rfedd Posted November 8, 2022 Report Share Posted November 8, 2022 Hi, Received my diagnosis for IBS-D about 30 days ago, after numerous doctors appointments, and several trips to the ER. All vitals were great, imaging was clear, Only problem was my severe abdominal pain. Could not eat normally without either the "D" or the "C" in some cases. First episode (severe) in May. MY GP could not identify. Sent me to gastro enterology and it took them about a week to figure it out. This is a really nasty disease. Makes you almost immobile. I have been through Stage 3 prostrate cancer, Stage 2 salivary gland cancer, diagnosed with AFIB, gall stones (gall bladder removed) and 2 heart attacks (stents). This beats them all. I am hoping to get some guidance here as to how one can live with this. Thank you, Ron Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted November 8, 2022 Report Share Posted November 8, 2022 Welcome Ron, You've been through a lot. Did your doctor(s) start you on any treatment? Quote Link to comment Share on other sites More sharing options...
rfedd Posted November 8, 2022 Author Report Share Posted November 8, 2022 Hi Jeff, Yes he did. He put me on Nortriptyline to "quiet" the nerves, and their connections, and Dicyclomine for what he called "belly pain". I just got back from hospital where they did an endoscopy, and in 2 weeks they want to do a colonoscopy to check the large intestine. Its been about 4 years, so I am due anyway. One thing I was looking at was an SCS, and what impact that might have. Based on testing going back to 2014 it seems to be of benefit. At least for the pain. I am in the middle of the process to get one installed. About 2 years ago I had to have my spine "fused" and something went wrong with the surgery. 5 months after the surgery the pain returned in spades, so now after 12 steroid injections in my spine and hips and knees and feet, they have decided to do the SCS. I hope it helps with the IBS. Aging is such fun. Quote Link to comment Share on other sites More sharing options...
rfedd Posted November 8, 2022 Author Report Share Posted November 8, 2022 (edited) One other point of interest I forgot to mention....all this started after my Gall Bladder removal. Something called ACNES. It talks about about Gall Bladder complications. At the end of the report it says " Doctors often misdiagnose ACNES as IBS". Edited November 8, 2022 by rfedd Wrong link. Quote Link to comment Share on other sites More sharing options...
rfedd Posted November 11, 2022 Author Report Share Posted November 11, 2022 The Doctor has ruled out ACNES. His original diagnosis stands. But, I do have a question. With IBS, are there periods where all of sudden things return to "normal"? The last 2 days of what was weeks of IBS-D is all of a sudden IBS-C. Is that something that happens? Thank you. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted November 17, 2022 Report Share Posted November 17, 2022 Thanks for the update. You used acronyms that I had to look up... SCS, ACNES. Both interesting. IBS is known to wax and wane over periods. So you have good days, weeks, months and then back to symptoms. Cycling between IBS-D and IBS-C is not uncommon. That's referred to as IBS-M (mixed) if this is a cycle that you repeat often. Let us know about the SCS (spinal cord stimulator) and if it helps with your IBS. Quote Link to comment Share on other sites More sharing options...
rfedd Posted November 17, 2022 Author Report Share Posted November 17, 2022 Things are going from bad to worse. I finally had the endoscopy and received the report. They did a biopsy since they were there already. They tell me 5 out of 6 mapping samples they did, show IM. Intestinal Metaplasia. They tell me I need to "keep an eye on it". This week has been just miserable. With every hiccup and burp I get a mouthful of acid. I am taking a PPI (OTC) but not helpful at all. Upper abdominal pain is constant. I am watching my meals and sticking to the FODMAP diet instructions. No help. I just sent an e-mail to my Doctor to see if there is a "prescription" PPI that would be more beneficial. I have also contacted the surgeon that removed my gall bladder to see if he has ever seen anything like what I am going through. It is very similar to having sciatica on my right side, having surgery and coming out with sciatica on both sides. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted November 18, 2022 Report Share Posted November 18, 2022 I'm sorry to read about the complicated issues. You do have some unusual things going on. I have never heard of intestinal metaplasia. From what I've read this really could be benign, but best to heed the advice and keep an eye on it. I had several pre-cancerous polyps removed in June. I was also told to keep an eye on it. I'm just kind of rolling with it. Stomach acid issue is challenging. PPI's also have their own issues so you do want to get some good advice about that. Quote Link to comment Share on other sites More sharing options...
rfedd Posted November 18, 2022 Author Report Share Posted November 18, 2022 As things would have it, the abdominal pain and acid got so bad last night that I ended up back in the ER. Different Doctor on staff. He looked over my history, did some vitals, then did a CAT scan of my abdomen. Before they rolled me in for the imaging they gave me a drink of something called Sucralfate. Within 30 minutes the pain was gone, acid was gone. He also said the OTC PPI was most likely not working, so he gave me a prescription of Pantoprazole. The imaging with contrast showed nothing. He was specifically looking for any bile duct issues, since my Gallbladder is gone, and it all started after I had it removed. No issues today. Knock on wood. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted November 18, 2022 Report Share Posted November 18, 2022 Wow, that's amazing! Wonderful that you were seen and they took it seriously. I hope the pantoprazole continues to encourage healing. Quote Link to comment Share on other sites More sharing options...
rfedd Posted November 18, 2022 Author Report Share Posted November 18, 2022 Thank you for your support. The other thing the Doctor made note off, is that my weight had gone from 191 to 178 in 4 weeks. At 6'3" I am getting skinny. Quote Link to comment Share on other sites More sharing options...
rfedd Posted November 21, 2022 Author Report Share Posted November 21, 2022 I am absolutely amazed with this new medication the new doctor put me on. Sucralfate. I coats your stomach if you have ulcers, to allow your stomach lining to heal. All my abdominal pains have been gone for 4 days now. No food issues. He told me to knock off everything else. So 4 of the Sucralfate per day (one with each meal, and one at bed time), and Prescription Pantoprazole once a day. I actually woke up feeling great this morning. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted November 21, 2022 Report Share Posted November 21, 2022 Sounds like the stomach might have been the cause of your abdominal pain. Wishing you continued good health! Quote Link to comment Share on other sites More sharing options...
rfedd Posted November 30, 2022 Author Report Share Posted November 30, 2022 Hi Jeffrey, Well, I think I (not the doctor) figured it out. Especially true for people who have had their gallbladder removed. https://www.mayoclinic.org/diseases-conditions/bile-reflux/symptoms-causes/syc-20370115?mc_id=us&utm_source=pes&utm_medium=e&utm_content=engagement&utm_campaign=mayoclinic&geo=national&placementsite=enterprise&invsrc=patloy&cauid=122853 I hit on ALL of the symptoms. From the acid mouth, to severe upper abdominal pain. To clear, yellow "vomit" (sorry). I pushed back really hard, because I am tired of running to an ER, and not getting answers. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted November 30, 2022 Report Share Posted November 30, 2022 That's very interesting. I have had bile backing up into my stomach before, except I was especially nauseated and didn't really have pain. There is a medication in Canada that helps with that called domeperidone. It contracts your stomach to empty into the small bowel. It's often used by people with gastroparesis. Quote Link to comment Share on other sites More sharing options...
rfedd Posted November 30, 2022 Author Report Share Posted November 30, 2022 Seeing a NEW doc tomorrow. I will ask. Almost sounds like a champagne. Quote Link to comment Share on other sites More sharing options...
Jeffrey Roberts Posted November 30, 2022 Report Share Posted November 30, 2022 It does and that's how I remember it! Quote Link to comment Share on other sites More sharing options...
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