# colonic inertia and Zelnorm



## 18467 (Jan 22, 2006)

Hello,I recently had a sitzmarkers transit test and the X-ray on the 5th day showed that all the markers remained in my colon, on the left side (the decending side). This means I have colonic inertia, which did not come as a surprise to me or my doctor. I haven't had the follow-up appointment with my GI, but the nurse called me with the results of the X-ray and told me that the doctor wants to put me on Zelnorm. Those of you who have taken Zelnorm, can you tell me a little about your experience? And those of you who have colonic inertia, can you talk about what has or has not worked for you? Thanks in advance.


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## 19755 (Sep 2, 2006)

I too has colonic enertia and tried Zelnorm. Unfortunately, it did not work for me. After having no success with medications, I finally had my colon removed last year and feel like a new person. Has your doctor mentioned this as an option if medication doesn't work?


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## 18467 (Jan 22, 2006)

Thanks for the post, Sherene. How did you decide to have the surgery? Were you in a lot of pain? Were laxatives not working for you? I'm trying to figure out at what point surgery would make sense. My doctor hasn't mentioned surgery yet, but I've read a fair amount about it.


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## 20798 (Sep 5, 2006)

Hi, I'm so glad I found this group. I suffered from constipation all my life and have tried many things to try to overcome this. My doctor suggests surgery whereby the 75% of the colon will be removed, but I am so scared I will be in a worse situation if I have to have a 'bag'. I saw one post where you felt like a new person after the surgery. If you don't mind sharing, I'd really like to know how it all went. Thanks.


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## 17985 (May 21, 2006)

What are the chances of this resulting in a "bag" situation Slowgo?


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## ABNormal (May 24, 2006)

TCS, Zelnorm worked for about 2 weeks and then quit working. I also did not like the way it made me feel. I think you can search on this site for other posts about Zelnorm. There are some posters here who have had much success.


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## jodys (Apr 8, 2002)

Hi I also had my colon removed in April of this year. They took the entire large intestine, due to colonic inertia. All of my rings were still left after the sitz marker test too. It was the VERY BEST thing I have ever done!!!!!!!!! No amount of laxatives are going to help you if you have colonic inertia. You just dont have the peristalsis to propel the contents down and out. Yes it was very frightening for me, but I could not go on living like I had been. I t wasnt that bad of a surgery at all actually, Just find a very good surgeon. Good luck.


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## 21731 (Jul 12, 2006)

Hi Jody and thanks for your post!! Did you have any other tests and if so, what did they reveal? I had the defagram and it showed a rectocele of 5-6cm - I'm in the middle of the marker test. I took the capsule with the markers on Monday morning and on Friday 22 of the 25 are still in the colon. I go back tomorrow and Tuesday for more x-ray - but already know they will still be there. After this is complete, the colorectal specialist wants another test done where they check the nerves/muscles in the anus/rectum. I'm hoping that if surgery is the answer here that I can find a good surgeon. How were you able to find a good one? Did you have to get the anal test done too? I know that I cannot live with this the rest of my life. I've already lived 43 years with it and it has gotten to the point NOTHING moves me.Thanks for answering any of the questions.I too tried the Zelnorm which did absolutely nothing. The poop potion I'm on now is Miralax and Lactalose - but it isn't working either and hasn't for quite some time.


> quote:Originally posted by jodys:Hi I also had my colon removed in April of this year. They took the entire large intestine, due to colonic inertia. All of my rings were still left after the sitz marker test too. It was the VERY BEST thing I have ever done!!!!!!!!! No amount of laxatives are going to help you if you have colonic inertia. You just dont have the peristalsis to propel the contents down and out. Yes it was very frightening for me, but I could not go on living like I had been. I t wasnt that bad of a surgery at all actually, Just find a very good surgeon. Good luck.


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## jodys (Apr 8, 2002)

Hi Robin, Yes I did have the other tests done that you will be having. Its not a big deal. If you have that many rings left at this point then it sounds like you definately have colonic inertia. I also had a rectocele that they repaired at the time. Do not let the Dr. tell you that the problem is all with the rectocele though. When I had mine repaired witht the first surgery, it did nothing to help the constipation. It was only after i had this surgery did I find any help at all. I cant stress enough how this has given me my life back. There is help for you!! As far as finding the best surgeon, research, research, research! I was very lucky that i live in an area with an outstanding medical facility and top notch surgeons, but I was very willing to travel if I had too. Have you ever heard of Dr. Christopher Lahr? You might want to look him up. He is one of the leading GI dr.s on colonic inertia and you will be amazed at what you read. I cried for days after finding the information, because I finally felt like I wasnt crazy and it wasnt all in my head. That is what made me want to pursue this and not give up. It sounds like you are getting all the right tests though and your Dr. is right on track. Let me know what happens! good luck!


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## 15734 (Apr 16, 2006)

JodyS,Did you have a problem with pelvic floor dysfunction also? If there is serious PFD, I understand that the surgeons do not reattach the intestine, and instead the patient would have a permanent colostomy with a bag (which I am told is a liveable circumstance and not nearly as bad as one might think).In any event, so glad that you are doing so well.


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## jodys (Apr 8, 2002)

Sally, Yes i also had pelvic floor dysfunction to some degree. My Dr. and I both agree that it was CAUSED by the chronic constipation and straing, plus childbirth. This problem can also be addressed by a "UROgynecologist" who only specializes in this area. No, i do not believe that you would have to have a colostomy bag. That just doesnt make sense to me and i would definately get an opinion of a urogynecologist before i would agree to that.


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## 21731 (Jul 12, 2006)

> quote:Originally posted by jodys:Hi Robin, Yes I did have the other tests done that you will be having. Its not a big deal. If you have that many rings left at this point then it sounds like you definately have colonic inertia. I also had a rectocele that they repaired at the time. Do not let the Dr. tell you that the problem is all with the rectocele though. When I had mine repaired witht the first surgery, it did nothing to help the constipation. It was only after i had this surgery did I find any help at all. I cant stress enough how this has given me my life back. There is help for you!! As far as finding the best surgeon, research, research, research! I was very lucky that i live in an area with an outstanding medical facility and top notch surgeons, but I was very willing to travel if I had too. Have you ever heard of Dr. Christopher Lahr? You might want to look him up. He is one of the leading GI dr.s on colonic inertia and you will be amazed at what you read. I cried for days after finding the information, because I finally felt like I wasnt crazy and it wasnt all in my head. That is what made me want to pursue this and not give up. It sounds like you are getting all the right tests though and your Dr. is right on track. Let me know what happens! good luck!


JODYS - Thank you from the bottom of my heart for your response. I will sure keep everything in mind! May I ask what city/state Dr. Lahr is located? Where did you find the information that validated your situation? I totally agree that this is a surgery NOT to be taken lightly, rather research, research, and more research is a wise thing to do!!If you can direct me down the right path I would really appreciate it!!


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## jodys (Apr 8, 2002)

Hi Robin, Dr. Lahr is in Charleston, South Carolina, but he is actually not the one who did my surgery. If you want to PM me, I can give you a lot more information. He did send me his book though, It's called "Shining Light On Constipation". You sound exactly like I did 6 months ago. Just hang on, it will get better, you have to just be persistant. I had been researching this for years before I finally got treated, by then I knew exactly what I needed and who to go to.


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## Tiss (Aug 22, 2000)

After many years as a member on this BB I have come to the conclusion that I do not have IBS. I have chronic constipation (since childhood) and colonic inertia. I have only had colonoscopies. They have shown an extra long, windy colon with many sharp turns, diverticulosis and polyps. I have not had any other tests run. I have been one of the lucky ones with Zelnorm for 2 1/2 years. In July I started noticing less effect from Zelnorm and have been raising the doseage, taking some pericolace etc with mininal results. I am 50 years old and just cannot deal with the idea of going back to the days of 7 to 10 days with no BM. As of now, I am uncomfortable, have a sense of incomplete evacuation (that's nothing new) and in general not feeling well. I am seeing a new GI in Oct. Should I ask him to run these extra tests or perhaps wait for him to suggest them? These problems have definitely gotten worse the last 15 years and I am quite frustrated at this point.


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## annie7 (Aug 16, 2002)

Hi Tissoh, I would definitely ask the new doc about having these tests--they may be uncomfortable but (in my opinion) what do you have to lose? at it's always good to at least know or have a better idea about what's really going on in there. of course i'm no doctor but it sounds to me that you might be a good candidate for surgery of some sort just because of your problems and the fact that your colon is longer than usual--maybe they can shorten it up and make things easier? I see my pcp next month and am planning to ask for a referral to a new gi doc b/c the last one just told me to "live with it" (this is living?) and I plan to ask him/her for at least the defogram since my sitz marker tests all came out frustratingly ok. my old gi doc told me a defogram would be a waste of $$ since I'm childless and don't strain either since I learned right away that for me straining hard only makes it worse and guarantees I won't go. well, maybe he's right but i want to try. at this point I'm desperate and more than willing to try surgery. I'm 54, had ibs-c since 20 and way past tired of the misery etc. I do seem to remember a thread here a while ago--couple months maybe-- where people were discussing the surgery and saying it could take up to five years to feel better--that sometimes you don't feel better right away b/c it takes a while to heal? although personally, I'm still willing to try surgery no matter how long the healing period takes.thanks so very much, Jody, for your information!! so glad surgery worked out for you!!!!


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## jodys (Apr 8, 2002)

The gold standard test for colonic inertia is the sitz marker test. If you feel yours was a fluke when you had it done for whatever reason, definately ask to have it repeated. Just remmmber NO laxatives of ANY kind for several days before starting and NONE during the test at all!!! This is very important. Yes, it is uncomfortable during this time, but colonic inertia will NOT get better, only WORSE as we age. I dont know who said it would take 5 years to feel better after the surgery. Of course immediately after, you are runninig to the bathroom VERY frequently, but that slows way down in a few weeks or months. I personally didnt care. i was just so excited to be able to go!!!!!!!


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## Tiss (Aug 22, 2000)

Is the point of the surgery to shorten the length of time that stool stay in the colon? Also, do you now have the 'urge' to have a BM?


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## jodys (Apr 8, 2002)

Tiss, Colonic inertia is where you do not have any peristalsis to propel the contents out. By removing the colon and reconnecting the rectum to the small intestine, you bypass this. The transit time is much shorter obviously but that is not a problem for most people. Yes, I have the urge to go now, where I didnt before. I also can hold it for as long as I need to until I can get to a bathroom. That is why the manometry testing is so important because you wouldnt want to be incontinent. If you dont understand what they are asking you to do during the testing, be sure to ask the Dr.


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## Tiss (Aug 22, 2000)

Thank you for that information. I think I may have some complicating factors other than the recotocele and chronic constipation. I also have hemmoroids which do not particularly bother me. When I had my 1st child I had a 4th degree tear after episiotomy (tore into my rectum--ouch) and it took a long time to recover from that and my anus never seemed the same. After my 2nd child was born my pelvic floor was just gone. I couldn't feel anything in the perinium area for about 3 months. My Dr kept saying to do Kelels which was hard to do because I had NO FEELiNG down there. I had to wear a pad constantly because I just drained urine. That evenualy got better but of course now that I'm 50 I have incontinence (urine). It's not as bad as some of my sisters' problems but it is there and getting worse. Should I get that fixed 1st??? I don't know where to start! Thanks for the input. Tiss


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## 21731 (Jul 12, 2006)

> quote:Originally posted by Tiss:After many years as a member on this BB I have come to the conclusion that I do not have IBS. I have chronic constipation (since childhood) and colonic inertia. I have only had colonoscopies. They have shown an extra long, windy colon with many sharp turns, diverticulosis and polyps. I have not had any other tests run. I have been one of the lucky ones with Zelnorm for 2 1/2 years. In July I started noticing less effect from Zelnorm and have been raising the doseage, taking some pericolace etc with mininal results. I am 50 years old and just cannot deal with the idea of going back to the days of 7 to 10 days with no BM. As of now, I am uncomfortable, have a sense of incomplete evacuation (that's nothing new) and in general not feeling well. I am seeing a new GI in Oct. Should I ask him to run these extra tests or perhaps wait for him to suggest them? These problems have definitely gotten worse the last 15 years and I am quite frustrated at this point.


Hi Tiss, Unlike you, I've never thought I had IBS-C - only chronic constipation. The reason I started posting on this thread was it said IBS-C and Chronic Constipation. I too have suffered with constipation since I was 15 months old - I'm now 43.I want to first acknowledge all the wonderful and caring people who post here with similar situations and thank them all for sharing their situation with us. It gives me hope just knowing I'm not crazy and that what I have is real and their are options.In reading your post I can totally relate to your situation. During my colonoscopy in July, the GI said I had "a lot" of looping of the colon and could see why I have problems having bowel movements.It wasn't until I told him that I've had to manually remove stool because it just wouldn't come out. He then ordered me the defagram, which revealed a very large rectocele PLUS I was unable to push out the barium balloon they inserted. With these findings he sent me to a colorectal specialist who ordered a 7 day transit test which I just finished. After one week I still had 22 of the 25 markers still in the colon. My next and last test has something to do with testing the muscles/nerves of the anus/rectum. I think this will ultimatley reveal that I do need surgery and I'm actually very open to is because like you, I'm tired of living like this. It has gotten to the point that NOTHING works and I'm miserable.I am convinced that because we keep stool in our systems for so long (I've gone as long as two weeks a few times) that it's no wonder we feel sick - our body's are not made to keep toxins in it for so long, not to mention how uncomfortable it is!!!I'm glad that you're seeing a new GI in October. Please do not hesitate to have him run tests on you. I think I waited way too long and now my body is saying "do something because I can't anymore"Annie, You hang in there! There is hope for everyone and don't let them tell you any different!!! You could very easily have a rectocele and they can see that with the defagram. I must agree that to "just live with it" isn't living at all!!! Just be persistent and you will get answeres!!


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## annie7 (Aug 16, 2002)

thanks Jody and Robin for all your information and support. and yes, Robin, I too am so grateful for this board and to Jeff for starting it because for so many years I felt I was all alone with this problem and blamed myself for having it (drs and others would either say i wasn't eating, drinking right etc or it was all in my head) Robin and Tiss--good luck to you both. I hope you both (and everyone else on this board too!) can find a solution so you can finally feel better after all these years!


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## byte (Feb 15, 2004)

jody, thank you. u've been extermely informative in this thread, its been helpful and interesting to read. do you mind if i ask u a few questions? is incomplete evacuation a symptom of colonic inertia, if so, do you feel entirely evacuated now after having the surgery?also, who did these tests for you? was it ur GP, a gastroenterologists, or another type of specialist?


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## jodys (Apr 8, 2002)

Hi, Glad I can help. I dont know for sure if imcomplete evacuation is a symptom of colonic inertia or a symptom of pelvic floor problems. With colonic inertia, I always felt full and now its just the opposite. Diet plays a great part in it though. Some foods can still make your system run slower or faster than others. Its a lot of trial and error and common sense. I had several Dr.s actually. A gastroenterologist, a colon and rectal surgeon, and then because I am female, I was also evaluated by a URO gynecologist for any pelvic floor problems. Just make sure you get the best Dr.s you can find. Good luck!


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## 16489 (Nov 4, 2005)

Zelnorm did not work beyond a week for my wife, it was C then D, C then D and nothing at all except C.Zelnorm did nothing at all.


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## 21731 (Jul 12, 2006)

> quote:Originally posted by byte:jody, thank you. u've been extermely informative in this thread, its been helpful and interesting to read. do you mind if i ask u a few questions? is incomplete evacuation a symptom of colonic inertia, if so, do you feel entirely evacuated now after having the surgery?also, who did these tests for you? was it ur GP, a gastroenterologists, or another type of specialist?


Byte, I agree, Jody has been very helpful and informative to this thread. I'm so thankful that she is so willing to help with any questions we may have. She's been a true blessing to me.You asked about incomplete evacuation and if it's a symptom of colonic inerita....I'm not absolutely possitive becaue I do believe I am suffering with colonic inertia and have one last test that will determine if in fact it is colonic inertia. HOWEVER, I think that incomplete evacuation is related to a rectocele because the stool moves forward instead of thru the rectum/anus. This was the first diagnosis I got when I had the defagram done. I'm dealing with a 5/6 cm rectocele which is considered extremely large so my GI who originally ordered the defagram referred me to the colorectal specialist I'm seeing now and who is running more tests.I hope this information is helpful to you and I hope it didn't create more questions than answers.


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## byte (Feb 15, 2004)

thanks for the replies jody and stuck. i appreciate ur help


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## 18091 (Dec 26, 2006)

> quote:Originally posted by jodys:Tiss, Colonic inertia is where you do not have any peristalsis to propel the contents out. By removing the colon and reconnecting the rectum to the small intestine, you bypass this. The transit time is much shorter obviously but that is not a problem for most people. Yes, I have the urge to go now, where I didnt before. I also can hold it for as long as I need to until I can get to a bathroom. That is why the manometry testing is so important because you wouldnt want to be incontinent. If you dont understand what they are asking you to do during the testing, be sure to ask the Dr.


Hi, jodys! I know this was posted a while ago, but I was unable to find more recent postings of yours. I have been reading this forum for a while and suffering with colonic inertia (transit markers ALL still there after a week) for a little over a year. I literally have not had a bm without a 5 gallon enema bag, or initially fleet phospha-soda (no longer works), for over a year. Usually when I tell people this they do not believe me but I'm glad to have found this forum...I am sure you will understand! Anyway, please tell me more about the doctors you recommend because I have seen four about this (2 pcps, 1 gastroenterologist, and 1 specialist in GI at the university) and they all tell me there is nothing more they can do. I am from Nebraska, but am willing to travel to get this taken care of. I am on a waiting list for Mayo in Rochester, but it is for 6 months and at that time I will be starting clinials (I am a second year Physician's Assistant student) and it will be very hard to get away. I appreciate any advise, and already your postings have been very helpful! Thanks. Anne


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## 23405 (Jan 27, 2007)

Anne: I suffered from colonic enertia and was miserable. I was diagnosed in 2000 and at that time it was not a know "disease". It took years of finding a dr to diagnose my horrible constipation, nausea, bloating and reflux and overall miserable state of well-being. Once diagnosed I was sent to a surgeon who was incredible. He knew what I had, tried a few things before recommending surgery, but I ended up needing it. My surgeon did a fantastic job. He tried to save some colon for me, but my gastro seems to think that what I have left is tired and may need to be removed as well now. This has also resulted in a prolapsed rectum I just found out last week. I will be going back to my surgeon for a 2nd opinion in the next few weeks. If you have any desire to travel to NYC, you will get excellent medical care and I can give you some names if it's something you're interested in. Let me know. Good luck!


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## 18091 (Dec 26, 2006)

Hi Amanda. Thanks for replying. I am finally getting into Mayo in March. I get the feeling that everybody thinks I am crazy. I hope Mayo doesn't. So, will you have to have a bag now since the remainder of your colon is "tired"? I worry about that. Even if they can keep part of my colon for now I get the feeling that it will not stay that way forever and eventually I will have a bag. I am 28 and would obviously rather not have a bag, but this is no life either. The ONLY way I have a bm now is with a colonic ($60 plus travel time) or several hours of prep (fiber and castor oil wrap) and an enima, which half the time doesn't work either. It's so frustrating! I'm just glad to have someone that knows what this is like. Anne


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## 15050 (Feb 28, 2007)

Hi. I've been reading all the posts and it's amazing to find others who have the same problem I've had for most of my life. I'm 51 years old and was diagnosed with colon inertia (sitz marker test) about 20 years ago. I have taken senokot regularly (per my Gi at the time)and that is the only time I have a bm. As if that isn't bad enough, just 2 years ago I started having terrible acid reflux and 2 years ago was diagnosed with Barretts espohagus, which a precancer of the esophagus. I've been on meds for the acid problem, but without much luck. I really feel that the reflux issue is from the constipation problems. I live in Florida, and have been to Shands, but the Dr. there says colon surgery should be a last resort. I feel like I've aged 10 years in the last 2 years...even with the constipation problems, I felt pretty good until then. Now with the acid problems, I'm desperate to have something done. Have any of you had reflux problems as well as constipation? I'm just wondering....those who have had surgery, are there any doctors you recommend? I could go to Shands, or Mayo in Jacksonville. I'd love to know more about the surgery, etc. Thanks!!


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## 23528 (Jan 8, 2006)

> quote:Originally posted by slowgo:Hi, I'm so glad I found this group. I suffered from constipation all my life and have tried many things to try to overcome this. My doctor suggests surgery whereby the 75% of the colon will be removed, but I am so scared I will be in a worse situation if I have to have a 'bag'. I saw one post where you felt like a new person after the surgery. If you don't mind sharing, I'd really like to know how it all went. Thanks.


Slowgo, one of the things I was facing was the same thing you are, I believe. I was ready for anything, living with a bag couldnt be worse then the daily pain. Then we discovered the MACE that I have been talking about, couldnt be happier, and no bag. If you have any questions, drop me a line.


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