4/21/2009 2:32 AM (GMT -6)   
hi there,
so sorry to read about all of your probs. i have colonic inertia, but it seems only my colon in involved. a surgoen told me once that there are rare cased where the whole digestive system is involved. i haven't had surgery yet, i hope it'll happen soon. from what i've learned reading about ppl like you is that they are given reglan for the slow motility in the stomach and small intestine, have you tried this medication? if so didn't it help?

i hope your quality of life improves and you feel better!!

best wishes to you!!!
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/21/2009 12:15 PM (GMT -6)   
hi hodaya,

thank you very much for your reply. I am already given reglan. It helps in some way but it does not make my symptoms disappear. I guess without it they would be even worse.
Do you have any problems with nausea, extreme fullness, abdominal pain after eating "too much" (in fact it is a little meal)?
Have you had any testing for your small bowel/gastric emptying etc in the forefront of your upcoming surgery?

Thank you very much. I hope your surgery will give you the greatest relief.
Sarah

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/21/2009 12:44 PM (GMT -6)   
Sarah,
so besides reglan there's nothing more to offer?

about the nausea, what's interesting is that i never used to have any issues with that up untill couple of mons ago or so, but the thing is that i get nausea mostly when every weekend when i take a great amount of laxatives to clean out (more or less), then i get so nauseated and can barely eat. i never vomit though. other than that, when i don't take my laxatives i don't get nausea.

extreme fullness - yes, though not in the stomach, but in my colon and it gets really painful that i can't even stand streight. but every once in a while i do get extreme gass in my stomach that won't move foreward, and that is REALLY painful. yes, i can't eat a normal meal as i used to few years ago. i do feel my condition is getting worse rapidly and i, like you, also suspect the prob can spread to the small intestine and stomach with time, but i was never really sure if it's true.

do you think the more i wait, the more i risk my smalls and stomach to be like my colon? i mean, how does it work? i never had small bowel/gastric emptying tests.

thaks so much for your well wishes :o)

i didn't completely understand.. you said you had few bowel resections, do you have some of your colon still?
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/22/2009 8:53 AM (GMT -6)   
hodaya,

no, there's nothing more to offer than reglan and the other moving agent domperidone. The options are very limited to stimulate the motility of the stomach/small intestine/colon.

The extreme fullness in the colon you mentioned - well I knew it very well. It was just painful becuase nothing moved forward. It was a constant pressure pain as if the colon wall was strained and in fact this was the thing what actually happened. In the end my colon was grossly dilated. Do you had any barium enemas that showed dilation of the colon?

For me, the more I wait the faster the deterioration went. In the last year I had three bowel resections. The second surgery was a subtotal colectomy that left 20cm of my colon and was thought to be the cure. It was not at all - even in the hosiptal I had to already be given enemas that failed either.
I was probably born with CIP and I had troubles with my digestive tract my whole life. But the last three years the the condition was getting worse very rapidly. I guess the bowels were just tired from fighting and could not compensate it any longer. I guess if my surgeons had waited longer/ a couple of month with the last surgery then it would have been possible that the residual colon would have ruptured.
My surgeons told me that they had never seen such a case/rapid deterioration before and that was the reason they had not believed me before.

In the last surgery the enire residual colon was removed because it was grossly dilated. So basically it was a colectomy and I have now no colon at all. But since I also have retcal inertia, I am unable to expel any stools/mucus so I will have the bag for the rest of my life. And it is likely that my residual rectum will be removed as well as I cannot pass the mucus (that is still produced by the mucosa of the rectum) and this causes chronic inflammation and rectal spasms.

greets
Sarah

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/22/2009 1:40 PM (GMT -6)   
Sarah,
yes, i had barium enema over a year ago and it showed a very delated colon, but only in the descending colon and sigmoid colon. couple mons ago i had a reapeted colonic transit srudy and my drs told me that they saw something new that we weren't aware of, that my transverse colon has totally collapsed and is sitting on my pelvic, so i'm a liittle confused.. i mean could it be that my transverse colon has colllapsed only recently during this last year? that's scary, cause i already had a bunch of tests a year ago and i would never imagine it could change like that in such a short while.

i'm so sorry you have your whole system involved. where you prepared for the possibility that you may have to have a bag for life, or did it come as a shock to you? how do feel about it, are you o.k with it?

i'm thinking about the surgery and everything all the time and up untill few mons ago, if someone would have mention the bag to me, i would be terrified, but lately, i feel so bad, i just told my mom few weeks ago that i don't care any more and even if i end up with a bag (i hope i won't have to, but still) my life will be so much better than the way they are now. i just want to feel good again and i think it's worth it.

so what did you say your next step is?
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/22/2009 2:48 PM (GMT -6)   

Sarah-

Hi sorry it took so ling to get to you, I have been in the hospital minus a couple days since April 7. I initially had the TC for colonic inertia and at the time did have some pelvic floor dysfunction, but they thought this would resolve with the TC. I had three months of feeling wonderful and the constipation returned. I just recently had a bowel obstruction that was so bad I had to have emergency surgery and now have a temp/maybe not loop ileostomy. Interms of my small bowel I had alot of testing becuase they were afraid of my slow transit spreading, much like what you sound like. I had to swallow a radiactive egg and take xrays every 15 min, I had an EGD, a barium swallow, and a small bowel follow though. This January my transit time from mouth to ileum was normal at a little over an hour. I hopw this helos and I wish you the best.

Lizzie


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Dx Anismus- Second opinion U oF M
Recommended at home biofeedback for 2 months, BUT before I could
Admitted with Small Bowel Obsruction April 4, 2009.
Suggested ileostomy April 12 with no resolution.
Loop ileostomy April 13, 2009 and still recovering.
Right abdominal abscess and hospitlilization April 21
Hoping for consulation to Cleveland Clinic for K-pouch and U of M for re-evaluation.
 
"The Greatest Healing Therapy is Friendship and Love"


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/23/2009 9:01 AM (GMT -6)   
hodaya,

thank you for your answer.

The collapsing of your transverse colon you mentioned - I also had it. It is basically due to the pressure and the inability of the colon to move the stools along. That os why the tissue is very damaged and over time it widens more and more and becomes redundant, slack and atonic. And when your colon is atonic then it can't keep the tonus to hold the transverse colon in the proper place and it goes down to the pelvic region and additionally hinders the passage.

I always had the worst dilatation in the ascending colon/passage between the ileum and the caecum because my entire colon did not work. The small bowel was still better than the colon and it tried to push the stuff into the colon - where it immediately stucked.

And yes, it is possible that this process can happen within one year. In the last year I had three barium enemas - each time before the bowel resection and within a half year the dilatation has reappeared. I guess if the damage has reached a certain extent that it can go very fast.

Lizzie,

thank you very much for sharing your experiences with me. I read your story and i am very sorry for you. But I think you have to be consciouss about the positive sides of the ileostomy - no pain/struggle with the bowel movement etc. Mine was planned as a temporary ileostomy but it now turns out that I will have it for the rest of my life. i don't mind because I have gained much quality of life compared to the time before the ileostomy. And I had always thought about this possibility before.

I also have rectal inertia and that is why I knew the ileorectal anstomosis would not work for me and the j-pouch is an experimental thing with motility issues - especially if you have dysmotility in the small bowel, too.

I also had a partial small bowel ostruction two weeks before my ileostomy surgery but luckily it resolved. But partial obstructions/subileus-like bowel situations are the clinical image of CIP.

Do you know what caused the obstruction? If your small bowel works O.K - was it caused by your anismus that was also responsible for the persisting constipation?
The test with the egg - was it done to measure the small bowel transit or the gastric emptying? Have you had any problems with nausea, fullness after eating the smallest "meals" etc?
Were these tests all negative so that your stomach and your small bowel work well?

Thank you very much for your info. I hope you will have the chance to get a k-pouch.
Sarah

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/23/2009 9:09 AM (GMT -6)   
lizzie,

the tranit time of about an hour - was it measured by the barium follow-through or by the test with the egg? This January you had already had the colectomy, am i right?
The tranist time before the colectomy - it was normal either?
thanks for the info and best wishes for your recovery...
Sarah

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/23/2009 2:23 PM (GMT -6)   
thanks so much, Sarah, for all of this information, it's all so interesting!! you seem to know a lot. did your dr explain it all to you about how the colon becomes so redundant?

i'm actually starting to panic (dont worry, not a REAL panic attack), i mean it's SOOOO scary how fast everything is deteriorating, isn't it????? gosh, something has to be done already.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/24/2009 9:08 AM (GMT -6)   
hoddaya,

I got most information from my own research on the internet, from published articles by motility experts etc. My surgeons told me only that this was a motility disorder and that it tends to worsen over time, that there was already the dilatation etc. and that it was clear that all conservative trials had failed.

A dilatation that is worst in the decending/sigmoid colon indicates that your ascending colon is less affected that the rest of the colon. So the worst transport problem occurs when the stools reach the descending colon and they get totally stucked there. My dilatation of the caecum indicated that the transport problem was so bad already in the ascending colon that the stuff immedidately stopped when reaching it.

Furthermore, my colon was elongated - over time its lenght had increased due to the motility problem. Do you also have an elongated colon?

Sarah

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/24/2009 10:13 AM (GMT -6)   
yeah, i know, my drs don't tell me much either and i've learned about it by my self from researching and reading lots of articles too.

yes i have a elongated colon. you're right, the place the markers most get stuck is in the descending colon. in my test most of them were in the transverse colon after 5 days and some of them still in the ascending colon.

it was hard for me to figure out by my self where their location was, cause i didn't know my transverse has totally collapsed, so i thought they were in my small intestine, but then when i saw my gi he explained it all to me. but your transit time is worse than mine.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


colonnomore
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/24/2009 10:28 PM (GMT 0)   
Hi to all who are reading,
Today is my first day on this site and my first post. I'm so sorry to hear of your progressive decline in health.
I to have experienced colonic inertia for a number of years brought on by a previous surgery where a nerve was severed, tho the surgeons refused to admit it.
Let me begin by saying that I am a nurse of 26 years. I had a surgery approximately 20 years ago and shortly afterward  I started having bowel touble which grew progressively worse.
Within a year, my only relief was with the use of laxatives to the point that within 3-4 years I was taking 4-5 Correctol daily.
In late December 1999- everything came to a screeching halt. I was at a standstill. I called a friend who was a PA and she wrote me a script for COLYTE (a gallon of prescription laxative usually taken prior to bowel surgery). I drank that which was just after the new  year in 2000 and needless to say NOTHING!!! Ended up at my doctor's office and the next day was at the medical university in my home state seeing a colon specialist. within the next 4 months went through all those GOSH awful test, defogophy, rectal nerve test, blah, blah, blah.
Had a toal abdominal colectomy with end to end anastomosis, pelvic hernia repair, vaginal suspension, rectocele repair. You name it, my doctor fixed it down there. Thank God for Dr. Lahr.
He is a walking life saver. God has truly blessed his hands.
 
It has been 9 years, 1 motorcycle accident later (15 months after my surgery) Thank goodness I didnt undo anything he fixed. Yes I was studip enough to get on a motorcycle an play Evil Knevil.Got broken up and took 10 months to heal from that one too.....
but the surgery is still AOK!!!!
I'm sooo glad I did it. Still working, only have to watch certain things that i eat; popcorn, raw veggies, corn. Too much roughage is tough on the system and causes extreme diarrhea still after 9 years.
 
But I would STILL do it again. The recovery period was tough, dont get me wrong but looking back, life is much better, and i have no regrets! smilewinkgrin

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/25/2009 1:41 PM (GMT -6)   
bless your heart, colonnomore, you've been through so much.. thanks for sharing your story. you're very encouraging. i hope i have the courage to just go for it already, but i'm working on it, something has to happen soon.

lol, inspite of everything you've been though, you sound like in such a good spirit, but gosh.. please take care of yourself, no more accidents, o.k?

be well :o) !!!
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/25/2009 3:54 PM (GMT -6)   

Sarah-

I had a gastric emptying test (prior ot TC) and small bowel follow through (with barium) This past Jan 09 year after my surgery and before my ileo and my transit time from mouth to ileum was just over an hour and normal. I am trying to realize this save my life, but its just so hard. I am on a lot of meds that keep me even keel "semi-normal". I had aleak today and started crying, I looked for bathing suits since summer is approaching in MI and started crying. I have a wonderful support system and this site has saved me.roblems and pain for months and I think it was just

And yes, the obstruction they thought were caused by strictures, scar tissues, etc, but they had to do an open laparatomy and they found first by xray O had an ileus in sm bowel and in stomach, but that my rectum was the sole cause of the obstruction. They let it go from 4/7-13 and then emergently took me in that night. It happened at work after having a mere half a cup of soup, but I had been havins pain and issues for months that went without recognition.

I have my appt in Cleveland and I hope I can get a k-pouch....I feel for all you have been through. This has turned my life upside down.

 

lizzie
Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Dx Anismus- Second opinion U oF M
Recommended at home biofeedback for 2 months, BUT before I could
Admitted with Small Bowel Obsruction April 4, 2009.
Suggested ileostomy April 12 with no resolution.
Loop ileostomy April 13, 2009 and still recovering.
Right abdominal abscess and hospitlilization April 21
Hoping for consulation to Cleveland Clinic for K-pouch and U of M for re-evaluation.
 
"The Greatest Healing Therapy is Friendship and Love"


maddy123
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/26/2009 6:33 AM (GMT -6)   
Greetings Everyone,
I am new to this site, I am 33 years old and have suffered with severe constipation my entire life. After the birth of each of my children it would become much worse. Sometimes it would be a two months before I would have a movement, and it usually would involve alot of laxatives and a night of vomitting. Needless to say it just became a way of life for me. I have been in and out of the doctors with this problem since I was 16. Quite honestly I was told by numerous doctors that women get constipated...Like somehow that is Ok ??? Doctor after doctor, test after test, and year after year this just became my life.

Until a year ago, when I was seeing the doctor I had seen for years for a rountine colonscopy.(which was useless) and no movement. No BM after the Go Lytelightly, 4 ducolax, a bottle of Miralax and 2 anemas. He was stunned so he told me to see a doctor at a University hospital . After a year of new tests: such as the sitz marker, a defocography( the first one I did not in even feel the paste in my rectum at all, and could not pass any of it) mamometry, 8 weeks of biofeedback 3 times a week, pudendal nerve study, the radio active egg study(the one where you eat the egg, and you have images taken all day,

Long , long story later I just had a second defo and waiting the results????

Julie D.
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/28/2009 3:59 PM (GMT -6)   
Hello all,
 
I, too, am new to this site.  I am a 47 year old female who has just been diagnosed with colonic inertia after a 15 year history of increasingly worsening chronic diarrhea.  After a barium enema, a sitz marker study, and a colonoscopy, I have been referred to a surgeon for a subtotal colectomy. 
 
The surgeon says, "not so fast!"  He thinks that the G.I. doc may have been a little hasty in referring me to surgery.  He agrees that my transit time is extremely slow; the markers did not make it past my transverse colon in 5 days.  He wants me to completely understand the risks of this major surgery and that he cannot promise that I will feel better after the surgery. 
 
I know and trust this surgeon.  He did my bariatric surgery 5 years ago and we have "been together" since that time as partners in my bariatric treatment.  He really wants me to do the pros and cons of my symptoms versus the possible outcomes (which the G.I. doc didn't give me).  He is not denying that my symptoms are very painful and distressing. 
 
Sometimes my pain is so bad that it absolutely shuts me down.  If I don't take a laxative, I just don't go.  Previous doctors have tried me on every non-invasive treatment that I'm aware of.   Although, I have never taken any medications other than laxatives.  They never seemed indicated. 
 
So.... I have a big decision to make.  Are things bad "enough" to go through with this surgery?  Will this just get worse over time?  If I go forward with the surgery, will I have multiple BM's a day?  Are those BM's "urgent?"  Will I be trading one kind of discomfort for another?  What once seemed like a sure thing now suddenly seems like a big question mark. 
 
Thank you for listening to my ramblings.  I have so much to think about.... and there's so much I don't know.  This just happened yesterday.  I'm glad I found this list.
 
Jules

spasman
Regular Member


Date Joined Jul 2006
Total Posts : 361
   Posted 5/29/2009 9:20 PM (GMT -6)   
Jules,Google Resolor and Linactoide.

Those are C meds soon to be available.
-IBS induced by NSAID
-IBS-A,C with meteorism(trapped gas) and pubic burning-
 

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