Well I have been officially diagnosed with colonic inertia. The sitz marker xrays show that my stomach and small intestine are working but my large intestine is not.It is slow and sluggish which is causing the constipation and could have been the cause of why my colon has now become tortuous ( long and "loopy"). From the xrays they showed the rings passed through everything then stayed in the large intestine. They could still see atleast 19 rings in the large intestine out of 24 in the 3rd xray.
My options ..
He spoke with my GI dr (ugh) and she suggested I see a constipation specialist at her facility who has access to drugs not commonly prescribed etc. and might be able to come up with a solution for me instead of surgery. He feels I should see him and pretty much see what he has to say and experiment so to say to see if anything helps me. The thing that upsets me about this option is that my GI dr never once recommended this "constipation specialist" to me over the last couple of years I have been going there and now that I have seeked another opinion outside of their facility they are trying to get me to go back there. I am done going through all these tests. Not to mention the last experimental drug they put me on made me so sick I ended up missing a week of work and even leaving work early cause it made me feel like I had the flu. Laxatives have the same effect on me as they make the colon try to work and just make me sick in the process. Me and my husband both personally do not agree with this option even though the surgeon feels I should give it a shot.
My other option is the total colectomy surgery where they would remove my large intestine and attach my small intestine to my rectum. This would require no bag. And I am a candidate for this surgery because my small intestine is still working. That is another reason he had me do these xrays. Not only to see if my large intestine was working but to also see that the small intestine was working.He did say that a majority of the people who have this surgery live happier lives. He did say it is a major surgery though and that with every major surgery there are complications etc.
He suggests that I see the constipation specialist and if I am not happy have the surgery. I personal am ready to stop having a million tests and pills shoved in my body and just get rid of the problem. My husband strongly agrees with me as I have been going through this for almost 6 years now.
I am gonna think about it all over the long weekend and then make a decision. I am leaning towards surgery.
In the mean time does anyone else have colonic inertia with a tortuous colon? Any particular diet you are on (I no longer eat dairy, red meat)? Medications you are on etc (other then Miralax which I am already on or amitiza that makes me sick) ?
I also have colonic inertia and a tortuous colon, but I have small intestine, stomach, and rectal problems too so my case is a little different from yours. For the constipation I have tried Miralax, Milk of Magnesia, Magnesium Citrate, Docusate, Doculax, Senokot, Lactulose, Amitiza, and probably some others that I am forgetting. I am tube fed so my diet doesn't really apply.
I can't comment about a diet, but you may also want to read some of the posts by Morecambe who had his large intestine removed for reasons other than constipation. His posts will give you some information that may help if/when you do have your large intestine removed since taking that organ 'out of the loop' will produce changes that may involve copious output of fecal material.
Thank you so much for the feedback,... out of the meds you listed were any of them dr prescribed? I recognize a couple of the over the counter ones I have tried (Miralax, Milk of Magnesium, Magnesium Citrate, Duculax etc). And I have been prescribed Amitiza only for it to make extremely sick. Just wondering what possible drugs this specialist could possibly have that other doctors cant prescribe. I dont want to be a guinea pig and be trying stuff that is not safe. I dont want my condition to become worse because of them where I cant later have surgery etc.
Thanks CalGal - I actually have been discussing the surgery with Morecambe in another forum regarding the surgery in general. I am hoping to find people on here with the same condition as me to see if they have found other ways to help their condition other then surgery. I feel there really is no other option at this point as I have had a million tests done on me and have tried so many different constipation products, drugs fibers etc.(my story here: http://www.medhelp.org/posts/Gastroenterology/Tortuous-Colon/show/1535243#post_7437935) I dont want to waste more time, money etc with seeing this specialist if surgery is really the best bet for me.
Thank you. I am trying to find out if there are really that many choices out there prescription wise that this specialist could possibly give to me that has not already been tried etc. So far I havent been able to find anything, another reason I am leaning towards surgery. Apparently there is no cure other then surgery since my colon is not working. Medication would only be temporary fix etc.
I am not a doctor or have any knowledge of this other than what I have experienced and my treatments. I was also diagnosed with severe colonic inertia and the tortuous colon. After my 2nd opinion they both determined that I needed a complete colectomy. I am not prepared for that step yet. I have been working with a chiropractor, massage therapy and accupuncture and have found my condition improving. I have had numerous bowel movements without the use of laxtives and the bloating has really subsided. This is such a huge step in making this decision for this surgery. Anything can happen and I am not prepared for the complications and/or the wearing of a bag the rest of my life. I made a decision to try other means for 6 to 8 months, not being real optismistic at first, but wanting to give it a chance. The chiropratic is covered by insurance, but the other is out of pocket. I didn't want to spend the money, but if it keeps me from having the surgery then it is worth it. So far it is working. We have tried some enzymes and Chinese Herbology and I am now very optimistic that I can strengthen this muscle and and have a more normal life. It may not be perfect, but it's already so much better. I can live with this and I wasn't able to continue the way I was. I hope this helps and I hope you will find a way other than the surgery. I have had this for 40 years, although it's been much worse the past 3 years. Good luck to you.
I have also had a constipation problem all my life. My colonoscopy five years ago showed my having a tortuous colon. I have taken miralax, benefiber, magneseum citrate (for 20 years), the last five years. A year and a half ago it just quite working. I am bloated and hardly ever feel "empty." I saw the gastroenterologist three times from Dec. 2011- Mar 2012. He basically patted my hand and called it IBS. I have been on anti-fungals now all fall and winter. I eat no gluten, little other breads or brown food, no dairy, and very little sugar. I have lost weight, but I still have rumbling and bloating a minimum of 5 days a week. I am in the bathroom at least an hour a day for the "sludge stool" to move through all the twists and turns. I thought about going to a new gastro person, but from all the posts about it, it doesn't look as if they can help much. I am interested in what you posted about message therapy. Since that seems to be helping, what therapy do you call it? How do I find a special therapist who might be able to do the right techniques? I will take all the help I can get...I've quit complaining to most people except my husband...poor guy!
I was obstipated - stuffed to the gills - for over 40 years, from undiagnosed untreated PID which resulted in all lower organs being connected with scar tissue. I have been advised to remove my colon by 6 doctors but want to avoid that. The discomfort and misery and worry of this condition dominate my life absolutely. I have avoided grains which hasn't helped. I am very careful about my diet though now I see a low fat no dairy diet is recommended and I do eat nuts and have cream in coffee and small amounts of yogurt. I have no choice but to eliminate all that. I also see that a high fiber diet is recommended --this is contrary to what my acupuncturist and doctor recommended.
I keep hoping that if only I find the right grain to bulk up my stool and push up against the sides of my intestine to stimulate a bowel movement maybe that will help me considerably.
I have been having acupuncture and chinese herbs but without results. My acupuncturist even ended up recommending surgery....
Sorry to go on for so long (this is my first time on any forum). I will end with two questions: has any particular diet helped anyone? has anyone tried prucalopride (a kind of zelnorm, the motility drug that was taken off the market) which isn't available here.
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