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Dealing with multiple GI issues
I have been adding new diagnoses to my already numerous this past six months. My former gi dr just thru meds at me mostly. So about 11 years ago I got diagnosed with redundant colon and IBS-c (which sometimes I think is a catch-all for who knows what's wrong with you LOL) when I started following the low FODMAP diet loosely (onions and garlic are out for sure.) Two years later I had severe lower chest pain and went to ER, where I eventually diagnosed with EOE, gastritis, hiatal hernia. Put on prilosec then and still on them, top dose now. Had my colonoscopy 9 years after the first as I was having issues again and got sent to specialist colon dr as I have flat large precanerous polyps that took 3 more colonoscopies (4 in 20 months), and the last two were two day preps with two gallons prep that I could only get 1 1/4 down both times. On a yearly schedule now, sigh. I was having issues with swallowing again this past June and had another endoscopy where gi dr broke a Schatzki ring at the bottom, and showed an erosive esophagus, no EOE. I also saw a couple of ENTs shortly after as I was having vocal cord issues (from long Covid in the spring), and turns out I have LPR, and acid reflux is hitting my vocal cords. I switched to a larger practice who did three tests - ph impendence (119 weakly acidic events in 24 hours, some up to my vocal cords, on meds), esophageal motility which showed gastroparesis, and manometry which showed inefficient esophageal motility. I was too complex for them so I am being referred to a university center. I also met with a dietician who helped me figure out how to deal with these conflicting diagnoses! I am eating very little solids, granola in am (to keep me not constipated but gives me heart burn) midmorning a homemade muffin or similar, soup which I just stopped pureeing for lunch, Owyn protein drink for mid afternoon, and a smoothie for dinner. Avoiding as much acid foods and drinks as possible, only drinking alkaline water. Just wondering if anyone else has similar multiple issues. And what anyone has found that works! I am on a new med for the motility issue, bethanechol which hasn't helped much yet (bloating still bad.) And I have lost almost 30 pounds in 4 months, needed to but not sure when it will stop.
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Forgot to mention GERD as diagnosis 9 years ago. And IBS was mixed not C.
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2 ReactionsSo sorry you’re going through all of this! Wow. I have had a few similar issues. Mostly with pain in chest fit over a year and swallowing. Losing weight. A lot of same tests as you. But I also had cta w contrast of my stomach and special ultrasound from a vascular surgeon. Was diagnosed with MALS! So grateful to have a diagnosis. Are they doing any surgeries for you? Procedures? To enable to to eat more food etc? Wishing you good health! And hang in there. There’s so many drs out there to help you. 😊
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1 Reactionare you taking any vitamin/mineral supplements? I basically quit eating much (collitis-diverticulosis and cancer) and got anemia and other deficiencies. How are you getting your nutrition?
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1 ReactionYes, I take supplements, floradix for iron, multivitamin, fish oil, b12 under tongue, vit d spray, probiotics, and couple other supplements. I see my new primary next week and plan to ask for lab work for some of these.
I am waiting to get an appointment with Geisinger. My current gi practice told me there is surgery to rebuild my lower sphincter of my esophagus and maybe fix my hiatal hernia but not sure what the university center will do yet.
You’re on the right road. Keep advocating for yourself!!!! Good luck. Let me know what happens!
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1 ReactionThank you and will do! Been advocating for my family's health and definitely my own for some time now. I am just feeling a little lonely in having so many things going on and no close support person.
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1 ReactionGastroparesis ? means Slow emptying. I see GI this Tuesday to schedule test. 2019 diagnose gastroparesis. 2022 diagnose Chronic Gastritis. My Chart is extremely helpful. Know what drs do not tell you. I got off Colesevlam & dicyclomine for diarrhea. If you get this let your dr know when you have accomplished Stop. I told mine in 12/2023. he didn't listen. 4y's diarrhea turned to constipation entire 2024. w stomach Distensions so huge, look & feel 10 mo pregnant. Painful. Maternity tops at 66yy. Last 3 weeks got off GERD med., Fiber supplement & try anything to help go. I bought 8000mg Artichoke & take 1 a day w meal. I'm day 4 w going every day. Relief.
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4 ReactionsHi,
After having all those symptoms for years and been poked prodded and investigated from both ends, all manner of diagnosis have been theorised through my journey, with no actual proof to back them up. Latest diagnosis is Autonomic polyneuropathy (ANS) which gives me SIBO regularly. This came about from gas testing the stomach, finally some hard evidence. It took an astute ED Dr to recognise the Autonomia symptoms, otherwise I would still be none the wiser. With no treatment for ANS I have been able to throw away all the medication that was supposed to deal with the symptoms and now concentrate on SIBO medication when required. With no hope of stopping the symptoms I'm left dealing with them as best I can in my own way. Whatever works for me is what I do to get though the days. Having good days is now a thing of the past with each day a challenge to get through. Some days it is sitting it out waiting for a "better" day to come. My days are spent trying to manage the corrupted digestive system which has become a permanent feature of life for me and trying to ignore the other symptoms ANS causes randomly. I'm left in limbo unable to get the help I would like, but acknowledging that there is no help available anyway. All I can do is wait for ANS to stop the heart and end this invasive disease.
Cheers
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1 ReactionPlease keep me posted on your condition. I was diagnosed with gastroparesis about eight months ago. I have always suffered from constipation and now it is horrible with gastroparesis. They don’t want you to eat any raw salads, nuts, fiber, etc. I had a fun application operation for years ago and they cut my esophagus and I think damage my stomach. I had it because of heartburn now the heartburn is back and the constipation is horrible. My food stays in for a couple of days at least and, like you I have the swollen stomach. I am now taking lactose every eight hours sometimes it helps they called in a new drug for me, but I found out it was 500 of month and I can’t afford that , so still trying to figure out what foods I can eat that don’t give me heartburn or make me so bloated