Does anyone have short bowel syndrome?

Posted by tj @tjanet, Jan 28, 2024

5 years ago I had a small intestines blockage and had to have all but 2 feet of my small intestines removed. I was on TPN and a feeding tube for a couple years years now I am eat food. I am able to eat most foods except raw vegetables and high fiber foods.
Over two years ago I started having constant abdominal spasms and constant nausea, doctors don't know what is causing it. The spasms feels like someone is twisting my insides and some pressure. Nausea medications don't help with the nausea.

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My MR enterography impression findings says:
Prominent dilation of the duodenum and proximal jejunum with air-fluid levels. Patulous dilation of the small bowel anastomoses in the left upper quadrant and right lower quadrant without associated bowel wall thickening or inflammation. Findings are most suggestive of sequela of prior small bowel resections with associated ileus or partial obstruction.
Prominent stool burden in the rectosigmoid colon suggests constipation.
I have short bowel syndrome, I have 2ft of my small intestines left and I have all of my large intestines. Bowel obstruction surgeries was in 2019. I still have 3-5 bowel movements a day but they are formed not diarrhea.
My doctors don't seem to be very concerned about the MR enterography results.

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I probably have a partial small bowel obstruction and doctors don't know what to do because I only have 2ft of my small intestines left. Something needs to happen so it doesn't turn into a complete obstruction.

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Profile picture for tj @tjanet

I probably have a partial small bowel obstruction and doctors don't know what to do because I only have 2ft of my small intestines left. Something needs to happen so it doesn't turn into a complete obstruction.

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@tjanet I feel for you!

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Got the results from my MR enterography and CT enterography, it says that my abdominal pain and nausea is caused by ileus. Doctors are still not treating me for ileus. According to the information about ileus, treatment is done during hospital stay . Treatment is NPO,IV fluids,pain control and possibly a NG tube. My doctors are still not wanting to treat me for my symptoms. My symptoms are getting worse.

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GI doctor is treating me for SIBO instead of ileus. Can ileus go away by being treated for SIBO? I wasn't tested for SIBO because of my Short Bowel Syndrome, but my GI doctor still wants to treat me for SIBO.

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Profile picture for tj @tjanet

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.

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@tjanet

Hello! I have 24/7 abdominal pain for years around my bellybutton. Mine stops during TENS but only while the device is on not after. My pain isn’t muscle pain either. Does TENS help with functional pain?

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TENS unit doesn't help with my constant abdominal pain. My constant abdominal pain is deep inside not muscle pain. I don't have functional pain,my pain is related to my Short Bowel Syndrome condition. TENS unit works for muscle pain but I don't think it works for pain deep inside the body.

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Tests have showed a ileus and my intestines muscles are weak. Trying to figure out how to treat my ileus and weak intestines muscles. Doctors still don't want to treat my ileus even when tests shows ileus. I have some swelling of my upper abdomen and my doctors doesn't want to look at the swelling area. Doctors want to treat me for SIBO but that doesn't treat the ileus.
I am still not being treated for my Short Bowel Syndrome condition,like it should treated and that is why my health conditions are getting worse.

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I took Xifaxan to see if my constant abdominal pain and nausea was caused by SIBO. The Xifaxan helped my nausea but I still have constant upper left abdominal pain. My GI doctor still doesn't want to treat my constant abdominal pain. My pain level is at a constant 6 out of 10 and sometimes a 10 out of a 10. I have a high pain tolerance. My constant abdominal pain even wakes me up at night, so I don't sleep very good. I don't have constipation but my GI doctor thinks I have constipation. I have 2-3 formed or semi-formed stools a day. It doesn't hurt to go to the bathroom, but I still have constant abdominal pain. Food and fluids doesn't change my abdominal pain level. No cramping, No bloating, No indigestion. Heating pad doesn't help my abdominal pain. Tried Tylenol 500mg every 6 hours but it didn't help my abdominal pain at all. I am getting frustrated with having constant abdominal pain for over 3 months and doctors don't seem to care that I am in constant pain.

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My GI doctors have no clue about my constant abdominal pain. My constant abdominal pain isn't nerve pain, it isn't muscle pain. My constant abdominal pain is deep inside my abdomen on the upper left side. Pain doesn't change with what I eat or drink. Pain doesn't change with bowel movements. Resting doesn't help my constant abdominal pain. No cramping, No pressure, No bloating, No burning, No heartburn. Walking and moving around doesn't change my constant abdominal pain. I am only getting 2-3 hours of sleep at night because of my constant abdominal pain.
My GI doctors still want to treat my constant abdominal pain as IBS, I don't have IBS symptoms. Treating my constant abdominal pain as IBS makes my Short Bowel Syndrome condition worse.

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