# PEOPLE SEVERLY CONSTIPATED OR COLON REMOVED, COME HERE!!!



## elvesrock (Nov 21, 2003)

I really think I have colonic inertia, but if do, how come miralax doesn't work for me? i tried 1 cup for like 4 weeks, 2 cups for 1 week then 3 cups for like 3 weeks all in a row, increasing my dosage because the doctor told me too and NOTHING! What do you think is wrong with my colon? Have any of you out there experienced NO SUCCESS AT ALL with Miralax?Same with Zelnorm. I took it for a day, had a BM about 30 minutes after it and the second day it worked well too. I stopped to see if it was me or the Zelnorm (slaps self so hard on head) and then I didn't go, so I took it again for 5 or 6 and it didn't seem to work anymore! I was taking 6mg 2x a day. Should I try this again?Usually, even very slow transit people get relief from Miralax and I was wondering why I didn't... at all! I am really scared that I'll have my colon taken out or something really bad because I am hooked on laxatives, the only thing that has ever given me relief. Don't say my colon is lazy now because I was even worse before I took Senakot. Do you all have ANY suggestions? What do you SEVERELY constipated people do? I mean SEVERELY constipated? I think I am probably the most severely constipated person. I should be in the Guinness Book of World Records.


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## flux (Dec 13, 1998)

> quote:so I took it again for 5 or 6 and it didn't seem to work anymore!


5 or 6 days? This is constipation?


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## jenifer moor (Apr 14, 2002)

Elvesrock, You have reached the really panicky stage and this is not helping at all. I go through this panic thing every time I get really backed up but I am working on relaxing more about the whole thing. HOw long have you been this severely constipated?Are you in an older or younger age group?Have you tried large doses of magnesium? What has happened when you have tried a strictly soluble fibre diet? Answering some of these questions may help us answer.I doubt that you are the worst case of C.(I definitely lay claim to that. There is always someone worse than you!!)Don't panic about having your bowel removed at this stage. I have depended on some type of laxative all of my life and I still have my bowel and am well on in life. The guilty feelings every time you pick up a laxative and it says you'll become dependent on it and the brush off you get from medicos who don;t take the situation seriously are very hard to take...but try and be positive.


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## elvesrock (Nov 21, 2003)

HOw long have you been this severely constipated?I've been severely constipated since 2 years ago, I have vague memories of really bad cramps in those months before it started, and the cramps were horrible, but I had bowel movements that were really dark but I knew nothing of IBS so I didn't think of it. Then one time, I had really bad cramps, and I didn't go for like 3 days and then everything went downhill from there, it's a very long story and I can't go into detail, it's late.Are you in an older or younger age group?I can't disclose my age but let's just say I'm in a very young age group.Have you tried large doses of magnesium? Well, I tried magnesium, maybe I think.. hmm, 300mg or so for about 1 or 2 weeks? I think?? I didn't seem to help. Should I try this again and in how much? How long does it take to work? I'm not sure osmotic laxatives really work for me anyway because Miralax sure didn't.What has happened when you have tried a strictly soluble fibre diet? I have no idea what that is, can you explain?Answering some of these questions may help us answer.I doubt that you are the worst case of C.(I definitely lay claim to that. There is always someone worse than you!!)No way! I am REALLY bad, really. Senakot doesn't even work that well anymore. What laxatives are you supposedly dependant on to go??? What has helped you?


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## flux (Dec 13, 1998)

> quote:s, and I didn't go for like 3 days


Isn't this normal?


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## elvesrock (Nov 21, 2003)

flux, i don't think i'm asking your opinion.


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## jenifer moor (Apr 14, 2002)

Elvesrock. What does your doctor say about your condition? You need to ask to see a specialist to find out exactly what is wrong. You are young, so now is the time to sort things out. I'm sure there will be answers. Don't expect the worst. It is very easy to get panicky when you are really backed up. That will make things worse. Have you tried an enema to get really cleaned out and give the other things a chance to work. Just because miralax doesn't work doesn't mean the magnesium wouldn't. 300mg is a low dose of magnesium. I have to take heaps more than that to get things moving. What dose of miralax did you try? About the soluble fibre. Just do a search on this site and you will find out heaps. If you have been eating a lot of insoluble fibre like wheat bran and stuff like that, that can block you up. Have you had problems with your bowels all your life or were you normal and then just suddenly went C? Can you work out what triggered it all off?


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## Rose (Mar 25, 1999)

I posted this before for severely constipated people. It seems like a solution without having to injest all kinds of laxatives and fiber to help you go. From what I have read about it, it is an at-home colonic irrigations system. It also looks as if you would have to get your doctor to convince your insurance company to pay for it. It seems to be used for mainly bedridden or paralized people to remove impacted fecal matter.Anyway it sounds like a better option than having your colon removed. Go to www.piemed.com and read about it.


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## elvesrock (Nov 21, 2003)

Yes, I am seeing a specialist and it's another long story but we did some tests but not much more, she said I didn't need stuff like colonscopies and tubes but I got a barium x-ray, ultrasounds and normal x-rays, tons of blood tests and everything was normal. I asked for the Sitz Marker (transit test) and she first said that it was for "research" and then she said it wasn't available in T.O. Right.







How annoying are doctors who make excuses for not being able to order stuff? Anyway, there is a new appt with a different G.I. but that's in January and I'm really bad right now. Anyway, yeah, right now as I'm typing this I'm feeling really bloated and uncomfortable. Yesterday, I almost wanted to go to the ER and I slept for 4 hours because the gas was so bad, I couldn't fart it out. Senakot did nothing this morning, only make like tiny, tiny particles come out! It was like liquidy and like that yesterday and the day before with Senakot too? Does this mean I'm backed up??I keep wondering what offset this whole **** IBS thing, but I really don't know, it all started suddenly, I never had many problems before the cramping and those 3 days, I was given Lactulose and it helped and I can't remember, but the next few months I got more constipated, took mineral oil for about 4 or 5 months and I was squatting and still constipated, but able to go (in the constipated way, it's hard to explain, I squat and then I poop a log out!!!) In those times, I was burping real bad and I remember all of a sudden one day when it first started, I had this pain in my chest like there was so much gas and then it all started like that!! I've been on so many medications and nothing has helped!!!! Recently it's been bad.


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## flux (Dec 13, 1998)

> quote: I asked for the Sitz Marker (transit test) and she first said that it was for "research" and then she said it wasn't available in T.O. Right.


It doesn't sound as if you are really that constipated, but this test is the correct thing to do. Are you located near here: http://meds.queensu.ca/gidru/gidru.htm ?


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## elvesrock (Nov 21, 2003)

i've heard of queen's university, but i dont think thats a testing place for it, just for medical students?


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## flux (Dec 13, 1998)

Of course, all medical schools see patients. How would they learn otherwise?


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## Guest (Nov 30, 2003)

thats awesome Elvesrock! call them on Monday and make an appointment!!!! It would be great if you could get that test done and really find out what was going on with the motility - which seems like your main concern. Flux, would it put an end to the question of whether she has a lazy colon as she is so worried about. I still think this is all due to spasms and that you are on the wrong medicine. No doc would agree with me, but they can cause mildish constipation (like 2-3 day) too and especially trap gas in a sever way and make that freaky gushy sound you've talked about. The other possibility is you have some sort of obstruction but I doubt this is the case. I can't believe:a. you weren't able to get the colonoscopyb. you didn't get the sitz marker test eitheri think this current doctor is an idiot! and it makes me mad! with all this suffering its just a crime. what do we pay these people for????


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## flux (Dec 13, 1998)

> quote:would it put an end to the question of whether she has a lazy colon as she is so worried about.


Yes.


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## elvesrock (Nov 21, 2003)

ok, well um, call them? im not sure if there's a phone number, i'll get my parents here pretty soon but its almost lunch time now. right now im having this bloated feeling and it feels like im backed up.. i went to this walk in clinic yesterday, the doc felt my tummy and said there was no stool and i got an x-ray and he said there was nothing but gas in there, i even got to see the x-ray and compared it to last year's and it was a difference but the problem is that the sides of the new x-ray were all black. could the x-ray have been done wrong or what????? could the doctor not know that all the black was maybe impactions? he kept looking at it under the light and the two x-rays looked different. the first x-ray was lighted well and you could see masses of things like gas and stool but in the second it was darker and im not sure if he read it right, because im having watery stools like diarreah but not much like tiny bits and i have a heavy feeling in my stomach.. isnt that the signs of an impaction ??? ahhhh


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## flux (Dec 13, 1998)

> quote: could the x-ray have been done wrong or what????? could the doctor not know that all the black was maybe impactions?.


That was the *gas* the doctor was referring to.


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## elvesrock (Nov 21, 2003)

gas comes up black? it didnt on the other x-ray. even if it did could it have blocked him seeing the impacted stool>


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## Guest (Nov 30, 2003)

no the stool would show through the gas - thats how xrays work. they can "see" solid material through less dense material - how it "sees" your bones through your skin. the doctor was right. all this, in my opinion, amount to clues that you are experiencing gas due to spasms -- trapped gas and probably have heightened sensitivity to it which makes you feel it more and in my opinion causes spasms even more. which is actually really good and wonderful news -- prefereable to a lazy colon.


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## elvesrock (Nov 21, 2003)

hmm, well i did take a lot of laxatives the days before i got the x-ray so i dont think that would mean that i dont have a lazy colon. why am i having watery stools (its not even stool, its like water that has bits of brown particles? isn't this a sign of impaction? please i am sooo scared.. can someone help!!!???


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## Kathleen M. (Nov 16, 1999)

Probably the "world record" constipated person I have talked to are people who have about a bowel movement every month or so. Watery stools are from ALL SORTS Of things. Esp if you are doing things to try to go to the bathroom. There is "paradoxical diarrhea" where you are so constipated (like haven't gone for a week or more rather than didn't go for a day or three) that the colon pushes wet stool to try to dislodge it.I'm still concerned that your concept of "severely constipated" may not be the best. As long as you go 2-3 times a week you are still in the normal range of going.Not having a bowel movement on any given day doesn't make you constipated.How often do you go on your own? Pain is not necessarily constipation (trust me you can have diarrhea 15X a day and have pain/cramps). What happens when you eat 25-30 grams of fiber a day and drink 64 ounces of water for about a week?And given your level of panic/worry it may be worth talking to a counselor at school or something to see if there are any stresses/problems that may be showing up in the overly worried about your bowels.Oh, and Zelnorm is a you take it every day and over time it tends to normalize things. Taking it just to make you go (like senna) isn't the way to take it. The first time or two you take it, you may have quick bowel movements, but you get used to the drug and that stops and then after that it just helps you go more regularly than you do without it. It isn't a quick fix. For that matter neither is Miralax or other osmotic laxatives. They are more of a works over time, not take it and GO now becuase I want a BM now. They increase the regularity of bowel movements, but will not have that same fairly quick flush you out thing that stimulatory laxatives will have. Magnesium doses that people seem to use range from 200-700 mgs so I don't know if you were taking enough, but that sort of things still works best when there is ENOUGH fiber and water in the stool (unlesss you only go once or twice a month then you need to limit fiber because 3 weeks worth of recommended fiber in your colon is A LOT).K.


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## elvesrock (Nov 21, 2003)

well, you see it keeps varying. before, when i had no laxatives or anything, the only way i could go to the bathroom was to squat but only in the morning time.. (weird), and wait for a tiny urge and when that feeling of stool coming down was there, i had to go quick or else the feeling disappeared, but i dont think i have pelvic something or other stuff because when i do push, it comes out like in one second, but its only one long log like bm - isn't that what constipated people get? and i was bloated and miserable the whole time as well ... there was a period where i could always do that if i stayed home, but then there was a week where i couldnt and thats when i had to get xrays, showed lots of stool, tried fiber (metamucil) for 2 weeks, didnt work, so went back to the sick kids thing and then they gave me senakot 4 2 weeks, didnt stop it and now, i cant really tell if i can go by myself or not because i cant, ive always been at school & stuff but even when i feel real bad and stay home its rare that i do go by myself because i always take something, like miralax or zelnorm. just a few days like a week ago, i went but im not sure if it was zelnorm ( i think it was ) or me. today, i just went but it was like really thin small tiny stuff like REALLY SMALL and i didnt have a real urge i just was squatting and then it sort of came out and i had to go to the bathroom... but it was not a lot??? i dont know what is wrong with me... my stool colour and size and texture always changes! oh, and is milk of magnesia the same as magnesium , whats the diff?


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## Guest (Dec 2, 2003)

she almost mirrors me exactly and i'm definitely not constipated. i think senna is the wrong product for her. first off its a bad product, but also its more suited for people who need something to really move their bowels and don't get the colicky feeling she describes. I doubt those people get the urgency she's talking about either. It really seems more like classic sensitivity, spasms, urgency, c&d. I sort of think the best things in this situation would be getting some tests done to rule out transit issues and anal manometry, then weaning off the senna over course of a month or two. but weaning off completely. then trying exercise in conjunction with fiber therapy and maybe an antispasmodic or small dose of ssri. and relaxation/counseling.


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## elvesrock (Nov 21, 2003)

thanks joan. the problem is i cant get those tests done! i dont know what i am going to do. i am missing so much school. but, what are you talking about the urgency? i don't have urgency!


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## alihawk (Oct 23, 2000)

HI Elvesrock I had my colon removed because of colonic inertia this past August. I had the sitz marker test done which showed without a doubt that I had inertia. The constipation started for my when I was about 25. It just started out of no where. I would only go about once every 20 days. I saw about 15 gi guys 20 primary care docs and 5 surgeons. I struggled with this for about 8 years. I took everything from Zelnorm, Miralax, accupuncture, lactulose, magnesium, hypnotherapy, konysyl, laxatives and on and on. Everything would work great from anywhere to 1 week to a month and then just stop working.In 99 I had my sigmoid colon removed to fix the problem because the sitz markers all seemed to stop in that area. So they figured if they removed just the sigmoid all would be well. It worked great for about 8-10 months then I was right back to square one. I also had a bunch of other very important test. I had an anal manometry, anal emg, defogram, gastric emptying small bowel series ect.. All these other test are just as important to have because they will ensure there is nothing wrong with you rectal muscles or rectal sensations. These could be the cause of your constipation. They also check for any problems with your upper gi tract to make sure there are no problems with that. All these things must be sone to rule out other areas that might be the cause of your constipation. Especially if they are thinking of removing your colon. If any of these other tests are positive and they remove your colon guess what you will still be constipated.So do your homework here this is your body and leave no stone unturned. I am doing great I have not felt this well in 8 years. They removed my entire large bowel and they connected my small bowel directly to my rectum. Now I go about 4-5 times a day.I hope this info helpsAlison


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## elvesrock (Nov 21, 2003)

Thanks Ali, you are great. How did they connect the small bowel to your rectum or whatever? How come you didn't get a stoma or a bag? Do most constipated people that get the colon taken out get this done or is this rare and can only be done in certain situations? What is the risk or death or complications and what are the complications with this surgery?? I hope you can answer all these questions. Were you dependant on laxatives? I hate my G.I. so much, she is not giving me any tests when she should've done all this when I was still o.k. and not hooked on laxatives and in great pain. I am only 13.... omg, I feel so bad right now as I'm typing this. I am so bloated. Please answer my questions~


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## Guest (Dec 3, 2003)

hi elvesrock,what great advice and info from alihawk. i totally agree with getting ALL of those tests done. can you print out what she wrote and give it to your dimwitted doctor. you can even leave in the part where I call her dimwitted. well,maybe thats not such a good idea!sorry about the urgency - i though you meant that when you said the bowel movement comes out all at once - but sounds like a different situation. i really wonder if there is something wrong with the rectum/anus muscles and you are withholding the bm. b/c it sort of would explain how the stool is just sitting there and you can't go unless you crouch to get the sensation. tests would be the only way to find out.i TOTALLY agree with alihawk -- this is your body and your life so pursue treatment even if the docs think you are nuts.


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## elvesrock (Nov 21, 2003)

i really want to print it out and give this to my lol, "dimwitted" doctor, but she'll probably get angry and not treat me *sigh* what to do, what to do?







i am really sad. joanofarc, any way to talk to you better than these boards? i have msn... tangymint###hotmail.com, please add me, it's better on msn but if you don't thats fine. i will pursue it. next appt. dec. 12th and i am not leaving until she gives me tests, but the problem is im not sure they are available. you think they would be in a big city of toronto, right? seeing different g.i. in january too and probably going back to my family doctor for another referral. i am not giving up and i need these tests done!


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## alihawk (Oct 23, 2000)

HIFirst of all if you really don't like your gi that much they go to someone else. I went threw about 15 gi doctors before I found someone who believed me. Everyone else was telling me it was in my head or it was stress or it was not enough fiber etc..I suggest you find a pedicatric gi doctor. Also try to find someone that specializes in motility problems. A good place to start is a University teaching hospital.As far as the surgery they literally just removed my colon and connected the small bowel directly to the rectum with surgical staples. I had no rectal problems or pelvic floor problems or upper gi issues so the surgery was a success.However I do not think of myself as a poster child so to speak for this surgery it is a very individual thing and nothing is guaranteed. I know 6 defferent people that have had this surgery including myself and 3 of us are success stories and 3 are not.OF the 3 that are not a success stories one did not have anything checked except her colon so they took it out. Now they found that she had rectal problems all a long also. Now she has no colon still can not poop and is still in a lot of pain. Another woman had the surgery and was not successful but at this point they dont know why. She is in her 50 and had breast cancer and breast reconstruction. The other woman had no other problems except colonic inertia but she still has a lot of pain and gas and can go only sometimes. So I stress you must get everything checked out to make sure it is just your colon. This is by no means a quick fix. It is major surgery and you just never know how your body will react to it.They did my surgery laporscopically which means that I have 4 one inch insisions not one tweleve inch incision. If you get it done laporscopically you are pretty much ready to get back to a daily routine in 2-3 weeks. However if you do a lot of heavy lifting at your job or school then you are out for about 6 weeks.I go about 4-5 times a day now and I have not felt this good in 8 years.I hope that this helps you somewhat. Unfortunatley you are in a difficult situation since you are a minor and if your parents don't even think this is a problem and you don't like your doctor this won't be easy. You have to get another gi doctor and in the meantime maybe if you introduce your parents to this IBS board they will begin to see that you really do have a problem and that a lot of other people do to.Alison


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## alihawk (Oct 23, 2000)

Just wanted to add all the tests I had doneColonoscopy Sitz marker test you swallow a capsule about the size of a tylenol capsule and then have an xray in 5 days. The capsule has 25 xray marker in it and by day 5 you should have passed 80% of the markers.Defogram xray study also. They put barium past into your rectum then you sit on a make shift toilet an they take xray of you. They will ask you to squeeze your muscles like you are trying to hold in a bm and they will ask you to relax without pushing out the barium then they will ask you to poop it out. All this will tell them if your pelvic fllor muscles are working properly. Sometimes when you push to have a bm your pelvic muscles will do the opposite so you can't push it out.Anal Manometry and EMG They put a plug type device into your rectum and ask you to bear down like you are trying to put out a bm and then they will ask you to squeeze and hold it in. While you are doing this the probe in you but is recording info about your rectal muscles. The emg they put a ballon into your rectum and fill it with water. They will ask to to tell them when you feel the first bit of pressure and when you can't take to feeling of fullnes amymore. This checks out your rectal sensations to make sure you can feel poop when it enters your rectum.Gastric emptying a nuclear medicine test you eat an egg sandwhich and they watch to see how fast it moves out of your stomach.Hope this helpAlison


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## elvesrock (Nov 21, 2003)

I'm sad, these doctors believe I have an eating disorder. My parents think I am coming onto this board too much, and I worry too much. My pain is real, however!I went to the Sick Kids Hospital in T.O., the Emergency place and the doctor felt my stomach and said that it was soft, no stool, needed no enema and wouldn't do even an abdominal x-ray. He then said how I was so skinny and that I might have an eating disorder, needed counseling. Just like other doctors I have been to. He also said they do not take colons out for constipation and they only take if out if it's twisted, bloody diahrrea, appendicitis, really bloated huge stomach. Is that true? Is that kind of surgery that you underwent only available in the USA? I have not done any of those tests at all. I have done x-rays, two ultrasounds, a barium swallow + small bowel follow through. Is this considered an upper and lower G.I. work? I drank the barium + fizzy stuff and they took x-rays when it was happening to check for ulcers and stuff like that, is that the same or different from your gastric emptying test? When I was doing the test could they have checked for gastric emptying, and what does the SBFT do? Everything was normal. I have done lots of bloodwork as well and it was all negative. Yes, I do have a pediatric gastroenterologist and she says I do not need a colonoscopy because she thinks I am fine. How can I be fine if fibre, Miralax, Zelnorm and now even stimulant laxatives don't work for me? Enemas and suppositories too. However, I just had a small bowel movement an hour ago, I think it was from taking Zelnorm again, but I'm not sure, so that's hopeful, except, why would it work again if it didn't work that other week? This is really confusing and I feel like I'm not being told correct information. The emergency doctor said "enemas ALWAYS work" etc. and there is always a way to make my stool soft. He said he was not concerned at all about my physical stomach stuff, but my mental health. What is going on? My parents tell me that I am worrying too much and that I can not base my symptoms on people here because it's "one in a million" like you, Alihawk, who get their colons taken out and it's a severe case. Is this true? I still think that I am very close to getting my colon taken out, if that is even available in Canada for constipated people, since Senakot doesn't seem to work anymore neither do any of the best medicines for constipation. I don't know what I am going to do, I am always bloated & gassy as well.


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## alihawk (Oct 23, 2000)

HiI don't know what is available in Canada but this surgery is not unheard of here in the states. I would say it is more common if you have colon cancer or perforated colon rather thatn colonic inertia but it is still common placeIt sounds like you had an xray barium swallow with small bowel follow through. This allows them to see that everything moves through your esophagus, stomach and small bowel with no problems. It aslo tells them if there are any tumors or areas that are narrow. It doesn't reeally give an accurate gastric emptying time because there is no food involved.As far as the doc telling you than enemas alway work that is a crock. For me what went up never came back down. I tried them 3 times and they never worked they just made me feel more miserable because now not only was I full of poop but now I also had a bunch of saline in me too.I also know that depression and things of that nature involving your mental helth can affect your ability to poop. So if you do have any type of depression or what not you need to deal with that also. Alison


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## alihawk (Oct 23, 2000)

Please read Erics link on the BB about guidlines for constipation.Alison


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## bowels (Dec 19, 2003)

To alihawk and elvesrock,I can relate to everything you're both saying. I too had all my colon removed, leaving me with a small intestine attached to the rectum. I was at my wits end too. elvesrock it sounds as though you need to do some searching for a top gastro and an understanding doctor. You get dismissed so easily nowdays, and get sick and tired of people saying it's an irritable bowel - if only they knew what it felt like, I know it's very depressing. I went to doctors for 2 years, had so many tests and basically gave up everything I did, for example university, sport etc. Eventually it had to come out, that was the bottom line. Find someone to give you that motility test and all the other ones alihawk already mentioned. She's given you great advice, I second her opinion on this. Drop me a line or two please, I'm willing to talk if it means I can help,Miss Chatty


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## missC (Oct 16, 2002)

elvesrock, cooked beansprouts (mung, chickpea etc) plus bactericidals and fungicidals (e.g pau d'arco, citricidal) seem to be helping me with motility and stool formation. just putting my two penn'orth in: they're both relatively cheap and easy to give a try to. i hope you find some answer anyway. surgery is pretty drastic: i would try everything else available first.


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## carmen (Jan 29, 2001)

Elvesrock, I know you are hurting and in pain. I had 3 feet of my large bowel removed. I was too very constipated bloated gassy when I was in my teens from 16 to 21, then my mom took me to the mayo clinic in rochester mn. You know what, taking some of your bowel out should be the very last resort. It is just a whole new set of problems. If I knew back then, what I know today. I don't think I would have had surgery. I would have tried a more natural approach. I wanted a cure. I thought surgery would cure me. It does not. It gave me another set of problems. Have you tried digestive enzymes, probiotics, flax oil. Metamucil, it may make you more gassy at 1st. Sometimes even though you go, you may always have the feeling that you are bloated and gassy. I still have that feeling even with the surgery. I am now 37, I have had this problem a long time. I had my surgery in 1987.I live in toronto and I have a really good gastro. He is at Jane and Bloor , I could give you his name and address if you want. Take Care Carmen


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## elvesrock (Nov 21, 2003)

yes, that would be great... however.. he is an adult gastro, correct? i am a kid, i'm only 14. im not sure he'd be able to see me. i can't get any tests done to see if i have slow transit, that's what the doctor said, though she sort of hinted i had it and i believe so as well. what kinds of "natural stuff" would help? does any pharmacy have it or where do i get stuff like that? i'm right now on another laxative, milk of magnesia....







do probiotics make you unconstipated ... digestive enzymes? have you heard of rhubarb supplements too?


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