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Miserable

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I am new to this website. I was diagnosed with a “spastic colon” around 1980 when I was 27. I am now 72. At first, I had episodes occasionally. But, it has gotten much worse. I never have a BM now without cramping and pain. I have tried Linzess, Trulance, and most recently, Amitriptyline which worked for 9 months , then stopped working. I have followed the FODMAP diet and gone to therapy. I only drink water, watch what I eat, and eat very small portions when I do eat. I exercise regularly. I have no appetite and I dread eating because I know it will cause me pain later. I used to have IBS-D but now I have IBS- C or a combination of both. I am curious to know whether others have the same kind of episodes that I have. Mine usually start with a little cramping. I go to the bathroom and I seem to be fine for 30 minutes or so but then the cramps come back and don’t stop. The cramps are like labor pains and sometimes, nothing else happens. I do the same breathing during these cramps that I used in labor. I try to take drugs - Dicyclomine, or hyoscyamine (which my doctor was hesitant to prescribe because he said it was the same as Dicyclomine; however, it is a tablet that melts under your tongue so works faster). Side note - I found and bought dissolving Imodium online. It is not sold in the U.S. - Because nothing is happening, I don’t know whether to take Imodium or a laxative because I don’t know which I’m dealing with. Then, the sweating begins. It drips off me and my clothes get soaked. That’s when I start taking anything that will stop the cramps. There are times when I take 6 Dicyclomine and 4 Imodium. When the pain gets really bad, I may or may not throw up. But, I only vomit once. Eventually, the drugs kick in, and I get very drowsy. There is a hamper in my bathroom that I pull up in front of me and lay my head on sometimes with a pillow so in between cramps, I doze off. I go to bed with a heating pad and that’s when I get uncontrollable chills no matter how many blankets I pile on. Eventually, I fall asleep. The next morning, I feel weak, usually with a headache due to dehydration. That used to be it, but more recently, after being up for an hour or so, the cramps return but not as bad. I can usually curtail them by taking drugs immediately. I went to a new GI doctor last year. Nothing has worked and she has run out of ideas. I have been reading on this site and seen some treatments others have tried that are new to me so I will be researching those. I don’t know if anyone else has become frustrated because it seems like people, even doctors, don’t understand how awful IBS can be. I had a friend who thought I was lying about it and using it as an excuse for eating small meals so I could keep my weight down because I was “obsessed with being thin”. We are no longer friends. Anyone else have the same experience I have had?

Dear @Nancy George

At 72, while not old, it is more challenging to treat IBS as medications have less testing in this age group and non-medicinal options may have a different impact.

You mentioned that you have tried most IBS-C medications. I didn't see IBSRELA listed which is the newest one. You did mention amitriptyline, discylomine and hyoscyamine and while they might help with pain, their side effect is constipation and is usually prescribed to those with diarrhea and not constipation. Some with mixed IBS (both diarrhea and constipation) do have some good success with them. A low FODMAP diet has some evidence to help with IBS-D, but does not seem to be as reliable for IBS-C.

Mixed-IBS is a challenge. The recommendation is to treat the most troublesome symptom - diarrhea or constipation, but not both as you will just swing back and forth as you've described.

Imodium will plug me up for days so I stay away from it. You might have some success from Viberzi which is for diarrhea, but take it half dose and not every day. It may even out the diarrhea and constipation. NEVER take it if you don't have a gallbladder or have constipation.

You're right about some doctors not understanding the quality of life issues with IBS. It's a huge challenge even if we don't have something that will kill us.

You mentioned that you investigated therapy and I'm wondering if that was a GI Psychologist? They have more specific training toward gut issues. You didn't mention meeting with a Dietitian. You might consider finding one and seeing what they can recommend. Dreading to eat is not a way to live.

I'm sorry to read about all your challenges. I hope some of these suggestions will be helpful.

Jeff

Dear Nancy, my name is Andrea,

I just wanted to say that your post really resonated with me. I totally understand how you feel — and even though we’ve lost some “friends” along the way, I’ve learned it’s actually a good thing. It helps us see who truly stands by our side.

I was diagnosed with irritable bowel syndrome when I was 19. Now, at 35, after seeing countless professionals, I finally found someone who helped me achieve complete remission — something I never thought possible. Her name is Patricia Alonso Lovera, she’s a nutritionist and pharmacist here in Spain.

She treated me for a month, and then we began carefully reintroducing foods. For the first time in years, I feel alive again. 🌿

So please don’t give up — and don’t just settle for what conventional doctors tell you. If you’ve already done every possible test, consider looking into functional medicine. It’s more expensive, yes, but IBS is a functional condition, and that’s why functional medicine can actually help when traditional medicine can’t.

Please be very careful with taking medications that can cause dysbiosis (an imbalance in gut bacteria).

Many drugs —even some of the most commonly prescribed— can seriously disrupt the microbiota. Some of the most problematic ones include:

Antibiotics, especially broad-spectrum ones such as amoxicillin, ciprofloxacin, metronidazole, or clarithromycin.

Proton pump inhibitors (PPIs) like omeprazole, pantoprazole, or esomeprazole, which reduce stomach acid and promote bacterial overgrowth.

Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, naproxen, or diclofenac, which damage the intestinal lining.

Antidepressants and anxiolytics, particularly SSRIs (like sertraline, fluoxetine, or escitalopram) and benzodiazepines, which can alter motility and gut flora composition.

Oral contraceptives, which affect intestinal permeability and hormonal balance.

Corticosteroids and long-term antihistamines, which may suppress the gut’s immune response.

Edited by Adetejada

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