Does anyone have short bowel syndrome?

Have you been able to consult with someone who specializes in short gut syndrome like this guy?
https://www.mayoclinic.org/biographies/dibaise-john-k-m-d/bio-20054624
With your current digestive state you must have nutritional deficiencies. I hope you can find a doctor who specializes in short gut syndrome to help you. Most doctors do not want to mess with complicated digestive issues, they have barely got on board with the notion that your digestive system fuels the health of your body.

My abdominal pain is not muscle pain, the abdominal pain is deep inside my abdomen. Doctors want to treat my abdominal pain as muscle pain which it isn't muscle pain. The medications that doctors have gave me for IBS and muscle pain etc. has made my Short Bowel Syndrome worse. Doctors don't research the medications before prescribing them to me. Plus I have a high pain tolerance, so doctors have a hard time treating me.

@beebe
I have seen a short bowel syndrome specialist at University of Washington medical center in Seattle Washington a few years ago. I am trying to get family members to take me back to the specialist in Seattle Washington but my family members also don't understand my health conditions. So it's hard when family members thinks that my GI doctor is treating my Short Bowel Syndrome but my GI doctor isn't treating my Short Bowel Syndrome condition. I don't have very much family support with my health conditions.

@tjanet
So Sorry to hear your family is not more supportive. I hope you can find a Doctor closer to your home so getting help is easier. It looks like you live in Montana, have you tried any of these Doctors?
Kevin Kolendich, Missoula
Nicole Bressler, Belgrade
Mikael Bedell, Helena
Michael Lee, Helena

@beebe
I have seen Dr.Kolendich but he hasn't helped me with my Short Bowel Syndrome. Dr.Kolendich has some experience with Short Bowel Syndrome but he doesn't specialize in Short Bowel Syndrome.

@tjanet
Well that sucks, I am sorry to hear Dr. Kolendich was of no help. I find it odd that Doctors do not care enough to refer you on to someone who can help or spend a few minutes researching to educate themselves on treatment protocols. I once had a primary care doctor throw up her hands and tell me "You are too complicated!" and then walk out of the room. She did not bother to refer me on to someone who could help, she just wanted me gone. Needless to say I found a different primary care doctor.

Doctors want to treat my abdominal pain as tissue/muscle pain instead of Visceral pain-originates from internal organs like the intestines and stomach.
They want to treat my abdominal pain with a TENS unit. However a TENS unit helps with tissue and muscle pain not Visceral pain.
TENS unit is designed for skin-level and musculoskeletal pain not deep internal organs pain.
My next request is for my doctors to refer me to a pain doctor to see about getting a nerve blocks. My abdominal pain could also be caused by pinch nerves/bulging disc of the spine. So I also should get a Thoracic Spine MRI,to check my spine. So will be asking my doctors about that.

@tjanet i experienced everything you have and was put on JOURNAVX for pain and alternative to opioids and doesn’t cause constipation and not addictive. I had 2 nerve blocks to no avail. The medication seems to be working. I just can’t shake daily spasms and tightness around my abdomen area. I use to have 6-10 bowel movements a day which caused more pain but I just finished 6 sessions of the Emsella chair and I’m down to 1-2 bowel movements a day. I question whether it’s the new therapy or simply my body healing slowly over the course of 2 years of misery. Ultimately, I feel like I’m getting better and accepting that maybe I’ll always have IBS issues regardless of fodmaps, gallbladder removal followed by more than a million dollar work up that’s yielded no real answers… anyone have a similar experience?

@bjordan2 Glad you are feeling better. My abdominal pain is constant all the time, doesn't change with bowel movements or what I eat. My bowel movements are not urgent to go to the bathroom,when I do go to the bathroom I have diarrhea but it's not urgent. I don't have IBS. I have SBS,I had a bowel obstruction and now I only have 2ft of my small intestines but I have my large intestines. Food,movement and having bowel movements don't change my constant all the time abdominal pain and nausea. My pain is deep inside my upper abdomen organs. When I take 4 imodium a day my diarrhea is controlled but I still have constant all the time abdominal pain and nausea. I have been having abdominal pain for several years. I was taking haldol for a little over a year and that helped but it started causing side effects so my doctor took me off of it and the constant all the time abdominal pain and nausea came back.

@dboesten I had the exact thing done, and rue the day that I agreed to the removal of my ICV. I have had recurrent small bowel obstructions for 18 years due to radiation and surgery. The surgeon assured me that this last surgery in 2023 would fix my problem, as it was "wide open now". Things are worse than ever, have lost a ton of weight, gluten and lactose intolerant, and still have small bowel obstructions!