avoiding colon surgery for stricture - 5+ years with Miralax

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mytencents
New Member


Date Joined Aug 2011
Total Posts : 2
   Posted 8/10/2011 8:05 AM (GMT -6)   
Hi,
 
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"?
 
- - - - -
 
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)
 
- - - - -
 
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?
 
- - - - -
 
"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.
 
- - - - -
 
That's my story -- and 'my ten cents.' Thanks for listening (reading). I welcome any comments.

sickie
Regular Member


Date Joined Mar 2006
Total Posts : 87
   Posted 12/15/2011 4:27 PM (GMT -6)   
I have Crohn's Disease and I have a stricture in my transverse colon. It was identified on a colonoscopy I underwent last month. The doctor could not get the scope through the narrowing. My bowels were functioning normally except that every 2 or 3 weeks I would experience extreme pain and swelling in my midsection after 2 or 3 days of not being able to have a bowel movement. I would begin vomitting and then the severe diarrhea would begin but I loved it when that started because I knew it would soon be over. Several times I had to go to Emergency because of the pain but every regular x-ray they took showed nothing. My GI said these symptoms are the result of partial blockages from the stricture and I will need to get surgery to remove the narrowed part. I really, really do not want to have surgery and so I am looking for any way to avoid it. I started to feel things "backing up" in there again last week and I came across your post so I bought some Restoralax (equivalent of Miralax for us Canucks). The first few days it worked and now I can feel it backing up in there again (minor swelling, major noises). I wanted to ask you where your stricture is located and if you have any of these symptoms, and basically I just wanted to chat with someone who is also against having surgery. :)

mytencents
New Member


Date Joined Aug 2011
Total Posts : 2
   Posted 12/15/2011 5:52 PM (GMT -6)   
My stricture is in the sigmoid colon.
 
The last two colonoscopies that I had required the use of a 'pediatric' scope -- because the adult-size scope could not pass through the narrowing of the stricture. (It's important to give that information to any 'new' gastroenterologist that I may go to in the future.)
 
Because my stricture may have been caused by 'scarring' from repeat episodes of diverticulitis -- and I did not have any prior diagnosis of an intestinal disorder (such as Chrohn's disease) -- our cases might not be comparable.
 
I continue to do well with my Miralax regimen and very restricted diet:
 
-- 3 doses of Miralax -- all taken at the same time very early in the pre-morning dissolved in 8-10 oz of diluted grapejuice (with extra Splenda sweetener)
-- a very limited intake of food for breakfast and lunch (nothing at all in the evening)
-- two scrambled eggs in the morning with one slice of toast and a cup of tea
-- very small 'tea' sandwich for lunch with a few potato chips
-- lots of ice tea (my favorite beverage -- well sweetened)
-- lots of sweet snacks (soft cookies, candy bars, cupcakes, etc.) -- but keep an eye on your blood sugar
 
Make sure the 'ingredient' in the Miralax substitute that you are taking is actually the same active ingredient that is in Miraxla -- which is "polyethylene glycol."
 
When Miralax was approved for 'over the counter' status a few years ago, many other 'brands' started selling their own versions (all containing polyethylene glycol as the active ingredient). Most of the major chain drug stores in the U.S. have their own versions:  Walgreens, Rite Aid, CVS, etc.).  But if it doesn't list 'polyethylene glycol' as the active ingredient, it's not the equivalent of Miralax.
 
One of the major challenges is the ordinary 'social eating' occasions -- where you are in the company of one or more persons for lunch. It takes some time to develop the discipline to eat only a fraction of what is usually served with an 'entree.'  It's actually best to just order a 'side' item -- like a soft baked potato. (I avoid the evening meal entirely -- which means that I refuse all dinner invitations.)
 
In general, any meat other than small amounts of tender-cooked chicken is too much work for the digestive process to turn into a 'liquid' that can pass through your stricture.
 
All salads and fibrous vegetables are a no-no -- too much digestive work to process into a liquid.  (So make sure you take a good multi-vitamin every day.)
 
Good luck.
 
(P.S. -- I still have moments when I think I should consider having the surgery -- usually when I'm feeling 'cheated' by not being able to eat regular meals.
 
 
 
 

sickie
Regular Member


Date Joined Mar 2006
Total Posts : 87
   Posted 12/17/2011 11:57 PM (GMT -6)   
I am having a moment now where I am considering surgery. It is all backed up in there again and I upped my Restoralax to 2 doses yesterday but nothing happened. I did note that the active ingredient is indeed polyethylene glycol. I did everything I could think of today to get things moving (exercise, liquids, massage, heat application) but nothing has worked so far. I am hoping that tomorrow will be a bathroom day, lol. I am not experiencing any pain yet and that is a really good sign so I am optimistic.

Thank you so much for giving me the tip about the pediatric scope. I will ask for it next time!

I also have problems with the social eating aspect of my illness. If people do not know I have Crohn's, they think I'm anorexic. And my stomach is always making noises so people think I am hungry. I find that being at work is extremely difficult. I really do not want to tell everyone about my condition but so many things are based upon food that I just cannot eat. Especially this time of the year. And people are so demanding because they see I am really skinny and they try to force food upon me...it really makes me angry lol. But then I remember that they are only trying to help.
Diagnosed with Crohn's in 2000. Currently taking Imuran and Remicade infusions. Recently diagnosed with a stricture in my transverse colon. Trying to avoid surgery.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1955
   Posted 12/18/2011 8:51 AM (GMT -6)   
Well, for what's worth, having your colon removed and even just receiving a regular colostomy, would greatly improve your day to day lifestyle (eating, etc.).

However, I for one completely understand your hesitation about having surgery. Why? I had rectal cancer 12 years ago and needed most of my sigmoid removed (lowest part to the colon, where the stool ideally can collect and back up through out your day) and then about 15 inches of colon above this spot. I needed to a temp ostomy to recover with but ever since I was reconnected, my life has been a mess. I've been to two more colon specialists since then, first surgeon transferred to another city 1000 miles from me. So he hasn't treated me since I started with multiple bm's per day, currently I number about 20. Like you, in a completely different way, I know what to do to get the gunk out (if my stool consistency would remain the same I'd be a happy camper), but when I get into the putty stool stage, it goes on for days and I sometimes do a Fleet's enema out of desperation, to clean out the lower colon. It does seem to help. I take high doses of probiotics in pill form, a mild stool softener to help with stool consistency (pediatric dose, sounds as if this product would not even make a dent in your situation though) and a plain diet. Like you I don't always eat what I'd like to, I have a plain english muffin just about every morning (like your scrambled eggs), I feel so much better if I eat white rice, roasted chicken, or mashed potatoes, even salmon can turn me around.

The other two colon docs have recommended more surgery - purely elective on my part, not necessary in any way shape or form, just hopefully make my bm's easier to deal with. One said - get a J-pouch! The other said - have an inverted colostomy, down very low on my left hand side and I'd irrigate it once a day, with tubing and a bag you hang up high, infusing the colon with warm water. With this inverted colostomy (stoma would be flush with my skin, not raised), I'd be stool free for 23 hours in a 24 hour time period and wear a large bandaid called an AM Patch over the opening.

Ah, but the kicker is these are major surgeries and I had a major surgery 12 years ago. It was pure he** to recover from, very, very painful. More painful than labor and delivery!

Surgeons are often cut happy, they don't need to treat the patient after you've been cleared post-op wise, you are returned to your regular gastro for follow ups. There are days I want to call my original surgeon and say - what the he** were you thinking, leaving me with 10% of my sigmoid? Then other docs like my gastro say - but he saved your life! Yeah but I poop as much as a newborn baby now!

Sigh. I will be the first to say major surgery if elective should never be rushed into. Take your time and really research your options, I commend you for doing so already.
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg, twice daily + Probiotic: Renew Life/Ultimate Flora/Critical Care/80 Billion daily

kittyboo
New Member


Date Joined May 2010
Total Posts : 15
   Posted 6/17/2012 4:11 PM (GMT -6)   
  Just wondering  if anybody has found any permanent relief of a stricture in the sigmoid colon.  Mine is 4 to 5 centimeters up.  I am thinking  strongly of going  to Clear Passageway in LA, CA for help unless I find something a lot cheaper.  Surgery is out of the question as I know all it will do is promote more scar tissue and more strictures!   Has anyone found herbs or the like to help.  I just don't believe is what MD's offer and especially surgeons who love  to cut!   This problem began with surgery.  I had to learn  the hard way of how the stricture began in the first place.

koque
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/7/2012 4:58 PM (GMT -6)   
re: narrowing of colon
my GI Dr. has told me there is a procedure to  open the colon by using a balloon during a colonscopy. Check it out before surgery
 

Larasmom
Veteran Member


Date Joined Sep 2011
Total Posts : 676
   Posted 8/14/2012 9:21 PM (GMT -6)   
I am having that procedure done tomorrow. This will be my second time to try and stretch the stricture (scar tissue). The first time was three weeks ago and my GI still couldn't get the scope through (ped scope). So tomorrow we try again. If this doesn't work then it's on to surgery.....
39year old female with Crohn's disease in the large bowel, two strictures. Have only been on mesasol, asacol and pentasa. Prednisone twice and have now started Imuran (September 18, 2011). Started Humira June 2012. Stricture stretching July 25, 2012

I was diagnosed 1996, remission only during my one pregnancy. Married to an amazing man and we were blessed with a beautiful daughter in 2001.

Stuckinarut
New Member


Date Joined Nov 2012
Total Posts : 1
   Posted 11/22/2012 7:30 PM (GMT -6)   
Three years ago, my doctor cut my colon accidentally when he was doing a colonoscopy. Emergency surgery to repair, which left me with four abscesses. With antibiotics the abscesses healed, but I was now left with a colon stricture. The colon stricture gives me pain on a regular basis, sometimes overwhelming, sometimes mild. I also get constipation and diarrhea on a regular basis. Lately I have been having fecal incontinence resulting in my wearing Depends at times. Two other doctors have tried to complete a colonoscopy since that accident three years ago. Both failed to get beyond the stricture. Now I am going to a specialist in a larger city who tells me he is certain that he can complete a colonoscopy using a scope that is smaller even than a pediatric scope. He says if he cannot get through the stricture, he will inflate a balloon in it and try to stretch the stricture open. I don't know what to do. Anyone out there have advice?
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, October 23, 2014 4:14 PM (GMT -6)
There are a total of 2,249,633 posts in 250,251 threads.
View Active Threads


Who's Online
This forum has 157466 registered members. Please welcome our newest member, hmtalk.
485 Guest(s), 29 Registered Member(s) are currently online.  Details
schimbare, MissGigi, funnyplay, sashi, PeterDisAbelard., LymePickle, greyfox, Guardian7, zengrrl, atoska, Park12, chicagobulls11, Todd1963, Tudpock18, j1ayjay, Redo-grandma, WAORGANY, Char999, InTheShop, Old Mike, paulroy, Munch, jf0310, pinky107, Dragonflydreamer, herefishy2001, Katmom, Squirm, Sunny13


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer