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Large Intestine Removal
Has anyone ever had their entire large intestine removed? Doctors are planning to remove mine, and rehook the end of the small intestine to the rectum. I suffer from colonic inertia. Whats life like without a large intestine? Will I lose a lot of weight, will I have to change my diet around? Any details would be helpful. So far I know that I'll be going to the bathroom a lot.
And for curiosity, I'm 18 -- so I'm quite young.
And for curiosity, I'm 18 -- so I'm quite young.
I'm 31yrs old lost my colon last march to ulcerative colitis. the surgery saved my life my colon was about to rupture. waking up with a bag was not cool.giving up fresh and healthy foods for a year not cool. but this april2nd I awoke without my bag due to a j-pouch.I feel alive and the bm's are not too plenty. they range from 4-8 a day.my appetite is suffering but that isnt a bad thing for me after spending years on steroids! The worst so far is the itching and burning after bm's nothing from before seems to work. but all in all the outcome seems to usually turn out soooo much better than living with a sick colon, being afraid to leave the house,memorizing what stores have bathrooms and where....I went to the Christ Hospital in cincinnati ohio, I live in Buffalo but my doctors were letting me die on oxycontin/oxycodone and steroids.So question docs cinci and cleveland are known for colon surgery.good luck to all and congrats to all who like me have gotten through this mess!
I had 3 lots of surgery to have my large intestine removed and then attached up to my rectum. My condition was diagnosed as ulcerative colitus and the surgery was supposed cure me of the disease. I've had continual problems with frequent bowel movements since. I go at least 5 times a day and twice at night (sometimes more). I've now been diagnosed with Chrones and have problems with Fissures and Fistulas. I've had 4 small drains (seatons) inserted in the fitulas which has been extremely painfull for me. I recently had them removed and hope that the fistula will heal. I think each experience is different and I don't think you can compare your experiences with anyone else.
For me, avoiding tomotos and acidic food is a must. Anything rich or spicy is also a no no. Not worth the pain. No salad apart from iceburg lettuce. Most veges are ok if they are well cooked. Stir fry veges are another story - I can't touch these. Alchohol is terrible and I suffer for at least a week if I have more than a couple of glasses of any alcholic drink. I take immodium at night but still have at least two bm's a night.
My situation is an exception according to statistics. I've got a very supporting partner which has helped.
I hope that anyone who has the surgery recovers well and I wish you the very best.
For me, avoiding tomotos and acidic food is a must. Anything rich or spicy is also a no no. Not worth the pain. No salad apart from iceburg lettuce. Most veges are ok if they are well cooked. Stir fry veges are another story - I can't touch these. Alchohol is terrible and I suffer for at least a week if I have more than a couple of glasses of any alcholic drink. I take immodium at night but still have at least two bm's a night.
My situation is an exception according to statistics. I've got a very supporting partner which has helped.
I hope that anyone who has the surgery recovers well and I wish you the very best.
Wow!!!
I've had a blast reading all these posts. I had the illeorectal pull through (don't know if they're still calling it that these days), 25 yrs ago (one week after graduating from high school), when it was brand new. I was the 84th person to have the surgery, & only the 4 person to have it for my condition (heirditary colon cancer: multiple familial palaposis, don't remember the exact spelling-I'm a terrible speller). In all these years I never once thought to check the internet for support groups like this. At the time I had it done, the surgery was only being performed at a couple of hospitals in the United States (I had mind done at UCLA by Dr. Founkalsrud-- one of the key doctors to develop this procedure). It's been soo fun, reading everyone's experiences, I keep seeing myself in them, like always knowing where the bathrooms are at places you go to. And the going 6-8 times a day. I over the years, to help people understand my inability to "hold it", I've decribed it to them like this: what your like when you have diarrea is what I'm like on a normal day, so you can imagine how miserable I am when I have diarrea. It's been such a heartwarming, and humorious experience reading all these posts, b/c there wasn't one that I couldn't identify with. Annywayyys, I don't know if anyone is still reading these posts, as the topic was started quite some time ago, but I had to take a moment & briefly share my background & tell everyone how much I've enjoyed their honest responses. I've know for 25 yrs now that I'm not alone in coping w/o a large intestine, but to actually read other people experiences/stories makes me feel a little less odd & alone in my often strange and abnormal behavior like eating the wrong food, (can't do spice-- ohhh the bum burn I get, ouch), & having to run back and forth from the bathroom 5-6 times over the course of an hour. On average I go through a row of toliet paper a day-- around our house we buy toliet paper from Costco (and there's only 2 of us). My toliet paper use has become a long standing joke w/ close family and friends over the years. I could ramble on and on and on, finally finding a place where people are like me & understand, but I won't as I"d just be repeating what so many people have already shared. There is life w/o a large intestine, it's not perfect, but w/ a few monifications & lots of patience anything is possible-- I went to Cody Wy, on a cattle drive-- no bathroom during the day, except the great outdoors and whatever local bushes you could find, and only outhouses at night.
I've had a blast reading all these posts. I had the illeorectal pull through (don't know if they're still calling it that these days), 25 yrs ago (one week after graduating from high school), when it was brand new. I was the 84th person to have the surgery, & only the 4 person to have it for my condition (heirditary colon cancer: multiple familial palaposis, don't remember the exact spelling-I'm a terrible speller). In all these years I never once thought to check the internet for support groups like this. At the time I had it done, the surgery was only being performed at a couple of hospitals in the United States (I had mind done at UCLA by Dr. Founkalsrud-- one of the key doctors to develop this procedure). It's been soo fun, reading everyone's experiences, I keep seeing myself in them, like always knowing where the bathrooms are at places you go to. And the going 6-8 times a day. I over the years, to help people understand my inability to "hold it", I've decribed it to them like this: what your like when you have diarrea is what I'm like on a normal day, so you can imagine how miserable I am when I have diarrea. It's been such a heartwarming, and humorious experience reading all these posts, b/c there wasn't one that I couldn't identify with. Annywayyys, I don't know if anyone is still reading these posts, as the topic was started quite some time ago, but I had to take a moment & briefly share my background & tell everyone how much I've enjoyed their honest responses. I've know for 25 yrs now that I'm not alone in coping w/o a large intestine, but to actually read other people experiences/stories makes me feel a little less odd & alone in my often strange and abnormal behavior like eating the wrong food, (can't do spice-- ohhh the bum burn I get, ouch), & having to run back and forth from the bathroom 5-6 times over the course of an hour. On average I go through a row of toliet paper a day-- around our house we buy toliet paper from Costco (and there's only 2 of us). My toliet paper use has become a long standing joke w/ close family and friends over the years. I could ramble on and on and on, finally finding a place where people are like me & understand, but I won't as I"d just be repeating what so many people have already shared. There is life w/o a large intestine, it's not perfect, but w/ a few monifications & lots of patience anything is possible-- I went to Cody Wy, on a cattle drive-- no bathroom during the day, except the great outdoors and whatever local bushes you could find, and only outhouses at night.
Hi my name is Hector im 39 yrs old and I have been living with ulcertive colitis about 3 yrs, even though i think ive had it for longer than that. Ive always had some abdominal pain all my life but ive always dismissed it as an urinary track infection and drank some cranberry juice until the pain went away. About 3 yrs ago i really started to get strong symptons of U.C (diarhea, frequent trips to the bathroom,bloody stool, lots of pain after eating a meal) thats when i got diagnosed with ulceritive colitis. For me nothing worked i went thruo alot of different oral medications Asocol,6 mercaptorpurine (aka 6-mp) and a few more. My condition never really got better with oral medications exept when they put on steroids but you cant stay on those because of the extreme side. Now im on Remicade which i get through an IV infusion every 6 weeks it takes about 3 to 4 hrs but it seems to be working but im also worried about the side effects of it. It seems that everything good comes with some kind of risk. Righ now im frustrated, im tired of the symptons of i get when the medicine is fading and its almost time for another infuision. So ive been thinking of having the surgery myself to get rid of it once and for all (the pain,bloating, blood,gas,). I allready use the bathroom quite often so i figure at least ill get rid of most of my symptons if i get the surgery. I also would like to ask everyone with U.C or if on Remicade if they have developed sensitivity to heat or the sun. During the summer month my feet swell, (mostly below my knees) red circular dots pop out with joint swelling and of course lots of pain Ive been to lots of doctors nobody could tell me what it is Im curious if this could also be a side effect of U.C or Remicade i hate this because i LOVE the summer i love fishing camping bbq anything that has to do with summer so this is my biggest reason for for having the surgery. Ive spend most of my summer days now lying in bed with my feet raised with the AC on trying to get the swelling down so i could maybee spend some time outside before my feet swell up again. Sorry for typing so much but this is really the first time i really talk about it well type to anyone. Well let me stop here, thanks for everybodys time hope to here from u guys soon..
Hector from New York 6-5-2010
Hector from New York 6-5-2010
Hi all
I had my Large intestine taken out in march 2010 as i suffer from Familial Adenomatous Polyposis (FAP), is a faulty gene, which causes cancer in the bowel before im forty so the operation for me is a life safer as im only 27. I Had my large bowel taken out and a J pouch formed out of some of my lower small bowel and my operation took 7 hours which is the time limit for a reversal and a pouch to be made, with out the bag, this would only have taken 5 1/2 hours or less if i did not respond well to the anethetic, i would have been given a stoma ( bag). I did recover very well from the surgery, i did have a fizzy drink diluted with water but i got colic then i had to have an NG tube over night and that took the gassand that away i did have a norrmal bowel movement it was watery at the time. since then i have had 3 little hick ups on the way,.. one day after my surgery as i was sensitive to the morphone and i had sever septicimia a month later and a small infection but these infections were to do with a stitch my body refused to allow to disolve.. im lucky as i have a nurse as my boyfriend. i did feel a bit down when i got the infections but i was given antibiotics and was told its only a small step backwards.. But regarding food my surgeon ( im very proud of him and his work ) warned me against fizzy drinks, nuts.. i can eat almost anything,,.. longer its in small quantities, to not over do my bowel.. i can eat spicey foods too and drink normally.. i have drank a little fizzy drinks but not alot as im not very fond of them anymore., Regarding BM's.. now i have regualr bms, but they dont ruin my life.. i have about 3 to 4 ofthem a day.. or a little more... atthe beginning i would wake up at night but now i wake up about 6am in the morning.. i do take meds.. i take Loperamide Hydrochloride ( which helps to harden and take the moisture out) and i also take Buscopan ( which helps with the spassums) i take paracetomal for pain relife.. I am desting to go back to work in september or there
I had my Large intestine taken out in march 2010 as i suffer from Familial Adenomatous Polyposis (FAP), is a faulty gene, which causes cancer in the bowel before im forty so the operation for me is a life safer as im only 27. I Had my large bowel taken out and a J pouch formed out of some of my lower small bowel and my operation took 7 hours which is the time limit for a reversal and a pouch to be made, with out the bag, this would only have taken 5 1/2 hours or less if i did not respond well to the anethetic, i would have been given a stoma ( bag). I did recover very well from the surgery, i did have a fizzy drink diluted with water but i got colic then i had to have an NG tube over night and that took the gassand that away i did have a norrmal bowel movement it was watery at the time. since then i have had 3 little hick ups on the way,.. one day after my surgery as i was sensitive to the morphone and i had sever septicimia a month later and a small infection but these infections were to do with a stitch my body refused to allow to disolve.. im lucky as i have a nurse as my boyfriend. i did feel a bit down when i got the infections but i was given antibiotics and was told its only a small step backwards.. But regarding food my surgeon ( im very proud of him and his work ) warned me against fizzy drinks, nuts.. i can eat almost anything,,.. longer its in small quantities, to not over do my bowel.. i can eat spicey foods too and drink normally.. i have drank a little fizzy drinks but not alot as im not very fond of them anymore., Regarding BM's.. now i have regualr bms, but they dont ruin my life.. i have about 3 to 4 ofthem a day.. or a little more... atthe beginning i would wake up at night but now i wake up about 6am in the morning.. i do take meds.. i take Loperamide Hydrochloride ( which helps to harden and take the moisture out) and i also take Buscopan ( which helps with the spassums) i take paracetomal for pain relife.. I am desting to go back to work in september or there
My son was born with Hirchsprung's and they removed his whole large intestine. He has had nothing but problems.
If he catches a cold he ends up in the ICU with Organs shutting down.
This happens at least once a year.
He is not growing also. He wears what a two year old would wear in clothes and he is approaching 6 years old now.
He had a pull down surgery that failed the first time and had to do it all over again at a later date.
He gets bactira in his small intestine and makes him very sick and lands in the hospital.
I am just wondering what tomorrow will bring??
I tried to get him on SSI and he was refused because they say he is not marked or have sever limitations.
Has anyone else had trouble with getting SSI for their child because of this? And what did you do?
This poor kid has it rough and he can't even get the help that I believe he should get.
Crazy.
If he catches a cold he ends up in the ICU with Organs shutting down.
This happens at least once a year.
He is not growing also. He wears what a two year old would wear in clothes and he is approaching 6 years old now.
He had a pull down surgery that failed the first time and had to do it all over again at a later date.
He gets bactira in his small intestine and makes him very sick and lands in the hospital.
I am just wondering what tomorrow will bring??
I tried to get him on SSI and he was refused because they say he is not marked or have sever limitations.
Has anyone else had trouble with getting SSI for their child because of this? And what did you do?
This poor kid has it rough and he can't even get the help that I believe he should get.
Crazy.
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