I found this website today.
Since none of the digestive-related forums really fit my situation, I'm posting this in the "irritable bowel" forum (for lack of a better one).
Shouldn't there be a general forum topic called "Digestive Diseases - other"?
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I'd just like to know if there is anyone else like me who has been using Miralax -- actually, the polyethylene glycol generic -- to avoid colon surgery for a stricture that prevents the passing of 'formed stools.'
Currently, I am taking three doses (17 gm each) once a day -- very early in the morning (between 3-4 a.m.) Thank goodness that Miralax is a tasteless, colorless powder that easily dissolves in any liguid. I drink it with an 8-oz glass of diluted grape juice (2 doses) before breakfast, along with a cup of hot tea (1 dose) with breakfast. Taking it so early allows me to start going to the bathroom over the next couple of hours -- so that I can start my day around 7 a.m. with a relatively 'empty' colon.
This 'routine' -- in combination with adhering to a very limited and restricted food intake -- has allowed me to pass "liquid feces" on a daily basis for the last 6 years.
At age 67, I am otherwise pretty healthy, physically active, and in no great physical distress. (I am able to play tennis very energetically - but only 'doubles,' not 'singles.' I could probably play singles if I didn't have a degenerative 'arch' problem in my right foot.)
I have not had a 'formed stool' for several years. The whole problem began in 2004 (when I was approaching age 60), when I suddenly did not have my 'usual,' daily, early-morning bowel movement (usually thin, narrow, stools).
After a second day of no bowel movement, I saw an 'internist.' She quickly said that I might have diverticulitis -- after she pressed on my abdomen, which was 'tender.'
Imaging tests confirmed the diverticulitis -- and antibiotics cleared up the problem for a while, with a return to my 'usual' bowel habits.
But over the next two years, I had three repeat episodes of diverticulitis -- treated with antibiotics each time.
After the fourth episode of diveritulitis, my ability to pass any kind of a 'formed' stool did not return. My gastroenterologist prescribed Miralax (one daily dose) to see what would happen.
Surgery was also being recommended -- as the 'usual next step' for a person who has had multiple episodes of diverticulitis.
In the past, I had undergone a screening colonoscopy -- and had a repeat colonoscopy after the diverticulitis started. These were 'negative' for 'polyps' -- but did suggest that I had a significant 'narrowing' (stricture) in the sigmoid colon.
Using a daily dose of Miralax allowed me to pass liquid feces enough to avoid an 'emergency' situation requiring immediate surgery. (Also note: I have not had another episode of diverticulitis since I started taking the Miralax.)
But I was scheduled for surgery in the summer of 2007 -- to remove the stricture from my sigmoid colon. But two weeks before the surgery, I decided to get a 'second opinion.' I did this 'pro forma' -- not really expecting the second surgeon to 'disagree' with the recommended surgery.
But, to my surprise, the second surgeon (who was head of G.I. surgery, for non-cancerous conditions, at a leading medical school in New York City) reviewed my history and imaging studies -- and said: "You're not sick enough to have surgery. You aren't in any pain. You're playing tennis on a regular basis. Most of my surgical patients are very sick. I would not recommend surgery for you." (Or words to that effect.)
He did recommend that I have a 'barium enema' -- an uncomfortable, almost 'obsolete' imaging test, which, sometimes, can provide more information about what's really going on in the colon than the CAT scans or MRIs.
I canceled the sugery -- and scheduled a 'barium enema,' which confirmed the stricture.
I was -- and still am -- 'ambivalent' about whether I should have the surgery to 'fix' the problem so that I could have normal (formed) bowel movements.
Unfortunately, I have consulted four gastroenterologists since this problem began in 2004 -- and not one of them can say 'for sure' that the surgery will definitely fix the problem.
In fact, my current gastroenterologist did an additional test that I had never heard of, called 'anal manometry' -- which measures how well coordinated your rectal and anal muscles are when you are trying to have a bowel movement. This test suggested that I have 'dyssynergic defecation' -- anal and rectal muscles that 'close down' -- in stead of relaxing and opening -- when I'm 'bearing down' to try to 'expel' something from my rectum.
Because of the results of this test, this gastroenterologist said that this condition might prevent me from being able to have normal bowel movements even if I did have the surgery to remove the stricture from the sigmoid colon.
Unfortunately, the only treatment for 'dyssynergic defecation' is 'biofeedback' -- which, in this case, you can't do by yourself at home. I tried one session at a physical therapy facility, but I didn't like the therapist or the concept -- and it's not exactly the kind of thing you can 'shop around for' to find a place that you like. (And biofeedback therapy for this condition does not help all patients.)
Last year, my gastroenterologist wanted me to have another colonoscopy. The patients in his practice can choose one of 3 'preps' for a colonoscopy -- one of which combines drinking a lot of Miralax and also drinking magnesium citrate. I chose this prep -- since I was already taking a daily dose of Miralax.
Well -- we didn't learn anything new from the colonoscopy. My stricture was still there, and I had no polyps. But I did gain major new insight into the wonderful efficacy of Miralax.
On my own, I tripled my daily dose of Miralax, which vastly improved my daily 'output' and sense of colonic 'well being.' I was so pleased, that I asked my gastroenterologist if he would officially change my prescription to a triple daily dose -- which he said was okay with him. (My co-pay for the generic is only $10 a month, no matter how much I take each day.)
I am currently feeling much better with the triple daily dose of Miralax.
But this whole situation continues to have one very major drawback -- robbing me, every day, of the ordinary 'joie de vivre' that comes with being able to ejoy eating 'ordinary meals' with family and friends -- not to mention being denied the usual pleasure of overindulging on festive, holiday occasions.
Because of my condition, 'fibre' is my enemy. Before I learned how to 'manage' my condition with Miralax, my weight went from about 150 lbs. to about 104 lbs. because I was voluntarily and severely restricting my food intake (more by 'volume' than by 'type' of food).
With experience, I have developed the following eating regimen:
Breakfast -- scrambled eggs (one regular egg and one equivalent 'egg beater'), one slice of rye toast, and one cup of tea.
Lunch -- tiny sandwich (half a hot dog roll) with a few pieces of white meat chicken and mayo. (Sometimes half or quarter hamburger, or similar quantity of food eating out with someone.)
Dinner -- NONE - NEVER
Snacks -- variously, candy bar, a few potato chips, cookies, ice cream
If I eat anything more than this, I can 'feel' my disgestive process 'slowing down,' or 'bogging down'. If I 'overindulge' one day, I have to almost 'fast' for the next two days to get back to feeling 'good' in my colon. That is, it takes that long for the Miralax to convert whatever I ate into 'liquid' form that I can eliminate.
Following my current regimen, my weight has remained pretty constant at about 130 lbs. (5 feet tall)
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I've never asked my gastroenterologist whether he has any patients with a similar problem -- who is using Miralax to avoid what would otherwise be 'emergency surgery' of the colon.
Maybe I can find someone like me on the internet?
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"Hereditary' clues? My mother, who also had a history of diverticulitis, had to have emergency colon surgery -- with a temporary colostomy -- because of a non-cancerous intestinal blockage. (She died from unrelated COPD problems.) In addition, a few years ago, a middle-aged nephew, who also had diverticulitis, had to have the same surgery and a temporary colostomy.
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That's my story -- and 'my ten cents.' Thanks for listening (reading). I welcome any comments.