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Discussion Starter · #1 ·
Hi everyone, I am wondering if any of you know anything about this condition which I seem to have and will be starting biofeedback for in November. My Dr. says it is an "outlet "problem and that biofeedback will help. I agree about the outlet thing because the stool is definatley soft, it just WONT COME OUT!!!!!! I had a foot of my colon removed in March and for a while things were a little better, but now it is getting worse by the day. HELP!! Jody
 

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Jody,I just found out that I also have this condition. I am so glad to be talking to someone else that has it. All along I though my problem was in my colon, but it is not. I found out that I had this though a manometry. Another problem is that I also have very decreased sensation, so they do not think Biofeedback will help me, since I have no feeling in the area. I tell you. I have absolutely no feeling, I NEVER feel as if I have to go to the bathroom. The only way I know I have to go is that get a pain over my right eye. They are also going to send me for a Defcocograpy soon.The only things that is helping me with this condition is Miralax because it makes the stool soft enough to come out because my muscle contractions are so off due to the dyssenergia.Please elaborate on this. I am hoping we can help each other. Nicole
 

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Discussion Starter · #3 ·
OMG Nicole, Im so glad I found you! Your situation is exactly like mine. I also had the manometry and have no sensation. I did have the defocography before my last surgery and that showed the cystocele and perineal descent and entrocele. But I am soooo much worse since my surgery in March. I am really afraid to do another defocography because i am scared that the caulk barium stuff wouldnt be able to come out! Then my colon would be like a plaster cast inside! HA! its really not funny, but I am really just loosing my mind with all of this. I am going to try the biofeedback and I am trying to stay positive, but I really just dont hold out much hope for it. I am really considering talking to my Dr. about having a colostomy bag. It just seems like my quality of life would be so much better thatn what it is now. have you ever thought about that? jody
 

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Jody, sound like we have a similar problem. I also hate barium, it makes you fee like you are carrying around bricks. I have never thought about a colostomy bag, to me, it would be the worst thing that could happen. I'm 29 and single, and don't think that potential dates would find it very appealing!I think you should try the biofeedback, it mght work. I'm having a rough time finding someone who does it in my area though. Also, I have to say that the miralax has helped a ton because it makes everything soft and able to come out. Have you tried it? In the beginning, I needed 3 doses a day. I used to have to do enemas constantly and go for colonic irrigations. I haven't needed any o this since the miralax.I'm sorry you are worse since the surgery. Maybe our problem just isn't in our intestines at all, maybe it is just in the pelvic floor??My natropath tells me that i am just "anal retentive" literally. I tell you this...when i am relaxed and on vacation, I do not have hese problems. It's odd. What is your next step? I guess mine is to go for the defcocograpy.Write back.
 

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Discussion Starter · #5 ·
Hi Nichole, Well I just spoke with my Dr. and he didnt actually give me the news I was hoping for. He said that he wants me to try another round of the biofeedback (more agressively) but if that doesnt work, there is really nothing else he can do and recommends a colostomy so I can get on with my life. Of course I would have to really research all this and go to support groups before I did anything that drastic. I did start on the miralax 2 days ago but only with one evening dose , today iI will up it to tow doses and go from there. i'll let you know. Did it take a few days before it started working for you? jody
 

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Man, I don't have much to offer other then really consider before you get the colostomy, as I'm sure you will. There is another really good drug in trials now called SPI-0211, it's pretty powerful. I'm not entirely sure of what your describing but I was at least diagnosed with reduced sensation (the baloon all that jazz). The new drug is from Sucampo Pharmaceuticals. As far as the 29 year old single person stairing at a colostamy, I really feel for you, I'm 29 single and think that very same thought, good luck.
 

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thank god i found you guys I just found out yesterday that I have the pelvic floor problem. They are sending me to two different specialists I am hoping they can help me with all this. They put me on miralax And I am starting it today. I just need something to look forward to.
 

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hello, nope,I am not cosidering a colostomy bag.I am actually doing just fine on the miralax for my dyssenergia. I am hoping that Jody gets the same results. Yes,it did take a few days for the Miralax towork.I started with 2-3 doses per day to kick start it. I am very interested in this drug that you mentioned.Does it bring back senation?Jody,let me know how you do on the miralax after a couple days.I am so glad i have found you guys and that we can all talk about this issue. I NEVER feel like I have to go to the bathroom due to decreased rectal sensation. Do you experience this? Instead, as I've mentioned before. I get a pain over my left eye which goes away as soon as I evacuate.
 

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Discussion Starter · #9 ·
Hi, I have been doing the Miralax once a day now for 3 days. Today I am going to go up to twice a day and see if that does anything. I know I have to start slowly with this as it causes me a lot of bloating. I'm keeping my fingers crossed and will let you know. Jody
 

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Okay, let me know. I'm not sure if it causes bloating for me. I take it at night mostly, so I just sleep right through it. Good luck. Keep me posted. Have you been doing biofeedback? Did you find it hard to find a practitioner?
 

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Discussion Starter · #11 ·
Hi Nicole, Well so far the miralax doesnt seem to be helping me much at all. I am still eating the sugarfree candy every day and that seem to be the only thing that works. I'm going to stick with the Miralax a while longer though, just to make sure. How are you doing? What advice did your Doctors give you about the decrease rectal sensation and getting help for it? Mine basically told me that it cannot be repaired . I wonder if yours said the same thing. Jody
 

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Hi Jody,My doctor said nothing can be done. I am still waiting to have the defcocography done. He said to me "This is May Clinic stuff".The Miralax is still helping me, and I have to tell you, I was BAD off. I had to go for colonic irrigations all the time and do enemas a few times a week just to get myself to work every day. I am wondering why the Miralax isn't helping you. I'm also on Zelnorm too, I'm sure it's helping as well. Sometimes I also take a magnesium capsule at night with the Miralax. I really hope it starts working for you. Did you go for biofeedback? Was it helpful?
 

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Discussion Starter · #14 ·
Hi Nichole, The miralax seems to be working somewhat. I did increase to twice a day and I'll see what that does. I understand it takes a few days for it to start working, is that right? I have my first biofeedback session on the 29th. And I am going to be going 2-3 times a week at first. This is my last resort and I am really trying to be positive. I really dont want to have an ileostomy. I know you said you are 29 and single, I am 43 and married, I still dont want one!!! I did send for info on that BCIR procedure and they sent a lot of things to me. If this is what I have to do, then I would hope to go with that procedure. Are you the one that said you can only go if the stool was liquid? I cant remember if that was you or not. I will keep you posted. How are you doing? Did you find someone for the biofeedback? Jody
 

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Unlike you people, I have SEVERE pain with urge to go and can't get it out. I have pain ranging in my upper side to horrible pelvic pain.See Temnple U specialist the 23d. they specialize in cases other docs have given up on.Zelnorm gives me HORRIBE pelvic pain; miralax gives me horrible spasms.I have changed my diet and am up to 6 citrucel, apples, bran muffins, whole wheat bread, fiber one cereal, and 2 teasponfuls of milk of magnesia. the sevre pain subsides after 5 hours, but I must take Librax (addictive). Sometimes the upper bowel pain is so bad I can't sleep.Do you think I need a colostomy or ileostomy (sp?)?
 

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Jody,I'm glad the Miralax is helping you a little. It took about 4 days to work for me in the begining. I haven't tried to find anyone for the biofeedback yet, I am so busy at work, so I just don't have time right now, but please let me know how it works for you. Yes, basically the stool has to be very soft in order for me to evacuate. That's why the miralax helps so much. As I told you, I have zero feeling in that area and NEVER feel the urge to go. I really hope that you find something that works for you. I think you should try every option before getting an colostomy. Maybe try a natropathic physician?You now, I think my problem is kind of related to stress. When I go on vacation, I have no problems going to the bathroom. I go about 4 times a day. I stool have no feeling, but I do go. Does this happen with you?
 

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No.
 

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Hi everyone,I am glad to know i am not the only one sufferring with this irretating condition.My drtold me I have pelvic floor dyssynergia and after I been reading about it I think he could be right.My problem is that I have constant pressure on rectum to emty but at the same time I get cramps on the anal and its refuse to let anythyng to come out.It doesent matter if the stool is soft so had to try other ways to let it come out.Now this is not my only problem , I also have constant pressure on my bladder whish make me practically living in the toilett, even at night! About rectum, the opposite of you guys, I have exremly strong sensation even if it is just a little bit of stool.I hope someone can recognize these problems!sondes sensation
 

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Curiously,the first thing i got was pelvic disconfort.Then a feeling of a brick in the pubic area.Then anal dysenergia came,5 years after my sigmoid colon shock with NSAIDS.When i discover that straining and squating was alleviating the incomplete evacuation,i think pelvic dyssenergia was installed.
 
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