Life long constipation

Hi.. I suffer terribly with colon motility issues. Would love to hear what you are doing to manage. I am taking Motegrity , magnesium and MiraLAX and just completed 3 months of pelvic floor therapy with biofeedback and still having problems. Waiting to see a motility specialist. Thank you

Hi, I have done everything you have and so much more. I’ve even gone on trial run with IBSRELA the last drug to hit the market and it didn’t work.
My situation is quite unique. I had a very long surgery in June 2020 on my cervical spine and after that my bowels never woke up. I went through two years of testing in Boston and the conclusion remove my entire colon because a partial removal with motility disorder won’t work.
I actually was scheduled twice and two weeks before both, I canceled. I was terrified. Now almost 5 years later, I’m 70. I’m running out of time and both my PCP and Gastro want to have Mayo look at me.
I take 25-30 laxatives nightly. My am routine is a suppository followed by an enema. My doctors are completely aware. They are concerned push will come to shove and what then. I moved to Georgia and I probably wouldn’t make the one hour drive to the best hospital if I needed emergency surgery.
I did everything from what felt like 100 tests in two years to every medication. Even off label meds that cause diarrhea as a side effect and still nothing. Every 10-14 days my gastrointestinal orders a colonoscopy cleanse but no colonoscopy. I do this to clean out.
I work with a dietitian for food. I also developed gastroparesis. I don’t know if surgery is what I need to do or just keep pushing this as long as I can. It’s becoming harder and harder.

Yes, I’ve had two years of every test you can think of. I failed everything. Went to pelvic PT for two years, visceral message, acupuncture and more.
I had all this in Boston and after two years they wanted to remove my colon. It’s been 5 years since it began due to cervical spine surgery. My bowels never woke up.
Yes, I’ve done every med possible. Both my pcp and Gastro think I should have them get together with notes and get me into Mayo. I’m 70 now and my regimen is quite severe on a daily basis and they think I need to get another opinion.

My symptoms is when I have more meat or cheese with no vegetables can make me constipation, I try to stay die with less meat or spicy food and eat the veggies that help me a lot, the best one are Beets, Broccoli, okra , carrots I am eating everyday, it helps me feels great.

Oh my… it sounds like you are a warrior and have been so brave trying to get yourself well. The decision to have surgery must be so difficult given what’s happened to you after your previous surgery. I feel for you. I am close to your age and this is not how I planned to spend my retirement after working my whole life. There is a virtual support group once I attend here in MA but it’s open to anyone with a motility disorder. It’s small and couple of members also have gastroparesis. If you want information I can forward it to you. Thank you for sharing your story with me. I am hoping someone finds an answer for us. I am also in the Boston area.

Welcome to Mayo Clinic Connect, @teruya05. Thanks for sharing which foods do and do not help you with constipation.

For how long have you had constipation? Do you take any medication for it?

Hi, @mothermary1 - that sounds like quite a regimen. I personally do not have constipation, though I've had some of the opposite from weight loss shots. I've taken stool softeners after a surgery, but never laxatives. I am cranky enough each time I've had to do a colonoscopy prep, so I cannot imagine doing that every 10-14 days.

If you do decide to have Mayo Clinic have a look at you, you'd want to request an appointment through this link http://mayocl.in/1mtmR63.

Hi, I moved to Georgia about a year and a half ago. The Mayo thing sounds fine which my doctors will set up, not myself. I tried everything in Boston. I had 3 cages put in my cervical spine by a wonderful neurosurgeon. His team was fantastic. I had folks who I knew at Beth Israel and he was highly recommended. I even spoke to his patients. Surgery was long and I’ll never know but my bowels didn’t wake up.
I kept seeing him for months and he worked with Brighams Gastro dept as well.
I went through every test possible, tried everything in med even combinations and nothing. At the beginning I would actually go to get cleaned out at the hospital.
I’ve learned a lot in 5 years. My situation is very rare and things like diet don’t help much but I have a dietitian and a women who cooks one meal a day for me. I eat no sugar or dairy and I eat a very balanced diet. I also have hypothyroidism so I must have that in check all the time.
All the foods that get recommended never help. My fiber limit is not high every day because I can’t digest it.
The only veggie I can eat is carrots. I measure and weigh everything . It’s not as simple as many think. If it was due to anesthesia most have no idea how to help me. It’s so rare if that’s what did it.
My thinking is I’ve never been checked neurologically. Could it be nerve related. It’s been a long 5 years and I really thought it would wake up but nothing.
My Gastro said if Mayo can’t find anything other than remove it , it’s back to me deciding. This is Emory in Atlanta sending me to Mayo. I just know things are not working and I don’t want some emergency to happen where I’ll end up locally for this huge surgery. I wouldn’t make the hour drive to Atlanta I don’t think.

Hi, yes I would be interested,thank you. I just feel that my circumstances are very different and I wish I could find someone who had this trouble after long surgery.
Thank you

There is an Association of Gastrointestinal Motility Disorders. You can find them on Instagram and facebook. They have monthly support group and offer webinars in a variety of motility disorders. Hope this helps you.