Hi folks,
I've had a permanent ileostomy for 8 years now. I've had slow GI motility since being a kid. My gastroenterologist suggested taking a prokinetic. I'm tired of taking all the medicine that Western doctors push. I've been taking a half dose of Miralax each morning for a couple of days. It seems to help. Has anyone else tried this? I haven't discussed this with my GI doc. Any suggestions out there are greatly appreciated. Thanks
Hi and welcome.
Not to sound like a total "Richard," but you need a better doctor.
As a kid, you say you have had low motility? The ileo seems to not have helped.
It doesn't sound like the proper diagnosis to me, the band-aid effect.
Most of us ileos wish we had low motility, naturally. We don't. Sadly.
And we have to rely on certain foods and medicine to slow it down.
I think you need a second opinion here. It seems nothing changed after the ileo. I have had an ileo for 9 years.
Something higher up in the digestive tract could be the issue. Just saying the doctor missed the point, perhaps. 🤷‍♂️
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No doubt. I'm meeting with my naturopathic doctor this week. I am curious about her thoughts.
And continue checking in and posting on here. Don't go into battle unarmed.
A little more history….I'm 68 years old. I saw my first gastroenterologist at around 26 years old. That particular provider was of no help. I had chronic constipation, clearly IBS. Over the years, I continued to see a few different doctors; all any of them did, besides scoping me, was push meds. I've been on Reglan, Tagamet, and several other PPIs. We should all know the damage those meds do to our gut. Around age 40, I sadly agreed to have most of my colon removed, leaving about 9” intact. That procedure only seemed to make matters worse. Obviously! Eight years ago, I saw a doctor who is a research gastroenterologist. He has one practice on the East Coast and another on the West Coast. When the first colon surgery was done, the idiot surgeon removed the flap that prevents backwash into the small bowel. Of course, I had SIBO.
The same provider was able to determine that my remaining colon was completely “dead.” That's when the ileostomy was suggested. Now, I'm constantly battling SIBO. It's getting better. I have many food allergies and am eating accordingly. I asked about
MiraLAX because I have to get up a couple of times at night to empty.
I hope this information helps!
Thanks for your concern and help. I'm so grateful.
I agree that you need a second opinion, but some of what's happened cannot be undone.
I've seen others who were told by doctors to take Miralax daily, so I don't think that will hurt you. It's always a good idea to check in with your doctor, though.
I also have slow gut motility; I have had it since childhood. I can appreciate the misdiagnoses and parade of doctors and tests. Daily Benefiber works better for me, with an occasional Reglan. I experimented with Miralax, too. I just need to find what works best for me—unfortunately, this can take time, and other things can come into play. Even with the slow motility, about a month after my surgery last spring, I developed dumping syndrome—it's quite a game, and I always carry Imodium, but I'm a competitive person! Best of luck!
I've had a similar journey to yours. Mine didn't start until age 21, after a six-month trip to Europe, where I suffered a couple of nasty bouts of diarrhea and vomiting from eating who knows what. After my return, normal bowel movements slowly became a thing of the past, and I became increasingly constipated. My theory is that I picked up some kind of intestinal organism that slowly killed my colon. I tried every new drug as it came on the market, but nothing would work long-term. The doctors had no idea why this was happening to me. Six years ago, my colon perforated, I'm sure from years of constipation, and I was given an emergency colostomy. That made things worse, as my colon still didn't work. I was finally correctly diagnosed with colonic inertia, and I got my ileostomy, which is what saved me. My colon was removed, and I function well with just my ileum. It sounds like you have inertia of the ileum, which must be very frustrating. I know from years of taking Miralax (polyethylene glycol) that it is pretty harmless, and if it helps you eliminate, I don't see why it would be a problem. Has it been working for you? I would discuss it with your doctor. All it really does is introduce water into the bowel (or ileum), and you might have to compensate by drinking more fluids than you already do.
Terry