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

Interested in more discussions like this? Go to the Digestive Health Support Group.

@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?

Jump to this post

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....

REPLY

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.

REPLY

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

REPLY

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.

REPLY
@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.

Jump to this post

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.

REPLY

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.

REPLY
@karina77

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

Jump to this post

@karina77 The test they do will vary depending on what the doctor thinks may be causing your problems. It can involve manometry test, various types of swallowing test, ct scan, endoscopy (which they may take biopsies during) or other tests. So many types of digestive problems have the same symptoms and it can take many different test to figure it out.

REPLY

Hi everybody,

I thought you might be interested in viewing this recently posted video:
– A Map for the FODMAP Diet https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/a-map-for-the-fodmap-diet/

Follow the "Gastroenterology & GI Surgery Page" on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
where you can browse through newsfeed posts from Mayo Clinic experts, learn about clinical trials and up-to-date research, and find resources for all your gastroenterology needs.

REPLY
Please sign in or register to post a reply.