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Dr can’t help my IBS. Now what?

Posted by yorkshirerose2016 @yorkshirerose2016, May 20 7:09am

Hi all, I hope you’re well?

I have IBS for over 20 years and managed it well until 2020 when I contracted c diff in the UK (I now live in the US). Since then I have struggled with constant pain in my lower abdomen and now the area where my gallbladder is located.

I have had all the tests that the GI will do and nothing shows, apart from a small polyp in my gallbladder. My GI dr has said that there is nothing they can do for the pain as I have tried all the meds they could “offer” and essentially be on my merry way. The only information they told me was that I must be depressed or anxious which is what is apparently causing it. To clarify, I’m pretty happy with my life and I’m most definitely not either of those.

I can’t have fibre as it makes the pain worse, I’ve tried homeopathic meds and the ones the dr can prescribe. I’ve done a FODMAP diet previously and know which foods make it “worse.” I just don’t know what to do anymore as the specialist has said they don’t need to see me anymore. I feel lost and know that this pain isn’t normal.

My IBS before was nothing like it is now. I’ve been told it can change after c diff but I would happily have another round of c diff over this pain.

Has anyone else experienced this from the dr or have any advice as to what to try or do now?

Thank you so much

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momac59 | @momac59 | May 21 11:35am
In reply to @yorkshirerose2016 "@momac59 Thanks for responding!this feels like me! Ugh I feel your pain with c diff, my..." + (show)
Profile picture for yorkshirerose2016 @yorkshirerose2016

@momac59 Thanks for responding!this feels like me!
Ugh I feel your pain with c diff, my dr in the UK took two weeks to diagnose it as apparently it’s an “old people” condition. They were surprised when I was finally diagnosed and that was only because I ended up being admitted to hospital.

I am two hours from Jacksonville so I will try and get in contact with the Mayo clinic there. I just want some sort of “normal” life back. Not living in a toilet would be amazing!

Is there a certain protocol you have to follow to get an appointment with them?

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@yorkshirerose2016
How I got into Mayo was starting with a referral from PcP (or in your case the Gastroenterologist?) In my case I was actually trying to get into Rheumatology at Mayo. The only thing is so many patients are trying to get into these specialists there it may take awhile to get an appointment. Mayo Clinic has a great website with lots of information. Call the Admissions department in Jacksonville; they ate so kind & helpful. They will tell you what they would need from you, check insurance, etc to see if you can get in. Here's a little tip. You have to let them know how bad & how long you have been dealing with this & how you are not getting help from other Drs. Also, if you have had any hospitalizations from the GI stuff.
In my case, my Rheumatologist appointment was to be in late May; earliest appointment available. But in April I got really bad & brought in through the ER at Mayo after being at another hospital ER where they couldn’t help me. Mayo said that wad dangerous releasing me like that & assured me they would admit me, figure out what was going on & not send me home until they could figure out a treatment.
Im not saying this will be your experience, especially in outpatient setting, but they are definitely different from the norm in my experience.
Good luck! Hope they can get you in & help yu!
Sorry for the long response; my husband says I tend to overshare everything!!

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burrpenick | @burrpenick | May 21 11:35am
In reply to @yorkshirerose2016 "@burrpenick Thanks for responding. I will try anything at this moment in time. I used to..." + (show)
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@burrpenick Thanks for responding.

I will try anything at this moment in time. I used to do apple cider ginger years ago. Apparently it’s good for you because it contains “mother” probiotic. I don’t think that anything the dr prescribed me helps. But I will give this a go.

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Yes, this Simply nature Apple Cider Vinegar from ALDIS is organic and not processed. They even print on the label that it contains the 'MOTHER'. It definitely seems to have helped the Dirrhea but I cant say if that was the only element....stopped taking Budesinide about 5 weeks ago, eating NO DAIRY, and always eat sweets w/nuts, and never drink w/meals. Good luck

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irishk | @irishk | May 21 12:17pm
In reply to @suetex "I suggest that all the above try Low Dose Naltrexone. Read about it first. Then if..." + (show)
Profile picture for suetex @suetex

I suggest that all the above try Low Dose Naltrexone. Read about it first. Then if it seems right, go for it. I've been on it for 8 yrs. and don't plan to stop.

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@suetex

How has the LDN helped ?

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2 replies
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gravity3 | @gravity3 | May 21 12:57pm
In reply to @yorkshirerose2016 "@gravity3 Thanks for responding. I live two hours from Jacksonville where I think there is a..." + (show)
Profile picture for yorkshirerose2016 @yorkshirerose2016

@gravity3 Thanks for responding.

I live two hours from Jacksonville where I think there is a mayo clinic.

I wanted to see if I could exhaust other remedies before I finally get in contact with them. But I have a feeling I’m just trying not to do it, I’m scared of being told by them there is nothing they can do 🙁

Is there a certain protocol you have to do to get an appointment with them?

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@yorkshirerose2016

If you scroll down the page here you will see request an appointment in bright blue. That may start you on the path.

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suetex | @suetex | May 21 5:13pm
In reply to @irishk "@suetex How has the LDN helped ?" + (show)
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@suetex

How has the LDN helped ?

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@irishk I would say that it heald my sm. intestine when nothing else could and put my Crohn's in remission. I now have normal mucosa from my colonoscopy. And it helps your immune system. All my pills have gone bye-bye.

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2 replies
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irishk | @irishk | May 22 8:31pm
In reply to @suetex "@irishk I would say that it heald my sm. intestine when nothing else could and put..." + (show)
Profile picture for suetex @suetex

@irishk I would say that it heald my sm. intestine when nothing else could and put my Crohn's in remission. I now have normal mucosa from my colonoscopy. And it helps your immune system. All my pills have gone bye-bye.

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@suetex

Wow, it sounds like a miracle drug for you.

Thank you.

Kathleen

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1 reply
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suetex | @suetex | May 23 10:49am
In reply to @irishk "@suetex Wow, it sounds like a miracle drug for you. Thank you. Kathleen" + (show)
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@suetex

Wow, it sounds like a miracle drug for you.

Thank you.

Kathleen

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@irishk Pretty much.

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irishk | @irishk | May 23 11:44am

Am happy for you.
I am going to ask my NP about LDN at next appt.

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mark1952 | @mark1952 | May 23 12:44pm

Hello,
Sorry you are in such pain. Do you have IBS-C, IBS-D, or IBS-M (mixed)?

Mark

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1 reply
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yorkshirerose2016 | @yorkshirerose2016 | May 23 6:02pm
In reply to @irishk "@suetex How has the LDN helped ?" + (show)
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@suetex

How has the LDN helped ?

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@irishk thanks for responding.

I have never been put on LDN. I have fibromyalgia as well and I’ve heard that it works (or helps) some people with that. I will ask my dr next time I see him.

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