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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@sunshine29

I had 2 back-to-back colon surgeries due to an abscess from the first surgery. I now have short gut(bowel) syndrome & am getting 2 infusions/week of potassium, magnesium & fluids. Still struggling to keep my Creatine levels lower. What can I do to prevent more kidney injuries?

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Hey sunshine, I commiserate with you. I had my colon removed due to Ulcerative Colitis (or Crohn's masquerading as UC.) I had an internal pouch created - an ileoanal anastomosis or J-pouch. In an emergency surgery, the pouch was abandoned and replaced with an ileostomy. I have a hard time keeping up with fluids which has really ruined my kidneys with multiple hospitalizations due to dehydration from my "high output" ileostomy. I thought it logical to have occasional infusions of water, sugar, and salts since that combination is what my small intestine likes for absorption. When I discussed this with my doctors, almost all poo-pooed it. My PCP suggested a commercial infusion spa! I didn't push it since it became obvious that I didn't have a medical champion. Are your infusions specifically for dehydration? Creatinine spikes? I'm traveling from Dallas to Mayo Rochester in about ten days to see if I would be a candidate for a kidney transplant. -- Dave

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@sunshine29

I had 2 back-to-back colon surgeries due to an abscess from the first surgery. I now have short gut(bowel) syndrome & am getting 2 infusions/week of potassium, magnesium & fluids. Still struggling to keep my Creatine levels lower. What can I do to prevent more kidney injuries?

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I too, started with an internal pouch, or BCIR. Due to ulcerative colitis. Worked for 35 years, then had surgery to replace valve that had serious complications, & I developed an abscess, so had another emergency colon surgery that removed my internal pouch & created an ileostomy. Like you, I can no longer absorb potassium, magnesium or fluids, so I get 2 infusions/week of all 3. I have to empty my pouch hourly, but still try to do things I enjoy, like lunch or dinner w friends, movie, plays & concerts. I know where all the best bathrooms are in my KC area.

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@sunshine29

I had 2 back-to-back colon surgeries due to an abscess from the first surgery. I now have short gut(bowel) syndrome & am getting 2 infusions/week of potassium, magnesium & fluids. Still struggling to keep my Creatine levels lower. What can I do to prevent more kidney injuries?

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I have short gut syndrome. I only have 2ft. Left of my small intestines but I have my large intestines. I have IV fluids a couple times a week to help with dehydration. My dietitian suggested coconut water to get more electrolytes.
I get constipated along because of dehydration. I use to have a lot of diarrhea but that stopped.
I had 3 small bowel obstruction surgeries.
I have kidney problems also and I am scheduled to see a kidney specialist in 2 weeks.

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@tjanet

Does anyone have short gut syndrome? I have only 2ft of my small intestines left but still have my large intestines. Having problems with dehydration,diarrhea and nausea. My doctors haven't figured out a good treatment plan for me, yet.

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I have found that coconut water helps with dehydration.

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@tjanet

I have several signs of dehydration but blood results says no. What can I do to help with dehydration symptoms? I am not to drink plain water because it doesn't absorb in my body because of short gut syndrome.

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I found that coconut water helps with dehydration.

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@tjanet

I have found that coconut water helps with dehydration.

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I suffer from IBS-D and I found that coconut water just gives me more diarrhea

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@gussie

I suffer from IBS-D and I found that coconut water just gives me more diarrhea

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I don't have IBS. But my GI doctor wants to treat me for IBS when I don't have symptoms of it. My symptoms are related to short gut syndrome not IBS.

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@tjanet

I have found that coconut water helps with dehydration.

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I will try that, thanks. Been using Drip Drop oral hydration.

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In 2019 I had two small intestines surgeries now I only have about two ft. of my small intestines left I still have my large intestines. My biggest problem is with dehydration and constipation. My body doesn't absorb enough fluids and that causes constipation. I have tried electrolytes drinks but they don't seem to help much. I started drinking coconut water with a little fruit juice in it and that seems to help better than Gatorade drinks. One of my GI specialist said that my fluids need to have sodium and glucose (sugar) in them for my body to absorb enough fluids. My doctor isn't helping me much with my dehydration and constipation problems. My doctor is wanting to treat my condition as IBS which I don't have. My doctor doesn't want to treat me for my short gut syndrome. Treating me for IBS makes my short gut syndrome worse.
I am able to drink and eat most things. No high fiber foods or corn. I have a difficult time gaining weight. I am having a hard time drinking more than 20 ounces of fluids a day before I get nauseated and start vomiting.

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