Does anyone have short bowel syndrome?

Posted by tjanet @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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Profile picture for tjanet @tjanet

I have 2ft of my small intestines left and I have all of my large intestines.I have symptoms of dehydration and electrolyte imbalance. Some of my kidney blood results are abnormal because of it according to my kidney doctor. My GI doctor doesn't think it's from dehydration and electrolyte imbalance so he wants to continue to treat my Short gut syndrome symptoms as IBS, my symptoms are not related to IBS. What is a good way to tell my GI doctor that it's not helping me by treating me for IBS?

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I have only 2ft. of my small intestines but I have all of my large intestines. I am able to eat food low fiber diet, high calorie, high protein diet. Limited plain water.
My symptoms are not related to food.
I am having abdominal pain, some nausea, a lot of diarrhea. My GI doctor isn't treating me for Short gut syndrome. So I am looking for ways to treat my symptoms.

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Profile picture for tjanet @tjanet

I have only 2ft. of my small intestines but I have all of my large intestines. I am able to eat food low fiber diet, high calorie, high protein diet. Limited plain water.
My symptoms are not related to food.
I am having abdominal pain, some nausea, a lot of diarrhea. My GI doctor isn't treating me for Short gut syndrome. So I am looking for ways to treat my symptoms.

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@tjanet if your gastroenterologist has diagnosed your short gut syndrome why isn’t he treating it?

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Profile picture for rashida @rashida

@tjanet if your gastroenterologist has diagnosed your short gut syndrome why isn’t he treating it?

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My GI doctor doesn't understand short gut syndrome very much. My GI doctor has been trying to treat me for IBS instead of short gut syndrome. My symptoms are not IBS symptoms they are short gut syndrome symptoms. The symptoms can look like symptoms of IBS but they are not IBS symptoms.

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Profile picture for tjanet @tjanet

I have only 2ft. of my small intestines but I have all of my large intestines. I am able to eat food low fiber diet, high calorie, high protein diet. Limited plain water.
My symptoms are not related to food.
I am having abdominal pain, some nausea, a lot of diarrhea. My GI doctor isn't treating me for Short gut syndrome. So I am looking for ways to treat my symptoms.

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Hi, @tjanet - just wanted to clarify and make sure I understand what illness you are talking about when you say short gut syndrome. Is this the same as what you are mentioning?

- Short bowel syndrome
https://www.mayoclinic.org/diseases-conditions/short-bowel-syndrome/symptoms-causes/syc-20355091

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Profile picture for tjanet @tjanet

I have only 2ft. of my small intestines but I have all of my large intestines. I am able to eat food low fiber diet, high calorie, high protein diet. Limited plain water.
My symptoms are not related to food.
I am having abdominal pain, some nausea, a lot of diarrhea. My GI doctor isn't treating me for Short gut syndrome. So I am looking for ways to treat my symptoms.

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Short gut & short bowel are the same thing: Surgically shortened intestines to remove damaged or diseased portions. Results can include poor nutritional absorption, shorter "transit time," meaning contents move through too fast & often as diarrhea, sometimes watery, and other results.

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Profile picture for tjanet @tjanet

I have only 2ft. of my small intestines but I have all of my large intestines. I am able to eat food low fiber diet, high calorie, high protein diet. Limited plain water.
My symptoms are not related to food.
I am having abdominal pain, some nausea, a lot of diarrhea. My GI doctor isn't treating me for Short gut syndrome. So I am looking for ways to treat my symptoms.

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I had a total colectomy & have stoma. Have to empty about once an hour. Just started Creon a few months ago & it is helping to slow it down.

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Profile picture for tjanet @tjanet

I have tried fiber foods but they don't help. Because of my health conditions I am to be on a low fiber diet. My GI doctor wants to continue to try my short gut syndrome as IBS,but I don't have IBS. Treating my short gut syndrome as IBS makes things worse not better.

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Could it be BAM ( bile acid malabsobtion )

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I have SBS from a cecal volvulous, post OP 4 years now. I make my own oral rehydration solution, similar to Pedialyte, which is what my doctors recommended I drink for life. It is 2 Tbsp sugar, 3/4 tsp salt dissolved in 32 ounces of water. I add 1 packet of True Lemon to improve the taste. Hope this helps!

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Profile picture for jlstjohn @jlstjohn

I have SBS from a cecal volvulous, post OP 4 years now. I make my own oral rehydration solution, similar to Pedialyte, which is what my doctors recommended I drink for life. It is 2 Tbsp sugar, 3/4 tsp salt dissolved in 32 ounces of water. I add 1 packet of True Lemon to improve the taste. Hope this helps!

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I have short bowel syndrome when 4 years ago they had to remove all of my large colon & have outside stoma bag. I have to empty about every hour, so know where bathrooms are everywhere I go. Taking Creon now, which has helped slow things a little. Can’t eat many vegetables or fruit for fear of blockage. I get infusions of potassium, magnesium & saline twice a week since I can’t absorb my electrolytes very well. Still go to lunch w friends, plays & concerts. Just have to know where bathrooms are.

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Our situation is quite different, then. I am missing almost 5 ft. of my ilium and a small portion of my ascending colon. I can see why you're having such issues with your anatomy. Same for me, bathroom time can be extensive before I feel better and timing is everything, so try to time things right so I can be h ok me when need be!

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