Chronic intestinal pseudo obstruction-CIP

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amcgleno
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Date Joined Feb 2009
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   Posted 8/5/2009 8:20 AM (GMT -7)   
Is there anyone else out there who has CIP? It's been up in the air for me on if I had CI or CIP. Confirmed yesterday that I indeed do have CIP. Had a subtotal colectomy in April 09. Worked fine for about 8 weeks now is slowed down

Not many info on CIP since it's so rare

any feedback would be great!

Amanda
Amanda May


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   Posted 8/5/2009 8:55 PM (GMT -7)   
i'm sorry that's the diagnosis you got. how long have you been suffering from constipation till you had the colectomy? did you vomit before the colectomy? are you still? what did the dr say? did he suggest any treatment for this? did he give you reglan? is it like inertia of all the whole dygestive system? i think it won't hurt to hear another dr's opinion, just to see if he think the same.

i'm so sorry and i hope there's something that can help you with it. you're in my prayers.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 8/6/2009 12:45 PM (GMT -7)   
hi amanda,

I too have CIP. You are right it is a very rare condition. I was once told that I suffered from CI/isolated colonic dysmotility and I had a subtotal colectomy and a further resection six months later. Both surgeries did not bring any relief for my spasms and my severe constopation, nausea etc...
Then being labeled as anorectic I had to go to a European motility expert in Bologna (I live in Germany) who finally diagnosed me with CIP that affects my stomach (=gastroparesis), my small intestine, my large bowel and my bladder. I then had a third surgery (permanent ileostomy) which finally gave me some significant improvement.

You say things have slowed down..do you suffer from constipation again? As far as I know: an ileostomy should be preferred to a total colectomy with ileorectal anastomosis when you have CIP.
How did they make the diagnosis?

Many hugs

Sarah

pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 8/6/2009 1:03 PM (GMT -7)   
oh I forgot to mention that due to my slow stomach I am now fed via a nj-tube in addition to what I can still eat orally. if you suffer from weight loss, nausea etc this can be an option when your small bowel has sufficient residual motility/capacity to absorb the nutriens it gets via enteral feeding.

sarah

XtremeMisery
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Date Joined Sep 2007
Total Posts : 687
   Posted 8/6/2009 1:18 PM (GMT -7)   

Hi Amanda-

They thought I had the beginnings of CIP, but I had colonic and rectal inertia. I had a TC with no improvement and ended up with a life threatning obstruction which led to an ileostomy. I have had the ileostomy for four months and with some miracle my rectal inertia has disappeared. I have not had the urge to go to the bathroom in eight years...I may be able to have a reversal. I was seen at Cleveland Clinic becuase I was told I had no other choiced but to live with my ileostomy. It gave me relief for sure, but I did not want to live with it. I saw two world renown specialist, one colorectal surgeon and the other was colorectalsurgeon specializing in pelvic floor dysmotility. Their names were Feza Remzi and Massarat Zutshi and they were wonderful. I wish you the best.....hope that you can get some relief.

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia (Anismus)
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 with abdominal abscess. Released 4/24
Cleveland Clinic twice for 3/4th referral. Possible reversal pending defecography July 31 in Cleveland.
 
"The Greatest Healing Therapy is Friendship and Love"


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/7/2009 8:17 AM (GMT -7)   
oh, I forgot to mention that I would be really interested in exchanging experiences etc...by the way, I am 23 and female ;) ...
sarah

pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 8/9/2009 6:53 AM (GMT -7)   
hi amanda,

thanks for sharing your history and experiences with me. Like you I had suffered many years before one surgeon suspected a motility disorder of the colon to be the cause of my severe constipation, spasms and my digestive symptoms. To be honest I am probably born with this problem which has gradually worsen over time - especially at the age of 13,14 there had been a significant deterioration of my constipation and chronic abdominal discomfort/pain.
Four years ago I had expereinced a total deterioration and progression of my symptoms. The constipation was now not treatable by any means and I suffered from severe abdominal and urinary spasms, nausea, distension, I lost much weight etc....

I took two further years and many false diagnosis and really bad experiences with doctors and so-called best clinics in Germany (I was accused of having anorexia, IBS, psychic problems/psychosomatic disorder...), to get into the right direction with the help of this surgeon. However, he had only expereinces with colonic dysmotilities/CI and did not know about motility disorders that affect more than the colon but the whole digestive tract.

I then had the two surgeries on my colon and both turned out to be ineffective. I had practically no colon except 20cm but I continued to experience severe constipation that was unresponsive to enemas, laxatives etc.
My surgeon could not imagine why things didn't work and now thought about a psychological reason.
I was again at the beginning. In my desperation I searched in the the internet and found articles from Prof. Stanghellini, a European motility expert, like Prof. Shuffler in Canada who also did much research on CIP, a motility disorder that affects much more than the colon.
I wondered if this could be the reasn for my persisting problems and I mailed him. And I was surprised that I really got an answer and he invited me to come to Bologna so that he can do special tests on my small bowel and stomach.
During my staying I had x-rays, a CT, the small bowel manometry, gastric emptying study and some other tests that prove his suspicion that I have CIP.
He also said that I had air fluid levels/bowel loops and a massively dilated residual colon (the 20cm) and that the visible bowel loops on x-rays were a certain sign for CIP by definition.

Do you have any nutritional support? Do you still suffer from nausea? Which symptoms did you have exactly before your colectomy (in addition toyour severe constipation) and which symptoms did improve, which didn't since you said that you have experienced a 75 percent improvement?
Have you ever had any problems with your bladder?
Have you ever had a biopsy done (maybe during your colectomy) that could give some infos on the background of the disorder (whether it is rather neurogenic or a damage from the muscles)?
How often do you have a bowel movement now?

Many questions... I am just so curious since I would like to know if I am in an early state of CIP and if yes (because the ileostomy and the total colectomy did bring some significant improvement though it has not wiped out all of my problems but like you I think this improvement and the stop of loosing weight indicate that the small bowel is not yet affected in this massive extent the colon was indeed) if it could progress over time...same questions you ask yourself.

Many hugs
SArah

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/9/2009 6:58 AM (GMT -7)   
have you ever had another incidence/partial obstruction like this one in June - before and after your colectomy? I know this is not fun since I also experienced a partial obstruction (without any blockage, it was just functional) last December, a short time before my staying in Bologna.
Have you ever had a small bowel manometry?

By the way, I also read tons of artciles by Michael Shuffler and I think he is the best doctor you can have in Canada when you have CIP.

;)
Sarah

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/9/2009 8:10 AM (GMT -7)   
i just want to add that I can understand your self doubts pretty well...that you would like to get a firm diagnosis....like you I always ask myslef whether maybe it was nonetheless CI and the symptoms were all caused by the backing up of the colon.
However, I remember Prof. Stanghellini's words. He said that CIP was extremely rare and also extremely indidividual. There are some common symptoms but other symptoms can vary and depend on the main localization of the disease. When the distal parts of the GI tract, namley the colon and the lower parts of the small bowel are predominantly affected then the disease manifests mainly with severe constipation along with other symptoms like nausea, feeling full after eating a little bit, distension and weight loss due to little food intake and malabsorbtion secondary to bacterial overgrowth caused by the backing up of the colon. In contrast when the proximal parts of the GI tract and the upper parts of the small bowel are not working then weight loss (due to malabsorbtion caused by the slow motility of the small bowel itself) and vomiting are the predominant symptoms.

Do you also have the feeling that you should loose weight compared to your food intake after your colectomy and that your body seems to "store" the little nutriens it gets whereas it did not absorb anything you ate prior to your colectomy?

Many hugs
Sarah

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/9/2009 8:17 AM (GMT -7)   
I know that the common opinion is that a colectomy doesn't do any good and doesn't bring any relief when you have CIP. However, I think (and according to Prof. Stanghellini) it depends on to which extent the small bowel is already affected. For sure, CIP is generally a progressive disease that tends to worsen over time but maybe you can slow down (or stop?) this deterioration process with a colectomy when your small bowel is yet less affected.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/9/2009 8:32 AM (GMT -7)   
nonetheless a colectomy with an ileorectal anastomosis is more likely to make problems/subocclusion than a colectomy with an ileostomy.

I am also afraid of not being taken seriously when I will notice a deterioration (in fact, I already noticed some changes in increasing abdominal cramping/spasms) because of the lack of the malabsorbtion problem and the overall improvement after colectomy/ileostomy.
Furthermore, it is a problem with myself since I wonder if I can still trust my feelings I could absolutely rely on before the last operation. I just knew! that there was still a huge problem. It may sound odd and I am very grateful!!!! that I feel better after the surgery but in some way I miss this certainty I had about my own feelings.
Do you feel the same way?

MAny hugs
Sarah

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/9/2009 11:33 AM (GMT -7)   
oh, one more question: did you also have a small bowel follow-through? did/do you have dilated bowel loops/a chronically dilated large bowel?

amcgleno
New Member


Date Joined Feb 2009
Total Posts : 16
   Posted 8/9/2009 9:14 PM (GMT -7)   
when a person has colonic inertia and they are diagnosed with small bowel inertia, is that the same thing as CIP? or its two different things because cip affects the whole digestive system? How can they tell the difference if i have CIP or small bowel inertia if indeed they are two seperate things? Its so confusing! I worry what life is going to be like when we are 30.
Amanda May


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/10/2009 12:44 PM (GMT -7)   
Amanda,

unfortunately, I don't have facebook but I am also a member of inspire com you recently joint. There you can also have a closer insight in my history, I think it can be found in "journals" - "CIP - the story of a German girl".

I could give you some info I got from Prof. Stanghellini about the general character of the disease but that doesn't mean that your disease must automatically behave this way. It's all about statistic and probability and your disease is individual. But nonetheless you can say that it tends to progress over time and to spread.
I think I had some really good articles about the character of CIP. I must look for them if I can find them again.

I would really like to ask you more questions and to share my experiences and feelings with you that seem to be so similiar to mine. Unfortunately I am quite in a hurry by now.
But I will come back to you tomorrow.

I am happy that I have found someone around my age. It seems that people with CIP tends to be younger when things get extremely worse than people with CI that often reach their 30ies/4oies or 50ies when they come to the point where life is unbearable.

Many hugs
Sarah

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/10/2009 12:45 PM (GMT -7)   
I am going to answer your questions about my bladder problems along with the other ones tomorrow.

Sarah

pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 8/11/2009 12:10 PM (GMT -7)   
I am sorry I could not get back to you earlier....
I will try to answer your questions at best but naturally I am not a medical person.

As far as the connection between CIP and bladder issues goes: From the age of 14 I often had urinary tract infections (when I had not had the bladder catheter through my abdomen yet). However, I already experienced difficulties in urinating/emptying my bladder.
I know that some people with CIP have similar bladder issues. It is quite "common" that there are multiple UTI that are not treatable by antibiotics. This is mostly due to the incapacity of the bladder to empty completely so that there is always a residual amount of urine in it. And this is an ideal place for bacteria to grow.
Do you also expereince difficulties in urinating?
Maybe you should have a testing of the bladder function (I think it is callled urodynamic).

Like the gut the bladder is an internal organ consisting of smooth muscles that have to be innervated by a similar neuronal architecture. Since CIP often affects the smooth muscles and/or the neuronal architecture you can have symptoms both from the bladder and the gut.
That's why I asked you whether you know the underlying mechanism (neuropathic=damage to the nerves or myopathic= damage to the smooth muscles)...a small bowel manometry can give some hint as there are typical contractile pattern for the myopathic and for the neuropathic version. An exact diagnosis in this regard can only be made by full thickness biopsies obtained in a little surgery.
However, a small bowel manometry is not mandatory for the diagnosis if there are obvious signs of sub-occlusion-like states without a mechanical obstruction. If there are air-fluid levels and distended bowel loops and an appropriate medical history and symptoms you fulfil the diagnostic criteria for CIP.

As far as your question about the difference between CIP and CI and small bowel inertiais concerned: well, I am not sure, I think it is a very good question I have also asked myself a few times. CI is the term for severe slow transit constipation caused by a severe dysmotility of the colon. That's "all", it "only" affects the large intestine but for sure you can also experience symptoms like fullness, stomach pain that are secondary to the backing up of the colon. If the colon doesn't push the stuff forward the small bowel and the stomach can't empty adequately. However, I have got the impression that people with CI tends to expereince less severe upper/mid abdominal symptoms and there are some who never have nausea etc. (for example hoddaya wrote this once in "colectomy")
Small bowel inertia - well I have never heard of the term before but I think that it describes a similar motility disorder of the small bowel. And since those people who have been told this diagnosis mostly also have colonic dysmotility it's likely that they have CIP. CIP is the correct name, small bowel inertia doesn't exist in medical terms. So I think it is a name some docs use since they see the symptoms, adapt the name for CI and just transfer it to the small bowel but they don't know about CIP in particular.
It seems that there are only very few people with small bowel inertia and that this is also a hint that they suufer from what we correctly call CIP.

CIP can vary in its first presentation. Some people fisrt have severe gastroparesis and experience severe constipation over time. In these cases the disease has spread on the large bowel. Others have the small bowel disorder first and continue with the large bowel. Other people only have small bowel involvement (though is a disease that affects the entire GI tract in most cases), sometimes the colon is the organ that is first affected. Usually, the first affect organ of the GI tract is where the disease is worst. That's why a colectomy/ileostomy can ideed bring some relief when the CIP firstly manifests in the colon - even if it is possible that this improvement is only temporary since the general character of the disease is progressive.. However, noone can say how bad and how fast this deterioration process will go.

Ok, I think I have rambled enough. I will look for the articles, they really contain much info - but they don't write about YOUR case. And that's why I can relate to your feelings and thoughts very well. Even if I know some things I would like to know which path MY CIP will take.

Let me ask you some more questions:
You say your gastric emptying study was normal in 2007.
was it a breath test or was it a scintigraphic scan with a radioactive labled meal?
Did you already have the extreme nausea etc when you did the test?
If yes, it is likely that your stomach would function quite well if it could empty into the small bowel which is way too slow. In consequence the stuff is captured in the small bowel and pushes on the stomach that can't empty which all together makes the stomach pain, nausea etc.

Post Edited (pelztier86) : 8/11/2009 1:16:35 PM (GMT-6)


pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 8/11/2009 12:35 PM (GMT -7)   
Do you still take laxatives by now? It is quite understanding that you experience intense pain after one day or two days withou a bowel movement since the small bowel is not thought to store the stuff. That's the function of the colon.

I don't think that my CIP is worse: I just have difficulties with eating since my stomach is also affected. In contrast my small bowel seems to be less affected than yours. There are abnormalities and I have little peristaltics there; distended bowel loops could also be seen in the lower part but I think my small bowel is less bad than yours.
My colon was also nearly dead. So it seems that our CIP has its inital manifestation there.

Have you still these days on which you eat nothing at all? I can relate to the disgust for food since I also experienced intense nausea, fullness etc prior to my colectomy/ileostomy.
How much do you eat compared to your food intake before surgery?

The back pain (I also experienced this) can be caused by chronic pancreatitis that is secondary to the bacterial overgrowth due to the non-functioning colon/small bowel. Do you still have this kind of pain?

Do you have days without pain in general now? And where is/was the pain worst? (in the stomach, mid, lower abdomen?) And how would you describe the charachter of it?
Mine had/has a characteristic pattern: I have spasms as if the bowel tries to push things forward but isn't able to do so and the stuff only moves forward and backwards instead of being propelled properly. I have tried to describe these spasms in my thread I opened at inspire.com. You can find it by looking on my profile where you can see all I have written so far.

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/11/2009 12:42 PM (GMT -7)   
sorry for posting twice....my connection is somehow acting up.

So how many calories do you get a day? I think it is a good sign that we are able to keep our weight by know if the nutritiens comes into the small bowel. It indicates that there is enough residual motility of the small bowel to absorb them. Before colectomy the backing up of the colon caused bacterial overgrowth which in turn led to malabsorbtion.

pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 8/11/2009 1:04 PM (GMT -7)   
On the other hand I also think it is quite strange that we don't loose weight after colectomy but I think you are right with your suspicion. Gaining weight is not common I would guess, it is mostly the other way round.

Oh, I almost forgot your question about my bowel movements: well, I have an ileostomy and as I said before for people with CIP this is usually better than an ileorectal anastomosis since it slows things less down: the stuff just has to go into the bag without being stored in the rectum which in turn can slow things down in the small bowel. Sometimes people have improvements with an ileostomy and when it comes to a reversal they are much worse so that a new ileostomy is done.

I notice that my output is much thicker and I empty my bag rarely (compared to what I read about normal outputs and their consistence). I also have flares in which my ileostomy seems to "sleep" and I am much worse in these situations.
I am on antibiotics that prevent bacterial overgrowth in my small bowel. It is not a common med and I wouldn't take it daily if it were normal antibiotics. It is called Xifaxan and was originally designed for the treatment of diarrhoea during journey.

As far as the UTI are concerend: well, I still experience them even with the permanent catheter but my spasms are less severe and I don't have to sit on the toilet for hours (in addition to the horrible purging sessions before colectomy) any longer just to get rid off a little amount of urine. Unfortunately, the UTI were less frequent at the beginning when I got my catheter but now my bladder seems to deteriorate.

ok, that's enough for today..I think you have much questions to answer....

Many hugs

SArah

Post Edited (pelztier86) : 8/12/2009 9:01:39 AM (GMT-6)


pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 8/11/2009 1:14 PM (GMT -7)   
Oh, I just read again that there were sacculation along with the dilated bowel loops..do you know if a sytemic disease can be the underlying cause for the CIP?
I think that sacculations can be a hint for Systemic Sclerosis..in this case you can try to battle the connective tissue disorder. Sometimes you can stop the progressing of the disease this way.

In general intensive dilatation of the bowel is indicative for a myopathic variant of CIP whereas neurapthic variants tend to make less severe distension. In the former there is poor to no contractions (which stretches the tissue), in the latter there are disorganized contraction of normal or increased intensity but which fail to propel the food due to their disorganization.
Did they say in which way the barium was propelled during your small bowel study?

Tomorrow I am able to give you the articles I think...
Sarah

pelztier86
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Date Joined Apr 2009
Total Posts : 401
   Posted 8/11/2009 1:16 PM (GMT -7)   
Moreover, I will get back to your questions regarding small bowel/further resection.. I am way to tires by now.. I think I don't make sense any more...

Sarah

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/11/2009 1:20 PM (GMT -7)   
On emore question: Have you ever been told that there is a so-called pendular peristaltics?

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/12/2009 8:26 AM (GMT -7)   
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1774265 - pathology of CIP

http://www.wjgnet.com/1007-9327/14/2953.pdf - clinical picture of CIP

http://www.grupoaran.com/mrmUpdate/lecturaPDFfromXML.asp?IdArt=461431&TO=RVN&Eng=1

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/rheumatology/systemic-sclerosis/ - some infos on Systemic Sclerosis

http://www.jurology.com/article/S0022-5347(05)64410-2/abstract some info an urologic manifestations with CIP

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/12/2009 8:54 AM (GMT -7)   
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1433824&blobtype=pdf unorthodox surgery for CIP

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 8/12/2009 11:10 AM (GMT -7)   
I sent you a mail with a pdf and a doc file...

curious anout your answers to my numerous questions...
Sarah
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