Living Without a Small Intestine

In Jan 2013, I will be celebrating (yes celebrating) my 2nd year of living without a small intestine. I have a tube in my chest and "hook up" each nite. I am doing great. I am eating foods that at first I didn't think I would ever eat. (staying away from milk, cheese, sweets, spices, etc). Occasionally I will have a loose stool, but for the most part I hold my weight. I recently experienced kidney stones. Wow, that was rough. I would really like to have conversations with anyone out there that has no small intestine.

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I'm sure you'll get lots of reponses to your post, but in the meantime, I was wondering if you've visited the Oley Web site (www.oley.org). In the "Meet Patients" section and in the newsletter (under "Resources"), you'll find stories about lots of people who have short bowel syndrome (like you) and who are nourished by HPN (like you). If you'd like to talk to someone personally about short bowel syndrome or life on HPN, we can put you in touch (by phone or email) with someone in a similar situation. Just let us know.

Lisa
Oley staff
(800) 776-OLEY

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hey BG.i have about a foot and a half of each .. small and colon. and will celebrate the end of my 13th year on TPN on the 17th of dec.. so i understand what your going through... the first four years were the toughest as i had a open big fistula on the abdomen as well.. where are you living? im in washington state.... randy

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I think I have worked through my eating habits and finally got settled in. Everyone is amazed that I can still eat out with my family, which has been a blessing. I have been told that having all of your small intestine removed is rare and I was interested to see if anyone else had lost all of theirs. I am doing fine with the TPN and have no regrets.

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My 4yr son had all but 15cm of his small bowel removed alittle over a year ago. He is on 14hrs of TPN and hydration for 2hrs in the morning. He eats and drinks whatever he wants for the most part. He is however on the list for a small bowel transplant. He is doing great without his intestines and I wish we had done it sooner. We have had our issues with line infections and that is the worst part.

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It is very comforting to meet someone optimistic and happy like you. Keep it up - you can go on for many many years like this!

May I say that we are a little jealous... only an occassional loose stool? Wow, you are a really fortunate person!
My husband has about 40 cm. of small bowel, and 2/3 of this large bowel, and TPN of course, currently 6 nights a week, but can only eat very small amounts, no fiber, no fat, no lactose, and still is "loose" all the time, when a bad day for him means totally "watery". He also has stomach aches before he goes.
He takes 4 mg. Loperamide half an hour before breakfast and lunch, and occasionaly before dinner, if it's supposed to be a BIG meal; it only helps a little bit.

Do you take any medication? What kind of diet do you eat? Do you have a doctor/nurse/dietician who walked you through the process of finding out what you can eat?

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Hi, my new surgeon just finished with a bunch of testing and told me I have 8 inches of small intestine, been this way for two years now. I do 12 hours on TPN at night and then 6 hours of hydration during the day. I normally eat one meal a day around 5pm. No milk or sweets normally. I do on special occassions have a small slice of cake. I did have a small hot fudge sundae a couple of months ago and loved it. I normally sip on black coffee most of the day. Work part time doing all the office work for a very small company with very flexible hours. I consider myself a very lucky young man of 52. As long as my liver stays some what stable, this will be my norm for the rest of my years. Wishing you the best.

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Just out of curiosity - why do you need the hydration? Aren't the fluids in the TPN enough for you?
We here in Israel use a TPN formula that's 2500 ml, and that seems to be enough fluid for my husband, if we can judge by the number of times he goes to the bathroom during the night...
We were told that most of the fluid absorption happens in the colon, so maybe we don'e need hydration since my husband has most of it (except for the ascending colon that he lost in surgery)?

But other than that, the TPN really supplies all his needs, and we're very thankful that we have this lifeline. He also works part time, shorter days and only 10 days a month, which is just enough.

MGS

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I'M ON TPN 2500ML NIGHTLY, LIPIDS ADDED 2X A WEEK, AND I CAN DRINK BY MOUTH. BUT I HAVE TO DO A LITER OF FLUIDS DURING THE DAY DUE TO CHRONIC DEHYDRATION.

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I'm on TPN 3000ML 12 hours over night, Lipids once a week, and 2 liters of fluid a day for dehydration. I basically eat small meals throught out the day. I have a high output ostomy which really limits my time away from the throne room. 3 years and still hanging in there.

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I am on 4200ML 12 hours every night I eat what ever I want whenever I want I have only 60 cm of small and only half my colon no bags anymore just the feeding at night The first 2 1/2 years could not eat would have drinks but the more I drank the more I would have to empty the bag Now it just runs out the other end. But I would rather have that. I work 2 jobs it is going on 6 years in aug For everything that has happened in the last 6 years the doctor and her staff and my supply pharmacy has made a big differance in my life They are the best

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Wee! I would do the happy dance if I wasn't at school right now...but YES! I have also been looking for people like me and it's been about a year 1/2 when i lost my small bowel. I only have most of my colon and only my doudenum left of my small bowel (even though sometimes they don't count it). I EAT! I LOVE food. But I am also on a drug that slows down my digestion so I'm not living in the bathroom all day and loosing lots of hydration and feeling plain awful. I do pretty well now not having vomiting as much. Stools are the same. I laugh when my docs ask if they are any different!

I do 10 hours at night of 3000 mls and I do 1liter of hydration every other day at the same time. Sometimes when I'm not so active I can skip two days. But I'm an active thirsty girl.

Message me if you want to compare notes! I know of only one other person in the world that I've met on here that has exactly left what I do. There are a lot of similarities in what we can do.

Hope to hear from you soon!
Paula

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Thanks for sharing your experiences, Paula and goldenpony!

You eat whatever you want... that really makes me jealous. My husband is on a very limited diet - and it still comes out watery and requires to air out the house afterwards.

What drug do you use to slow down digestion? We're a year and a half on TPN, and all the dieticians we spoke to said "trial and error, no 2 people are the same..." but our trial and error gets us nowhere.

Also, my husband eats very small amounts - a slice of bread, 2 tbs. cottage cheese and a hard boiled egg and he's full... anything more than that amount will bring bathroom visit closer.

What are your tricks/secrets?

MGS

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Oups! I am 2 1/2 years out! Close to about a year out I felt like I had small monster in my stomach that was yelling "FEED ME!!!" I started to eat really large portions at that time but then would have A LOT of output all at once. Well...needless to say that after awhile I was feeling awful because all I was doing was eating and going to the bathroom (getting really bad chills from losing all that body heat from the fluid lose in my stools). So I tried just about every drug out there for diarrhea. Well nothing worked and I didn't want to take narcotics but then I was at the end of my rope so I tried Tincture of Opium (which my doc said with people like me usually have to take because it's the only thing that works and he was right) and I now feel like a normal person!!! Well as normal as you can get!

I had a bit of a learning curve when I started taking the med because it WORKED and I was still eating those large amounts and would have a lot of vomiting/diarrhea at the same time because the food/drink had no where else to go. It was awful but once I figured out the right portions to eat then I got into a routine and now I do really well. I still fall off the wagon and eat/drink too much and pay for it! There are still things I have to stay away from because they make me feel awful if I eat them. I gave up sodas because they go through you really fast meds or no meds! So if I would drink sodas and whatever I ate before them was getting pushed out of the way from the soda. So I ended up giving them up because it wasn't worth feeling awful and getting dehydrated from having all that diarrhea. Also, ice cream does that but not as bad. I just have to eat it later in the day when I know it's close to the time i need to go to the bathroom anyway!

Basically you take Tincture of Opium 4 times a day in tiny amounts. I usually have my breakfast sandwich/omelet or whatever (no more cereal because it's too liquidy) but then I can have my tea afterwards. It's still not good to drink it with a meal for people like us. Which takes getting used to. Then at lunch i will have a meal and then I will have fizzy water afterwards to get the air out of my tummy. I usually drink 2 liters of fizzy water a day. I usually go once after lunch and then 1-2 times in the late afternoon. Verses 4-5 times when I wasn't on the medication! Then I will have a small dinner (i can usually only eat a sandwich or about the size of a burger). I can usually gauge how much i can take in. you figure it out after awhile. so yes A LOT of trial and error!

I can't really drink smoothies any more because they still go through too fast. I miss them! pretty much if it's got a lot of fiber too it it's nice. but if i eat peanuts before i go to bed i end up getting sick in the morning if i eat too many because they don't break down =(

Salty things are still good. Things that will break down easily are good (like pringles). I can still eat cheese and things with butter but sometimes if things are too rich it hurts a lot =(

Since I'm on the medication I can eat more little snacky things throughout the day where as before it would have to be a lot at once. which small meals throughout the day is better. but it took awhile to get there and that was only after medication =(

they say the first two years are the best for adaptation! just keep trying different things! please feel free to ask me any questions. oh i can't EVER drink straight water. I will run right to the bath room literally in 1-2 minutes. but if it's fizzy it is a lot better. the fiz slows it down. when i first had surgery i couldn't drink it (threw up from it) now it's my magic thing!!!

good luck!

Oh...I also don't have an ostomy. So that is one less thing to deal with in my situation.

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I am a 15yr. survivor of an automobile accident. I have Short Bowel Syndrome (SBS); I had 2/3 of my large intestine and 95% of small bowel resected. I have 15cm of distal ileum, 10cm of jejunum, all of my duodenum & ileocecal valve still in tact. Up until recently, I had survived 15yrs without TPN, until neurological symptoms of vitamin E deficiency have led me to now be dependent of TPN.

Regards

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Paula,

I really appreciate your detailed answer.
My husband takes 4 mg Loperamide half an hour before breakfast and lunch, and it helps - but really not enough. He was told to stay away from fiber, lactose and fat, so he gave up all the delicious salads we make and relish, and just sits there watching us chew away... it's hard.
It's also hard when we are invited to weddings or parties, because it's fancier to serve breads with lots of fiber, fat cheeses, nuts on everything...

We'll check with the doctor about the tincture of opium - I've heard it mentioned before here on the site but can't find info about it on Israeli sites - except for some mentions of it as a supplement or alternative medicine, which weren't clear to me.

Thanks for your support! We're praying that the end of the second year will really bring some change with it.

MGS

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I am not on any meds to take before or after I eat I do take a antacid pill 2 x a day otherwise I do start to hurt bad other wise I eat a couple of meals a day and some snacks in between I also drink alot of water and mountain dew at first I couldnt drink soda but I really missed my mountain dew so I kept trying till my tummy didnt hurt when I drank it. I have never had anyone to talk to about this Other people listen but they dont really understand what its like to have to live like this everyday. I always think that this is something that I only had everyone keeps asking me do you have cancer. I feel sorry for people with cancer just like any other sickness but they always think thats what is wrong with me

so if you take this med dont you start to gain weight back I was 325 pounds when I got sick and I now weigh 145 and I started to gain some back after I started eating again they have taken most of the calories out of my tpn and stopped the lipids so I can keep my weight under what I want it to be sorry gotta cut this short I have to get ready for work I would like to talk to anyone that would like to dont know how to do that without being on a disscusion page so you would have to help me out

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Can I ask why any of you have had your small intestine removed ??

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I am asking as I have severe agressive Crohn's disease and have had resections have tried all meds with no help I am in a bad way once again and having had a good experience on TPN ( was on for 3 months 2 years ago) it was the first time in years I felt somewhat normal again so am considering asking for the removal of the rest of the small bowel and permanent TPN

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My husband had his small intestine removed in the course of surgery to remove a growth from his mesenteric cavity. The surgeouns nicked the main mesenteric artery and vein, and worked for hours to fix it, but by then the blood supply to the bowel was compromised and it simply rotted, so they had to remove all of the affected part. Still, even though the TPN supplies all he needs, he is instructed to eat, in order to keep all the other organs working - the stomach, spleen, liver, gall bladder etc. The less bowel - the less it's possible to do that, since everything will just go straight through, and all the diarhea is a real pain to manage.

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My small bowel was removed due to cancer. My colon cancer kept coming back in my pancreas where my original tumor was laying. The 1st recurrence they were able to peel the tumor off the mesenteric vein and the 2nd recurrence the tumor was surrounding the mesenteric vein and chocking off the blood supply to my bowel. They tried to save it but the vein grafts collapsed :'( so TPN for me or transplant way down the road!!! I want them to get a lot better before I rethink transplant.

Carbs are super for what we have! Forgot to mention that.

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