Severe stomach pain

I came across your post and wondered if you got a 2nd opinion. It does not sound like enough testing has been done and maybe a new set of eyes can identify another approach. I hope someone else answers with knowledge, I just feel for a 22-year-old trying to find an answer and a mom who may feel powerless. Keep us posted.

We keep trying everything, we got sent to see a doctor who specialises in Sphincter of Oddi Dysfunction, which they thought it might be but just got told it’s not that so she’s getting very frustrated, now. There going to send her to a chronic pain doctor to manage the pain, but that won’t help with the symptoms. Been told it’s not crones/colitius , ibs , diverticulitis as these are in the family. They even phoned her and told her she had cancer at one point and then changed there mind. I’m just hoping someone might see my post and suggest something to try and we’re at a loss, and it’s alfull to see how she’s deteriorated

Hello @vickyl, and welcome to Mayo Clinic Connect! Your daughter is really struggling and you are in a super difficult place, Mom trying to help and not able to fix it. I am so, so sorry. My daughter struggles with migraines affecting her day-to-day, tough for this mom. You have landed in a good place for sharing with others who understand.

I have been struggling for several years with stomach pain, digestion, weight-loss, etc. For me, I made progress after establishing care that walked me through an intentional troubleshooting process. From there, they helped me do all I could on my end with diet, exercising, controlling stress, etc. so I could get to a stable place best for knowing what to address. It has felt like peeling big ol’ onion layers, addressing one symptom at a time.

I am not a medical professional at all so I’m not sure how to diagnose what is happening with your daughter. I can speak more to the process of pinning down what I know, find a plan of attack with someone I trust, and focus on doing what I can do. I am thinking of her specific symptoms of blood in stool and elevated liver numbers since you are confident something is going on there.
- Blood in stool symptom checker: https://www.mayoclinic.org/symptom-checker/blood-in-stool-in-adults-adult/related-factors/itt-20009075
- What about high liver enzymes: https://mcpress.mayoclinic.org/healthygut/my-liver-enzymes-are-elevated-now-what/

@katgob brings up a good point that taking a different approach may be helpful. I am not sure where your daughter lives to know what options she has. Here is a list of excellent GI locations she may want to consider:
-Best GI locations: https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery
-Mayo Clinic appointment: http://mayocl.in/1mtmR63

Does your daughter see a GI doctor who is walking with her through this troubleshooting process, and if so what is her next step? Is anyone else going to appointments with her?

She was sent to see a doctor who specialises in Sphincter of Oddi Dysfunction, which they thought it might be but just got told it’s not that so she’s getting very frustrated, now. There going to send her to a chronic pain doctor to manage the pain, but that won’t help with the symptoms. We feel like there just saying we’re deal with the pain and we’re being brushed off as they don’t know what it is, we have to keep fighting to been seen again
Been told it’s not crones/colitius , ibs , diverticulitis as these are in the family. They even phoned her and told her she had cancer at one point and then changed there mind. I’m just hoping someone might see my post and suggest something to try and we’re at a loss, and it’s alfull to see how she’s deteriorated
I do appreciate your suggestions
Were in Somerset uk I’m willing to travel anywhere in uk if it’s help

Just came across this.
Just a suggestion of course, have you tested for celiac sprue?
Also has she had a biopsy during a colonoscopy for microscopic colitis? Thinking also of an ulcer or bleeding disorder?
Autoimmune diseases are so hard to get diagnosed. I suffered 53 years before we figured out the wheat barley rye issues. Gluten zero has literally saved me.
I recommend “Urban AIP” company, they ship very nutritious and clean meals, frozen and ready to reheat.
AIP (autoimmune protocol) way of eating for a while heals and helps inflammation.
Also a good refrigerated probiotic helps everything. (Kirkman probio brand is what I use)
Danielle Walker cookbooks are amazing too, I feel like most things are food related.
One more idea, my liver numbers went nuts once with a round of antibiotics (Zpac…macrolide).
Just some things to consider if you haven’t, mostly just sorry for you both.
I hope you find answers soon.

I wish I could help- I just understand how she feels. I’m having GI issues and don’t have a definitive diagnosis either. Doctors don’t know what is wrong and I haven’t had much support either. It is scary when symptoms are spiraling out of control like this. It might be a good thing to seek out an entirely new doctor and start over at a well known GI clinic. Would that be a possibility?

With those test results, is the doctor not doing anything? If not, maybe you should find a new doctor!

Yeah, we’ve been talking about maybe seeing about going private. It just cost so much money. I think we do need a completely different doctor though for a different view on the matters.

I’m in the U.S. and it’s been incredibly expensive dealing with my issue as well, but the way I see it, I have no choice. I feel for you, I really do. It will be worth it.

I often have serious pain in my stomach. I have had a scan on my stomach and various blood tests which proved inconclusive. At times it feels like the bottom part of my stomach is badly bruised or on fire and if I bend the pain often comes back. The doctor told me to take Milk of Magnesia but I do not consider that a cure.