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

@hopeful33250

Hello @bentley33 and @eppie

I think you might both find this information from Mayo's website to be interesting. It is written information as well as videos for treating pelvic floor dysfunction, please take a look at the videos. How does this compare with the kind of treatments you have received?
https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation/minnesota/services/pelvic-floor-dysfunction-program

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Thank you for the website.
The stretches are pretty much what my PT is having me do. I don’t think this is a major problem for me. My muscles are not as strong as they should be and I’m thinking that’s why they gave me doing PT so it prevents things from getting worse and maybe help a little. 🤞
I will be interested to see what the Volon transit test shows(if anything) and no laxatives for 9 or 10 days. I have a feeling I’m in for another long painful week and a 1/2. But, hopefully they learn something. Thank you again for your suggestions and support. I’m really glad I joined this site. 😊

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@bentley33

@eppie I feel your pain and frustration, that’s why I joined this group. Everyone on here is amazing! They are all fighting something and taking time to offer advice and give support. I honesty never thought I’d be here. You said you have PFD, I just started physical therapy for that and had an awful test done for it (I think) I don’t think it’s going to come back as something I have (not as bad as yours) but maybe some form of it.
And about the pain! OMG!!! You tell the doctors your in pain, they can see it, and when you get pain meds they blame you! At least that’s what happened at my last hospital stay 2 months ago. I literally say to them “ yep, I’m a doctor hopping pain pill seeker who loves these invasive procedures just to get a “fix”, give me a break!” Hardly anything touches the pain when it’s really bad. I get so upset when they assume things instead of doing their job! We all have these problems and don’t need to be judged by someone who’s never experienced anything like any of us have. I will be talking with my GI doctor after my next 2 tests to see about “ alternative pain meds” and I will be trying alternative help with my issues. Try everything! Then when it doesn’t work I like to shove it in their face (the mean docs anyway) and say see!!! Ugh!
Your attitude is great and it’s hard to always stay positive. This is part of my life and I’ve accepted it, but I keep trying to find ways to feel better. And take my good days and enjoy them. This site has really helped me, especially since I’ve been having some dark days. When I find something that actually helps me I will gladly share, until then, it’s more tests and emotional support to get thru them. And any emotional support I can give I sure will, because this not fun. Good luck

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I went to my first nutritionist appointment 2 days ago. I was sitting next to some lady who was seeing a different doctor for a completely different issue. We began chatting and when I said I was there to get help gaining weight she basically laughed in my face. She said and I quote "Seriously, there are people out there who are obese and struggling, whom have real health issues and can't lose weight. You're here to gain . Eat more?" If I weren't emotionally drained at that moment there would have been a cat fight.

I think one of the worst parts of this is the lack of sleep. This country is so concerned with the so called opioid epedemic danger from people who abuse, that people like us are suffering the consequences. The real danger is me running around in pain with no sleep and then getting in my car and driving. My parents, mom 76 and dad 81 both have serious problems. My father can't walk anymore without falling down half the time and my mother's spine is basically collapsed. They have to jump through hoops to get their pain medication. They were told that they weren't even allowed to be on the same pain meds. No household can have more than one person taking the same drug.

I too shall share advice on things I've tried and will try along the way. And if there's anybody out there who lives in the NY vacinity, I would love a face to face, if possible. There's just so much sharing I can do with people whom can sympathize but not empathize, and truly, I know deep down they really don't want to talk about it. No judgment just a fact.

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@eppie

I went to my first nutritionist appointment 2 days ago. I was sitting next to some lady who was seeing a different doctor for a completely different issue. We began chatting and when I said I was there to get help gaining weight she basically laughed in my face. She said and I quote "Seriously, there are people out there who are obese and struggling, whom have real health issues and can't lose weight. You're here to gain . Eat more?" If I weren't emotionally drained at that moment there would have been a cat fight.

I think one of the worst parts of this is the lack of sleep. This country is so concerned with the so called opioid epedemic danger from people who abuse, that people like us are suffering the consequences. The real danger is me running around in pain with no sleep and then getting in my car and driving. My parents, mom 76 and dad 81 both have serious problems. My father can't walk anymore without falling down half the time and my mother's spine is basically collapsed. They have to jump through hoops to get their pain medication. They were told that they weren't even allowed to be on the same pain meds. No household can have more than one person taking the same drug.

I too shall share advice on things I've tried and will try along the way. And if there's anybody out there who lives in the NY vacinity, I would love a face to face, if possible. There's just so much sharing I can do with people whom can sympathize but not empathize, and truly, I know deep down they really don't want to talk about it. No judgment just a fact.

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haha, a cat fight, lol. I’m with you on having to explain my health issues to people just to not be judged and also just letting it go because you don’t have the energy. And their advice, “eat more,eat less” ….wow good thing I never thought of that 🤦🏼‍♀️ha
I had no idea you couldn’t have the same type of pain medicine in the household for other people. That’s crazy. And I’m tired of being judged and blamed because of the opioid crisis of others. I understand it’s a disease, but we have diseases and problems too, so why should we have to suffer? Ugh, it just feels like I’m on a hamster wheel, spinning and spinning and spinning and getting nowhere 😕. I hope some day soon I’ll break free and so will you and everyone going through things like this.
I really wish I could get my stomach to go down. It’s been extremely bloated and bruised (not sure how that happens🤷‍♀️) but it just won’t budge no matter how many laxatives I take. Tried a couple Yoga poses the other day and it hurt so bad, my son did them with me so I wasn’t alone❤️ but he buzzed thru with no problems, so he helped me out like usual. But I’ve been in so much pain since, I haven’t done them again.
Do they have you doing PT or stretches For your PFD?

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@bentley33

Thank you, my son has given me strength and a reason to keep fighting these issues 😊
Yes, my GI doctor has me flagged, so 2 days before I come in he is online doing research and talking to colleagues to see if any new advances have been made or any studies. I’m a hard case, as are a lot of us on here. After these last 2 tests, one us a Colon transit test, and the other is for my stomach. After these we will meet in the “war room” and see what’s next. He is open to anything and I’m guessing he will want me to try acupuncture and maybe something else. He’s not excited about surgery and neither am I. I’m hoping to get answers but feel like I’m just spinning my wheels. Maybe when I meet with him he will have come up with new things or another colleague to see. He sent me to a Colon specialist that he trusts to check that out. I want to feel better and be cured like yesterday, it’s really wearing me down. And I would totally drive however many hours or hop a plane if he knew of someone that could help. Some doctors aren’t like that. If they can’t find it, then there is nothing wrong with you and don’t think about a 2nd opinion because they won’t help either. So I feel lucky to have found a non narcissistic GI doctor open to get help from others and listens to my ideas.

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@bentley33, It sounds like you are headed for additional testing and doctors. I don't know how long until your appointments, but here is a discussion where members are sharing tips about How to Get Off to the Best Start with a New Specialist. I hope you find something that can help you as you move forward.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?orderby=ASC#chv4-comment-stream-header

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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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@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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@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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@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’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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No. 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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@bentley33

I’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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OMG! 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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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.

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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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