# THERE IS HOPE PART 2



## 23528 (Jan 8, 2006)

HERE IS A VERY SIMPLE, EASY TO READ ARTICLE ON THE MACE SURGERY I HAD AND HAVE BEEN TALKING ABOUT. I HOPE IT HELPS EXPLAIN WHAT I HAVE BEEN TALKING ABOUT.CLICK ON THE WORD MACE BELOW.mace


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## SpAsMaN* (May 11, 2002)

Thks,i will show it to the gastroentero that i will see this week.


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## 17902 (Sep 27, 2005)

apparently it still can be done if the appendix has been removed?


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## 17902 (Sep 27, 2005)

yes...it can...have there ever been research trials done specifically to evaluate this procedure and IBS-C? Probably not because half the researchers are busy with undergraduate psychology textbooks...


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## SpAsMaN* (May 11, 2002)

> quote: have there ever been research trials done specifically to evaluate this procedure and IBS-C? Probably not because half the researchers are busy with undergraduate psychology textbooks...


That's a good question Martin!!!


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## 17902 (Sep 27, 2005)

as you've probably seen, there is data for people with chronic constipation; even though the numbers of people who have had this procedure done are very small. Something like 70 percent is "Very Satisfied" with huge improvement in "Quality of life". I think I'm about to get the utensil out myself. Just joking..but I wonder, what would the consequences be if the operation didn't improve the IBS? From what I can tell, there's not really any serious risk involved.I wonder if who funds research has anything to do with it too...


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## SpAsMaN* (May 11, 2002)

> quote:I wonder if who funds research has anything to do with it too...


Well if funding influence results of clinical trials,me think there is more chance with products than surgery.


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## 17902 (Sep 27, 2005)

I was just wondering who stands to profit, and how much, from a surgical treatment for IBS versus a pharmaceutical one. At any rate, it doesn't matter. If (M)ACE has the potential to improve pain and quality of life for IBS sufferers, then the medical community's not acknowledging the fact is a crime, in my opinion.


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## SpAsMaN* (May 11, 2002)

You may want to evoid doctors who never go to gastrointestinal symposium.


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## 17902 (Sep 27, 2005)

I think there's pretty serious risks associated with this procedure. I suppose you can't do massive trials with a "last resort" option.


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## 23528 (Jan 8, 2006)

> quote:Originally posted by martin H:I think there's pretty serious risks associated with this procedure. I suppose you can't do massive trials with a "last resort" option.


ACTUALLY, ITS MY UNDERSTANDING THAT THERE ARE VERY FEW RISK WITH THIS. THATS ONE REASON I OPTED TO TRY IT.


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## SpAsMaN* (May 11, 2002)

Martin:It has been used for defecation disorders and IBS:http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum1: Dis Colon Rectum. 2007 Jan;50(1):22-8quote:Malone antegrade continent enema: an alternative to resection in severe defecation disorders.Poirier M, Abcarian H, Nelson R. Division of Colorectal Surgery, University of Illinois at Chicago, 1740 West Taylor, Room 2204, Chicago, Illinois 60612, USA. mpoirier###uic.eduPURPOSE: This study was designed to evaluate patient self-reported outcome of the Malone antegrade continent enema at a single institution in patients suffering from severe defecatory disorders. METHODS: A total of 18 patients (15 females; median age, 31 (range, 12-63) years) underwent a Malone antegrade continent enema (August 1999 to September 2004). The Malone antegrade continent enema technique has been previously described; however, in this series emphasis was placed on method appendix tunneling. Patients' charts were reviewed and follow-up telephone interviews were conducted. Indications for Malone antegrade continent enema were chronic constipation (n = 12), intractable fecal incontinence (n = 5), or both (n = 1). The underlying pathology included neurogenic (n = 2), congenital (n = 4), postsurgery-related (n = 4), irritable bowel syndrome (n = 6), and megarectum (n = 2). The appendix (n = 17) or cecum (n = 1) was used as a conduit. RESULTS: The mean follow-up was 18.5 (range, 3-67) months. Fourteen patients (78 percent) still use the Malone antegrade continent enema routinely and report good functional outcome. Three patients (20 percent) required stoma creation as subsequent alternate treatment. A total of 10 patients experienced 12 complications: 3 perioperative (infections) and 9 postoperative Malone antegrade continent enema use/nonuse complications (4 stomal orifice strictures, 2 fecal impactions, 2 appendiceal perforations, and 1 irrigation catheter knot). No patient experienced leakage from the appendiceal stoma. During the follow-up interval, one patient underwent proctectomy for megarectum. No failures occurred in patients with congenital or neurogenic disorders. CONCLUSIONS: Malone antegrade continent enema is a reasonable option for the treatment of select patients with severe defecation disorders. Good functional patient self-reported outcome was achieved by 78 percent of patients. The social inconvenience of stoma leakage is avoided with appropriate surgical technique. Malone antegrade continent enema is one option that provides a less invasive surgical alternative than colectomy or ileostomy for severe defecation disorders.


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## SpAsMaN* (May 11, 2002)

Babender,did you had any symptoms like irritable bowel(lower pubic discomfort etc..) and how the discomfort is doing?Again thank you very much for your update


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## 17902 (Sep 27, 2005)

Babender and Spasman, this is mainly what I was referring to when I mentioned risks. Hopefully I cite it properly. It is the first thing that comes up when I google "ace procedure". This is from a Wordpad document version of a pamphlet issued by the Association of Coloproctology of Great Britain and Ireland"What can go wrong?Having an ACE procedure is a major operation. The join between the ACE tube and the bowel can leak, though this is rare. None the less, such leaks are very serious and can cause peritonitis. Peritonitis is a very serious condition and it can cause serious complications and even death if not treated correctly immediately. This is why ACE operations are only performed if all other treatments have been tried.More commonly the opening at the skin narrows down (stenosis) and this makes it difficult to pass the ACE catheter to introduce the enemas. This may require a revision of the opening of the ACE or complete revision of the whole operation.Despite making a valve to try to prevent it, ACE stomas often leak stool back onto the abdominal skin. This is controlled by wearing a little bag, like a tiny Ileostomy or colostomy bag. The skin can get very irritated by this leakage.Occasionally the catheter can inadvertently perforate the ACE tube and this usually results in pain. When this pain settles down, the tube may narrow down and prevent further passage of the catheter. This may require a further operation to put things right again."The Association of Coloproctologyof Great Britain and IrelandThe Associationâ€™s websitehas information for patients abouta variety of bowel conditions atwww.acpgbi.org.uk


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## SpAsMaN* (May 11, 2002)

C-mon Martin,constipation is worst than that and can have complications too.


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## 17902 (Sep 27, 2005)

I'm not necessarily saying it wouldn't be worth the risk. I'm wondering though if the possibility of "serious complications and death" make it impossible to do trials with large IBS-C populations. If there wasn't decent evidence of the enema's being able to empty out IBS-C sufferers basically at the push of a button, then I dont know if the risk would be worthwhile, for me anyway. At any rate, I'm responding mostly to Babender when he says "there are very few risks with this". If there are any readers on here with half well-founded medical knowledge, your thoughts on this operation's potential to treat IBS would be of great interest.


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## 23528 (Jan 8, 2006)

Martin, well, this is what I can say. When I said the risk were few, I meant that in a relative sense. Compared with any other surgicle solutions to the constipation problem, at least the ones Ive discussed with my doctor. This seemed the best available procedure to me with the least amount of risk. I do know what the risk are. But here are some risk I faced by not doing anything, The risk of losing my job and my wife. The risk of spending my life popping pills, drinking solutions, never ending diets and on and on. The risk of my kids growing up and me missing out on all kinds of thier activities. Those risk were very real to me. So, after 5 years of bouncing around to doc after doc, getting the same answer each time, you have IBS, not alot we can do. Was I willing to take a risk? The answer is very easy...HELL YES. The other alternative I had proposed to me was a colostomy. Now compare the two. We all are aware of not only the risk associated with that, but also the day to day problems of wearing a bag. So, yes there are risk, but to me the risk were very minimal. And I can tell you that as of right now, I am as happy and feeling the best that I have felt in over 5 years. I havent had to take one single pill, potion, fiber or any of the hundred remedies Ive purchased in he last 5 years since having this. I get up in the morning and within 5 minutes Im done. Ready for the day and feeling good. No mess, no fuss, no bowling ball in my gut. I guess its just a case of, if things are bad enough for you, what are you willing to do. For me, it was an easy decision, for others, obviously it is not.


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## 23528 (Jan 8, 2006)

And I forgot to mention one other thing. With permission from other patients, I was able to contact some of them who had this procedure before I did. One lady in particular was on her 3rd year, and other than going back in for just a check up, she had no issues at all. After speaking with them about the long term, is when I decided to get this done. And lastly your article mentioned the stoma closing. that was probably the thing my doc drilled into me the most was having to insert my cath DAILY, whether I used it or not, just to keep it open.


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## SpAsMaN* (May 11, 2002)

I absolutly agree with you Babender.With everything litterally.Send some flowers to the clinic.


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## SpAsMaN* (May 11, 2002)

There is tremendous works ahead for constipation awareness among the population and physicians.Psychology obviously has nothing to do with it.This is a motor malfunctioning of the muscles in charge of the peristaltic.In IBS-C,there is a sensitivity/permeability issue that MAY creat spasms.


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## SpAsMaN* (May 11, 2002)

You have private message Babender


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