mich423
11-29-2008, 12:31 AM
Hello,
It's been two weeks now and I finally got to see yet another doctor that specializes in anorectal motility. I told him in detail what my problems are, apparently my first doctor did not fill him in on any of the details. His first question to me was why are you here and whay did you have a colonoscopy. I was floored. I said I was told I needed to have a colonoscopy before I came to see you. So I went into detail about how I am using milk of magnesia every night so I can go smoothly and be emptied aout in the morning. He asked me what would happen if i don't take it. I said I still get the urge every morning first thing, but that the stools won't come out unless I dig them out with my finger and no amount of stool softeners help. They just make the stool pastey and I still have to pick and strain. I also told him I developed a fissure which he quickly dismissed by saying fissures "come and go" I've had this one for months and it hasn't gone anywhere!! He gave me a rectal exam and said that i have a spasm where as when I push down my muscles should be relaxing to let the stool out and instead they are contracting, so they are discoordinated. He said that's why when I strain it's like pushing against a wall. Then we then went back to his office and he told me I will have two tests. One is an anorectal motility test. I had to ask him what that was and he said they use a thin balloon inserted in the rectum to measure my mucle tone. The next test was an MRI. He didn't seem to volunteer any info I had to ask every detail and I was nervous so I forgot a few things. But he did tell me he won't be present for either of these tests (i'm wondering if that has anything to do with my insurance which is medicaid, I was told they don't pay well, so doctors kind of push you away a bit. Anyway, he also handed me an outline of a diet I should follow and said for me to eat a high fiber breakfast, take citrucel after breakfast, which bothered me because my system is very slow and i don't want it to start working on me at nite. I used to take metamucil every nite at 9:30pm and it would work at 9:00 am religiously. But he was adament that I don't take that. He said it causes too much gas, which I never had a problem with.
So Citrucel after a high fiber breakfast, lots of fruit and water, the usual. But he said this won't work right away! So I said well then I am going to be picking out the stool again until this works which didn't faze him in the least. I felt he just patted me on the head and didn't address all my problems, such as not being able to go to stores or shopping of any king because I get the urge to go several times sometimes with nothing coming out and not being able to shop at all. I'm dependent on my mom for those things. He said nothing about that. I've pretty much become a hermit because of that. He just told me this new diet will help and dimissed me.
I had to make an appointment for both tests on my own. I haven't heard from the MRI people yet because they have to check with my insurance. I was supposed to hear back today, but I have a feeling medicaid won't cover the MRI. Then when I got home, I read the paper he wrote and it said DEFECOGRAPHY. What is that?? Is it part of the MRI? He told me a nurse would conduct these tests as well as techs. she also would help me retrain my bowel. He said babies go after breakfast and that's what he wants me to do. But I always go, or get the urge to go first thing in the morning even before breakfast without laxatives. How is he going to change that. I have been that way my whole life. He said I had this spasm problem all my life and the reason i need to use enemas and my finger is because that is somehow relaxing the muscles to let the stool pass.
I'm sorry for writing so much. I'm very depressed and am still taking the Milk of Magnesia everynite and going like diarhea every morning, but at least it empties me out and I don't have to get the urge and pick all day long. Then at least I can do things in life where a bathrom may not be present. If I start with the fiber, that's what will happen. I don't think I will take his advice. I think I may go back to eating fiber and such, but I will take the metamucil at nite, and it it doesn't work or get stuck, then I will have to take sennakot as I did once before because the stool moved down but wouldn't get passed a certain point.
I'll take the tests and all, but I pretty much know my own body. When I take fiber and make formed stools, I can't go to stores or even out at nite because I get nervous, get the urge and end up having to stay home because it won't stop and I don't mean diarhea, I mean picking out stools. I want to be able to live again, but I don't know how without laxatives. I'm 37 and I feel my life is over at least socially and I cannot take care of myself anymore.
Can anyone give me some advice? Does anyone else out there have a similar problem with being unable to go out? I really need some help here!
Thanks for reading,
Mich
It's been two weeks now and I finally got to see yet another doctor that specializes in anorectal motility. I told him in detail what my problems are, apparently my first doctor did not fill him in on any of the details. His first question to me was why are you here and whay did you have a colonoscopy. I was floored. I said I was told I needed to have a colonoscopy before I came to see you. So I went into detail about how I am using milk of magnesia every night so I can go smoothly and be emptied aout in the morning. He asked me what would happen if i don't take it. I said I still get the urge every morning first thing, but that the stools won't come out unless I dig them out with my finger and no amount of stool softeners help. They just make the stool pastey and I still have to pick and strain. I also told him I developed a fissure which he quickly dismissed by saying fissures "come and go" I've had this one for months and it hasn't gone anywhere!! He gave me a rectal exam and said that i have a spasm where as when I push down my muscles should be relaxing to let the stool out and instead they are contracting, so they are discoordinated. He said that's why when I strain it's like pushing against a wall. Then we then went back to his office and he told me I will have two tests. One is an anorectal motility test. I had to ask him what that was and he said they use a thin balloon inserted in the rectum to measure my mucle tone. The next test was an MRI. He didn't seem to volunteer any info I had to ask every detail and I was nervous so I forgot a few things. But he did tell me he won't be present for either of these tests (i'm wondering if that has anything to do with my insurance which is medicaid, I was told they don't pay well, so doctors kind of push you away a bit. Anyway, he also handed me an outline of a diet I should follow and said for me to eat a high fiber breakfast, take citrucel after breakfast, which bothered me because my system is very slow and i don't want it to start working on me at nite. I used to take metamucil every nite at 9:30pm and it would work at 9:00 am religiously. But he was adament that I don't take that. He said it causes too much gas, which I never had a problem with.
So Citrucel after a high fiber breakfast, lots of fruit and water, the usual. But he said this won't work right away! So I said well then I am going to be picking out the stool again until this works which didn't faze him in the least. I felt he just patted me on the head and didn't address all my problems, such as not being able to go to stores or shopping of any king because I get the urge to go several times sometimes with nothing coming out and not being able to shop at all. I'm dependent on my mom for those things. He said nothing about that. I've pretty much become a hermit because of that. He just told me this new diet will help and dimissed me.
I had to make an appointment for both tests on my own. I haven't heard from the MRI people yet because they have to check with my insurance. I was supposed to hear back today, but I have a feeling medicaid won't cover the MRI. Then when I got home, I read the paper he wrote and it said DEFECOGRAPHY. What is that?? Is it part of the MRI? He told me a nurse would conduct these tests as well as techs. she also would help me retrain my bowel. He said babies go after breakfast and that's what he wants me to do. But I always go, or get the urge to go first thing in the morning even before breakfast without laxatives. How is he going to change that. I have been that way my whole life. He said I had this spasm problem all my life and the reason i need to use enemas and my finger is because that is somehow relaxing the muscles to let the stool pass.
I'm sorry for writing so much. I'm very depressed and am still taking the Milk of Magnesia everynite and going like diarhea every morning, but at least it empties me out and I don't have to get the urge and pick all day long. Then at least I can do things in life where a bathrom may not be present. If I start with the fiber, that's what will happen. I don't think I will take his advice. I think I may go back to eating fiber and such, but I will take the metamucil at nite, and it it doesn't work or get stuck, then I will have to take sennakot as I did once before because the stool moved down but wouldn't get passed a certain point.
I'll take the tests and all, but I pretty much know my own body. When I take fiber and make formed stools, I can't go to stores or even out at nite because I get nervous, get the urge and end up having to stay home because it won't stop and I don't mean diarhea, I mean picking out stools. I want to be able to live again, but I don't know how without laxatives. I'm 37 and I feel my life is over at least socially and I cannot take care of myself anymore.
Can anyone give me some advice? Does anyone else out there have a similar problem with being unable to go out? I really need some help here!
Thanks for reading,
Mich
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kd66
12-03-2008, 11:19 PM
I meant to reply right away but got sidetracked. Sorry.
My understandign is that defecagraphy uses a contrast agent in the bowel with x-ray imaging to see what happens when you try to defecate. I have read about it but never seen one. I think sometimes I should have one because I have the same kind of sensation when I try to bear down. I like your description of pushing against a wall. I can have terrible cramps and push and push and cannot make anything happen. Eventually it will come on its own.
I am not surprised that the Dr won't be there for the test. It sounds like the sort of study that is normally done by techs and nurses. They probably do them a lot and should be good at it. The dr will just see the pictures and interpret them. It shouldn't have naything to do with Medicaid.
I wish you the best with the study. Please post again and let me know what you do.
My understandign is that defecagraphy uses a contrast agent in the bowel with x-ray imaging to see what happens when you try to defecate. I have read about it but never seen one. I think sometimes I should have one because I have the same kind of sensation when I try to bear down. I like your description of pushing against a wall. I can have terrible cramps and push and push and cannot make anything happen. Eventually it will come on its own.
I am not surprised that the Dr won't be there for the test. It sounds like the sort of study that is normally done by techs and nurses. They probably do them a lot and should be good at it. The dr will just see the pictures and interpret them. It shouldn't have naything to do with Medicaid.
I wish you the best with the study. Please post again and let me know what you do.
cat2112
12-11-2008, 11:51 PM
Hello there - first time to this message board - but I know all about the Defagram and many of the problems you mentioned. I wish you luck in your journey to find answers.
First - fine a reputable doctor that takes you seriously. I am 10 years + into this and still not quite right. Doctors dismiss this too quickly. The whole thing is very complex and hard to diagnose.
Basically they fill your rectum up with a paste like substance with what can only be described as a caulking gun. Once they do that you hop up on this little chair or stool which is attached to a huge X Ray Machine. It raises you up off the floor. You'll have a little hand thing to hold onto to. You will be sitting on a bedpan. Its quite a balancing act. They will take a pic of you at rest, and then pushing - and then finally they will ask you to push all the paste out and they will take pics while you do it.
My history started at 30 or so (41 now) and I have had the following dianosis:
IBS
Gerd
Intussupception
Rectocele
Enterocele
Sigmoidocele
Has a Cecopexy
Surgeries since 01:
Cholecystectomy (removal of gallbladder) in 4/01
Hysterectomy with small bowel repair in 2/03
Rectal suspension with mesh in 7/03
Left hemi colectomy in 10/08
Cecopexy in 10/08
And here I am still experiencing intense pain with each BM - seems to still back up. I'll be constipated at first and will need to assist when it won't move on its own. But after dealing with that for a few days, I'll get intense stomach pain and out of nowhere a huge amount will fly out of me. And then the same old story repeats itself.
Wish I had more answers for you but at this point I am still seeking some myself.
Wish you the best of luck.
Cat
First - fine a reputable doctor that takes you seriously. I am 10 years + into this and still not quite right. Doctors dismiss this too quickly. The whole thing is very complex and hard to diagnose.
Basically they fill your rectum up with a paste like substance with what can only be described as a caulking gun. Once they do that you hop up on this little chair or stool which is attached to a huge X Ray Machine. It raises you up off the floor. You'll have a little hand thing to hold onto to. You will be sitting on a bedpan. Its quite a balancing act. They will take a pic of you at rest, and then pushing - and then finally they will ask you to push all the paste out and they will take pics while you do it.
My history started at 30 or so (41 now) and I have had the following dianosis:
IBS
Gerd
Intussupception
Rectocele
Enterocele
Sigmoidocele
Has a Cecopexy
Surgeries since 01:
Cholecystectomy (removal of gallbladder) in 4/01
Hysterectomy with small bowel repair in 2/03
Rectal suspension with mesh in 7/03
Left hemi colectomy in 10/08
Cecopexy in 10/08
And here I am still experiencing intense pain with each BM - seems to still back up. I'll be constipated at first and will need to assist when it won't move on its own. But after dealing with that for a few days, I'll get intense stomach pain and out of nowhere a huge amount will fly out of me. And then the same old story repeats itself.
Wish I had more answers for you but at this point I am still seeking some myself.
Wish you the best of luck.
Cat
mich423
12-12-2008, 02:00 AM
Thanks kd66 and cat2112,
I read up a bit on this proceedure and it is just as bith of you have described it. I'm a little worried because I've been taking milk of magnesia every night to help me go in the morning and I have only been making watery diarrhea every morning. I haven't passed a formed stool in months. I didn't follow my doctors instructions on fiber and such because making a formed stool scares the heck out of me especially because it's slow to come out and I have to manually get it out. I know laxatves are bad, but this seems to clean me out, so I don't have to be worried that i'll be in the bathoom 14 times a day just to press stool out of me.
I'm afraid that when they insert this "paste", I won't be able to get it out without using my finger, this is what I hae to do when I make pastey stools as well as formed ones. Does the stuff all come out? I also use fleet enemas and warm water enemas to get some stool out, even with the laxative. I al literally scared poopless over this, but I'm hoping they will find something.
On Moday, I have to go for a manometry, baloon test and I wonder how that will go. I just don't know what happened to me! Maybe it's in my head. I can't seem to go like I used to in my old apartment. I used to fill the toilet everyday with formed easy to pass stools, the result of Metamucil every nite and stool softeners. The doctors can't tell me why this has changed. One doctor said these things just get worse. But I have issues sometimes with privacy ( in my apt. the bathrooms are back to back and I can hear my neighbor. It's almost like being in a publis restroom) I live with my mom and only have one bathroom, I was used to always having my own which i think changed my habits as well. Could this all be in my mind? I'm really not happy here. What do you guys think?
Thanks for your words of confidence for me! I truly appreciate it and will keep you updated as to my progress. By the way I'm 37 and have suffered all my life with bathroom problems, when I was little my mom would make me wait to go until I got home from school and never let me use public toilets. I used to hold it alot as a child and teen.
Also wanted to add, do you think this will be painful since I think I have a fissure and my colonoscopy showed irritation where the stool get stuck and I have to pick it out. Sometimes when I use my finger it hurts alot, and the pain lasts all day. Sometimes it even wakes me up at night. What should I do?
Mich
I read up a bit on this proceedure and it is just as bith of you have described it. I'm a little worried because I've been taking milk of magnesia every night to help me go in the morning and I have only been making watery diarrhea every morning. I haven't passed a formed stool in months. I didn't follow my doctors instructions on fiber and such because making a formed stool scares the heck out of me especially because it's slow to come out and I have to manually get it out. I know laxatves are bad, but this seems to clean me out, so I don't have to be worried that i'll be in the bathoom 14 times a day just to press stool out of me.
I'm afraid that when they insert this "paste", I won't be able to get it out without using my finger, this is what I hae to do when I make pastey stools as well as formed ones. Does the stuff all come out? I also use fleet enemas and warm water enemas to get some stool out, even with the laxative. I al literally scared poopless over this, but I'm hoping they will find something.
On Moday, I have to go for a manometry, baloon test and I wonder how that will go. I just don't know what happened to me! Maybe it's in my head. I can't seem to go like I used to in my old apartment. I used to fill the toilet everyday with formed easy to pass stools, the result of Metamucil every nite and stool softeners. The doctors can't tell me why this has changed. One doctor said these things just get worse. But I have issues sometimes with privacy ( in my apt. the bathrooms are back to back and I can hear my neighbor. It's almost like being in a publis restroom) I live with my mom and only have one bathroom, I was used to always having my own which i think changed my habits as well. Could this all be in my mind? I'm really not happy here. What do you guys think?
Thanks for your words of confidence for me! I truly appreciate it and will keep you updated as to my progress. By the way I'm 37 and have suffered all my life with bathroom problems, when I was little my mom would make me wait to go until I got home from school and never let me use public toilets. I used to hold it alot as a child and teen.
Also wanted to add, do you think this will be painful since I think I have a fissure and my colonoscopy showed irritation where the stool get stuck and I have to pick it out. Sometimes when I use my finger it hurts alot, and the pain lasts all day. Sometimes it even wakes me up at night. What should I do?
Mich
Brocallie
12-12-2008, 02:41 PM
I seriously doubt any useful information will be gleaned from a defography if you can't even poo in a "back to back" bathroom. You do know you will be expected to poo in front of people, while it's being recorded? To me, it seems that 90% of your issues are mental/emotional since you have a lifetime of "bathroom related issues/traumas." I think you probably need to keep your hand out of your rectum, follow the advice about fiber, etc and see what happens for a few days. Going 3-4 days without using the toilet won't be *that* big of a deal and I'll bet if you just relax and listen to your body you'll go long before that.
I wish you luck!
I wish you luck!
beachlovr
12-14-2008, 03:43 AM
I used to use Milk of Magnesia every so often. It is not a good idea to use it every night to the point of having liquid stools every morning. If you don't allow your rectum a chance to pass regular formed stools fairly often then your rectum will tighten up and you will have an even harder time to ever pass any type of formed stool the rest of your life. It is the "if you don't use it you lose it" concept. Straight liquid stools doesn't help at all. Instead of MOM why don't you try drinking a hot beverage first thing in the morning like coffee or hot chocolate. Also, there is a product called "Calm" that I use now instead of MOM. However, I try to not to use it every single night. A fiber supplement like Metamucil always made me go 3-4 times a day. That is way too many times to go a day. Good luck!
kd66
12-17-2008, 01:21 PM
Mich - you have some really good advice from all of the posters on this thread. I disagree a little in that I think the defacography could be useful to rule out any anatomical problem that might be holding things up. The point of it is to see why you can't go, so not being able to perform during the test might not be an issue.
I will second the thought that you don't have to go every day. Why don't you try doing or taking nothing at all and see how long it takes for something to happen? Believe me, it will eventually come on its own! If the MoM or other laxative works for you, you could take it every other day or so. I have used such a schedule for years. It allows me to at least have 'good' days half of the time and to schedule appointments weeks in advance.
Best wishes -
I will second the thought that you don't have to go every day. Why don't you try doing or taking nothing at all and see how long it takes for something to happen? Believe me, it will eventually come on its own! If the MoM or other laxative works for you, you could take it every other day or so. I have used such a schedule for years. It allows me to at least have 'good' days half of the time and to schedule appointments weeks in advance.
Best wishes -
mich423
04-23-2009, 02:20 PM
I am so ready to find something out and get a diagnosis that I have no "issues "with pooing in front of anyone!! I'm ready to poo in front of an entire hospital staff if it will get me a diagnosis!! But I have waited now almost 6 months and will have to wait more because of insurance mix ups and waiting for them to approve a defecography! I can't afford it on my own, they said it cost $5000!!!!!!! I'm just hoping it won't go another 6 months! My symptoms are worse, I'm suffering everyday it's driving me crazy and I'm ready to die! I have no life anymore, just waiting in pain for a test that may never happen and the hospital nor the doctor can do anything about it. I'm thinking of admitting myself to emergency, maybe I won't have to wait anymore if I do that. What do you think? I have to wait at least another month before I will know if my insurance will let me have this test. I can't last!
emily42
04-23-2009, 03:27 PM
You are not alone. I too am suffering with the same issue. I do not use the finger method, I only use warm water enemas. I am 43 years old. If you would like to know more about my situation and struggles with it, please read my other posts.
Thanks,
Emily42
Thanks,
Emily42
mich423
04-25-2009, 08:34 PM
You are not alone. I too am suffering with the same issue. I do not use the finger method, I only use warm water enemas. I am 43 years old. If you would like to know more about my situation and struggles with it, please read my other posts.
Thanks,
Emily42
Thanks so much for finding me Emily42! I also feel very depressed and at times wonder if this will ever get any better. I have read some of your posts and I was hoping that we can talk more! You are very helpful and since our problems may be similar, it would be nice to have someone I can really talk to about this, my mom is the only person I can talk to and she told me she can't take hearing about it anymore. I think she is just fed up because she wants to help but she can't.
Please tell me how things are going for you, you can PM me if you want or write here whatever is more comfortable for you!
Thanks and I hope things are getting better!!
Mich
Thanks,
Emily42
Thanks so much for finding me Emily42! I also feel very depressed and at times wonder if this will ever get any better. I have read some of your posts and I was hoping that we can talk more! You are very helpful and since our problems may be similar, it would be nice to have someone I can really talk to about this, my mom is the only person I can talk to and she told me she can't take hearing about it anymore. I think she is just fed up because she wants to help but she can't.
Please tell me how things are going for you, you can PM me if you want or write here whatever is more comfortable for you!
Thanks and I hope things are getting better!!
Mich
emily42
04-26-2009, 01:47 AM
Hi there. It sounds like we are in the same "crappy" boat. Do you know what has caused your problem? Can you kind of fill me in on your life do you/did you work? Do you have any kids? Etc....
Today, I decided not to take anything for my issue and I was actually better off that way. I had a bowel movement (incomplete, of course) and the rest of the day I felt it in me, but wouldn't come out. You know the bad feeling of being constipated. I did not have as much gas today, until now. Now I smell like poop (I hate to say that, but I think I do). Luckily, my husband doesn't have a very good sense of smell. Tonight, (just now) I went ahead and did a scoop of Citracel (sp?) in a glass of water and drank. The other day I did this in the morning and had gas all day. So now I am going to try this b4 going to bed and see how that works out. This totally sucks and sometimes I am soooo bummed out about it. It seems like if the medical profession can do face transplants (with all the nerves and muscles involved there) that they should be able to fix our asses!!! Have you read the post from Katliz where they rebuilt her sphincter muscle by using her hamstring? This is the brightest hope on the horizon that I can see. I have a feeling that they will not do it unless you are not continent of stool, and unfortunately I am continent of stool and from what I have read about you, you are too right? Well it's late, so I better get my stinky butt into bed. I just want you to know so much that you are not alone and I am always here to listen and correspond.
Take care,
Emily42
P.S. Don't be too mad at your mom, I can only imagine how helpless she feels. Sometimes when people can't help, you just need to talk to someone sharing your same "crappy" boat, and that's me :)
P.S.S I tried to do a private message, but the message can only be so many words and this went over.
Today, I decided not to take anything for my issue and I was actually better off that way. I had a bowel movement (incomplete, of course) and the rest of the day I felt it in me, but wouldn't come out. You know the bad feeling of being constipated. I did not have as much gas today, until now. Now I smell like poop (I hate to say that, but I think I do). Luckily, my husband doesn't have a very good sense of smell. Tonight, (just now) I went ahead and did a scoop of Citracel (sp?) in a glass of water and drank. The other day I did this in the morning and had gas all day. So now I am going to try this b4 going to bed and see how that works out. This totally sucks and sometimes I am soooo bummed out about it. It seems like if the medical profession can do face transplants (with all the nerves and muscles involved there) that they should be able to fix our asses!!! Have you read the post from Katliz where they rebuilt her sphincter muscle by using her hamstring? This is the brightest hope on the horizon that I can see. I have a feeling that they will not do it unless you are not continent of stool, and unfortunately I am continent of stool and from what I have read about you, you are too right? Well it's late, so I better get my stinky butt into bed. I just want you to know so much that you are not alone and I am always here to listen and correspond.
Take care,
Emily42
P.S. Don't be too mad at your mom, I can only imagine how helpless she feels. Sometimes when people can't help, you just need to talk to someone sharing your same "crappy" boat, and that's me :)
P.S.S I tried to do a private message, but the message can only be so many words and this went over.