colonic inertia/dysmotility and planned ileostomy

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mumins
New Member


Date Joined Sep 2006
Total Posts : 2
   Posted 9/25/2006 8:38 AM (GMT -6)   
Hi:
I'd love to be in touch with other patients with colonic inertia/dysmotility. I went from a totally healthy life to an acute virus which has left me with 14 years of dysmotility of the gut as well as orthostatic intolerance/hypovolemia (high norepinephrine levels). I use the diagnosis of dysautonomia.

Since the acute virus I've had to be on a daily laxative which for the last four years has been polyethlyen glycol (miralax/glycolax). It no longer works and now there is bacterial overgrowth as well. I am planning to have ileostomy surgery in a month or so.

Any other dysmotilty patients out there? Have any of you had an ileostomy and found it helpful? I also have gastroparesis but it is not as severe as the colonic inertia. best, mumins

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 9/25/2006 2:51 PM (GMT -6)   
I think most of the people on this board who have colonic inertia have had a straight-pull-through, that is their rectum is preserved and their small intestine has been connected to the rectum while tossing the colon. I had j-pouch surgery (removal of colon and rectum) for chronic ulcerative colitis. Hopefully someone with CI will see your post and respond.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/25/2006 8:18 PM (GMT -6)   
Mum,
I wish I could say that having the surgery increased my dysmotilty  but it has not been as beneficial as I had hoped.  I do not regret having the surgery, I just wish the results were better.  I have a dysmotilty disorder which exists in both my large and small intestines.  Therefore, removing the large still left me with the disorder.  I take a medication called Motilium which helps a lot. I order this medication from Canda because the our Big Brother aka, the government, says that we cannot have it here in the USA.  However, the medication has been used in all other countries safely since 1978.  The FDA does not like this medication because it was being used by nursing mothers to increase their milk supply.  Because this medication was being passed to the baby through their mother's milk, the FDA removed the medication from the market.  However, the medication was developed to help empty the stomach after eating and to increase the dysmotilty in the small intestine.  Anyway, I would highly recommend that you do your homework on this medication and decide for yourself if you want to try it.  I hope your surgery goes well.  Best of luck ....
 
Amey

mumins
New Member


Date Joined Sep 2006
Total Posts : 2
   Posted 9/25/2006 8:31 PM (GMT -6)   
Thanks for responding Amey!
Your experience sounds like what I've been lead to expect, basically. Though my small intestine motility "seems" to be okay I do have gastroparesis, but it's not as severe as the colonic inertia. Good to be in touch with another dysmotilities patient. It seems there aren't as many of us and our treatments are a lot less clear cut than crones or UC. The drug you must be talking about I assume is domperidone? I did try that a couple of years ago and didn't feel very good on it so I stopped it. What part of the U.S. are you in? I am in New England. Have you found a good subspecialty motility doctor where you are? I am glad to know you found the surgery useful even if not as useful as hoped.

Did you have a loop or end ileostomy? Did you have your colon removed as well? Or left in? Best, Mumins

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/26/2006 12:54 PM (GMT -6)   
Mumins,

Yes, the medication is domperidone. Maybe it will work better once you have removed part of the problem (having the surgery). I have not located a molility dr in my area...and I am currently looking for a new GI Dr. I had my entire large intestine removed and things have been somewhat better. The only thing I do not like is that my body cannot tolerate veggies, fruits, and heavy meats (pork, steak, beef, dark meat). And, to make things more frustrating, I am allergic to wheat. So, it is very hard for me to eat much of anything. I drink prune juice every morning for breakfast, I have wheat-free pasta for lunch (about 1/2 cup serving size), and I have Tilapia for dinner. I eat the same things every day. I am hoping that oneday I will be able to eat more of a variety. I really miss salads! I love salad! I do not have an ileostomy; however, the dr's say that is my next step if things do not improve.

Take care,
Amey in Florida

gogently
Regular Member


Date Joined Oct 2006
Total Posts : 80
   Posted 10/4/2006 5:35 PM (GMT -6)   

Hi mumins and all,

I just read your post from 9/25. I have been recently diagnosed with colonic inertia/dismotility. Your post caught my eye as I have fibromyalgia.  What is the acute virus that you possibly got this illness from? Do your legs turn blue in the shower and sometimes taking a shower makes you so weak kneed that you jump out and dive for the bed? Do you have Raynaud's syndrome where your hands go from blue to white to red? Do you feel like your heart is going to jump out of your chest at times because it is beating so fast? Are you easily winded upon exertion? Are you cold the majority of the time, especially cold feet, hands, and nose? These are some of the things I deal with and was wondering if there was any similiarities.

I will be having my surgery in November. They are going to remove my colon and attach my sm intestine to my rectum. The colorectal doc is speculating that I've got nerve damage going on and is not sure how much of my colon is involved. I did the transit test and had 21 out of 24 rings left after 5 days. I know I have chronic pain on my left side which is where most of the congestion takes place. It looks like a lop-sided pregnancy when I bloat out. I have tried everything to keep things moving for the last 5 years and nothing seems to work any more either. Now I'm just doing the dulcolax to keep things pushing through...even though it is very slow. I will be seeing a gastroenterologist to evaluate my upper GI in a couple of weeks. Are you going through alot of pain also? Last night I could have done surgery on myself if it would have relieved the pain :-)

Would like to,

gogently

mumins said...
Hi:
I'd love to be in touch with other patients with colonic inertia/dysmotility. I went from a totally healthy life to an acute virus which has left me with 14 years of dysmotility of the gut as well as orthostatic intolerance/hypovolemia (high norepinephrine levels). I use the diagnosis of dysautonomia.

Since the acute virus I've had to be on a daily laxative which for the last four years has been polyethlyen glycol (miralax/glycolax). It no longer works and now there is bacterial overgrowth as well. I am planning to have ileostomy surgery in a month or so.

Any other dysmotilty patients out there? Have any of you had an ileostomy and found it helpful? I also have gastroparesis but it is not as severe as the colonic inertia. best, mumins

A good laugh and a long sleep are the best cures in the doctor's book.  ~Irish Proverb<!--DCMOO-->


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 11/4/2006 10:01 PM (GMT -6)   
i have cd (since 1993). had surgery in july 05 to remove 8 inches of the sigmoid colon and 2 inches at the ileum. 3 months after i recovered, life was the best ever. but then alas, come thanksgiving that year my colon stops working. they say i developed colonic interia and i am put on zelnorm. it doesnt do much for me. i am at my wits end and i am told my only solution is a colectomy but since i also have perianal disease (active crohn's in the rectum/anus) i'd have to have a permanent external ostomy. ugh. that is when i go for broke and look at alternative/naturalistic health. i find the maker's diet and within 3 days of this diet my bowels starting working again. this was in august '06. they arent back to normal,but i am doing much better than i ever was with the zelnorm medicine. i stopped that in september and i havent taken it since and i no longer need it. i suggest any one with colonic inertia look into trying the maker's diet. it is by jordan rubin (he has cd and this got him in remission). the gist of it is you go organic - eat all natural foods. i found it worth it. instead of me writing a book review, check it out for yourself. i think you'll be pleasently surprised.
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