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Discussion Starter · #1 ·
I WANTED TO TAKE A FEW MINUTES HERE AND MAKE ANOTHER POST ABOUT MY EXPEREINCE. I HAVE BATTLED CHRONIC, MIND BENDING CONSTIPATION FOR OVER 5 YEARS. I HAD BEEN TO COUNTLESS DOCS, I HAD READ EVERY ARTICAL, TRIED EVERY OVER THE COUNTER MED, EVERY PRESCRIBED MED, EVERY DIET, EVEN SOME CRAZY HOME REMEDIES THAT I CANT BELIEVE I EVEN TRIED. NOTHING WORKED. MY MARRAIAGE, MY EMPLOYMENT, MY KIDS, EVERYTHING WAS GOING TO HELL. NO ONE UNDERSTANDS THE PAIN, DISCOMFORT AND JUST THE PLAIN HUMILIATION THAT THIS PROBLEM BRINGS WITH IT. EVEN THE DOCTORS SEEM TOTALLY UNSYMPETHETIC. ONE DAY I WAS SO BAD AND SO FED UP, I HOPPED IN THE CAR, DROVE TO THE EMERGENCY ROOM, CALLED MY WIFE, TOLD HER I WASNT LEAVING UNTIL THEY FOUND THE PROBLEM. AFTER ABOUT 30 SECONDS IN THERE, THE ATTENDING DOC TOLD ME I HAD IBS. I BECAME SO UPSET THEY ACTUALLY GAVE ME A VALIUM INJECTION TO CALM ME DOWN, I WANTED TO PUNCH THAT SOBs LIGHTS OUT. I WENT TO DOC AFTER DOC AFTER DOC, UNTIL FINALLY I FOUND A DOC THAT TOTALLY UNDERSTOOD. HE SENT ME TO MORE TEST THAN I CAN COUNT, ALL THE NORMAL THINGS AND EVEN SOME CRAZY ONES, ALL IN AN EFFORT TO FIND A CAUSE, WHICH WE NEVER DID, BUT HE KEPT ON TRYING. BY THIS POINT I WAS DOWNING ABOUT A 1/2 BOTTLE OF MILK OF MAGNESIA A DAY. MAYBE AN ENEMA ONCE OR TWICE A WEEK. INOTHER WORDS, I WOULD NEVER GO ANYWHERE WHERE A BATHROOM WASNT WITHIN A VERY CLOSE DISTANCE. ENEMAS WORKED, BUT WHAT A MESSY PAIN IN THE BUTT,,,NO PUN INTENDED. MY GASTRO DOC AND I WERE AT THE END, NOT SURE WHERE TO GO, WHAT TO DO NEXT. THE TALK OF A BAG STARTED. WHILE THIS DIDNT THRILL ME AT ALL, BY THIS POINT, I WAS READY TO HAVE A COLOSTOMY BAG HANGING FROM THE MIDDLE OF MY FOREHEAD. WHATEVER IT TOOK TO BE ABLE TO HAVE SOME KIND OF LIFE AGAIN, I WAS WILLING TO DO. HE REFFERED ME TO A COLON/RECTAL SURGEON, AFTER A FEW VISITS AND A FEW MORE TEST, HE MENTIONED A PROCEDURE CALLED M.A.C.E. I HAD NEVER HEARD OF IT, AND I STARTED RESEARCHING IT. M.A.C.E. STANDS FOR MALONE ANTIGRADE CONTINENT ENEMA. THEY TAKE YOUR APPENDIX, AND ATTACH ONE END TO YOUR COLON, THE OTHER TO THE UNDERSIDE OF YOUR BELLY BUTTON. IN OTHER WORDS, YOUR APPENDIX BECOMES A TUBE IN EFFECT. WHAT I DO NOW IS USE A STANDERED CATHETER TUBE, INSERT IT THRU THE VERY SMALL HOLE IN MY BELLY BUTTON AND FEED IT ABOUT 6 INCHES INTO MY COLON, PAINLESS. I THEN USE A LARGE SYRINGE WITH NORMAL TAP WATER, AND INJECT IT INTO THE CATH. IN ABOUT 30 SECONDS, I AM COMPLETELY FLUSHED OUT. I CANNOT TELL YOU WHAT A MIRACLE THIS HAS BEEN FOR ME. NO BAG, NO LARGE HOLE IN MY TUMMY, NO NOTHING. THE HOLE IN MY BELLY BUTTON IS MICROSCOPIC AND UNNOTICEABLE. THE PROCDURE IS VERY EASY AND CLEAN, I CAN DO IT AT WORK, IN THE AIRPORT, WHEREVER IM AT, AND NO ONE KNOWS THE DIFFERENCE. I JUST FIND IT AMAZING THAT AFTER SEEING COUNTLESS DOCS, BEING AT COUNTLESS HOSPITALS AND CLINICS, READING EVERY ARTICLE THAT I COULD GET MY HANDS ON, THAT NO ONE SEEMS TO KNOW ANYTHING ABOUT THIS. I AM NOW ON A MISSION TO LET ALL MY FELLOW SUFFERS KNOW ABOUT THIS.ITS NOW BEEN 2 MONTHS, AND I COULDNT BE HAPPIER. MY EMPLOYEER IS PLEASED TO GET THERE EMPLOYEE BACK, MY KIDS ARE HAPPY TO GET THERE DAD BACK, AND MOST OF ALL, MY WIFE IS THRILLED TO GET HER HUSBAND BACK. AFTER 5 YEARS OF STAYING HOME, EITHER IN THE BATHROOM TRYING TO POOP, OR LAYING ON THE COUCH FEELING LIKE POOP, IT IS A JOY TO JUST JUMP IN THE CAR WITH THE FAMILY AND GO ON A ROAD TRIP AGAIN, WITH NO WORRIES. I BEG YOU, IMPLORE YOU, THAT IF YOU TOO ARE AT YOUR WITS END, DO YOUR HOMEWORK, FIND A GOOD GASTRO GUY IN YOUR AREA AND ASK, NO DEMAND, THAT HE OR SHE, RESEARCH THIS PROCEDURE FOR YOU. I CAN ATTEST FROM PERSONAL EXPERIENCE THAT IF YOU DONT SPEAK UP AND BE DEMANDING, YOU WILL LEAVE YOUR DOC WITH ANOTHER PILL, AOTHER POWDER AND ANOTHER BAD ATTITUDE BECAUSE NO ONE SEEMS TO CARE. AGAIN, ITS CALLED M.A.C.E., MALONE ANTIGRADE CONTINENT ENEMA....IT HAS PROBABLY SAVED MY LIFE, BECAUSE I CAN TELL YOU, I WAS GETTING TO THE POINT WHERE LIVING WITH THE PAIN AND HUMILATION, DIDNT MUCH SEEM LIKE IT WAS WORTH IT ANYMORE.
 

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Did you got your cecum fixed at the same time?Learn more here:http://www.cecopexia.com/_private/English/freebook.htm
quote:Success of appendicocecostomyIn the study presented at the American Society of Colon and Rectal Surgeons, in the meeting that was held from 8 to 1 3 May 1 994 in Orlando, Florida, J. Hill and I. McLennan reported how they performed an appendicocecostomy to administer antegrade enemas as a treatment for intractable chronic constipation, in order to avoid the seriousness of the other surgical alternative (extirpation of most of the harge bowel). These authors reported their good results but, in our opinion, without purposefully attempting it, they were performing a cecopexy. And we think that, even after removal of the catheter, as the cecum would remain fastened, they would probably be gratefully surprised as they have essentiahhy performed Wilm’s operation.
 

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How long it take to recuperate from the appendicocecostomy surgery?I can't beleive no one suggest it to me
 

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Discussion Starter · #4 ·
quote:Originally posted by SpAsMaN*:How long it take to recuperate from the appendicocecostomy surgery?I can't beleive no one suggest it to me
I am still healing. the incision where they went in for the appendix became infected, put me back a few weeks. i ended up being off work for 3 weeks. It would have been shorter if not for the infection.
 

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Babender, your story sounds just like mine, even down to the milk of mag and the enemas. do you know if this procedure is only for those with chronic constipation and colonic inertia? i've been hoping for a colectomy but the gi docs all told me they don't like doing those if it's "just" ibs-c...i'll have to see if they'd consider me a candidate for m.a.c.e. i live outside ann arbor. if i can't find someone there who'll do it, i can always drive to grand rapids. Ferguson is a good place. my mom used to work there.thanks again for all your info and support!and yes, like spasman said, if this mace is done for those of us with ibs-c, why didn't any of the docs mention it to me before!!!
 

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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):22-8
quote: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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thanks for the info, Spasman. now if i can just find a doc whom i can convince that my situation is severe, like the article says. don't you just love it when doc after doc will be all dismissive and just tell you to "live with it". I have been living with it for about 40 years now but it's not what i'd really call "living"--more like enduring.
 
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http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum
quote: Cir Esp. 2006 Dec;80(6):403-5. Links [Treatment of severe chronic constipation through the antegrade continent enema procedure.][Article in Spanish]Pera M, Pares D, Pascual M, Perez M, Canete N, Sanchez de la Blanca MI, Andreu M, Grande L. Unidad de Cirugia Colorrectal. Servicio de Cirugia General. Hospital del Mar. Barcelona. Espana.The antegrade continent enema procedure was first described in 1990 by Malone for the treatment of severe fecal neurogenic incontinence in children. Since then, this technique has been successfully carried out in adults, as well as in patients with refractory constipation. The procedure provides a continent and catheterizable channel, generally an appendicostomy, through which antegrade washouts are given to produce colonic emptying. We describe the case of a 23-year-old man with severe constipation and overflow fecal incontinence who underwent an appendicostomy. There were no immediate postoperative complications and saline washouts were started on the fourth day. Since then, the patient has had a bowel movement between 1 and 3 hours after each washout, has recovered continence, and no longer wears an absorbent pad.
 

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Babender,when you used regular enema,did you experienced water stagnation in the sigmoid colon?An odd feeling that the things just sit there?When i use use 1 liter i often have this problem.I'm not sure if adding water by the cecum would clear everything in my colon.I'm quite special with my sigmoid spasms.I'm glad it help you tho.Thanks to share here.
 

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Discussion Starter · #11 ·
I had 2 Docs at the Ferguson Clinic in Grand Rapids. Dr Thomas Rupp was my gastro Doc and he is a great guy. He did not blow me off at all. He ordered every test known to man, he was relentlis and very compassionate. In the end, he reffered my to Doctor Donald Kim, a colon rectal surgeon at the Ferguson Clinic. All my test would come back normal, even the Sitz marker test. It was strange, everything was saying I was fine, but I couldnt squeeze out ANYTHING. Yes, I had alot of luck with enemas, but they are so messy, and such a pain to do. I travel alot for work, and the last thing I would want to do is get down in the bathroom floor in some hotel somewhere with my enema bag. I never wanted to carry the thing anyway, I had a major fear of getting searched at the airports, and them pulling my enema bag out!!! So began my life of being Philips Milk of Mags best customer. Dulcolax and all that stuff would work, but the cramps that came with them were worse than the constipation itself. I did make a few visits to the Gastro Dept at U of M. They figured I had some sort of electrical problem between my head and my guts. But thanks to our fantastic health care system, my insurence company would not authorize more visits to U of M. There is nothing worse than waking every day, and your very first thought is " How bad is it going to get today". Then trying to convince your doctor that you are not just crazy. I had the same primary care doc for 18 years. We ended up in a huge shouting match in his office one day over this, and I havent seen him since. He kept telling me that it was all in my head and wanted to put me on anti depresents. I told him the only thing depressing is that I cant go to the bathroom, and no one will listen. They can transplant hearts, put your limbs on someone elses body, yada yada, but they cant fix it so you can just go to the bathroom? Cmon.......
 

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Spasman--thanks for the additional articles--lots of good info there. I have that problem sometimes with 1 qt. enemas--that feeling that there is still water further up there in the colon--higher up in the left side and even in the transverse (is that the top part?) colon.it'll be all gurgle-y and sloshing around in there.Babender--thanks for the dr's names. I wrote them down for future reference although yes you are sure right about our fantastic health care system. I seriously doubt if my hmo or even blue cross would authorize my going across the state to Ferguson for treatment. I've had to battle with them over lots of things. they won't pay for zelnorm (even when my doc and i appealed) and even refused to pay for my routine age-50-colonoscopy ( a "covered service") until i filed a claim about it.
 

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Babender,can you just tell us if the water from your enema before the surgery would all evacuate or some liquid stayed trapped in your sigmoid?Also,have you ever had a defecography?
 

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The reason why i ask you Babender,it's because sigmoid spasms/contraction can cause gas or water to be entrapped.
 

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Discussion Starter · #15 ·
quote:Originally posted by SpAsMaN*:Babender,can you just tell us if the water from your enema before the surgery would all evacuate or some liquid stayed trapped in your sigmoid?Also,have you ever had a defecography?
Yes, a normal enema would USUALLY evcauate me very well. I just hated doing them. And yes, I had a defecography. Cant say Ide ever want to go thru that again. It showed a little weakness in the pelvic floor.
 

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Interesting that you had a defecography showing pelvic floor trouble.I got that too perhaps to a higher level.I have to ask you,does the "hole" prevent gas to escape and stuff?Sorry to ask all this but i'm curious coz i read a discussion on a french board about a guy using a charchoal filter.Also the guy had some issue with thighning of the hole making difficult to pass the "seringue"(the doctor is suppose to untigth it).Other than that he was happy with the results.Who want to keep the #### inside anyway.
 

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Discussion Starter · #17 ·
That was probably my biggest fear going into this. I had some small leakage at first. No "fecal" matter, but just some water like liquid. As time goes on, it seems to get less and less. I have had no episodes of gas or anything escaping. The best thing about it is that its right in my belly button and very very small in size. I do not forsee any issues with going shirtless at the beach in the summer or anything, its very unnoticable. The doctor did warn me to insert my catheter every day, wether I use it or not, to keep the hole open. Consider it like an ear piercing, if you dont insert an earing in it once in awhile, it closes up.
 

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BabenderYour post is so helpful. I have had colonic inertia (severe chronic constipation) since I was about 16. About four or five years ago, I had a consult with a surgeon about subtotal colectomy - removal of most of my colon. At the time, he offered me the MACE procedure as an alternative. I was wary, thinking that it would not be any improvement over a conventional tap water enema. I ended up not doing it, and I still refuse to have my colon removed. Is the MACE procedure really better than say doing a conventional enema with an enema bag? Those do not work as well as they used to for me. There is a lot of cramping and it takes a while to finish working. Right now I am managing with a combination of Zelnorm, Miralax and dulcolax. Needless to say, I don't feel all that great, especially when the dulcolax starts cramping up my gut. I take it that you would recommend the MACE procedure. Sean
 
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