Hello Everyone,
This is my first post, after doing some reading on here for a little over a week. I'm really glad I found this board. I don't feel so alone now.
Anyway, I was wondering if any of you with Colonic Inertia think I might have it.
Here's my story: I have been constipated all my life (I'm 35), except for about 10 years ago when I was diagnosed with IBS b/c of alternating diarrhea for awhile. But then that stopped and I had constipation only. Fiber products used to work for me, but then stopped. So about 5 years ago, I started taking herbal supplements to "move" me because all the advertisements said they were safe and nonaddicting. Well, over less than a year, even those stopped working for me. So I tried colonics, and while that helped empty me out of a lot of junk that had been in me for who knows how long, it did nothing for my problem. So then I tried epsom salts and magnesium, which also worked for awhile then stopped.
Now, nothing seems to work. What happens is, no matter what I take, it turns everything to liquid in me and sloshes around like a water bottle!! I have hard feces stuck in my rectal area at the same time. And LOTS of gas. The liquid in me makes me feel really fatigued and weak, and sometimes my legs feel numb/weak. It also makes me have severe anxiety and depression, for which I take medication, which I'm sure isn't helping the situation. As this bowel problems has progressed through the years, all these symptoms have gotten worse.
I saw a gastro doctor last year who did a colonoscopy and said I simply had IBS, and gave me Miralax. But that didn't help. In fact, when I did the preparation for the colonoscopy with the Miralax, I had major trouble getting that out, and had to do a bunch of enemas, which as usual also got stuck in me and came out slowly a ton of times that night, and made my rear hurt so bad and my hemmorhoids really act up.
Does this sound like colonic inertia? And do you believe that laxatives (herbal and synthetic) contribute to colonic inertia, especially if you have a weak/dysfunctional colon to begin with?
Do you think thyroid problems can make a person be this severely constipated? I need to get that checked out.
I'm really scared and fear I may have to have surgery to remove my colon. But your posts have made me feel a little less fearful.
Thanks so much for reading this. Any advice/insight would be wonderful.
KP 
P.S. I forgot to mention I also tried Zelnorm but it didn't do anything for me.
Dear KP-
Your story sounds familiar to most everyone's here. Have you done a sitz marker test? It really is the gold key standard for diagnosing colonic inertia. It measures the amount of motility through your intestines over a specific period of time. That's where I would start if you haven't already done it.
Cathy W
Your story sounds familiar to most everyone's here. Have you done a sitz marker test? It really is the gold key standard for diagnosing colonic inertia. It measures the amount of motility through your intestines over a specific period of time. That's where I would start if you haven't already done it.
Cathy W
Dear KP~
I am as well a nubbie to this forum. I was dx with Colonic Inertia about 2 weeks ago. Had the sitz marker test, they were spread through out the colon, not in one spot. I went as far as an 8 day study, never passed one ring. I was not a happy camper to say the least. I just started taking AMITIZA...it is new and it is working ...I am also on Zelnorm.Mrylax, peri colace....ummm Mag. citrate when needed. I am a long time sufferer of IBS, 45yrs old female....also had a bout of gastroparesis(stomach stopped working) this was 10 years ago, used propulcid then, would love to get my hands on it now. It was taken off the market, can still get it IF you meet the critieria from the manufactuer. Anyway, sound like you got it bad as well. my colon Dr. wants to remove my colon to the rectum(6") above. I say let's try a 2nd opinion and Amitiza. I am getting blood work for thyroid & diabetic.....don't think that is an issue with me at this time. I feel for you, it is not fun at all!
Julz
I am as well a nubbie to this forum. I was dx with Colonic Inertia about 2 weeks ago. Had the sitz marker test, they were spread through out the colon, not in one spot. I went as far as an 8 day study, never passed one ring. I was not a happy camper to say the least. I just started taking AMITIZA...it is new and it is working ...I am also on Zelnorm.Mrylax, peri colace....ummm Mag. citrate when needed. I am a long time sufferer of IBS, 45yrs old female....also had a bout of gastroparesis(stomach stopped working) this was 10 years ago, used propulcid then, would love to get my hands on it now. It was taken off the market, can still get it IF you meet the critieria from the manufactuer. Anyway, sound like you got it bad as well. my colon Dr. wants to remove my colon to the rectum(6") above. I say let's try a 2nd opinion and Amitiza. I am getting blood work for thyroid & diabetic.....don't think that is an issue with me at this time. I feel for you, it is not fun at all!
Julz
Julz2, I was wondering if the Amitiza is working for you.
Thanks!
Thanks!
Hi, it sure sounds like you have colonic inertia but of course that has to be decided by your doctor. I had a lifetime of simillar problems and all the tests to rule out other things and as a last resort had a colectomy. The surgeon removed about 7/8 of my large intestine and reattached my colon so I don't have a bag. It was the best decision I've ever made. It was done 7 years ago and until 3 months ago when I developed IBS, I haven't had any problems. And you can understand how wonderful it was to be regular (I remember too well how it was before that). I did have an intestinal blockage one time and was in the hospital for three days but thankfully I didn't have to have surgery...it resolved itself with rest and a gastro tube in my nose. Now if I go more than a day without a BM, I start drinking lots of water and resting. Now with IBS, my stomach has hurt for three months but now that I know what to do, changing my diet is helping a lot. Sure hope you get some relief soon. Take care of yourself and don't be embarrassed to keep asking your doctor (or another one) until you get some help.
Creekgirl,
Thanks so much for your post. Wow, you've been through a lot, bless your heart.
Sounds like you can relate. I'm glad you've been doing so much better after your surgery. Let me ask, how can a person develop IBS if they have no colon? I didn't know IBS could occur in the small intestine? What have you been doing differently in your diet that is helping? What were you eating previously?
As for me, I haven't had any tests yet for various reasons, but I will do that as I can. Am trying some other things right now, to see if anything helps. Having the surgery will be a last resort, as it was for you. But reading about everyone on this board's experience with surgery has been encouraging me a lot. And so have you.
I really hope you continue to improve with your IBS.
Thanks again for your post!
Dear Kap,
You know, I've been wondering lately about that very subject: can I have IBS without a colon? I have an appt with my gastro doc next week and I sure will ask him. I bought a really good book by Heather Von Vorous called "IBS, the first year". I've tried to eliminate all dairy and animal fat and it seems to help a little. I just don't feel like I have the "typical" symptoms of IBS. I'm also going to ask my GYN next month about my problems. My 12 year old grandson seems to have inherited my colonic inertia but he's doing fairly well on Zelnorm. I tried EVERYTHING before my surgery and I'm just so thankful it helped so much. I pray you'll find some help and if you do have a colectomy that it will be a success and you'll heal completely. My surgeon said that I might have a temporary bag but thankfully I didn't. This is such a wonderful site...it reminds us that we're not alone. Take care and don't get discouraged.
Sincerely, Creekgirl
Creekgirl,
Thanks SO MUCH for your post. You are very encouraging. Please keep me posted on how you're doing, okay?
Take care,
Kap
Hi,
Hope things are better for you. I've tried the Zelnorm but it gives me diarrhea so I really think watching what I eat is going to help more than anything. I did find out from my gastro doc that although most IBS is in the large intestine, it can be in the small intestine also. So I guess that's what I've got. I found out that stress really does make it worse...my mother passed away three days ago. But when your heart hurts, the stomach pain doesn't seem as important. But I think I don't have IBS as bad as some people; I'm thankful it's never been bad enough to go to the ER. Take care of yourself.
Best wishes,
Creekgirl
Hey everyone,
When I saw see these posts, I immediately registered on the site. I could really use some help :(
I'm 13 years old, and I've been dealing with constipation and stomach pain for over a year. I'm also nauseous all the time and don't have an appetite.
I went to the emergency room 5 times last year. I've had a barium swallow, two endoscopies, two colonoscopies, x-rays, MRIs, ultrasounds, CAT scans, allergy tests, etc. I went on a gluten-free diet (failed). I eat more than 150% of the recommended daily value of fiber (for an ADULT); doesn't help. Been using Miralax for months (failed). Taken laxatives in the form of pills and liquids and such (failed). Enemas used to work, but lately they haven't helped much.
I've only been diagnosed with Irritable Bowel Syndrome, but there is so little stress in my life that I don't understand why I've been feeling so horrible (especially within the past 2 weeks). I'd been a happy, healthy vegetarian for over 2 years, and 6 months ago became a vegan. I felt better when I cut out dairy and eggs, and had no pain or constipation for about 6 weeks. But then it came back.
I'm so tired of being in pain. I'm sick of missing school.
I'm hoping, just for the sake of finally being diagnosed with something real, that I have colonic inertia. Does it sound like I do?
Thank you!
-Lauren
I almost forgot to mention, I've taken a couple different prescribed medications for my constipation, but they made me so nauseous I couldn't eat for days.
When I saw see these posts, I immediately registered on the site. I could really use some help :(
I'm 13 years old, and I've been dealing with constipation and stomach pain for over a year. I'm also nauseous all the time and don't have an appetite.
I went to the emergency room 5 times last year. I've had a barium swallow, two endoscopies, two colonoscopies, x-rays, MRIs, ultrasounds, CAT scans, allergy tests, etc. I went on a gluten-free diet (failed). I eat more than 150% of the recommended daily value of fiber (for an ADULT); doesn't help. Been using Miralax for months (failed). Taken laxatives in the form of pills and liquids and such (failed). Enemas used to work, but lately they haven't helped much.
I've only been diagnosed with Irritable Bowel Syndrome, but there is so little stress in my life that I don't understand why I've been feeling so horrible (especially within the past 2 weeks). I'd been a happy, healthy vegetarian for over 2 years, and 6 months ago became a vegan. I felt better when I cut out dairy and eggs, and had no pain or constipation for about 6 weeks. But then it came back.
I'm so tired of being in pain. I'm sick of missing school.
I'm hoping, just for the sake of finally being diagnosed with something real, that I have colonic inertia. Does it sound like I do?
Thank you!
-Lauren
I almost forgot to mention, I've taken a couple different prescribed medications for my constipation, but they made me so nauseous I couldn't eat for days.
Does your mom know how you feel? I would love for her to read this post to see how badly you are feeling and how much you need to find answers. I would be love to problem solve with you but no advise can be given by me without one of the folks involved.
Yes, my mom knows (I read my post to her and told her about the site). Both my parents do. We're doing everything we can, but it's getting too hard for me to handle. I'm going to New York City this coming friday to see my gastroenterologist, are there any questions I should ask her? Maybe suggest a sitz marker test?
The number one thing that helped me is to keep a log book on what I felt like daily. Is there any thing that makes it feel worse or better. Have you done anything walking or lifting that makes it better or worse. This makes it easier when the doctors ask you many crazy questions. Also keep track of the doctors you have seen with their names, hospitals and addresses and test that you have had done. Keep track of the test test results so no test is redone unless needed. If you go to other doctors this is a great tool.
You hold in there there is help from the medical field out there. I hope you find some help from your doctor on Friday and let us know how it goes.
You hold in there there is help from the medical field out there. I hope you find some help from your doctor on Friday and let us know how it goes.
Those are some good ideas, thank you :) I'll be sure to tell you how it goes.
I'm getting a sitz marker test this week!
hey everyone,I'm Renee. I'm new here as well. :) just came across this website and am so grateful,all the info here is really encouraging and it helps so much to know I'm not alone. :) I'm 17 years old and have been sick for going on 3 years now,and after reading all of this info I'm really thinking I might have colonic inertia. I've been to so many doctors and they diagnosed me with IBS,(I.E,they have no idea what's wrong,but I had a colonoscopy and was told everything looks normal)my question is,if it's nerve damage,can they even tell that from a colonoscopy?
I've been taking miralax for a little over a year and a half now,and it has helped me at first,but I'm afraid it's starting to not work anymore.I really am afraid of what will happen if it stops working,because nothing else seems to help,idk what I would do.I was hoping I could ween off of it slowly and switch to benefiber,just because I've been reading about miralax and negative side effects associated with long term use. this really scares me because I really don't think I can stop taking it. does anyone know if miralaz eventually stops working? also,is it harmful longterm? is there anyone here who has been taking it for a long time(years) with no ill side effects? any responses are really appreciated.my doctor seems to think i'm making everything up just because my colonoscopy was "normal." idk what to do anymore,esp. now that my doctr basically is telling me I'm fine.I wish all of you good luck.:) hopefully we can all figure this out.
I've been taking miralax for a little over a year and a half now,and it has helped me at first,but I'm afraid it's starting to not work anymore.I really am afraid of what will happen if it stops working,because nothing else seems to help,idk what I would do.I was hoping I could ween off of it slowly and switch to benefiber,just because I've been reading about miralax and negative side effects associated with long term use. this really scares me because I really don't think I can stop taking it. does anyone know if miralaz eventually stops working? also,is it harmful longterm? is there anyone here who has been taking it for a long time(years) with no ill side effects? any responses are really appreciated.my doctor seems to think i'm making everything up just because my colonoscopy was "normal." idk what to do anymore,esp. now that my doctr basically is telling me I'm fine.I wish all of you good luck.:) hopefully we can all figure this out.
KP, Hello and welcome. You sound a lot like I did before surgery...YEP get the Sitz Marker test...when you take laxatives and such and they don't work , then you can hear all the slouching around in your colon, and the bubbles rolling, cramping , pain, nausia...when the stuff you are taking no longer works, could mean like me that you colon is not working any longer. No meds or anything over the counter worked for me. Many made me sicker, and it was costing me a fortune trying all this stuff. So if you have insurance ask for the test and that will give you a more difinative answer of what is going on with you. Trust me I feel your pain ...
Leslie
Leslie King
Leslie King
1984 Tubligation 1992 Diagnosed with Thyroid tumor
1993 Gallbladder Removed 1997 Hysterectomy 1998 Carpol Tunnel
1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5
2003 Sigmoid Colon Resection
2006 Right Knee Replacement 2005 Breast Reduction
2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
I have just been dx with Colonic Inertia yesterday, Sitzmarker study day 7 show markers piled up near cecum and at the beginning of descending colon. Passed only 5 markers ouy of 25 after 7 days.
Things is, I had Extreme Pain in cecum area last August.. before now feeling unable to go without all kinds of breathing techniques. Thought it was my appendix, even tender to touch, but I was on a road trip, and then it went away after 4 days. But now I have and achy, intermittent feeling in the same area.
Could this be a stricture? Since some markers never moved from there??
I was dx 17 years ago with proctitis, then another GI insisted I had Crohns, even though biopsies did not prove that, and never had any diarrhea. Then next GI doc said Sigmoiditis/proctitis. Most constipation problems relatively mild until 4-5 years ago after divorce, hurricane and Mom's death all within 9 mos. of stress and also moved to another house and I wonder if the house made things worse. .
Has anyone found mold in house has caused increase in symptoms??
I went off gluten, dairy and ate meat only occasionally. I would use Senna tea to get things going but tried to be careful of not taking that more than 1x a week because I know stimulant Laxatives will cause a colon not work, if used too much....
Well it turns out no matter how Conservative you try to be... Laxatives over weeks months or years is Bad.
So 6 months ago, having trouble going, current GI sent me for a MRI defecography which showed a large rectocele. That GI never share the info with me until 4 months later. Was having achy pain lower right so went to GYN he told me about the defecography report and GI dx of Slow Transit Constipation... I was never told by the GI. SO things got worse I felt I was unable to go, thing seemed was in the way but I was always able to press down there and work things through, but then I had to use "short breaths" to start things going down at all, kind of like Lamas. Went back to GI doc and she sheepishly referred me to a surgeon
He said defecography should not have been 1st test... wrong order and set up the Sitzmarker study after hearing my story.
So I should dump the GI doctor right?...soI called the office of then GI I left to go to this and the receptionist said I can't come back once I leave????
Surgeon is telling me I need my colon removed, small intestine connected to rectum.... oh and by the way because of the rectocele, I should have that repaired First... then the 'major' surgery.
Has anyone here experienced both back to back?
I am day 2 hearing this. I believe I am not there yet...
I was trying to add fiber to my diet 2 weeks before Sitz but then it got ordered, and I was told 2 days off all fiber laxatives etc. and I am wondering if the fiber made things seem worse than they are...(denial?)
I was going each day of the study, but only once a day and a small amount.
I want to try Colonic hydrotheraphy , and I have kept an appointment with a Bio feedback Therapy place that was to work on rectocele, but they say now they can also help with motility problems.
Anyone find this helpful??
Thanks
Things is, I had Extreme Pain in cecum area last August.. before now feeling unable to go without all kinds of breathing techniques. Thought it was my appendix, even tender to touch, but I was on a road trip, and then it went away after 4 days. But now I have and achy, intermittent feeling in the same area.
Could this be a stricture? Since some markers never moved from there??
I was dx 17 years ago with proctitis, then another GI insisted I had Crohns, even though biopsies did not prove that, and never had any diarrhea. Then next GI doc said Sigmoiditis/proctitis. Most constipation problems relatively mild until 4-5 years ago after divorce, hurricane and Mom's death all within 9 mos. of stress and also moved to another house and I wonder if the house made things worse. .
Has anyone found mold in house has caused increase in symptoms??
I went off gluten, dairy and ate meat only occasionally. I would use Senna tea to get things going but tried to be careful of not taking that more than 1x a week because I know stimulant Laxatives will cause a colon not work, if used too much....
Well it turns out no matter how Conservative you try to be... Laxatives over weeks months or years is Bad.
So 6 months ago, having trouble going, current GI sent me for a MRI defecography which showed a large rectocele. That GI never share the info with me until 4 months later. Was having achy pain lower right so went to GYN he told me about the defecography report and GI dx of Slow Transit Constipation... I was never told by the GI. SO things got worse I felt I was unable to go, thing seemed was in the way but I was always able to press down there and work things through, but then I had to use "short breaths" to start things going down at all, kind of like Lamas. Went back to GI doc and she sheepishly referred me to a surgeon
He said defecography should not have been 1st test... wrong order and set up the Sitzmarker study after hearing my story.
So I should dump the GI doctor right?...soI called the office of then GI I left to go to this and the receptionist said I can't come back once I leave????
Surgeon is telling me I need my colon removed, small intestine connected to rectum.... oh and by the way because of the rectocele, I should have that repaired First... then the 'major' surgery.
Has anyone here experienced both back to back?
I am day 2 hearing this. I believe I am not there yet...
I was trying to add fiber to my diet 2 weeks before Sitz but then it got ordered, and I was told 2 days off all fiber laxatives etc. and I am wondering if the fiber made things seem worse than they are...(denial?)
I was going each day of the study, but only once a day and a small amount.
I want to try Colonic hydrotheraphy , and I have kept an appointment with a Bio feedback Therapy place that was to work on rectocele, but they say now they can also help with motility problems.
Anyone find this helpful??
Thanks