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

@eppie

I’m not writing to give advice, as I am in the same boat as most on this site, but what I can do is commiserate and tell what I’ve tried and what I’m still trying.

Surgeries: Appendix, kidney stone removal, 2 atopic pregnancies ( that’s when the fertilized egg gets caught in the fallopian tube and starts growing there. Immediate fallopian tube removal is required), c-section ( invetro twins), gall bladder removal, scar tissue removal (but as we know, it grows back twice as much when removed), and an ERCP which led to pancreatitis. I have a redundant ( tortuous) colon where a colonoscopy can’t be done and most recently, after searching years for an answer to this lower pelvic pain (keeps me up literally all night long), I was diagnosed with Pelvic Floor Dysfunction. PFD IS THIS: your pelvic floor is like a sling that holds your intestines in place, as well as your spine. The pelvic floor is also attached to your hip bones. When your pelvis is weak and starts to drop your intestines become misaligned. I’ve been told It probably began with pregnancy ( I was 110 lbs and gained 80 lbs with the twins. They are 19 now). PFD symptoms: bladder leakage ( I don’t have this),constipation, lower pelvic pain, extremely painful intercourse, unexplained back pain. I have 4/5 of the symptoms. And men can get this as well, although not as common as with women.

Between the tortuous colon, the massive amount of scar tissue, and the pelvic floor dysfunction, i have horrible back, hip, and pelvic pain, and major bathroom issues, which I’m going to call IBS because I don’t know another word to use. What I go through on a daily basis with my stomach can’t be described in words or on paper. I have eliminated most foods because eating makes things worse, I’ve lost many friends because of this, and I have tremendous guilt because my wonderful husband shouldn’t have to deal with me.

About 2 months ago I got sick. I lost 12 lbs, which put me at 93lbs. I’m 5’4”. I had to take a leave of absence from work ( going back in about 3 weeks, and with 2 kids in college it’s the worst timing ever), I’ve gone through several back epidurals, going through PT for the pelvic floor 2x a week ( It’s not your normal PT. It’s very invasive and emotional); which includes internal vaginal injections every 3 weeks. I do home exercises and stretches, acupuncture 2x a week, a psychologist 2x a week, I’m having my first nutritionist appointment today because I can’t gain any weight back and eating scares the crap out of me because I get such bad stomach pain, and I’m trying to find a psychiatrist that takes insurance because pain management ( really, and this is their job) and my internist are both uncomfortable prescribing pain pills. I take different pills at different times for different issues. There’s more, but I think my point is taken. You’re not alone.

To answer your question, yes you try everything. PT, acupuncture, whatever. This way no one can ever say “well the dr said to do this and you didn’t want to listen”. I’ve just began acupuncture. I’ve been told you will notice the effects after 2x a week for 6 weeks. I’m on week 3. Right now I believe it to be hocus pocus. People look at me like I’m crazy ( at least that’s what I think. It could all be just in my head), you’re made to think that you’re a drug seeker because you stress at the Dr’s office when they dont prescribe enough pain medication to get you through a month. Perhaps if I call them every hour on the hour during the day and especially at night due to the pain they’d understand. I’m exhausted as all of you out there, yet I have to keep smiling for the people around me because who wants to be around Debbie Downer, when in truth, I’d like to just sit in my bed, watch tv, and be left alone.

Until modern medicine is equipped to handle people with multiple issues simultaneously, physically and emotionally I personally see no way out, but it’s nice to know I’m not alone out there.

My saying is 1 step forward, 3 steps back, followed by the song “ I get knocked down, but I get up again. You’re never gonna keep me down”, by Chumbawamba. At least this makes me laugh, along with The Big Bang Theory.

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@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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@rosemarya

@bentley33, I noticed that you mentioned that you "have found a GI doctor that has read ALL my medical records and sticks by me". I see that as a potential glimmer of hope for you. For example: I was treated by my local GI for 7+ years for a rare liver disease. He had a colleague (liver specialist) who practiced 90 miles away at a major hospital. These 2 fine gentlemen communicated via phone about my condition. I did need to drive to an appointment (90 Mi) on 2 occasions.
Do you think that such a solution is possible in your case? If you haven't done so, would you consider asking about it?

You have a beautiful son.

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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

@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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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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@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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