Wednesday, 12 April 2017

5 Things You Should Know About Colonic Inertia

I was diagnosed with Colonic Inertia back in October 2016, you can read my story here if you haven't already.

It was my first "real" diagnosis I suppose. Prior to this they had found high levels of infection in my blood, saw repeated thickening and inflammation of my ileum in my MRI, over ten x-rays of my bowel all proving my bowel was at its maximum, tested positive for SIBO (Small Intestine Bacteria Overgrowth), found minorities in my colonoscopy... Despite those discoveries, they were still not the answers my doctors and I required to move forward. I was consistently being told that they didn't know what was going on and because of this, how they could help!

When I was diagnosed, I had never heard of "colonic inertia" and my surgeon noted it was very rare condition. I had so many questions on my mind, but the first and foremost was "what causes it?" I needed to know what I had done in order to spread the word to warn others. The answer he gave me? "We don't know. There is very little research; all we know is it is far more common in females between their late teens to late twenties. I suppose it could be something to do with hormones?"

So sometimes, a diagnosis doesn't mean you will be magically fixed. Especially if it's a rare chronic disease like colonic inertia. So I have compiled a list of the top five things I believe everyone should know about colonic inertia, because it sucks and I don't always quite explain to my friends just what I go through!




1. Chronic Constipation
The long and short of it is this -Colonic Inertia is a mobility disorder which consists of severe/persistent chronic constipation, chronic trapped gas, bloating, abdominal pain, food intolerances. Supposedly, sufferers of colonic inertia go for a bowel movement on average every 7-10 days, although, some, (like myself) wait far longer.

2. The Cause Is Unknown
It is a dreadful feeling when you are diagnosed with a long-term illness and you don't know what caused it. You feel lost, scared and confused. Was it my diet? Was it because I was indeed a young-female and my hormones were beginning to settle like my surgeon speculated? Or was it the many hundreds of other possible causes for chronic unresolved constipation? No one seems to know for sure.

It is thought however, that most common cause of colonic inertia is because of nerve or muscle damage. Supposedly, through previous surgery, cancer, hirschsprung disease, or quite possibly parasites.

Personally, I try not to dwell too much on the cause, I speculate that perhaps my SIBO (which was diagnosed only two months prior) did indeed impact this, but I can never be certain now and looking back will certainly not change this.

3. Laxatives
The advice I hear from loved ones all the time is, "why don't you just take some laxatives?" Well, simply put my colon is paralysed and my nerve cells in my colon do not work at all. To put things into perspective, it took me twenty-one days for a bowel movement last year and I was hospitalised for the final two weeks of the three because of this. The nurses were giving me prune juice, four colon cleanse drinks, four laxatives and applying two suppositories a day, it took ten days of this routine before I finally had a bowel movement.

In order to try to keep my colon working I now take six colon cleanse drinks a day, four laxatives, and two suppositories every three days in amongst my other medication. On average, I now wait thirteen days for a bowel movement.  I have been told I must continue with treatment to stabilise my condition, which although tablets and dosages change, the truth remains the same, I must take an alarming amount of laxatives in order to move my bowels. If not I have been informed I face ending up with life threatening bowel blockage.

4. Eating/Drinking 
The longer my constipation has continued for the worse my symptoms get, which, in turn means the less I eat. As you can only imagine, eating when your bowel is completely full to brim, means that you will often experience food and drink repelling back up because there is simply no space for it to go. On these occasions, my colon is always uncomfortable, and in severe discomfort. I can barely leave the house and feel lethargic. I often cry uncontrollably, laying curled up in a ball on the ground with no escape from the pain, nausea, vomiting, with lack of food and consuming a purely liquid diet until my bowel empties. This could be hours, days or even weeks later.

This still remains a constant cycle, despite now months on and having tried more laxatives, more anti-sickness, stronger doses, more often, etc. It means that once my bowels open, a new cycle starts, where I can learn to embrace the good days before my symptoms build up slowly towards the end of the second/third week mark from my bowels opening!

5. There Is No Cure
When I am not suffering I try to fill my time trying countless supplements, treatment plans, different diets, detox programs, probiotics, enemas, yoga, laxatives and so forth.

I have seen dozens of different doctors from standard medical praticioners, to surgeons, private consultants, naturopathic doctors, physical therapy specialists.. As well as read numerous books dedicated to the gut, and chronic constipation. So many hours of research and thousands of pounds spent, unsuccessful treatment plans, all in the hope to aid my condition.

I have been told by numerous doctors repeatedly over and over, that there is no cure and only stabilisation/management. Which, provided I find the right cocktail of medicines to stabilise my Colonic Inertia, I have also been advised that I will require taking them for the rest of my life.

Which, as unfortunate as it is, I remain hopeful that knowing the answer is clear - Colonic Inertia (along with the majority of my other chronic illnesses) and I will become a package deal forever. As a result, I continue to research, and help others by becoming an advocate of this condition, in the hope that one day, there will be a cure.


"The Hopeful Chronic"




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4 comments

  1. I am about to have surgery to remove 80% of colon from colonic inertia.
    My doctor promised this would work and I would find relief. I have suffered with this for 40years.

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    1. Hi there, I am so sorry to hear that, my doctors have told me pretty much from the get go, I may need to have this, and we are still trying one last avenue before going down this route.

      Please feel free to email me and let me know how it goes, I would love to hear if you have improvements.

      Best wishes for the surgery.

      Love,

      Claire

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  2. I also have been diagnosed just last year (2017) with colon inertia. The Severe straining over the last 15 years has caused pelvic floor dystension, prolapses of rectum into the vagina and terrible diverticulitis. I’ve had my pelvic floor surgically corrected with mesh. Another surgery repaired the septal wall. The first surgery pulled up the rectum (rectopexy)and removed 12” of colon from rectum to sigmoid flexure). I even had my hysterectomy way back in 06 thinking it was the fibroids pressing down causing bowel problems. My surgeon is saying my pelvic floor dysfunction creates a “dam at the end of the river” so a colostomy or ileostomy is his option/fix-all. My pelvic floor doctor disagrees with my surgeon and is having me use miralax and better diet. That is working decently. No hard pellets or no BM’s to soft formed little stools. With my pelvic floor therapy I’m straining less. Finally got the “Squaty Pottie” I’m told position is everything! I am 61 and have been dealing with constipation as far back as I can remember. First colonoscopy in my 20’s. The treatments I have been given have been crazy, helping some but not enough. One I remember was “you’ll be on milk of magnesia for the rest of your life”. One GI Dr said “take a gallon of colytely each time you haven’t gone in two days”. Try to stay working with that suggestion. The best medicine I was prescribed was linzess. Caused diarrhea but honestly that’s better than constipation! Now it isn’t working anymore. This caused me a lot of distress. I depended on it plus 2 tab of colace. I now only have my cruciferous veggies, prunes, and miralax. I have also been put on disability as stress really intensifies the abdominal pain, nausea, retching, acid reflux, rectal pain, sacral pain and worsens the constipation. Holistic medicine found through stool studies I had bad flora in my gut. One was easy to get rid of via food choices the other I was to ingest juniper oil. My whole gut from stomach to colon was inflamed. Didn’t try that again. One thing for sure is careful with your fiber. My Dr and I are trying to find balance between constipation and loose stools. I’m trying a food diary, knowing it takes a couple of weeks to see results. It is a tough road but I’m willing to try less invasive fixes for awhile before advancing to permanent surgery. Let me know if any medicines or over the counters are helping you. Peggy L

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    1. Hi Peggy I'm 20 have been suffering from colonic inertia/IBS since 17 and had on and off problems in my younger years. I too am on disability and have had a few surgeries, after a lot of trial and error with laxatives and different ways of producing a movement
      that's still on going I have been prescribed the laxative Bisacodyl, my symptoms are pretty severe I used to use peglyte and numerous other laxatives but it stop working for me, maybe run it by your doctor about one of these laxatives both are covered in Canada, Bisacodyl works but it would depend on how server your symptoms are I usually have to take an where from 4 to 8 5mg pills a day to have a moment. Also what test did you do to see that your whole gut from stomach to colon was inflamed and what test did you do to check your flora in your gut?

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