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Gastritis, Esophagitis, GERD , small Hiatal hernia , diverticulosis
I am suffering 7 years with chronic digestive disorders , that take me out every day and night . I have Chronic Gastritis, Esophagitis, Class B GERD , small Hiatal hernia , diverticulosis. The worse thing is , I deep wet beach what tastes like sewer water 2000-3000 x a day/ night . My gut can’t handle any kind of food . It just constantly churns and is so loud , non stop . I live on Ultra Pepto . I’ve tried everything under the sun , RX wise , holistic wise , diet and elimination wise . Had so many tests done ✅. Even did acupuncture and 3 sessions of hypnotherapy. 6 Gastro Drs , in 2 states . I’m not celiac and no h pylori . I Eat small and healthy when I can eat . No fast food , no caffeine , low sugar ( just fruit) low dairy . Tried Keto and Gluten free . I’m on waitlist for Mayo Clinic in Jacksonville 6 weeks now . I’m a medical mystery and it’s now getting to me emotionally. I can’t lead a normal life . So much I want to do and I’m always sick . No Dr. has helped yet . I pray daily for relief of symptoms. Even for a day or two of relief. I’m desperately seeking and tried everything they make for gut health on Amazon. Today I will start on antidepressant . I’m sick if I eat or don’t eat and have empty stomach. We rarely go out to lunch and never to dinner . Just cook at Home . My poor body is getting weary of this . 7 years taken away and counting .
Thanks, Rosemary
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Yes, I am having PT and doing stretches for PFD. The PT is awful and the worst of it hasn't begun yet. Eventually the PT that's going to be done is called bio feedback. It's totally not for the weak minded. Luckily, most of the time, i'm able to makes jokes during the PT because it's humiliating process so finding humor in what's being done is the best way for me to get through it. Unfortunately the nights of the PT im up all night in pain. Definitely not laughing at 3 AM.
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2 Reactions@eppie I'm really sorry that you have so much pain with the PT. That sounds just terrible. Biofeedback is more about mind training, isn't it?
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1 ReactionI’m with you. I try and crack jokes and make fun of myself and the situation just to get through it. But sometimes it’s to painful and hard to crack jokes, because it’s not fun or funny. And sometimes it’s ok to cry it out. I don’t like to, but sometimes you just can’t help it.
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2 ReactionsNo. First it starts With trying to stretch the pelvic floor muscle internally with the therapists fingers inside you. While that’s going on she has to literally teach me to breathe correctly so I can move her finger with my pushing. Sometimes I can move it, sometimes not. I began PT in October. After 4 rounds of vaginal trigger point injections, this past Tuesday was the only time the therapist was able to do anything internal because it was too painful. When this portion improves the bio feedback will begin.
Bio feedback happens 2 different ways. The first is when the therapist will insert ( I forget the medical term for it) a dildo like object inside to stretch the pelvic muscles while I work on trying to push the object out.
The 2nd part is the real fun one. I will get to sit on a chair with a probe inserted into my anal canal while being attached to a monitor. I will be instructed at that point on how to breathe and reteach my muscles to push out instead of in. The monitor will interpret the strength of my pushing.
I find it hilarious when people say , oh, I’ve heard of PFD. Isn’t that where you have to do kiegle squeezes. My response is usually “yeh, that’s what it is!” It reminds me of when people used to stop me with my beautiful twin BOY and GIRL, whom look nothing alike. So many morons out there looking at these 2 adorable babies asking if they’re identical twins. I finally just started saying yes, of course my BOY and GIRL are identical twins. Can’t you tell?
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2 ReactionsOMG! When I’m alone I sit in a ball on my bed and just cry. Once I’m out of my room I try to leave all the bad there. As of late I feel like I’m going nuts. One minute I’m smiling the next minute something triggers something in my head and I get so angry.
I totally feel for you. I hope you have some wonderful people in your life helping you through.
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1 ReactionHey Bentley, I happen to live here in MN and Mayo may be my next step as well. You do get to a point where you'd do anything....ANYTHING for relief and gain back some quality of life. For me it all started with gallbladder removal 5 years ago. Episodes would come and go with stents in the bile duct giving me temporary relief. I had a reputable doctor at the U of MN do this, Martin Freeman is his name. My last stent placement was back in January and that time did nothing to help, so they got pulled 6 weeks later as they can clog up. Bile reflux is the suspected DX as this is the only test (endoscopic ultrasound shows it all over my stomach) that has come back with a red flag. Like you, I have tried many medications, some that cause side effects to warrant the need for an additional medication. Not a long term plan, so I am meeting with a GI surgeon tomorrow to see what can be done. I say if the surgery can help me gain back even 50% if what I have lost for quality of life, lets do it. I know folks who have had stomach portions removed, and intestines shortened when they thought nothing would help them. Both improved though. It seems like your visit to Mayo was long enough ago to be worth considering with a new GI there. Every celebrity that comes into MN for something always ends up going down there for a check up, must be a reason!
Hello friends, it’s been awhile since I’ve checked in. I’m just having the worst time and finding no relief. I think my GI doctor has done all the testing he can and the options are not great. He’s still trying but running out of options.
A quick recap (hopefully I don’t forget anything)
I have Crohn’s, Gastroparesis, IBS with constipation, slow transit colon (not sure that’s the technical term) SIBO, massive scar tissue, blockages, obstructions, severe bloating, EOE. I’m sure I’ve forgotten something, it sucks when your list of health problems is longer than your grocery list😔
I’ve tried lots of things (see previous posts) I tried all herbal including medical cbd and THC, I’m not sure if it’s making things worse or not. Tried Acupuncture. I’ve lived with the stomach pain basically my whole life, but the constant vomiting is making things really hard.
NG tube, temporary bag (to give my insides a complete rest), and waiting for a major obstruction and then maybe a risky surgery.
As I’ve stated many times my GI doctor gets it and me and doesn’t push me aside because the test results come back normal, although throwing up 4-5 days a week(sometimes more) run show something that they really can’t do anything for, or testing and finding nothing🙄
I’m exhausted and wondering if I should get a 2nd opinion from Mayo before tubes and bags start happening. I’m a single mom and feeling like a let down to my son. I want and need to get better for him and myself.
I guess to sum things up: where do I go from here? ??????? It’s been a year that I have been struggling with “episodes” and I’m no better.
Feeling lost and helpless. Suggestions, tips, advice are very much welcome and appreciated.
I hope everyone is doing better or have found things to help you feel better. I pray for all of you, this struggle is real for each and everyone of us.
I feel like I’ve lost direction, nothing works.
If it’s nit asking to much, I’d appreciate feedback on suggestions as what to try or do next.
Going to Mayo would always give another set of eyes. What is the risky surgery? God bless you in your quest to be healthy. I’m sure you have tried Domperidone and Reglan. Do you also have GERD?
I’ve been through that PT twice, but it started to work the second time. But I loved my therapist.
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1 ReactionI think Mayo is a good choice. I go to the MN site every 3 months for treatment. Keep in mind that it can take months to get in because they are so very busy. If I were you I’d start the process of getting an appointment now. You don’t need a referral but that would make it easier and possibly faster to get in. In the meantime you could be thinking about your options and questions. Have your list of everything you mentioned here and all you want to get checked ready. That will help them with setting up appointments within the right departments.
Also, an initial first visit can be a good two weeks. Keep this in mind if you have to travel some distance.
Good luck to you. Hoping you find some answers.