Miralax after Colectomy

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frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 6/25/2011 7:47 PM (GMT -6)   
This question is to everyone has had a total colectomy from colon inertia that still needs a laxative!
 
So, I am short of having a total colectomy!  I am still having problems letting out the gas and stool, or I feel it is down there, but I can't get it out.  Right now, the doctor told me to try and take miralax once or twice a day.  I never liked that stuff before when I had my colon (plus it didn't work); however, what are your experiences with it without your colon if you still need something? 
Does it help?
Do you have problems drinking it?  It has made me feel full before!
What do you mix it with?
When do you take it?
Any advice it greatly appreciated b/c I have read some threads on here how it helps people now, since they don't have a colon to get them having a bowel movements a few times a day to before when it was never! 
Thank you!

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/25/2011 10:17 PM (GMT -6)   
Hi there,

I had a total colectomy just over 2 years ago, and I've been taking miralax 2x a day for the last year and a half. My colectomy (for colon inertia) worked well the first couple months and then it was increasingly hard for me to get the stool out of my rectum. I have pelvic floor issues. I tried prune juice, which worked but I hated it and it still didn't empty me completely. My doctor suggested miralax and I've been taking it ever since and can eat basically anything now.

I take it first thing in the morning. I mix a very small amount of metamucil (about 1/3 teaspoon) with it to give it a little orange flavor and to make it have a little form, otherwise it comes out completely liquid. It is still often liquidy, but seems to work better with the metamucil.

I also take it again after dinner in the evening. It does make me go several times for a couple hours after taking it, but it's better than not going at all. I tried it several times before surgery and all it ever did was bloat me. So far it's worked well since I don't have a colon.

I've written before that things aren't perfect, but it is so much better than before surgery. I used to go for a week at a time and then take massive amounts of senna to make me go....and sometimes that wouldn't work.

One other thing I do......if I'm going to be out somewhere and want to eat without worrying about how I'll feel, I take a lomotil and that will stop things for several hours. When I get home, I drink miralax and I'm good. My doctor said this was fine, My problem isn't that things don't move through me, it's that I can't get it out once it gets to the rectum. If I eat and don't take the lomotil, things will move through me and get to my rectum and I'm miserable. With the lomotil, things don't get to the rectum until a few hours later.

Hope this helps....don't give up. Surgery wasn't perfect for me, but at least I feel so much better.

Janie

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted 6/26/2011 11:58 AM (GMT -6)   
Kyle - just take the miralax - I'm not sure why you have a hard time with it.  It really doesn't have flavor.  I actually put it in my first cup of coffee in the morning.  I drink the prune juice in the afternoon and the MOM at bedtime.  I was only going in the morning due to taking the MOM at night.  Now I am going in the late afternoon or evening. 
 
I have found that I need to press on my stomach to go.  Since it doesn't feel good on the incision to press, I have folded an hand towel to press on my stomach so it spreads out the pressure. 
 
As you have been reading, none of us had miracles happen with the surgery, or we probably would not even be on this site looking for advice. 
 
My next step, if things don't pick up, will be mixing the miralax with the prune juice!  Look out!!!!

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 6/27/2011 5:51 AM (GMT -6)   
Janie,
Thanks for responding about the miralax.  I only asked about it because it never worked for me in the past, but of course, that was when I had my colon.  The miralax just made me feel bloated, full of gas, and I could never expel anything, and I see you felt the same way.  It was torture.  Sat. night I mixed miralax with my fav. kool-aid crystal light, same thing Sunday morning after breakfast and before bed.  Last night, while I was sleeping, I let out some stool in my underwear (yikes!).  I felt like I had to go, but not.  Did wake up this morning, moved a little bit, and got out my best stool so far by myself in a little while.  Still feel rumbling right now, and could let out more.  So, we will still how this week goes because yesterday I still had to use a suppisotory a few times to relieve some stool and pressure I had.  I just hope things get better, and I can manage.
 
Nanci, thanks for the suggestions, too.  I was thinking last night, too about magnesium pills.  All these things never worked for before because of my colon.  Have you thought about just taking magnesium pills if you don't want to choke down the nasty mom.  I have heard it works pretty well, too.  Like I said, right now, I just going to keep on the miralax a couple times this week and see how it goes at first. 
 
Thanks everyone.  This website it is sooo helpful!!!  :-)

fitgal
Regular Member


Date Joined Mar 2011
Total Posts : 157
   Posted 6/27/2011 5:54 AM (GMT -6)   
Kyle - sounds like you might have rectum issues. The next time you see your doctor you might ask about physical therapy. Mine mentioned that we'd discuss it when I see him in August.

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 6/27/2011 6:01 AM (GMT -6)   
Hi Nanci,
I see we are on at the same time.  Yeah, my doctor doesn't get it with the rectal issues right now b/c both of my hospital stays, I get discharged, and my bottom shuts down.  It is really frustrating, and annoying me!!  He did a defecography before my surgery, which showed it was normal, so that is why he doesn't get it.  The nurse talked about doing an anal manometry test, which I haven't had in the past, and then maybe undergoing some biofeedback.  As far as I know, she has scheduled an appt. for July 18th, and that is with the nurse practioner in the office.  She is the one that helps people with the pt and biofeedback.  I do have to call the doc's office today, and we will see what type of tests that they want to have done again.  Plus, I still have to go back next week.  They still left this awful picc line in me incase I have anymore problems, since it seems I am prone for landing back in the hospital all the time and getting sick.  I just wish things happened everything worked like a charm, a miracle, and things were instantly better!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/29/2011 9:30 PM (GMT -6)   
Kyle, Why the picc line? do you vomit and are unable to hold down food? Do you have small bowel adhesion obstructions or still some ileus? When was your surgery? Have them check your pudental nerve terminal latency and anorectal manometry too in addition to the defecogram. There are many things that can make a rectum not work even if it is the small bowel attached to it now and not the colon. People seem to have very different outcomes from the colectomy surgeries. Someone on here by poster name of Boat had similar experience to you and he is contemplating an ileostomy last I knew. I really feel for you. But keep trying what the others' suggested. IF you do need the ileo, it's not the end of the world, so hang in there. PRayers for you, Rosemary

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 6/30/2011 7:18 AM (GMT -6)   
Hey Rosemary,
Well, the picc line was left because from the 1st two hospital stays I got really sick.  The 1st time when I had my original surgery on June 2nd; I got discharged and then I got very sick; picc line was out.  I could not produce a bowel movement at all; I was passing gas, and I felt like something was there, but I just couldn't do anything.  Also, my abdomen was full of blood.  Stool and blood caused for a very distended tummy!  I felt like I couldn't stand up straight!  I had a hard time keeping food down.  I didn't throw up, but I just kept on burping, burping, and burping; nausea, and felt like I was going to vomit.  The surgeon did a ct scan with contrast thinking I had a possible leakage anastomsis, so I though I was going to get an ileo.  However, emergency surgery a week later on June 9th, rectum was narrowed for some reason; they dilated that; put j-pouches on me; an ng tube; and tried to get all the blood out of my abdomen.  I felt awful!!!
 
So, the second hospital stay I wasn't really allowed anything until my bowels woke up.  The doctors were being extra careful this time.  Finally, when my bowels woke up, as the first time, I thought everything was going through me.  They left the picc line in me just in case just because I am thin, and when I get constipated; I get very sick and nauseous, and then have a hard time eating because I just burp; it is like my gas comes upward most the time; gas only comes at spontaneous moments downwards. 
 
When I got discharged the second time, a few days later, I just did not feel right again; started crying and was getting constipated again.  I did not know why my bottom kept on shutting down.  I was burping a lot again; getting awful heartburn with only taking a few sips of a drink and few bites of food.  They moved up my doctor's appt. earlier for when I was suppose to get my staples out.  The surgeon was getting concerned again, so I was readmitted for the third time.
 
The third hospital stay was a wasted trip!  Plus, the insurance company did not want me in there that long because they did not see a point I guess according to utilization review.  I thought the doctor was right away going to a scope on my to check my bottom.  However, he didn't!  I just a enema finally a day later, then a magnesium citrate bottom to get me cleaned out.  They just did a KUB on me, and the doctor said everything looked fine according to a person without a colon besides stool being in there.  Again, they left the picc line in me again b/c if I get sick again, they want me a tpn because like I said I get nauseous.  I was just discharged by a quick rectal exam on the night I had the citrate bottom (bad timing), discharged on heartburn medications, and the instruction on using fleet enemas and miralax at the time.  So, the picc line was left in me again, just in case, I start feeling nauseous and sick again; I am suprised when I get that I way I don't throw up.  Of course, I feel I have always been more a dry heaver; like I have a fear of throwing up.  The other night I did feel me puking upwards a little soup.  Yucky!
 
This past week; I have been doing better with keeping food down, and I have felt better about that.  As far as my bowels, I have been trying the miralax since Saturday, and I am still not sure about it.  I think it sorted makes me feel the way I did with my colon, not as bad, but just a little full and bloated for some reason.  Of course, I still think my tummy is a little swollen, too.  I still have been using a suppistory everyday.  I have moved my bowels by myself at times, but it still feels like it is hard to do at times, or I am walking around, I feel pressure down there, but then have to work at getting it out.  Last night, I am not sure if it was something I ate or not, but I had an awful gas pain that I couldn't let out.  Then, finally later, I started passing gas, and all during the night I passed gas here and there, so that is good.  Woke up in the middle of the night, and passed a little stool.  However, I just feel like something is still not right.  It necessary does not have to be a lot of stool at one time, but it is just like I feel pressure down at my bottom, and I just can't do it!  It is really annoying!  Like I said, I can at times, it just takes work, or sometimes I still don't have that awww, I feel better, or couple nights I guess I though about a bowel movement in bed, and I had a little leakage in my underwear!  Whoops!  What do you think?
 
Right now, I am scheduled for an anal manometry test on July 18th because I didn't have that test pre-surgery.  Also, the doctor talked about starting some physical therapy, biofeedback.  The surgeon told me right now he thinks that maybe all these years of not going and things not reaching down there; I don't know how to have a bowel movement; however, I still feel like I am getting a little bloated and full of gas at times that doesn't what to come out.  I know it is still early from surgery, and some foods I have to go easy on right now.  I am just a little frustrated b/c I know I don't want use suppistories all the time just relieve some extra gas and stool.  Also, I just really hate laxatives; I just hate them.  I still think they don't agree with me.  One thing that doesn't bother me is colace, but I really don't know if it does anything.  I am keeping a journal of foods I eat right now, my bowel habits, the pressures I get at my bottom (whether I struggle to get it out, or get it maybe okay).  I just know when my bowels woke up both times at the hospital it was like everything was moving through me with ease, and I thought I would be wanting an immodium now like the doctor orginally thought.  Anymore suggestions is greatly appreciated!!  Maybe I just need to experiment so more, but I just know by the end of the summer, I really want to get this straightened out, or maybe I am complaining about nothing.  I don't know! 

Post Edited (hurtboy) : 6/30/2011 7:22:17 AM (GMT-6)


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/30/2011 9:11 AM (GMT -6)   
WOW Kyle, have them do a gastrograffin enema to check for stricture. Do you have internal J-pouch or just small intestine attached to top of rectum? Rosemary

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 6/30/2011 10:09 AM (GMT -6)   
Yeah, I have been through a lot.  Plus, I had a surgery in Feb. when they found I had an extra long colon, I kept on complaining of this pain on my left abdomen of trapped air that wouldn't come out.  My colon did not want to propel outwards.  Even laxatives didn't make me feel better; I did, but didn't.  In Feb., I had a laprascopic left hemicolectomy to remove a kink; really an unecessary surgery, but I was dealing with doctors here in southern illinois, not a colon-rectal surgeon.  Only removing part of the colon was not a cure for colon inertia, so after that surgery, that is when I found this website. 
 
I called the doctor's office again this morning to voice some concerns.  For now, the only plan is the anal manometry test.  I guess we are still going with that something might be wrong with anal sphincter muscles.  Like I am walking around sometime, I feel pressure down there, get to the stool, and then nothing, or I want to instantly to come out, or I can't relax.  I just keep hoping things get better!  I do have an appt. next week the doctor, too for a follow-up.  I will prob. get the picc line out then if I keep nauseous down.  Just wish my surgeon was closer.  It is a 3-hour drive for me, which is a pain.
 
For now, yes, I just have my small intestine to rectum.  On the second hospital stay, those pouches, they were dangling outside the side of abdomen with fluid of blood on them.  I got them taken out the day I got my ng tube out, 5 days later from when I had my second surgery.  Keep praying for me!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/30/2011 8:50 PM (GMT -6)   
Kyle, yeah you have my prayers! If they did a defecogram and found you had non relaxation of the puborectalis muscle you could get PT and Botox shot before going to an ileostomy. The anal manometry test will likely indicate that you need a defecogram. I would still pursue the gastrograffin enema xray to see if you have a stricture at the anastomosis. Good luck, Rosemary
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