Colonic Inertia and Diffuse Dysmotility

[Dollyabc]

It started about 3 years ago. I couldn't get up in the morning because of pain in all my joints. I couldn't sleep at night and became very depressed, which made things worse. I went through several blood tests and cat scans, nothing showed. My doctor gave me some samples of Cymbalta that worked wonders but by the end of the day I felt like my legs and arms were being pulled off!! My family doctor then sent me to a Rheumatoid specialist and he diagnosed me with fibromyalgia. The reason for the pain at night is because the Cymbalta is a time release. He then gave me something for night time. It literally knocks me out that I can't wake up in the morning so I only take it when the pain is really bad. During the same search for this problem we were looking at my colon, I was constantly constipated and very miserable as well. My family doctor must have tried 6 different laxatives to open me up.  Unsuccessful, it seemed to make me worse.  I then went to a specialist who performed a colonoscopy and found nothing.  He said that sometimes folks just need a good cleaning.  Well, it got worse over the last two years so I went back to him this past April. This time he did a sitz marker test which showed colon motility.  I asked him "now what?".  He said well you are too young for surgery (I am a 40 year old woman) so take the Senna's and Miralax every day for the next 3 months and we will follow up then. So now I am taking both of these laxative forms and fiber like crazy and I am still filling up.  The only way I can move my bowels was to drink the solution that most people use before a colonoscopy.  It was always a hit or miss.  I was full of gas, which is very uncomfortable and embarrassing when sitting with 400 other people in a building.  I am fed up and go back to my family doctor who is also concerned.  He then sends me to a University Hospital to see the "TOP" Doctor there.  He does a weeks worth of test, another colonoscopy, a digestive transit test, etc. and came up with severe colonic inertia, a few colon polyps (that were lost or as they put it "misplaced" on their way to pathology) minor paradoxical contractile activity, a few small mouthed diverticula were noted in the sigmoid colon and diffuse dysmotility.  We did these studies to get a better idea of what is going on with my digestive system and to possibly do the surgery of removing the colon and connecting the small intestine (no bag).   The doctor doesn't want to do it now because the stomach was slow to digest the first 2 hours, with normal digestion at 4 hours, and also because the small intestine has minimal issues also.  He said that if there was just colon motility then he would have no problem.  He also said he can do surgery but I would have a bag...No way, not at 40!!.  Some days though (at least once a week) I do consider it.  His suggestion is to continue Senna with a laxative tea each day and to follow up in 2 months.  Am I making things worse using laxatives (that don't work) like this???  Once a week when it's time to "double" up with all the laxatives is the only time I have a bowel movement.  My joint pain even acts up.  I also get depressed even on the Cymbalta.  Mostly because I feel very uncomfortable, fat, etc... I just need some good advice from more people in my situation and from doctors who have seen my case before.

[rutthnana]

I had the same kind of colonic inertia that all of you describe and my MD did all those embarrasing tests.  they even did a small laparascopic surgery to see if they could identify a cause before removing my colon.  My colon was huge  and my small intestine was moving at a rate that stunned my surgeon.  the colon wasn't moving, so the small intestine was trying to take up the slack (and failing).  I needed the laxatives used for colonoscopies and enemas to have a BM.  It was painful and humiliating.  The thought of losing my colon terrified me.  I got on the internet and into every chat room on the subject.  One connection seemed to be Cymbalta.  I had started Cymbalta for pain and mood 6 months before the consipation became a big problem so I did not  connect them.  The surgeon didn't even know about the connection.  I came off the Cymbalta and am completely normal today, but I miss the body ache control.  Please don't have surgery if you are on Cymbalta.  Mayo Clinic is looking into this, but it is very rare 1 in 10,000 -1in15000 cymbalta users get this so it shows up so rarely that it was never connected.  Also it does not start when you start taking the medicine.  For me it was over 6 months, so I saw no connection.  

[Mamaj0826]

I have everything in your post from fibromyalgia (on clonazepam and soma) to colonic inertia and small intestine dysmotility, however, I also was diagnosed with anal sphincter that does not relax, all the nerve endings in my rectum are dead so no triggers, mega colon and mega rectum I am 45 and had a total colectomy with anal anastomosis (they attached my small intestine to my rectum).  Prior to surgery I was on amitiza 24meqs bid, senna, bid, miralax bid, 10 ouc citrate of mag, I even starte Alli as the biggest complaint was severe diarrhea and still 21 - 25 days no bowel movements.  But the scary part was I had no feeling that I even had to go because of the mega colon/rectum and lack of sensation in the rectum.  So all the while I complained about this issue no one took me seriously until the GI doc I worked for did sitz mark (11 rings still after day 10 and the stomach bug), Defegram, ugi w.sb follow through and anal manometry.  He finally believed that my problems were real and that surgical intervention was necessary.  Long story short the surgery went ok - many complications though after (now 3 mos post op) I have to go every 10 days for biofeedback therapy.  But with addition of reglan 20 mgs 4 x/day I at least pass gas and have 2 very small bowel movements every 2 -3 days as opposed to 3 weeks.  Because of the small intenstine dysmotility other than a total ileostomy (way too young) there will be no better improvement than this as the issue is now the small bowel and there isn't anything further that can be done.  So yes the surgery worked in one sense, it will not resolve all issues.  But as the doc says - better every 2 3- days than every 2 - 3 weeks which is true.  And other than prebiotic, probiotic and reglan all laxatives are gone.  But don't listen that it is only a month recovery as I stated I am in monthe 3 and just finally starting to fell my self.  However the joint pain is definately associated with lack of BM's and increase in back pain.  I hope this helps

Jayne

[adaperl617]

I don't think Colonic inertia discriminates on age or gender. At 31 i was rushed into surgery for a large bowel obstruction. For years, since i can remember, people and doctors always told me to eat more fiber, drink more water and you will be OK. Well, it almost killed me. The first time i ever heard the term colonic inertia was after i got out of ICU and my surgeon said he thought that's what it was. i had gone to endless doctors and gastro dr's and no one ever mentioned this. When i had my colostomy back taken down, they did a total colectomy for colonic inertia. They re-attached my small intestine so no bag. My quality of life is so much better but I still have to watch what i eat and drink Plum juice regularly. Small bowels have started to slow down after so many years. I might one day have to go to a bag, but after living with one for 4 months, it isnt pretty but if it means seeing my kids grow up and eventual grandkids, I can do it.

[Casmige]

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[Casmige]

Hi!!,

I am afraid to eat anything substantially any longer.

For the last 8 years I have suffered with Sudden onset chronic constipation.  I am & have been under the managed oversight of a Gastrointerologist & *we* are waiting for the opportune time for a Resection of the redundant sigmoid aspect (Laproscopically)

I have undergone a successful radial Hemorrhoidectomy to deal with Rectal intussusception.

I have a Rather Long Sigmoid Colon aspect...it is looping in nature Forming almost a figure 8 in aspect.

Additionally, there is apparently some distension of my transverse colon leading to a mild twisting/intussusception @ the Splenic *Corner*/Transition to the descending colonic sigmoid segment.

I Currently have to self Administer a High Colonic enema repeatedly for at least 15-30 Minutes in order to have a comfortable/complete Bowel Movement....with occasional Revisits throughout the day to finalize the process to a point that I am NOT left with headaches, Back-aches or that feeling of *Needing to go*.

This entails using a rather COPIOUS amount of Double Filtered water (Using a Hose from off of a hand held detached shower head set up) & I have devised a set up of actually using the shower stall as my toilet since the process requires me to assume a kneeling position with the use of Stomach area Massage/manipulation to *get things in alignment* for an unobstructed evacuation which ends up quite spematic in the process.

Sometimes this works rather quickly (the 15 minute time frame) other times it takes an hour with additional revisits as the process actually is quite aerobic & wears me out like a hard & furious work-out.

I am a Fairly Healthy 45 Y/O Caucasian Male.
5'10", 190 Pounds.
I am of French/Irish/Jewish descent.
I am a Dietitian by Degree.
I have Been a Vegan Vegetarian since I was about 22.
I Don't drink/Smoke.
I Consume a bit of Coffee every day:- Self Brewed with Stevia Sweetened Atkins based Vanilla Shake Benefiber/FiberSure enhanced *Coffee Creamer*.
I Stay WELL AWAY From Senna & Psyllium as they make me Bleed horribly after a few days of use.
I Drink at least 1 Gallon of Distilled water per day.
No Sodas, Aspertame, Saccharine, or the like.
I Steer very well clear of Processed foods & Sugar.
I eat 1 or 2 times daily.
I have recently added Magnesium (500-750 MG's daily) to my Diet.
I occasionally Now will allow Egg Whites & Cheese.
I Drink a 4oz container of v-8 & 1 Dan active every morning.
2 - 4 OZ Containers of ACTIVIA (Supposed to make one regular)
I eat Whole Organic Foods in this order Primarily:-
1). Whole Grains
2). Vegetables (Raw & Cooked)
3). Nuts
4). Processed Vegetable items (Tofu Based Mainly)
5). Fruits.

After The Evening Meal (@ Around 7PM at the Latest) I consume 2 - 4 Oz Activia Yogurt Cups + the following with about a total
With 1 Quart of Filtered Reverse Osmosis Water

My Questionionalble Concern is...after this rather important background:-

Seeing as how my condition is non-idiopathic as it may well have been an underlying GENETIC issue (The *Jewish* Back-ground) Perhaps Exasperated by my Dietary aspects (It is Well Known that Vegan High Fiber Diets actually promote this type of Sigmoid Volvulus in African, Sub-African, Indian & Middle-Eastern Populations).....would your product in ANY WAY Actually HELP in the facilitation of a Bowel Movement without engendering me towards an emergency Colonic Resection AND should you not possibly disclose that there may well be a Genetic Predisposition & perhaps Mechanical Underlying conditions that the Potential customers may well need to KNOW about & consult with a Doctor for preliminary review & oversight BEFORE actually using your product>???!!!.

I'd LOVE to dispense with the Enema's & the rigor of my present routine.

Seems that My Diet is well in order of being optimized.
I'd rather avoid Surgery however it seems inevitable.

***AS of 03/31/08 I have HAD the Surgery with a removal of 1 1/2 feet of lower sigmoid colon With the commensurate volvulus now gone However. as of 05/18/08 the constipation is continuing & ONLY Rectified by a high enema....with fecal transit apparently stopping @ the Splenic Flexure aspect of my transverse colon (Or where the transverse starts to descend - I know Because I have gotten quite intimate with the aspects of my colonic structures & can ONLY get relief from a self administered high colonic to the Splenic Flexure aspect). The Resection of the redundant sigmoid aspect additionally STOPPED my Prolapse which mechanically may have had some involvement with final eliminational aspects.****

I am 75% better off than I was before the surgery....I believe that I may be genetically predisposed to Hirschsprungs disease although my Gastrointerologist does not heartily agree since my age presents as the limiting factor...

Fact is even being a Vegan Vegetarian I have NEVER had more than a single B/M per day under the BEST of circumstances.....with the Cramping & fullness always being @ the Splenic Flexure.

Just wanted to offer my story.....

Wish I could find the magic Bullet.......this condition is greatly interfering with my Job Prospects since I am forced to find & retain a Nearby Hotel Room on a Weekly basis so as to avail myself of suitable facilities to perform my needed & daily colonic ....With Supervisors nor managers "Getting it" that I have a Bonafide disability...albeit with a HOSE & need for High Colonic Enemas being my Wheel-Chair...>Grrr..>Frustrating.!!

[kathryn lee]

I was wandering where your abdominal pain was located? Mines in the upper right abdomen. Ive been through every test imaginable and nothing. Ive been to the ER twice and nothing, except the first time I went my internist wanted to admit me for further tests, and i chickened out. I went again on Labor Day wknd. and they discharged me. I think they didnt let my internist know because it was 10;30 pm. I made an appt. with a gastroenterologist, and he ordered a gastric emptying test, which revealed nothing. Im scheduled for an upper GI Oct. 15th. I think its my gallbladder because I get a sharp stabbing pain in my upper right abdomen area. Anyways if I dont feel better Fri. Ill head straight to the ER after school. Good luck!!!

[iAmanda]

Dolly,
It is hard to explain to people that "Hey, I can't go to the bathroom", and they just simply reply "take extra fiber, and laxatives" but those never, ever work. They look at you like you're crazy. But you can't really to expect them to understand since they haven't gone through this mess. But its nice to know you're not the only one. I'm actually signed up with a social networking site called Facebook.com -- and found a group on there for people who had their colon's removed. Reading the comments posted from people part of that group gave me so much hope, (most of them had bags though), but they said the surgery was the best thing ever. It was 100% success stories in the end.

Luckily, I currently don't work. I'm way too focused with school. Its not easy to deal with at all, I'm constantly in bed. Which has led me to fall behind with school and having to cram pack everything to stay ahead. The only way really to cope with this is rest, and pain medication. I'm still able to manage most of my daily activities, I work with computers a lot so thats not a problem at all. But anything else that involves me walking around a lot, forget it. For some reason, working out and walking around a lot gives me cramps. Very annoying. I suspect its scar tissue from my bowels struggling, but I'm still unsure. I just know I have a lot of it.

And, I've never heard of Hydro therapy, but I'll look it up. Maybe its something I can consider, so thanks for bringing it up :)

[Dollyabc]

iAmanda,

have you tried the hydro...therapy?  I heard about it but have not been able to find anyone who has had it done.  

[Dollyabc]

I had my thyroid checked about 6 times in the last three years, nothing.   I heard that sweeteners like Splenda can flare up fibroymyalgia and could have something to do with IBS.  I stopped using it several times on and off, now off completely and it has made no difference.  I wish it would work on me like it does you!  I went to the ER last night because my temp keeps going up and down and my abdomen was burning with sharp pain and tender.  Apparently it was from the laxatives.  I know I am making things worse using them but after 5 or 6 days when I am completely blown up I have to double or triple up so that I can go.   If I don't eat then I get headaches and my other half here yells at me because he says I still need to eat.  I have even tried sticking my finger down my throat so that the food wouldn't get past my stomach.  I am not even successful at that lol...  I was also told about the hydro..something therapy where you get the warm water to flush out the entire system.  It runs about $150 each time.  I looked it up on the internet and it takes more than one trip.  After all the deductibles and meds in the last three years I have no money left for to "try" this a few times.  Can a doctor admit you in the hospital just to have a tube put in and drain you?  This is something I'm going to look into.  I know it won't cure it but at least I will feel better for a few weeks.  Have you tried this?  

[peachtreekc]

I can't believe it! I explain my constipation problems to friends, and they think I'm wierd. Do you have thyroid problems? I do and I have fibromyalgia, which was diagnosed by a rheumatologist. I saw a gastro doc last summer, had an abdominal ultrasound and a colonoscopy. I've had IBS since I was in college. I took Zelnorm for years. If I eat or drink anything with Splenda or BHT (a preservative, and it's in everything!), I have explosive diarrhea. I had a cat scan of my digestive track two months ago and they didn't find anything. However, when the gastro doc was sharing the results with me, he asked me why there was stool all through my colon. But, he said to come back in six months. I think they tell you that when they don't know what to do. I had never heard of colon inertia until about 6 weeks ago. I'm 51 and I've decided to go back to my internist. Also, I had my gall bladder removed about 4 years ago.

[Dollyabc]

Thank you iAmanda, It sounds like you are having the exact same problems.  It is nice to know I am not alone.  It's hard to explain how I feel to others who have not had problems like this.  I am in the process of seeing a new doc at another University Hospital and hope to hear a different response.  How have you been dealing with work and every day activities?  I have been on FMLA since June and can't see returning with the same situation.

[iAmanda]

Wow. I have been diagnosed with colonic inertia myself just recently and I'm 18. I've dealt with constipation all my life. Meds don't help me either. I'm on several prescription laxatives and one ulcer med that is supposted to induce loose stools. No luck. I also had the colonoscopys (found 1 polyp in the rectum), gastric emptying study, and sitz test, which showed a lot of rings (according to nurse) -- still waiting on results though. But I am planning to get the removal of the colon surgery soon (according to doctor), and be reconnected. I can't really offer much advice since I'm seeking some myself, but its nice to know you're not the only one going through this mess! But one thing I can say is to try another gastro doctor. Just keep trying. Good luck with everything :).