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Discussion Starter · #1 ·
Has anyone ever had srugery for their IBS-C?I am trying to convince my new GI to do it because I went from a full functioning college athlete over four years ago, to someone who can barely stand for 10 minutes because of feeling so sick. I have gone through every test you can think of, twice over, and no doctor would help. My doc says the only way he would do it is if my sitz marker test showed that I had a slow moving colon. I have done the test before and it involves swallowing a pill with little rings in it and they x-ray it on day one and again on day 5 or 6. I have always gone on the fifth day but there is so much pain and bloating in those five days. There's no test to show them that. Anybody done the surgery before? Thanks.
 

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You mean like getting the bag?I know that is commonly done for Chron's Disease but not so sure about IBS.I was actually considering the same thing. But I'm only 19 and that would not be cool at so young a age...although the constipation/bloating is so severe that I basically cannot do anything, I have a hard time making it to class for 3 hours.Although if you got the surgery would you be able to do that much sports? I am assuming that its that surgery and I might be a little confused.
 

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hi Shellyyou're right--there is no test to show the doctors how miserable the pain and bloating etc makes us feel. I'm with you. I've had ibs-c and incomplete evacuation for 35+ years and for a long time now I've just wanted to get rid of my colon completely since it clearly doesn't work properly but right, the drs don't want to do the surgery if you're just ibs-c and not slow transit. there's a thread about this on the pain/gas/bloating board that shed some light on this for me. sounds like there can be complications with the surgery. here's the link.http://ibsgroup.org/groupee/forums/a/tpc/f...261/m/459106572
 

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Discussion Starter · #4 ·
Thanks ya'll for replying back. I've been battling this for so long and I'm ready to do anything to make life any less miserable than it has to be. I'm actually not an athlete anymore because I was a springboard diver at the US Airforce Academy and in my senior year it was so bad they sent me home and finally just discharged me because I never got better. My life did a 180 after that. I'm not talking talking about the bag just yet but I mean a partial colectomy I think it's called. They just take your large intestine out but it's major surgery and it may not solve the whole problem. But, what I keep trying to get doctors to realize is that surgery is doing at least something to solve the problem because my life kinda got taken away from me and I refuse to live this way. Even if there are complications I'm up for it because even if I had to resort to a bag in the end, if the surgery didn't work, at least then I can wake up everyday without having to pray that I can mentally withstand getting through the day with the pain and discomfort. Only a short few years ago I had everything and now all I have is a daily struggle. I'm sure there's tons of people that can relate to this. Thanks again for the replies. I'm going to go visit your website you showed me
 

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i did a search on this board for colectomy and came up with lots of threads discussing it--lots of info and people's experiences although i haven't had time to read through it all yet but i'm working on it.
 

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Unfortunately we have had a few here that end up in much more pain from the scar tissue and other problems with the surgery (like any other "amputation" sometimes the nervous system may register a ton of pain from something that no longer exists) then they had before the colon was removed.It is one of the risks of doing it and probably one of the reasons they don't want to do it unless the constipation cannot be controled by any other method.K.
 

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Hi, i have been dealing with this issue (like you have mentioned on the forum ) for two years now. I dont have a bowel movement without an enema...and those only work 50% of the time. I attend college full time and have two jobs while batteling this disease...whatever it is.. and i am not going to lie...its really hard to keep up a good spirit and outlook on life. I know a girl personally who had this surgery that you speak of, and after two follow up surgeries and ALOT of complications she said that she would do it again knowing all that she knows now..she has regular bowel movements but still suffers with abdominal pain.
 

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Discussion Starter · #9 ·
I can't believe there are so many people that go through this just like me. You totally feel alone when you deal with this because everyone else seems to just catch colds and the flu and I'm like, hey, try dealing with feeling nauseous and bloated and not being able to poo everyday. Thanks again for all the responses back. I looked at the cecum website and my doctor didn't mention anything about that. I'm going to bring it up next time I see him. It takes so long to get in though so waiting is what I do best. Thinking about all of the complications of surgeries and what might happen if it doesn't work at all makes me feel even more sick but do you think it's worth it to think of it this way.............If I stay the way I am, I will be miserable everyday and keep my sedentary life and not be able to do things I want to do and be known as the girl who gets sick all the time.................or should I go through with a surgery that may make me better, even worse or make me have to take everything out and end up with a bag? Almost five years of constant pain seems like a pretty long time and being only 23, I can't go on much longer this way so what would be the difference if I had to have a colostomy bag in the end anyways you know? I hope I'm not crazy but I thank everyone for the interesting information. I wish intestinal problems were easier to cure but not enough doctors and not enough solutions cause heartache like mine
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Discussion Starter · #10 ·
Hey aflacgrl,Sorry I meant to ask you a question in my last post............Do you feel bloated all the time and nauseous? I can go to the bathroom but only a tiny bit every three or so days. Can you stand for long periods of time without feeling like passing out? Actually that was a couple of questions
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Hi..I'm new to this site.I was trying to find some information on my "condition".I am a 33 year old mother of 2.I pretty much healthy.Over the past two years or so,I have been suffering with alot of gas and no bowel movement.I am gaining weight.I am 5'3 and I weigh 190 lbs.I eat 3 meals a day,sometimes snacks in between.I might have a bowel movement 3 to 4 times per month.Most of the time 3 of the 4 times comes within the first 2 days of my period.I just recently went 13 days without one.I have taken laxatives to releive me,I'd go about 2 times,and then that was it.My mother had cancer 7 years ago and had her colon and bladder removed.She has the colostomy and the ostomy.I asked her for her advise.She told me to take a stool softener everyday.I started taking one a day,nothing happened.I started eating the Activia yogurt everyday,nothing.right now i am once again on my 5th day without a bowel movement.I had also taken a teaspoon of epson salts.It worked,within 30 min,I was going,but 1 time only.I am steadily gaining weight.I take food in,but all I do is store it.I do not have the finiancial means to see a doctor..Any advise would greatly appreciated..Thanks
 

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Discussion Starter · #12 ·
Hey Myra,I am pretty much the same as you except I think I can go a little more than you. Do you feel sick to your stomach all the time because everything's stuck up there and when you finally go to the bathroom do you feel like it's being pushed out by all the backed up stuff and enough didn't come out that should? I tried the stuff you did and nothing worked and using laxatives was the only thing that would help. I definitely gained weight too! It was just because I can't work out because I felt so bloated and full and feeling full from eating helped because I would pass out if my stomach ached and then the bloating and upset stomach came on even stronger. I am definitely not a doctor but I've been through a whole hell of a lot and I can at least tell you what I tried with docs. They started me with fiber, I've done every kind of food combination/herbal whatever you can think of, then gas x or mylanta, then zelnorm twice in two years, then miralax and colace, then bentyl, then zoloft which they thought would give me some sort of bowel movement, then amitiza and I got lots of bloating and diarhea on that one. None of the others worked at all. The tests they ran were a colonoscopy (twice), an endoscopy (twice), checked my gallbladder, x-rays, ultrasounds, and finally now I have to do a sitz-marker test and a defecagraphy (i've done both but the military did both tests wrong). Please, don't be scared at the long list because the reason why they do so much of it is because they have to rule everything else out before they can single it down to IBS or whatever it may be. I just went through a lot of bad doctors. You have to make sure that whatever doctor you see understands exactly what you have tried and don't give up until you find a solution. If you give up, it's really hard to find a doctor that will keep helping.If you have any questions about the tests or medications I took, please feel free to ask. I am so passionate to not let people go through what I did and it sounds like my symptoms were pretty similar to yours. I'm no doctors though but I can try to help at least.
 

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Discussion Starter · #13 ·
Myra,Sorry for the long-winded reply but the doctor I'm seeing now is really amazing and the first that seems to understand. He wrote a book and it would probably help you a ton to read it. It explains why a lot of people get what we do. He calls it a paralyzed colon but his book is called "Shining Light on Constipation" and his website in www.constipation.net but he said it wasn't working at the moment so try it if you can. I hope this helps.Fellow sufferer
 

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I really don't feel all that bad..When I do go,it doesn't feel like it's enough.It takes me forever to get to that point though.It's like my bowels will not move unless I take something to make them.I don't feel full,in the sense,that I can't eat because I eat all the time.It seems like I keep packing food in there storing it like a hamptster.I tried the benefiber,it didn't work.I did however resort to something I hadn't done before..ENEMA..Sure I went,but very little.This sounds crazy,but I even jumped up and down thinking maybe it would help to loosen things up a little (NOT)!I tried drinking plenty of water..didn't do much good.I don't know,maybe oneday it'll work itself out.I know it's depressing seeing myself with all of these extrs pounds,knowing my eating habits hasn't changed in 10 years..
 

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Myra,If you have no way to see a doctor you won't really be able to get a diagnosis and access to presciption medication. While you've given us your history here, we can't substitute for a gastroenterologist asking you specific questions and testing your transit time to diagnose something like colonic inertia. At some point, going as infrequently as you do, you run the risk of impaction. I would strongly suggest using Milk of Magnesia to begin with to see if it pushes out some stool. Or, (and I would never usually suggest this) a laxative like Per Diem in order to clean out your system for a couple days *at most*, then Milk of Magnesia from that point on.Stool softeners will also help you -- generic Colace is called ducosate sodium and it's not a laxative on it's own. It keeps the stool full and soft and easier to push out, but it won't make you go. In combination with other things, it's very helpful. I would go back to that as well. If you have IBS-C, Zelnorm and Amitiza seem to be most commonly prescribed. Zelnorm normalizes my gut tract somewhat but on it's own, it doesn't work well. It seems like everyone needs to add something to Zelnorm to help things along, but the fact that it gives need to go at all is pretty invaluable. Again, all my advice is just my opinion until you know for sure what you have...This is a gigantic quality of life issue and I hope you find a solution.Dana
 

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Discussion Starter · #17 ·
I definitely know how you feel. Just hang in there but if it ever get to be too much, please go see a doctor because it's really hard to get good help on this subject, so you have to keep contact first with a really good doctor and second, they have to exclude so many things with tests before they will diagnose you and be able to really help you. Good luck with everything and try to get to a doctor at some point because with my experience anyways, there's not much that seems to help in the way of food, or herbal remedies or laxatives and stool softeners and it's way too hard to live with this for life.
 

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Shelly111,I read your post a few days ago & I haven't been able to get you off of my mind. I kow it's a personal decision, but I think you're too young to have that kind of surgery. I think you should give it a little more time, & see if you can figure out a better solution. Additionally, I don't think the better surgeons would probably give someone your age that kind of surgery. If you look hard enough, you can find a doctor who will remove your colon, (or part of it), but most likely, his sugical skills will be lacking. If you choose to have surgery, you should really check the guy out. I've had severe constipation for 5 yrs now. I understand the lack of quality of life. I think I've finally found a doctor who is going to help me with this, but it took me 5 yrs to find him. I've had horrible experiences with doctors for 5 yrs. 5 years! If this doctor helps me, I'll give all of the details on this board. I see him again tomorrow. Do you have any symptoms besides nausea & constipation?
 

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Discussion Starter · #19 ·
Hey PW02,Thanks so much for taking the time to reply. I definitely agree with you that it takes a while and you have to try everything and exhuast every dr. you can find. I swear to you though that I have done that. It's also been a five year long battle for me to find a dr. who will help and I've done everything from fiber an dtums to zelnorm and amitiza and any kind of med you can think of. I know I'm young to be doing this but what it comes down to is I'm really too young to have been in pain for five long years and to be told that there's not much more they can do except surgery. I can totally identify with you about the search for a good dr. It's like no dr. really knows about it and knows it's tough to help so they kinda give up. Good luck with your dr.'s appointment and definitely let me know if he has any info.The symptoms I mainly get is nausea, horrible bloating everyday, constipation, gas (sometimes it comes out), and cramping with incomplete evacuation every time I go.
 

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Hi shelly1111!I was diagnosed with colonic inertia in 2000 after going to MULTIPLE doctors. The "disease" was rare then and there were very few dr's who knew what it was (and this was in NYC) It took quite a number of years to be diagosed with every test repeated at least twice. It was definitely not fun. Anyway, the dr. gave me the last newest drug on the market which didn't work and I ended up with a partial colectomy. I will be honest, it was a rough recovery. I had an epidural for several days (which was definitely better than having to be on an addictive pain medication), and it took me 3 months to recover. I will say that it did make my life so much better. The following year I ended up with adhesions which led to a small bowel obstruction and life or death emergency surgery to repair. That recovery wasn't quite as long. My surgeon tried to save as much colon as possible because I was so young (25). Now I am finding that I am starting to have some of the same symptoms of constipation, nausea and bloating, though not as bad. My gastro says that my remaining colon may be suffering from the same problem and it has resulted in a prolapsed rectum which may require surgery as well. I apologize for the long story, but the long and the short is yes, it is a rough surgery, but I found it worth it. Better to have some problem then have what I did. My surgeon was very thorough and was not knife happy so yes, it's possible. Suffering from an early age is miserable - I started feeling this way at 16. Do what you feel is the best move for you - only you know. Good luck and keep me posted. I hope I've helped with the novella!
 
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