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Dr can’t help my IBS. Now what?
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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Second opinion??? Are you close to one of the big teaching hospitals like Mayo. John's Hopkins, Stanford. etc?
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3 ReactionsI am sympathetic to your situation. I was diagnosed with IBS in my 40's after a hysterectomy. I had repeated colonoscopies and my doctor always said he saw nothing but yet the colonoscopies continued. I realize now I should definitely have taken my records to additional drs. But I finally decided to try acupuncture and for me it worked. My health insurance did not cover the cost (now it does) so it was expensive. But my pain eased and I felt like a new person. I went for several months but ultimately had to stop because of the pain. My GI didn't say much when I told him of my success.
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3 ReactionsI meant to say "I went for several months but ultimately had to stop because of the money."
I know the feeling, the Gasto docs dont seem to be helping. I tried the Organic/unpasteurized/unfiltered Apple Cider Vinegar from ALDI for $4.59 and it seems to help ME. Maybe its helping digest my food before it gets to the intestine. You, who knows, but it cant hurt. My ulcer surgeon cut a Vegas nerve in my stomach and also removed my Deodenum for the bleeding Ulcer- which we know know was a mistake, but at least they didnt cut me and bleed me like last century! I put some fake butter in my mouth and swallow before chugging the Vinegar- it burns some even cut w/Water. but the diarrhea is better, not totally fixed! Cheers!
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1 ReactionYup, I can relate. Last September my hubby and I were traveling out west, mostly Montana in our RV & I git not only cdiff but ecoli! We are always so careful with clean water that is triple filtered so obviously it wad a food source. This is always a fun bathroom experience in an RV traveling!
Couldn’t wait to get home. Treated by Gastro bit it took so long even after the gold standard top antibiotic. By January I went back again & Dr. said it is post infectious IBS. Id have to be patient. He did give me a drug called Cholestipol that actually helped a bit with cramping & watery diarrhea.
Fast forward March; cdiff recurrence. UGH!! But in all fairness, I have autoimmune disease that played into my immune system not being able to handle the cdiff that is in all our GI systems. I was actually in a huge autoimmune firestorm & very sick. My body couldn’t handle anything! I ended up at Mayo in AZ for 2 weeks. They ate AMAZING!!!
Is There anyway you could try to get into a Mayo Gastroenterologist? There are Mayo associated clinics popping up all over besides the 3 hospitals around the country.
They are doing amazing research work on the gut especially now.
Even if not keep going with finding a new GI. You really have to be your own best advocate. You deserve not to be dismissed!!
I wish you lot of luck & good health.
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3 Reactions@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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1 Reaction@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.
@aileenredding Thanks for responding.
I wish that more treatments like acupuncture were available on insurance. I used to have it done many moons ago in the UK for my fibromyalgia. I found it very relaxing.
I will contact my insurance and see if it is available with them (I highly doubt it because UHC sucks!).
@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?
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.