Desperate for Answers - Chronic Pain After Eating, No Diagnosis

Hello, been awhile very sick. Seems an hour or two after I eat in excruciating pain. I've tried many altered diets, but it doesn't seem to matter what I eat or drink, the pain comes. I've lost 65 pounds in the past year. I was hospitalized in Feb for two weeks, several tests reveal nothing. They said go home and eat, take pain meds, come back and maybe something will present itself. So I did, got worse. In May, back in the hospital again, more tests, nothing. No intake for several days, then tried to have soup, yogurt, and pureed food, still pain but pain medications offset. After three weeks, home again. Worse. My son-in-law came 2 hours to drive me back downtown Toronto where the initial total was done 3 years ago and recent tests and hospital stays. Sunday night to ER. X-ray said +++stool in there. Which I don't understand because all I've had is yogurt, lactose-free milk, and gastrolyte for the past twelve days. Less active in stoma and did see some rice and residual food from what I ate 10 days prior. Took diovol for gas which just brought more water through. So at the hospital, the resident doctor said the head doctor looked at all the tests I had done, you're constipated, gave me lactulose, and discharged me. I couldn't believe it. This was not an isolated incident. It's been going on for a year. The pain is unbearable. I can't eat or drink without severe pain. You give me lactulose and discharge me before seeing if it even works! Lactulose not working two days later, pain worse, and it seems I have no recourse. In bed with a heating pad, taking pain meds and anti-nausea meds. I used to get a break in the morning because I would try to eat around 2, then a couple of hours later, pain, back in bed, sometimes so bad I can't even breathe, still pressure pain in bladder not working right yet no infection. I'm at the end of my ropes with constant suffering and frustration, feeling like I have no one to help me. I tried to tell them I think it's adhesions, but they are not willing to investigate. Can't live like this. Please help.

Dawn,

I'm so sorry you have all these issues and a hospital system that is not helping you. Have you contacted your GI doctor and let them know how severe your condition is? Is there anything I can do to help you?

Terry

Thank you Terry, GI ran tests while I was in the hospital but mostly seen by hospital GI, Surg, and Med teams also running tests. Last visit to ER Med dr discharged me without GI consult because he looked at previous tests.

Are you able to try another health system altogether for a second or third opinion? Being in pain is not okay. Good luck and I hope you feel better soon.

Thank you LadyHope, that is my plan to get to another hospital where I'm awaiting GI referral in London, Ont. where I live, transportation is an issue, so debilitating.

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I'm wondering if they did a (X-rays are different than CTs) CT of your abdomen? Maybe scar tissue is the issue? A stricture? I don't know for sure, but I hope your GI finds out and treats it right.

I agree, a CT scan would be much better. I just had a CT enterography done a couple weeks ago. That shows everything. Might want to ask your GI doctor about this test.

Yes Ozzwood, several X-rays and CT scans done and ultrasounds. This time showed ++stool yet I haven't eaten in 12 or more days. With previous tests, no stool showed but pain persisted when eating, severe pain, can't breathe pain. Pain meds don't reach the pain, Ensure just makes very bad gas. I've tried everything. I'm hoping the new doctor has some sort of miracle test. I've read that adhesions do not show and exploratory is the answer to remove them. They said laparoscopically is risky and may not get all adhesions and could cause more adhesions. At this point, I don't care. Thank you very much for writing. My tummy is scorched from my heating pad but my best friend right now.

I have had the same thing as you have described, it sounds like you have blockage and if you do, you need to have another operation to get cleaned out. When I had this, I was vomiting all the time and like you, I could not eat. The surgeon told me that stool flew across the room when the kink was cut loose. I have not had any other problems since. I feel so sorry for you as the pain is the worst, but it sounds like you need a good doctor to get this done. I took everything to clean me out and nothing worked, so it can't always be found on any type of x-ray or scan. I will pray that you get this done and you will be okay. Please stay in touch and may God bless you, Greg.

Thank you, Greg. I finally got an appointment date with this new GI, but not till the end of July. He will hopefully refer me to a surgeon. No doubt there is a kink/adhesions in there. Not a total blockage but partial because fluid was passing, although slowing down from normal. But seeing bits of things two weeks prior? I feel them. Now taking Dulcolax and Lactulose and trying to eat anything that sort of melts. The pressure on my bladder is very painful and cannot walk for any length of time before the pain from pulling feeling sets in, leaving me hunched over and also causing back pain. In the meantime, very fatigued and weak and if I have to, another dreaded trip to the ER will be my only recourse. So sorry you experienced. You know how bad the pain can be, indescribable.

I know it takes longer to get operations done in Canada as my wife is from there. I hope all goes well for you and my prayers are with you. Keep in touch so I know how you're doing. Greg.

I wish there was something we could do. I'm sorry you are having this much trouble and the doctors not finding out for themselves what is going on.

Is there any chance you could call back and ask if anyone cancels on an earlier date that they notify you and you could take that appointment?