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Gastroparesis or slow modility colon
I was diagnosed with gastroparesis with one doctor and he sent me to a bigger university for a pacemaker.
The next university said it was not gastroparesis. This doctor had me do a Sitz Marker Test and after 7 days, I still had 58 markers left in my upper colon. He diagnosed me with a slow modility colon.
For the past 9 months I have (and getting worse) severe abdomen bloating, cramps, pain, nausea, and now lower back pain. I have been on a gastroparesis diet for 6 months with no relief. I only eat frozen yogurt and cracker for lunch. I wait to eat a more bland diet when I get home from work, knowing the bloating and nausea will get worse.
I now can only wear dresses, no pants, due to the extreme bloating and then discomfort of anything tight around my abdomen. Now I have gained 5 pounds in the last week with the same diet I have been on for 9 months.
My doctor now has me on miralax and apple juice. (During the last 6 months I have been with him, I have developed constipation in the past 3 months. Something I have never had in my 60 years of age.) I can't drink apple juice or anything except water due to the fact it also makes me nauseas.
I have tried Reglan, which made me suicidal, and erythromycin, which did not help.
Anyone have these same symptoms or and suggestions of what to do next. The doctor said I may just have to live like this. I am a very upbeat, positive person, but I can't imagine there is not something wrong to start the symptoms just in the last 9 months. I will take any help! Thank you so much.
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Good luck @eileen. I have had some real doozie doctors in the last 15 years. It's like they engage their mouths before they engage their brain. I was at an appointment one time and was explaining how my feet were feeling, "like they had ace bandages wrapped around them real tight, and were swollen". Then pearls of wisdom spewed forth, " well, they're not swollen now...." She was bending over my feet down on the floor. I had some very tempting thoughts right at that moment. Maybe, if you keep leading your doctors in the right direction they will figure things out. Here's hoping, Dannybee
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1 ReactionHi Danny ee, I have seen so real doozies myself. I had literally lived in the emergency room these 7 months. I had a cT scan last summer which showed inflammation in my stomach near my colon. The doctor would only say go buy some mirelax. What? My former gastro after hearing all my symptoms ignored them and asked if I wanted to go on a antidepressant. I said no. The only good thing thing about him is he did refer me to the motility doctor that I'm seeing virtually on Monday. I'm hoping for the best on that visit but I'm nervous. My new pcp who is actually a Dr I used to see is the only one who believes I have gastroparisis. He told me today to just tell the motility doctor thT Reglan is helping me and to speak up for myself. Which I will do. Just hoping for the best.
@eileen, Omgosh. Don't you wonder where they were listed in their graduating class? They had to have been low. Can't believe it. It would be funny if they weren't hurting people. 🤔
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1 ReactionThanks for chiming in. I don’t have Gastroparesis. Eileen does. I passed my stomach emptying test fine. My severe constipation is because of no colon motility. I can’t move my bowels without meds. I was scheduled in Boston for total colectomy but canceled, rescheduled and canceled again. I just feel doctors have missed something and don’t look at the whole picture just my large colon. I’ve learned a lot going to all naturopathic doctors but I’m not any better. It is very disappointing and I’m back to a newer motility Gastro doc this month. I have some testing suggestions but it’s never easy convincing them. Since I have been on Mayo blog for a while now it just amazes me how many suffer from what you and Eileen have and also what I have. I do think someone at some point will have some idea and I’ll try it and it will help. Blessings, Joanne
Hello for me I get full fast. Can't eat like I used to. Because I can't take Reglan at bedtime to try to cut back on side effects, I wake up like this morning feeling like my insides were all twisted up. As far as the motility doctor on Monday on paper it looks like a no Brainerd nut in nh you never know. I do have a back up just in case it goes south.mass general in Boston.. I just don't know if they take my insurance.
Good luck and please share the outcome of your visit. Best wishes for your health.
Did you every try homeopathic doctor?
Thank you
Will update on Monday afternoon after my visit.
No where do I find one? What do they do? I need more testing first
Yes, I see homeopathic doctor, get colonic hydrotherapy, also visceral massage and pelvic floor pt. I do it all. My entire team thinks keeping my colon was wise. I look at this group very different that the medical world and the approach is so different. I’ve eliminated sensitivities to foods from a lab test result that my pcp felt is not conclusive enough. Cutting out those foods definitely after months made me feel better but not help my bowels. I also get acupuncture from the naturopathic doctor as well.
The problem is none of this except pelvic floor pt is covered because insurance companies don’t see as true medical help. I include my pcp on everything and he is part of my care but states at some point you need to move your bowels on your own. I’ve just cut back on weekly colonics to every 10 days. They all take credit cards, thank god and right now it’s what I want to do. I think an answer is out there. It could be as simple as my digestive system shut down from anesthesia which it does during surgery and it never recovered. It’s to coincidental that it started right after surgery. I’m sure it’s rare but I think it can happen. I’ll never point a finger, doesn’t matter. I just want to feel better. Thanks, Joanne