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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suetex | @suetex | May 24 4:33pm

In reply to @yorkshirerose2016 "@suetex thanks for responding. What is sjorgens?" + (show)

@yorkshirerose2016 It is another autoimmune disease that can attack any part of your body. They are finding more out about as we speak. I found out about the action on the GI tract from one of my drs.

geekygirl9 | @geekygirl9 | May 25 2:20am

In reply to @yorkshirerose2016 "@hopeful33250 thank you for responding. I have lost around 40lbs in the past two years through..." + (show)

Hi @yorkshirerose2016, by any chance have you been checked for SIBO? Also, I assume you've been tested to make sure the C-diff is gone (I hear it can persist long-term)?
I recently got a book by Izabella Wentz, called Finding and Treating the Root Cause of IBS. It's super detailed and maybe you'll find something helpful in there. She talks about LDN in there, too, by the way.

marylandbob | @marylandbob | May 25 6:49am

In reply to @mark1952 "@yorkshirerose2016 I am sorry to hear you have IBS-M. As you say, managing that must be..." + (show)

@mark1952
I had IBS-C / IMO for a few years and went thru the antibiotics etc, with only temporary help. Finally, i found that 64 oz of water per day and only 3 meals with 5 hours in between meals with no snacks of any-kind including any liquids with calories, along with antimicrobials, gut beneficial supplements and motility support. Motility support included Miralax, Ginger, Artichoke/Ginger, Magnessium citrate and MCT Oil. My problem was started by a lack of some enzymes. After 4 months of the low fodmap, supplements, eating on schedule and some enzyme I now am doing well with a normal eating routine and good BMs. Good luck!

mark1952 | @mark1952 | May 25 7:37am

In reply to @marylandbob "@mark1952 I had IBS-C / IMO for a few years and went thru the antibiotics etc,..." + (show)

@marylandbob
Thank you so much for your response. Very happy for your success story. It buoys others! So much food for thought. Will give it a close reading and possibly ask some follow-up questions if that is okay.

Mark

choosejoy | @choosejoy | May 26 10:53am

In reply to @yorkshirerose2016 "@hopeful33250 thank you for responding. I have lost around 40lbs in the past two years through..." + (show)

@yorkshirerose2016
Hello. First off I am sorry for what you are going through especially not getting answers you need.
So a few tests that GI office could order are: SIBO breath test, CSID breath test, HIDA test for gallbladder, stool test for EPI. Have you done any of these? You can quickly search the web for info on these tests/conditions. Some GI docs don’t think the breath tests are accurate but I personally think they are helpful. You do have to weigh out the cost benefits though.
If they’ve only done a CT scan of your gallbladder they wouldn’t know if it’s working properly without doing a HIDA test.
My GI docs had me work with their office’s dietitian who recommended the FODMAP diet. For a fiber supplement she has me using Sunfiber (find on Amazon) which is gentler than others.
It has been a journey for many years with IBS-M. But through the tests you may get more info and need to go on Xifaxin - a GI antibiotic. It helped me a lot.
I also am aware of a stress response in my gut and did do some counseling for past trauma. While I’m not sure it helped my gut issues, it was helpful in general.
Other methods to try are acupuncture, massage, heating pad, etc.
For me, prayer and offering my pain up has helped. I think I’ve become more compassionate to people’s pain that is not visible. Chronic pain takes a toll and finding someone going through similar things eases the suffering. I guess that’s part of the purpose of this forum.
I sure hope you get some answers! Keep us posted.

burrpenick | @burrpenick | May 26 9:11pm

In reply to @burrpenick "Yes, this Simply nature Apple Cider Vinegar from ALDIS is organic and not processed. They even..." + (show)

@burrpenick OPPS, first week definitely helped, next week less, 3rd week back to original condition- diarrhea. Also read that ACVinegar is not good for folks that have had stomach surgery and also messes w/absorption of meds. ACID!

ericawiersfischer | @ericawiersfischer | May 31 9:39am

In reply to @suetex "I suggest that all the above try Low Dose Naltrexone. Read about it first. Then if..." + (show)

@suetex
Just want to throw something out there regarding LD Naltrexone.
This gets pushed on our community a lot. I am not onboard with any meds that have the potential to psychologically alter my personality. So, I am still declining my many docs several attempts to get me to try it, but I also had genetic testing done that confirms that psych meds and my chemistry do not interact well. So, I would beware and do diligent research as you suggested, before trying any medication. I just think you should always know what you are possibly in for. I don't know why docs are always pushing meds like this on everyone. I have had it put in my chart not to even offer me anything that has that potential for psych effects, as when they try to sell it as something else, I have issues from the fact that it is also used for psych and those effects it has on me, and that is extremely dangerous to me.
To each his own though. Whatever works for you and what you are willing to do is up to each of us. I am glad it is working for you. I have provided what Mayo Clinic has for information on this medication if anyone would like to research it.

ericawiersfischer | @ericawiersfischer | May 31 9:41am

I didn't see the document attach so I am trying again.

Shared files

Naltexone-mayo clinic (Naltexone-mayo-clinic-1.pdf)

suetex | @suetex | May 31 10:45am

Thank you for your comment. I was not aware of any side effects that any one had because I had none from the very beginning. I guess I am very lucky that way. I am sorry it not so for you. And you are right to be very careful. I know that LDN isn't for everyone. I guess I was encouraged to start at a lower dose for a reason. But it tured out to be just what I needed. Otherwise, the sulfazalinene would have done my kidneys in.

invisiblepain2 | @invisiblepain2 | Jul 24 4:47am

Hello!

I developed 24/7 abdominal pain around the bellybutton with tenderness 12 days after food poisoning. It’s been 4 years and it’s only gotten worse. I have bloating, feeling of fullness, and constipation. No treatment has worked. My pain only stops while using TENS, cold water and only during ketamine infusion not after. Also did celiac plexus nerve block which only eased bloating pain not my own pain. I am also looking for treatments?