There must be somebody out there who knows something about the makeup of the bowels. So I've got an Ileostomy, lost all my colon, so between the illium and the colon they make up 100%. Now when the complete colon is removed what percentage of the bowel are we left with??? And also I thought I remembered reading that after losing the colon part of the ilium takes on a bit of what the colon used to do, anybody?? I know, a long day, thanks in advance, Ed
gutenberg
nogutz
I too have an ileostomy. So the first operation, they removed my large bowel, the second and third time they said they took out 6-8 feet each time of small intestine. Then I read a thread where I think it was Snowwhite saying she too has very little left. So how long would the small intestine be too! And Ed, I did see a thread where someone was talking about the small intestine taking over or adjusting for the absence of the colon.
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Primeboy
All I know about anatomy, Ed, is that the toe bone is connected to the foot bone and so on and so on. Your question is good and I think all of us, myself included, would be better off if we made the effort to educate ourselves on how our body actually works. Didn't some doctor once say, "An educated patient is our best customer?"
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LMS67
According to Wikipedia, we have approximately 19 feet of small intestine and 5 feet of large intestine, depending on your size and age. The large intestine reabsorbs the water from your stool and helps to form it into a more solid bowel movement. I too have an ileostomy and have had all of my large intestine and part of the small intestine removed. Most people with an ileostomy have very watery stool. You know the way to thicken it up, bananas, etc. That is because it slows down the process and your body can reabsorb some of the water through the small intestine. There are 3 parts of the small intestine: duodenum, jejunum, and the ileum. The large intestine has the cecum, ascending colon, the transverse colon, and the descending sigmoid colon, and then of course the rectum and anus. The descriptions on the Wikipedia site are very good and tell you which part of the intestines does what. Check it out - I felt like I was back in anatomy class.
Take care,
Lisa
Take care,
Lisa
three
This video unfortunately assumes a pre-existing knowledge of anatomical terms as it fires big words at the viewer:
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
Immarsh
Hey Lisa,
Good research, great post in answer to Ed's question. For those of us with UC, the disease usually restricts itself to the "large" - meaning thick - intestine, and can persist in the sigmoid and rectum. The first attempt surgeons do is to leave a "healthy" rectum for a possible hook up. If that's not possible, the entire large intestine - ascending, transverse, and descending colon as well as the rectum - is removed. That's what I had done more than 40 years ago.
People with a colostomy have the opening made into the "colon" or large intestine. Their stoma is much bigger, and they may have a more formed bowel movement since more water is absorbed in the large intestine that's left intact. But as your "research" indicated, the end of the "small" (or thinner) longer intestine, the ileum, can also begin to absorb more of the fluids passing through the digestive tract.
People who have Crohn's can have inflammation in all parts of the digestive tract, from the gullet to the anus. That condition is more difficult to isolate. I had UC and my ex-husband had Crohn's. He had lost a lot of small intestine, and he dehydrated much faster than I did. With Crohn's, they can remove the colon/large intestine, and even part of the small intestine, but the lesions can develop again in a completely different area, requiring even more surgery.
It really is important for us to know how our own anatomy has been altered, if only to be able to share that information with new doctors. Thanks for the question and for the post. I hope this adds to your info.
Good research, great post in answer to Ed's question. For those of us with UC, the disease usually restricts itself to the "large" - meaning thick - intestine, and can persist in the sigmoid and rectum. The first attempt surgeons do is to leave a "healthy" rectum for a possible hook up. If that's not possible, the entire large intestine - ascending, transverse, and descending colon as well as the rectum - is removed. That's what I had done more than 40 years ago.
People with a colostomy have the opening made into the "colon" or large intestine. Their stoma is much bigger, and they may have a more formed bowel movement since more water is absorbed in the large intestine that's left intact. But as your "research" indicated, the end of the "small" (or thinner) longer intestine, the ileum, can also begin to absorb more of the fluids passing through the digestive tract.
People who have Crohn's can have inflammation in all parts of the digestive tract, from the gullet to the anus. That condition is more difficult to isolate. I had UC and my ex-husband had Crohn's. He had lost a lot of small intestine, and he dehydrated much faster than I did. With Crohn's, they can remove the colon/large intestine, and even part of the small intestine, but the lesions can develop again in a completely different area, requiring even more surgery.
It really is important for us to know how our own anatomy has been altered, if only to be able to share that information with new doctors. Thanks for the question and for the post. I hope this adds to your info.
Past Member
I certainly am not educated enough to know the workings of the digestive system.
So let me just pass on my experience and someone can maybe explain what happens to me.
I had my colostomy in '08. One year later, I had the reversal.
However, while having the bag, I never had a blockage like some poor souls. I was lucky. It really was not so bad except for the inconvenience. I was tickled to have the reversal though. My first bowel movement was like a soft paste (ya'll know what I mean), and it stayed that way until about two years. Although occasionally it was like diarrhea (can't spell it). Most recently, after two years, it has begun to "solid up". It was not to the stage of being uncomfortable, and I rather enjoyed it as I thought I had finally begun to return to normal.
About one month ago, I became constipated, then impacted. I had severe cramps and bouts of sitting on the toilet for twenty minutes or so in agony, waiting for the pain to subside. Then within the hour, the whole process would begin again. Finally, I got a stool softener and some prune juice. It was not working, so I took the bull by the horns and grabbed the old Vaseline jar.
Without going into detail, I kinda primed the intestine. After several times over a two-day period, it all came together, or rather out. Like no relief I ever felt before. I think I now know how pregnant women feel when the time comes. Now I take a stool softener every morning and drink two glasses of water every morning. Also, walk around outside for twenty minutes or so. My stool is now solid but chunky. I am wondering if there is going to be another serious change down the road and what will it be.
gutenberg
To all who contributed to my post I am truly grateful, and your generosity lets me feel like I can continue a bit further so I ask that you bear with me. First, Noguts, after all you lost can you take some control of what you have left, Say, with a banana or whatever, I'm really clueless here as my ileostomy happened overnight, literally and figuratively.
Back to part two of my question, assuming we agree that the ilium and the colon make up the bowels, what grabs me is this: the ilium is (much?) smaller than the colon in circumference and as the colon compacts all ready for discharge; therefore one would think that five feet of colon would be nearly the equivalent of fifteen feet of ilium, give or take? So now, like Noguts, My apologies Noguts, we are left with how much ilium to operate on; and how little can one get away with and still survive?
Please bear with me here as all my surgeries took place within a five to six week period and I was too clueless to even ask a sensible question let alone understand the answer and as the first surgery set in motion the next three I doubt anybody was going to tell me I was in this condition because one of their colleagues screwed up at number one. Once again, I thank you all for your understanding and patience, (patient), Ed
Back to part two of my question, assuming we agree that the ilium and the colon make up the bowels, what grabs me is this: the ilium is (much?) smaller than the colon in circumference and as the colon compacts all ready for discharge; therefore one would think that five feet of colon would be nearly the equivalent of fifteen feet of ilium, give or take? So now, like Noguts, My apologies Noguts, we are left with how much ilium to operate on; and how little can one get away with and still survive?
Please bear with me here as all my surgeries took place within a five to six week period and I was too clueless to even ask a sensible question let alone understand the answer and as the first surgery set in motion the next three I doubt anybody was going to tell me I was in this condition because one of their colleagues screwed up at number one. Once again, I thank you all for your understanding and patience, (patient), Ed
Past Member
Ed,
You sound really concerned about this. Has something happened to scare you?
All I can add is that I have found that there is constant change and I never know quite what to expect. That is kinda scary. So far it has not been too bad, but it is always on my mind.
Is that what you are feeling?
gutenberg
That's just part of it Jack. Recent events made me realize a lot that has happened to me that came from out of nowhere and I had to start from scratch to try and put things together, some of the things I got out of doctors was due to a line of bullshit I threw at them and they would give up a little information. Were it not for people on this forum giving me clues to even begin to ask questions that I know would not have been volunteered by a lot of doctors. I mean in the space of five weeks I went through three operations and had never had any bowel problems previously. Last Sunday my younger brother died of cancer, we were both 69 for a while, I'll be 70 in July. But here again when my brother had surgery for colon cancer that night the doctors told his family everything went great. next day he looked like he had filled up with air, lungs and intestines all infected because of a screwup in the antibiotics, so two more operations and two months later he seemed to be ok and he was for a few years and now he's gone. Kind of put me on guard after a few close calls lately and decided to look into things to eliminate others. Take care, Ed
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Past Member
Ed,
So sorry about your brother. You must have been really close, being so close in age.
I know how difficult it is to get a straight answer from a doctor. I guess that they figure we don't know what they are talking about so why bother explaining anything to us. There is a website, WEB MED, that I have used before and it is very informative. You can even ask a doctor a question. It is not real rapid in response, about like some other forums. But it is a medical forum.
I know what you mean about the screwups. I went to the emergency room and was diagnosed with "congestive heart failure." They began injecting me in the abdomen with Luvenox, not sure about the spelling, a drug that dissolves clots. In the process, they punctured my colon 8 times.
Thus my reason for a colostomy, cute huh?
Past Member
By the way, Ed, why were you in the hospital in the first place? Did you go through the emergency room? Three operations? One was a colostomy, what were the other two?
gutenberg
Had such a good day Jack, decided to answer your question with Part One:
Ok Jack, here is my two finger synopsis of what happened.
On May 22, 2002 I was at work and took a really bad pain in the chest, borrowed some antacid tabs from a co-worker and went into the darkroom and sat on a chair holding my head and when I felt the sweat hitting my shoes I figured it was time to do something so I went home and as soon as my wife seen me it was into the car and up to the hospital. By this time I'm getting the idea that something is really wrong cause all my family is there in the emergency room with me and I asked the doctor if I had had a heart attack, he said, "yes, you are having one". Ok that was clear enough even for a twit like me. So, out comes this needle which is an IV and being shot into my arm and as this is happening I watched my brother give the doctor an elbow and pointed at the monitor, at which point the doctor said whoa, whoa, stop. Of course I had to look at the monitor and damn near had a heart attack, what am I saying here, hell with those numbers I should have been dead but in a few minutes the numbers started to climb back up, another shot, back down, until finally the numbers evened out enough and the EKG looked like I was going to make it and this is when the shit started to hit the fan. The doctor asked me if I ever had an aneurysm and I said yes but I could only recall one word and it sounded like fusiforth to me. So, I tell him to call my doctor and find out, he leaves and returns a few minutes later and said I had no aneurysm, at which point my brother says to the doc, "he's got an effing aneurysm'' and the doc asked how he knew so he said ''he just told you he did, so he has one. Now this poor doc said I'll see if I can find someone to take him over to the CAT scan lab but these boys were telling the doc to lead the way and we're flying down the halls and the poor doc running behind trying to keep up. We land at the lab and the boys grabbed me and almost threw me on the table while the technician stood there and looked at what was happening. Christ knows what he was thinking. Anyway, CAT scan done and back to emergency to wait out the report, of course here come de priest, another anointing for Ed, we're now on the budget plan. Finally, back came the report, and the boys asked well?? and the doc says 6.5 cm and a chorus of "holy f#%K. We all knew what that meant but what we didn't know was after a heart attack you have to wait a year before they can operate and repair the sucker. So I see the specialist and he tells me if this thing blows at home I have a 25% chance of making it, but, in the city I would have a 75% chance, whoopeedefuckingdo, and I have to wait a year, great. Anyway the next January, 03, I get the call to the city for this surgery and as far as I know everything went well, except I had another heart attack in the recovery room afterwards and thought that was the end of it. ha, no that was the beginning of all the shit I went through afterwards. Apparently during this operation the blood supply was cut off to my intestines for too long but I didn't know any of this until five weeks later, and here I was thinking everything was all fine and dandy. so one Saturday night I went to bed around midnight actually feeling pretty damn good but within three hours I got violently ill and my wife and daughter somehow got me to the hospital where the emergency docs said I had to get to the city real quick, except the fog, yeah the real stuff, and the helicopter couldn't take off so it was into the ambulance for a 150 mile trip, of course I know nothing of this as I say I was really ill, I guess. Now the fun begins, I'm all doped to hell and back and I remember having another CAT scan or an MRI, something, only while I'm in this machine I know those two fuckers are out to kill me and that was a fact, for me, anyway. So with the scan done they told me not to move as they wanted to do something else, of course, they were going to kill me. One of them said not to move because I had a catheter in so I ripped it out and the last thing I remember was seeing the blood on the front of the machine and these guys yelling for security and being held down long enough to put me back to lala land. That's the last I remember until I woke up a week later but here's what happened in the meantime. I was haul arsed into surgery and got that fabulous groin to thorax cut
that's all the rage now with all those shiny staples and this genius surgeon who couldn't find anything wrong so just clip, snip, and here we are all ready for a new adventure with a new surgeon. So out with the old crap and open up a new can of worms, but apparently this surgeon knew what the hell he was doing cause when I asked him what he had done to find the problem he said he palpitated the colon and found it was dead from the inside, so snip, snip, goodbye colon and here come the ilium to the fore, to take over its new duties and for a week I was put to sleep to let the new asshole with the bag on its head learn its new role, meanwhile, remember those pricks trying to kill me well when I woke up on Easter Sunday, oh yeah, they were there, but so were all my family so I was safe for a while. THEN, one of my brothers was alone with me and broke the news, and when he said "Ed we had to let them do a colostomy on you'', and I remember screaming at him "what the hell did you let them do that for" and him answering, actually yelling, what the F #@%
were we supposed to do let you die? OK, he had me there, but still lurking around in the ICU was one particular nurse who was in on this lets kill Ed bit but there was also another nurse who was like my guardian Angel, and I mean that so sincerely, as she knew I was having these paranoid spells and did so much to console me and help me through this mess i was in. So, fast forward about ten days, what we all go through learning how to look after ourselves, and we didn't have a colostomy but an ileostomy, shit like that, remember?
Now you would think, ok, you got through all this shit now all we have to do is settle down and let the old bod heal on its own good time. WRONG, we are now introduced to the amazing world of blockages, or how to increase your vocabulary without even trying, that happens when you start vomiting up what I believe was the same stuff going into my pouch with such mind numbing pain that its impossible to describe and after a couple of years you no longer fear death, just that pain. Finally on one of my in house vacations barfing up my guts one of the local surgeons said to me one day, "Ed, i can fix this for you, but it means one more surgery", and bet your ass, I said "go for it doc", and go for it he did and my faith in mankind was restored. I have never had a blockage since and every time I read of someone who is having them I have the greatest empathy for them and wish they were able to have the good fortune I received from this man. Today I only wish I could find an orthopaedic surgeon that I could trust as before, during and after all this crap I went through it was always my spinal problems that has caused me the most agony, today has been one of the best Fathers Days I've had in years, made me really " long winded two Fingers".
Ok Jack, here is my two finger synopsis of what happened.
On May 22, 2002 I was at work and took a really bad pain in the chest, borrowed some antacid tabs from a co-worker and went into the darkroom and sat on a chair holding my head and when I felt the sweat hitting my shoes I figured it was time to do something so I went home and as soon as my wife seen me it was into the car and up to the hospital. By this time I'm getting the idea that something is really wrong cause all my family is there in the emergency room with me and I asked the doctor if I had had a heart attack, he said, "yes, you are having one". Ok that was clear enough even for a twit like me. So, out comes this needle which is an IV and being shot into my arm and as this is happening I watched my brother give the doctor an elbow and pointed at the monitor, at which point the doctor said whoa, whoa, stop. Of course I had to look at the monitor and damn near had a heart attack, what am I saying here, hell with those numbers I should have been dead but in a few minutes the numbers started to climb back up, another shot, back down, until finally the numbers evened out enough and the EKG looked like I was going to make it and this is when the shit started to hit the fan. The doctor asked me if I ever had an aneurysm and I said yes but I could only recall one word and it sounded like fusiforth to me. So, I tell him to call my doctor and find out, he leaves and returns a few minutes later and said I had no aneurysm, at which point my brother says to the doc, "he's got an effing aneurysm'' and the doc asked how he knew so he said ''he just told you he did, so he has one. Now this poor doc said I'll see if I can find someone to take him over to the CAT scan lab but these boys were telling the doc to lead the way and we're flying down the halls and the poor doc running behind trying to keep up. We land at the lab and the boys grabbed me and almost threw me on the table while the technician stood there and looked at what was happening. Christ knows what he was thinking. Anyway, CAT scan done and back to emergency to wait out the report, of course here come de priest, another anointing for Ed, we're now on the budget plan. Finally, back came the report, and the boys asked well?? and the doc says 6.5 cm and a chorus of "holy f#%K. We all knew what that meant but what we didn't know was after a heart attack you have to wait a year before they can operate and repair the sucker. So I see the specialist and he tells me if this thing blows at home I have a 25% chance of making it, but, in the city I would have a 75% chance, whoopeedefuckingdo, and I have to wait a year, great. Anyway the next January, 03, I get the call to the city for this surgery and as far as I know everything went well, except I had another heart attack in the recovery room afterwards and thought that was the end of it. ha, no that was the beginning of all the shit I went through afterwards. Apparently during this operation the blood supply was cut off to my intestines for too long but I didn't know any of this until five weeks later, and here I was thinking everything was all fine and dandy. so one Saturday night I went to bed around midnight actually feeling pretty damn good but within three hours I got violently ill and my wife and daughter somehow got me to the hospital where the emergency docs said I had to get to the city real quick, except the fog, yeah the real stuff, and the helicopter couldn't take off so it was into the ambulance for a 150 mile trip, of course I know nothing of this as I say I was really ill, I guess. Now the fun begins, I'm all doped to hell and back and I remember having another CAT scan or an MRI, something, only while I'm in this machine I know those two fuckers are out to kill me and that was a fact, for me, anyway. So with the scan done they told me not to move as they wanted to do something else, of course, they were going to kill me. One of them said not to move because I had a catheter in so I ripped it out and the last thing I remember was seeing the blood on the front of the machine and these guys yelling for security and being held down long enough to put me back to lala land. That's the last I remember until I woke up a week later but here's what happened in the meantime. I was haul arsed into surgery and got that fabulous groin to thorax cut
that's all the rage now with all those shiny staples and this genius surgeon who couldn't find anything wrong so just clip, snip, and here we are all ready for a new adventure with a new surgeon. So out with the old crap and open up a new can of worms, but apparently this surgeon knew what the hell he was doing cause when I asked him what he had done to find the problem he said he palpitated the colon and found it was dead from the inside, so snip, snip, goodbye colon and here come the ilium to the fore, to take over its new duties and for a week I was put to sleep to let the new asshole with the bag on its head learn its new role, meanwhile, remember those pricks trying to kill me well when I woke up on Easter Sunday, oh yeah, they were there, but so were all my family so I was safe for a while. THEN, one of my brothers was alone with me and broke the news, and when he said "Ed we had to let them do a colostomy on you'', and I remember screaming at him "what the hell did you let them do that for" and him answering, actually yelling, what the F #@%
were we supposed to do let you die? OK, he had me there, but still lurking around in the ICU was one particular nurse who was in on this lets kill Ed bit but there was also another nurse who was like my guardian Angel, and I mean that so sincerely, as she knew I was having these paranoid spells and did so much to console me and help me through this mess i was in. So, fast forward about ten days, what we all go through learning how to look after ourselves, and we didn't have a colostomy but an ileostomy, shit like that, remember?
Now you would think, ok, you got through all this shit now all we have to do is settle down and let the old bod heal on its own good time. WRONG, we are now introduced to the amazing world of blockages, or how to increase your vocabulary without even trying, that happens when you start vomiting up what I believe was the same stuff going into my pouch with such mind numbing pain that its impossible to describe and after a couple of years you no longer fear death, just that pain. Finally on one of my in house vacations barfing up my guts one of the local surgeons said to me one day, "Ed, i can fix this for you, but it means one more surgery", and bet your ass, I said "go for it doc", and go for it he did and my faith in mankind was restored. I have never had a blockage since and every time I read of someone who is having them I have the greatest empathy for them and wish they were able to have the good fortune I received from this man. Today I only wish I could find an orthopaedic surgeon that I could trust as before, during and after all this crap I went through it was always my spinal problems that has caused me the most agony, today has been one of the best Fathers Days I've had in years, made me really " long winded two Fingers".
Past Member
Holy shit. Son of a bitch. Hot damn, no way and all the other superlatives I can't think of right now.
My three-month stay was a piece of cake. All I did physically was hallucinate something fierce. And like you, I felt they were hell-bent on killing me to cover up their mistakes.
But mine was "congestive heart failure," not like yours.
That's the damnest thing I ever heard. Are you okay now?
eddie
Ed, your stools will never become formed. The consistency of a creamed soup is as good as it gets. You can still lose a good bit of small intestine and live, but you may have to have artificial feedings through a special IV. This is called TPN. Also, some people have feeding tubes put in for extra nourishment, for example, while they sleep. Ed, email me and ask any question you have. I hope this helped.
Eddie
pussycat
Hi there,
I lost my duodenum and part of my stomach in '85, while on holiday in Ibiza.
My amazing Spanish surgeon, with a huge cigar in his mouth, said "No more alcohol or fizzy drinks, but you must drink red wine and one tablespoon of the finest olive oil each day." In 2003, I had emergency surgery for colon cancer in Sweden, probably the best place in the world. To cut a long story short, with limited small intestines, the same rules apply. Cut out all fiber where possible, limit sugar, control fats, and drink red wine and some virgin olive oil.
"Life can still be good!
I lost my duodenum and part of my stomach in '85, while on holiday in Ibiza.
My amazing Spanish surgeon, with a huge cigar in his mouth, said "No more alcohol or fizzy drinks, but you must drink red wine and one tablespoon of the finest olive oil each day." In 2003, I had emergency surgery for colon cancer in Sweden, probably the best place in the world. To cut a long story short, with limited small intestines, the same rules apply. Cut out all fiber where possible, limit sugar, control fats, and drink red wine and some virgin olive oil.
"Life can still be good!
pussycat
The body is a remarkable piece of work and over time the brain works out how things need to change to sustain life with what is left, whether that be sight, hearing, loss of limbs or organs of the body, apart from the major organs. But even the brain can rewire itself to a degree and the liver can replace certain elements of itself, which I think is why my wonderful Swedish surgeons said, "Keep trying different things. You never know when your body is ready to accept them." But please, only in small doses to start. Best wishes to all.
gutenberg
Thank you eddie and Jack, right now I'm thinking, holy shit they actually read all that and still had time to reply and not only that, eddie, you gave me a whop upside the head with this stuff about TPN?? And something else returned from beyond. Actually I had two heart attacks after two different operations and after one of them I remember having this thing in my neck I believe, and I remember it felt sort of zigzagged on the outside and doctors telling my wife about a feeding tube, TPN?? and they wanted to x-ray me in bed and I didn't want that, much cursing and swearing and then the big fight started with my wife and the doctors because nobody bothered to call her, hey it was only a heart attack, right. And I'm supposed to be grateful that I'm still alive, I guess I am, but I'm not sure I'm living a life. Now all this is my way of coming in the backdoor to a question that started this whole thing but I will have to think of how to even ask it properly but it goes right back to the first post and the removal of intestines that has me so screwed up, I think I had read about this somewhere and its back there but up front it has literally crippled me and no chance of having this baby removed anytime soon and time's a wasting. At the beginning, when all this started I probably could have explained it but the break in period of an ileo and its many pitfalls has thrown me off the tracks. Eddie, when I can figure out how to word this without sounding like an idiot I will email you, OK, thanks guys, Ed
Past Member
Ed,
Up until now, you have been in such good spirits, even kinda happy-go-lucky. But now you sound, well, scared. If you are, I can certainly understand. I just can't grasp what is going on.
Are you in pain? Have you had this concern about your small intestine long, or has some recent development gotten to you? I know Eddie knows what you are talking about much more than me and will offer knowledgeable advice. I am sorry, buddy, I just don't know.
I did pick up on someone's post about fiber, and I will certainly stop taking it in! My doctor didn't say anything about that. Did yours? I just started taking a stool softener daily, and it helps me. But you have just the opposite problem, right?
I have found out one thing: I know less about the whole situation with me than almost everyone else in the forum knows about theirs. I gotta do some studying.
Hang in there, good friend.
Up until now, you have been in such good spirits, even kinda happy-go-lucky. But now you sound, well, scared. If you are, I can certainly understand. I just can't grasp what is going on.
Are you in pain? Have you had this concern about your small intestine long, or has some recent development gotten to you? I know Eddie knows what you are talking about much more than me and will offer knowledgeable advice. I am sorry, buddy, I just don't know.
I did pick up on someone's post about fiber, and I will certainly stop taking it in! My doctor didn't say anything about that. Did yours? I just started taking a stool softener daily, and it helps me. But you have just the opposite problem, right?
I have found out one thing: I know less about the whole situation with me than almost everyone else in the forum knows about theirs. I gotta do some studying.
Hang in there, good friend.
Past Member
A friend of a friend just had a colostomy (or some ostomy - they said). I put together a page of very general information. Would that be of value to others and where would I put that info?
nogutz
First I would like to thank Gutenberg for starting this topic.and secondly thank s for the many great responses. I to never had any problems with crohns until age 42 . And then it hit me like a tonne of bricks. From going in for a scope and them keeping me in the hospital and inside one week they remove my hole large bowel. That was in 2004 then in 2007 out of nowhere rushed to hospital and in for 4 months of hell and healing and that when they did emergence surgery and they take out 6-8 feet of small bowel there.and after that surgery had went Septic and then put into coma for about 27 days to come to realize they needed to go back in to take out another 6-8 feet . All this time on the TPN then I end up getting 2 blood clots near my heart from the TPN. Then I get aspiration pneumonia when I Finley try to eat. in month 3 of 4 months in hospital and left hospital weighting 108lbs.
So I am on long term disability I have very little energy and feel absolutely useless at most tasks. I no longer can afford to waste any of my energy. As I have limited amounts and try to use wisely. As for trying to thicken up my stool I use Codeine Phosphate 30mg [ narcotic ] up to 4 time daily and Loperamide. I have been on these two drugs since leaving hosp in mar 2008 I think that they are taking there toll on me and would like to talk to Doctors soon about this concern. Then January of this year the decided to put me on Remicade. And honestly don't think it is working for me. So now I have to rethink my hole way of doing almost everything in my life. And in this state of health, fine it hard to get out and meet people. I also take about 4 other pills
;See up to my getting Crohns I was working 10-12 hour days 6-7 days a week .Very active and a people person.Happy go lucky and know I cant do almost anything. I thought I would do that until I died. Now I have this disease and except this stoma . Put I have a problem with my energy level and wish there was something out there that would give me a tenth of what I once had. I think that is the hardest part of this disease for me!
I am rambling on and will . And in saying so would like thank you all for the knowledge I have gained from this topic And thanks to Crohns itself for allowing me to meet such great people from all over the world.
So I am on long term disability I have very little energy and feel absolutely useless at most tasks. I no longer can afford to waste any of my energy. As I have limited amounts and try to use wisely. As for trying to thicken up my stool I use Codeine Phosphate 30mg [ narcotic ] up to 4 time daily and Loperamide. I have been on these two drugs since leaving hosp in mar 2008 I think that they are taking there toll on me and would like to talk to Doctors soon about this concern. Then January of this year the decided to put me on Remicade. And honestly don't think it is working for me. So now I have to rethink my hole way of doing almost everything in my life. And in this state of health, fine it hard to get out and meet people. I also take about 4 other pills
;See up to my getting Crohns I was working 10-12 hour days 6-7 days a week .Very active and a people person.Happy go lucky and know I cant do almost anything. I thought I would do that until I died. Now I have this disease and except this stoma . Put I have a problem with my energy level and wish there was something out there that would give me a tenth of what I once had. I think that is the hardest part of this disease for me!
I am rambling on and will . And in saying so would like thank you all for the knowledge I have gained from this topic And thanks to Crohns itself for allowing me to meet such great people from all over the world.
margie
Thanks for asking that, I often find that I have inadequate understanding of the normal digestive system and especially my new digestive system. Thank you for starting this thread.
Marjorie
santabelle
Hi Ed,
I too have an ileostomy. They removed my colon, leaving me with my small intestine. The end or tip that protrudes through the abdomen is the end of the small intestine called the ileum. The function of the small intestine is to break down and digest the food that has been eaten. The large intestine's function is to reabsorb all the fluid from the waste product and to excrete the fluids back into the body's systems. Without the large intestine, one must drink lots of water to make up for the lack of the large intestine's functionality. I hope this was useful to you.
I personally try to eat a healthy diet with lots of vegetables, fruit, protein, and water of course (12+ glasses a day!). I avoid fried and greasy foods since they are hard to digest, and I have found seeds, nuts, and the skin on apples very hard to pass through my ileum, ouch! Carbonated beverages aren't so great either (lots of gassy output!)
All the best,
I too have an ileostomy. They removed my colon, leaving me with my small intestine. The end or tip that protrudes through the abdomen is the end of the small intestine called the ileum. The function of the small intestine is to break down and digest the food that has been eaten. The large intestine's function is to reabsorb all the fluid from the waste product and to excrete the fluids back into the body's systems. Without the large intestine, one must drink lots of water to make up for the lack of the large intestine's functionality. I hope this was useful to you.
I personally try to eat a healthy diet with lots of vegetables, fruit, protein, and water of course (12+ glasses a day!). I avoid fried and greasy foods since they are hard to digest, and I have found seeds, nuts, and the skin on apples very hard to pass through my ileum, ouch! Carbonated beverages aren't so great either (lots of gassy output!)
All the best,
gutenberg
Hi ALL: I just feel so damn Inadequate in trying to express my gratitude to all who dove right in there to help me understand in some small way what the hell happened to me.
Noguts: in reading your story it was like reading my own life before all this happened, all the energy I used to have is gone and nothing has so far come near to starting it up again. and I thought I had troubles until I read your story. I have no idea how much of my ilium was removed with the colon as when I was told about it I was in no shape to understand what was being said and I had never even heard of most of these words before, as I have said, this happened to me overnight and weeks later when I started coming to, I had to learn everything from scratch and just getting the flanges and pouches and all the rest into place left no room to be looking for what actually happened. But, my obsession with the ilium is based on a spinal problem I have which became exacerbated with, I believe, all the surgeries and is now the biggest problem I have to deal with, that and the fact if you walk into any doctors office with a list of all the problems you are experiencing you can bet your ass that you are on a fools errand if you expect for them to put it all together for you and try to come up with a plan to turn this all around for you and especially when you know from experience that even your own doctor didn't know you had this life threatening aneurysm and you have to tell this doctor you have one and he asks how do you know, and the answer was so simple, "i had READ the CAT scan but did not know what it meant, nice, huh. And then you are told what could happen if this thing were to break while in my hometown, 25% chance of surviving but 75% if it happened in the city. Well the operation was done in the city by the specialist and thus began the whole series of problems we are left with today, yet we persevere and take life one day at a time, once again, many thanks all, Ed
Noguts: in reading your story it was like reading my own life before all this happened, all the energy I used to have is gone and nothing has so far come near to starting it up again. and I thought I had troubles until I read your story. I have no idea how much of my ilium was removed with the colon as when I was told about it I was in no shape to understand what was being said and I had never even heard of most of these words before, as I have said, this happened to me overnight and weeks later when I started coming to, I had to learn everything from scratch and just getting the flanges and pouches and all the rest into place left no room to be looking for what actually happened. But, my obsession with the ilium is based on a spinal problem I have which became exacerbated with, I believe, all the surgeries and is now the biggest problem I have to deal with, that and the fact if you walk into any doctors office with a list of all the problems you are experiencing you can bet your ass that you are on a fools errand if you expect for them to put it all together for you and try to come up with a plan to turn this all around for you and especially when you know from experience that even your own doctor didn't know you had this life threatening aneurysm and you have to tell this doctor you have one and he asks how do you know, and the answer was so simple, "i had READ the CAT scan but did not know what it meant, nice, huh. And then you are told what could happen if this thing were to break while in my hometown, 25% chance of surviving but 75% if it happened in the city. Well the operation was done in the city by the specialist and thus began the whole series of problems we are left with today, yet we persevere and take life one day at a time, once again, many thanks all, Ed
n4christmas
In answer to your question. It was 28 years ago that I had my colon and large intestine removed because of Crohn's, and before I was finished, more of the small intestine was removed, leaving me with about 2 to 4 feet of small bowel. I have an ileostomy and have done just fine all of these years. As my doctor explained, the bowel has little feelers on it, and it will overcompensate for the loss of the other organs.
Immarsh
Hi,
I read your post, and all the supportive replies, and I really do understand your concerns.I was only 15 when I first got sick, but I was lucky enough to have young interns/ residents around who were glad to explain all the details of my condition. They even drew diagrams, and gave me copies of x-rays to explain what I'd had removed and what I had left. I found it very helpful, later in college, when we disected a baby pig, I was able to see what my internal organs looked lie.
So for anyone, who doesn't really understand the anatomy, searching on line for diagrams and photos might be very helpful.
As the years continued, I've developed so many complicating conditions.....kidney, liver, diabetes, degenerative disc disease, PAD, arthritis etc....that I go from one specialist to another. I rarely if ever had faith in my gp, until last year when a new young doctor joined my Family doctor's group. He really took the time, to sit, and understand all my conditions...and insisted that all specialists send him reports. He was so attentive, and supportive, that I felt safe and cared for for the first time in years. He left the practice, and I was going to follow him, but he assured me that another "new" doctor in the practice would be a good fit for me. And he was right. She's been supportive, and understanding, and very helpful in advising and supporting the effiorts of the 'specialists". She also gave me some interesting advice. With all the medical issues i have, she advised that I try not to focus on "what else might be wrong". At first I was going to argue with her, because I always seem to have a new ache or pain, and am afraid that it's something new. But I've taken the time to give her advice some thought, and have found that my anxiety level has definitely gone down. Yes, something new and life threatening might come up......but I try to take in stride the "normal" daily aches and pains, without letting my imagination ruin what might otherwise be a wonderful day. I hope this helps someone. Good luck to all of you.
Marsha
I read your post, and all the supportive replies, and I really do understand your concerns.I was only 15 when I first got sick, but I was lucky enough to have young interns/ residents around who were glad to explain all the details of my condition. They even drew diagrams, and gave me copies of x-rays to explain what I'd had removed and what I had left. I found it very helpful, later in college, when we disected a baby pig, I was able to see what my internal organs looked lie.
So for anyone, who doesn't really understand the anatomy, searching on line for diagrams and photos might be very helpful.
As the years continued, I've developed so many complicating conditions.....kidney, liver, diabetes, degenerative disc disease, PAD, arthritis etc....that I go from one specialist to another. I rarely if ever had faith in my gp, until last year when a new young doctor joined my Family doctor's group. He really took the time, to sit, and understand all my conditions...and insisted that all specialists send him reports. He was so attentive, and supportive, that I felt safe and cared for for the first time in years. He left the practice, and I was going to follow him, but he assured me that another "new" doctor in the practice would be a good fit for me. And he was right. She's been supportive, and understanding, and very helpful in advising and supporting the effiorts of the 'specialists". She also gave me some interesting advice. With all the medical issues i have, she advised that I try not to focus on "what else might be wrong". At first I was going to argue with her, because I always seem to have a new ache or pain, and am afraid that it's something new. But I've taken the time to give her advice some thought, and have found that my anxiety level has definitely gone down. Yes, something new and life threatening might come up......but I try to take in stride the "normal" daily aches and pains, without letting my imagination ruin what might otherwise be a wonderful day. I hope this helps someone. Good luck to all of you.
Marsha