Feeling hopeless after surgery didn’t clear up pain/vomiting...

Have you had an upper endoscopy to look at your stomach and duodenum?

Where were your resections - in the colon? small bowel? where in the small bowel?

When does the pain occur? Shortly after eating? Several hours after eating?

When does the vomiting occur?

Do certain foods make it worse?

What medications are you on (for Crohn's and for anything else)?

When was your last surgery?

And when did the pain and vomiting start?

Why are you not on any Crohn's medications?

Where are you located and what hospital are you going to?

It seems really odd to me for them not to have you on meds after just one resection. But after multiple resections, it seems especially odd for you not to be on meds.

What kind of MRIs and CT scans have you had done? MR enterographies? CT enterographies? With oral contrast and IV contrast?

MR enterographies are generally pretty good at picking up strictures, but they occasionally do miss one.

Was your pain also upper left before your other surgeries?

Upper left pain an hour or two after eating might mean higher up in the gi tract (that's in the area where the stomach is). I'd ask for an upper endoscopy.

Did the ct scan they did when you went to the ER include oral contrast and iv contrast?

Functional problems post surgery aren't unusual, but you should get better with time after surgery, not worse.

It does sound like obstruction/adhesion pain. If it is adhesions, then a CT/MRI scan can't easily visualise them, which is probably why they never show up on your scans. However I found something called a Cine MRI, which sounds far better for detecting adhesions.

https://www.ncbi.nlm.nih.gov/pubmed/18322749

I have no idea how available it is, but it is surely worth enquiring into. You could also have exploratory surgery to see if you have adhesions, but the problem with abdominal surgery is, no matter how careful the surgeon is, it tends to create new adhesions - which is the last thing you want.

I don't think your bowel is confused, or at least not that confused. Post-surgery GI issues usually get better with time, not worse, as beave said. The bowels automatically adjust to their new plumbing; gut nerves regrow and relearn to communicate with each other. It does take a while - anything up to a year - but I don't think there is anything which can hinder that process permanently.

Also, even if active Crohn's can't be found, with your history I would go on a biologic. You never know, it might help with the pain.

My other thought is gastoparesis. It's basically paralyzation of the stomach/intestines - slow motility.

Hello all: quick update. Doc says usual “oh this is terrible that you’ve been in pain for so long and cannot eat...” Goes to schedule tests and sees first available is January 24th. 🙄 She wants upper EGD, colonoscopy and MRI. Doubtful they will show a thing but I have to play along. I also suspected gastroperesis... I suppose we will see. Thanks again for support. Have go out for more Boost shakes as it’s all I can handle now.

Your pain and symptoms sound a lot like what I experienced from scar tissue. I went through several tests that came back inconclusive. I asked my GI if the pain could be scar tissue and he wasn't open to referring me to a surgeon.
Then in April when I was having surgery for an ostomy the colorectal surgeon found scar tissue wrapped around my old surgical site. He resected the site and I haven't had an ounce of pain since.

Hopefully you can get some relief soon.

You also should ask for a stomach empty study.

I don’t have any suggestions but can completely relate to you. I was diagnosed age 10, I’m 47 now. Two previous resections for fistulas and strictures. Someone pulled the rug out from under me in May! I was doing ok but began having intense RUQ pain, fevers, and complete fatigue. Diagnosed with abscess and fistula. Took antibiotics, had multiple imaging with MRI, CT, etc. Also had a stricture that had landed me in the ER about once a year with a bowel obstruction for the last 7 years. Finally went forward with my 3rd bowel resection surgery in August and never felt good for even one day after. Was hospitalized for 2 weeks post-op. Now I have raging active Crohns again with abscesses- surgeon missed a large area and I am back to biologics and “wait and see” again. It is completely frustrating, even more so because I am a nurse myself and these doctors move at a snail’s pace. Some days I feel I will just never feel good again. In fact, I have forgotten how normal feels. Hugs to you- just know you are not alone! I am restarting Cimzia which never worked great for me to begin with.

Thanks to you both for sharing. It’s both comforting and frustrating to know that we are dealing with similar issues and are not getting the help we need. Biopsies all came back negative (shocker since my disease in in the small intestine 🙄). They are making e shave the MRI before I’m “allowed” to talk to the surgeon in January 3rd. So no eating for me all through the holidays. Yay. Today I’m just so sad I can’t get out of bed.