Exhausted from digestive conditions

Posted by bentley33 @bentley33, Apr 3, 2019

Where to start…? I’ve had many health problems my entire life. From kidneys, ovaries , gall bladder, appendix , IBS, Crohn’s, Gastroparesis, blockages, obstructions and TONS of scar tissue. Which I believe is really complicating things. I have become extremely bloated, constipation ,my stomach is bruised, and no one has anything definitive to help. My stomach has been bloated for months and in an unbelievable amount of pain (which I always have) I’m sure I’ve missed a few diagnosis, but at some point enough is enough! I’ve done all they have said to do and nothing. Now I have a month of more tests. But I’m wondering if anything will change or maybe I need to try PT or acupuncture. Any suggestions are welcome. My stomach is a mess and no doctors can help

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Hey 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!

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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.

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@bentley33

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.

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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?

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@eppie

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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I’ve been through that PT twice, but it started to work the second time. But I loved my therapist.

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@bentley33

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.

Jump to this post

I 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.

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@downtowntiger

I’ve been through that PT twice, but it started to work the second time. But I loved my therapist.

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What type of things did your PT do to help? If you don’t mind me asking

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@downtowntiger

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?

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No one will do surgery due to the massive amount of scar tissue. And the scar tissue could be the thing that’s causing problems, but nothing is showing up on any X-rays. Guess there is no fix for scar tissue. I’m afraid of an NG tube, or getting a temporary bag so nothing touches my intestines. I’m pretty sure I’ve tried just about everything and I’m at a loss….

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With Mayo, yes it takes a few months to get in. It took me 3 months from the time I did the on-line deal and such to schedule an appointment at the GI clinic. Mine is coming up mid September. I guess quality of life comes into play when looking at risks of surgery or something more invasive. Being sick and in pain daily would push me to the point of risking surgery if there was a chance of improvement that way. I may reach that point, but can at least do alright on domperidone, buspar, and the occasional oxycodone when the pain gets too bad. But, the bland diet is something that may never change and that is hard to think of given I am only 56 years old.

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I am a 17 year old female. I have been dealing with major lack of appetite. I have also been feeling nauseous but I never had thrown up from it. I feel sick when I don't eat and when I do eat, I end up feeling more sick. I have chronic fatigue syndrome and orthostatic intolerance. Any ideas of what this could be. I've been getting told by many to see a GI doctor. What types of test does the GI do to determine what an going on? Anything would be helpful! Thank you

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Hello everyone. Things are still not going well…. my stomach is still very bloated, vomiting, and the rest of my issues. I tried to get an appointment at Mayo in MN and they wouldn’t take my insurance, I’m wondering if I’m referred by my GI doctor maybe they will see me, although I’m not sure what they can do. I see GI at the end of the month. I’m afraid they will want to do a temporary bag and I’m just not ready for that. I’m afraid it won’t work or when they reconnect things won’t work (they aren’t doing that great the way it is). I’m thinking about seeing a holistic doctor. I feel like I’ve tried everything else…. has anyone had success with holistic therapy? I know my scar tissue is a big problem but no surgeon will go in and remove them. We all know it’s a catch 22, but I need relief. They are afraid more damage could be done with surgery. So until I have a life threatening obstruction, I think they will push for the bag, which is also a gamble. Just wondering what to do???? Everyone on here has been helpful, and I’d really appreciate so input. Holistic doctor or the bag? Or try and be seen at Mayo. They’ve seen me before but insurance is an issue. I’m so frustrated with my health and no have to deal with insurance!!! I feel the people in charge of insurance and money has never suffered the way we all have. Health and quality of life should be more important than what type of insurance I have 😡🙄. This just sucks. Opinions and ideas are always welcome and helps to keep me grounded and more knowledgeable about these problems.

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@bentley33

Hello everyone. Things are still not going well…. my stomach is still very bloated, vomiting, and the rest of my issues. I tried to get an appointment at Mayo in MN and they wouldn’t take my insurance, I’m wondering if I’m referred by my GI doctor maybe they will see me, although I’m not sure what they can do. I see GI at the end of the month. I’m afraid they will want to do a temporary bag and I’m just not ready for that. I’m afraid it won’t work or when they reconnect things won’t work (they aren’t doing that great the way it is). I’m thinking about seeing a holistic doctor. I feel like I’ve tried everything else…. has anyone had success with holistic therapy? I know my scar tissue is a big problem but no surgeon will go in and remove them. We all know it’s a catch 22, but I need relief. They are afraid more damage could be done with surgery. So until I have a life threatening obstruction, I think they will push for the bag, which is also a gamble. Just wondering what to do???? Everyone on here has been helpful, and I’d really appreciate so input. Holistic doctor or the bag? Or try and be seen at Mayo. They’ve seen me before but insurance is an issue. I’m so frustrated with my health and no have to deal with insurance!!! I feel the people in charge of insurance and money has never suffered the way we all have. Health and quality of life should be more important than what type of insurance I have 😡🙄. This just sucks. Opinions and ideas are always welcome and helps to keep me grounded and more knowledgeable about these problems.

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I can't imagine how frustrating this must be for you. I guess given that mayo is the #1 rated GI clinic in the world, anything you can do to get in there would be my goal. Being in limbo with symptoms that don't fully mean a certain diagnosis is the worst. I know that I have bile inside me given all the burning/stinging and constant fullness and pain. Again, I will go back to quality of life. If status quo is something that you can't endure, then the risk of surgery is worth it IF there is a chance of relief from the procedure. No one can be 100% certain of course, but being young and thinking of enduring years of feeling as is can't be very good. I know it scares me to think that, which is my motivation to keep going, and advocating for my own health. So tiring though.

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I had a "Nissen" that was to reduce Reflux but instead the hairnet of nerves that control the emptying of the stomach damaged..so it takes a long time to empty.. Bloating occurs when I eat… every meal was a challenge..my docs in Central Iowa didn't diagnose it in 2 months but Mayo MN did in a couple of tests within hours.. I take the generic Nexium and Mirazapine to make me think I should eat… there is a foam that usually forms in the stomach but I control that by eating small amounts often…My granddaughter has a genetic similar condition, she goes to U of Iowa hospital as that is where she is enrolled.. I carry Papaya enzyme pills to reduce painful bloating when I have eaten too much….I also take Gas X too.

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