I just spent 11 weeks in 2 hospitals with my husband who was is so much pain, he had to be sedated heavily for x-rays to be taken. He was on heavy pain meds, both IV and po every 10 minutes. THe first hospital had a good reputation, and could NOT find the problem. He had multiple arthritic and fractured areas in his back, so they focused on that. For all this time , I slept in his room or at a hotel within walking distance should he need me. They diagnosed dementia---psychosis----just think of all the narcotics he was on!--gee, do you think it may have made him nutty? Then, they told me he had pancreatic cancer, even though his "scans were clean", his " numbers in the blood were up"/ I'm a retired Oncology nurse, and I was the spouse from hell to save him. I was getting Hospice lined up, when by some miracle, I was able to get him into a newly opened GI unit. Within 24 hours, he was diagnosed with IBS. He takes an ancient, no side effects pill, Bentyl before each meal. Pain is gone. He had lost 30 pounds, had not eaten solid food in 12 days, was severely malnourished, nearly demented from the overload of pain killers. He takes pain medication twice a day now, and is completely lucid. 90% if his drugs were discontinued. For 11 weeks, he remained in a screaming fetal position, begging even OUR PRIEST to find a way to have him die without it being a mortal sin. I could hear him weeping when I got off the elevator---this man who NEVER complained about pain in his life, weeping like a child for relief.
This started about 3 years ago, very mild and infrequent, and then came and went, then just parked itself in his belly, and gut, mostly right side. Lots of gas too. By the time this year rolled around, he was beyond help, it seemed. I urge all of you who suspect that you have this disease from hell to ask about Bentyl. It can be given to children as young as 6 months old! It was used quite commonly 30 years ago for children who had "pre-school" tummy aches. If this post can help JUST ONE PERSON avoid the hell and fear and beyond words pain that we went through, it will have been worth it. I rarely write on boards, but this disease nearly took my LOs life, and it shouldn't have taken so long to diagnose it.
And it DOES NOT matter what "causes" it---stress, actual autoimmune activity, the phases of the moon for crying out loud! The pain is beyond belief, and pain is ALWAYS a symptom----doesn't matter where is originated. Fight for your health. On this one, you are pretty much on your own. One who saved a LO>

It scares me constantly that when doctors can't figure out pain or other disorders, that they automatically diagnose it as a mental disorder. That to me rolls medical care back to the middle ages.

Thank you for staying with this disorder and trying to get your husband the help needed. To endure that pain and then be told other diagnoses is too scary from doctors that are supposed to help and not hinder. And many of us have IBS and other ailments and its scary to think that we could be in your husband's stead one day.

Thank you again.

It's wonderful that the Bentyl has been such a miracle for your spouse. You were his ANGEL to not let the pros charge forward with dumb diagnoses.

As one who suffered from IBS for 5 decades, I well understand the pain. The majority of folks with IBS do not have it to the degree of severity you describe. I myself did have a severe case, with 3 inpatient hospitalizations during my IBS years.

I was tried on many different meds, including Bentyl. Unfortunately, for me, Bentyl did not help. Nor did any of the other meds I was tried on. I was even tried on narcotic meds for the pain. All they did was distance me from it -- while making me totally nonfunctional on every other front.

Serendipitously, I discovered that I was gluten intolerant. After faithfully following a gluten-free diet, within one month, my severe gut and rectal spasms evaporated. This miracle has been upheld for 5 yrs now, with only 1 relapse, when I purposefully cheated on the diet. Within hours, I was back in bed with pain.

I agree with you that we are pretty much on our own, with IBS. Frankly, I don't care if my docs think I'm a nutcase for following this diet. Losing IBS was great. One less problem I have to cope with.

However, for me, I believe there WAS a cause for my IBS. Discovering that cause was a wonderful route to healing. Not that I think everyone with IBS is gluten intolerant -- but I do believe at least a subset of us are.

Best wishes.