Lack of motility after colectomy

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

nancyfa
New Member


Date Joined Nov 2005
Total Posts : 3
   Posted 11/13/2005 4:36 PM (GMT -6)   
Hi everyone. I am new here. My sister actually had the colectomy, but she is not a fan of computers, so I thought I might try to ask about her situation.
 
She has lived with basically an inactive colon for 20 or more years - has not been able to have a bowel movement for all of that time, no meds or foods worked, relied on enemas 3-4 times a week to clean out bowels. This all probably due to an ongoing eating disorder and some laxative abuse very early in the game.
 
She had a total colectomy (4/5 of colon removed, but that is what they called it) a few weeks ago, laparascopically. She was supposed to be out of the hospital in 3-7 days, was in 2 weeks. Very few bowle sounds, and 2 small episodes of diarrhea after ingesting fluids for a GI test. No blockages or other internal problems were noted, but she continues to be very sick after attempting to eat anything, and the cramping and pains are terrible. One day she had several bowel movements (very watery), the next day none. Still had pain and such after eating and even when she had not eaten for a while. In the hospital, she had TPN for a few days, but they took her off of it when she went home mid-last week.
 
We do not understand why she has not had some normal bowel function restored at this point, and why she is still in so much pain. She was on narcotics in the hospital, but finally got off of those a few days before she left, as they could also impair motility.
 
Is this OK/normal/acceptable? Any similar stories or ideas that I might pass along to her? Or referrals to where I might get more information? (All of the studies I have looked up refer to restoration of bowel activity within 3-10 days. It's been almost 20 for her.)
 
Many thanks.

saramarie
Regular Member


Date Joined Mar 2005
Total Posts : 75
   Posted 11/13/2005 8:21 PM (GMT -6)   
Hi--don't let your sister get too down, it can be a long healing process for the gut--my doc told me that our small intestine is used to talking to the colon and all the sudden the colon is gone is the small intestine just kind of freaks out and doesn't know what to do---so the small intestine has to over time learn its new job. Everone's body will of course react differently. It took my body a few months to be able to eat and go to the bathroom without cramps and bloating. I took Miralax starting a week after I got out of the hospital and now take a drug that speeds u[p the stomach and the small inestine called motilium (domperidone is the generic, I think) It's sold in Canada not in the US, but my doc in the US prescibed it anyway and it works great without all the gas and bloating that miralax causes.
Also drinking lots of juice and water can definitely help some people. I know Sunny D and apple juice have helped other women on this board--I drink cranberry or apple juice if I'm feel like things aren't moving and that usually does the trick. I think without the colon we have to drink a lot more water/juice--or we get constipated. I am not sure why but I know we get dehydrated more easily too.
Keep us posted, there are alot of women on here that have had total colectomies for colonic inertia.
Oh, what kind of diet did the docs put her on?
I think a lot of us drank Ensure or Boost or other nutritional drinks becasue eating was painful. Anything Liquid was easier..... I felt great for about 4 days after I got aout of the hospital, then all the crampming and pain started.

If you have time go back and read total colectomy parts 1-7---there is a lot of info.
take care and your sister too!

nancyfa
New Member


Date Joined Nov 2005
Total Posts : 3
   Posted 11/13/2005 10:35 PM (GMT -6)   
Thank you so much saramarie. I will go back and read those sections, and pass along this information to my sister. She was only put on a low residue diet, but not much specificity - really whatever works for her on that list. She said yesterday that she was tired of hearing from doctors - she needed to hear from people who have been there. I think she is right!

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/13/2006 7:39 PM (GMT -6)   

Nancyfa,
I have suffered with very similar symptoms to your sister.  Has she found things that work for her?  If so, can you share the information with me? I am 6 weeks post colectomy and I cannot eat very much or I get backed up. 

Thanks you so much!

Amey


nancyfa
New Member


Date Joined Nov 2005
Total Posts : 3
   Posted 8/13/2006 9:55 PM (GMT -6)   
They have worked out well, but it really took some time. Her bowels and stomach normalized quite a bit, and the condition she was treated for (no intestinal motility) has been corrected for the most part. She is very pleased with the results and is glad she had the surgery. But it really did take some time - the doctors for some reason are not always forthcoming or perhaps even aware of how long this recovery takes in some people. Best wishes to you.

mom23
Regular Member


Date Joined Mar 2006
Total Posts : 82
   Posted 8/14/2006 7:44 PM (GMT -6)   
Saramarie,  Can you tell me if you take the motilium everyday?  Is that kind of like Zelnorm?  Does anyone else take Zelnorm on a regular basis after their surgery?  By the way, it's good to see everyone on here again!!!! 

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/14/2006 9:41 PM (GMT -6)   
Mom23,
I have to take Zelnorm daily; however, it is not very effective. I have a lack of motility in my small intestines so I need something to increase the movement. I called my pharmasist today about Motilium and she said it is not offered in the U.S. I would love to find something that works better than Zelnorm.

Nonna
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 8/15/2006 12:31 AM (GMT -6)   

Hello, I am new to this post, but am a member to Total Colectomy.  I had mine 31 Jan 06.  When I left the hosptial 14 days afterward, I was having approximatley 15 bms daily, now I am down to 1-2 daily and they are solid.  I lost 20 lbs and have maintained it.  I still tire easily. The nurses told me I probably would always have bms the consistency of mud.  Somedays I have (d) and other days not.  I have decided that stress (have a stressful job) makes it more difficult resulting in only 1 or 2 bms a day and that is after I get home.  Just hard to go at work.  I am eating almost anything, but sometimes I over eat and get bloated.  I am staying off red meats and eat mostly chicken and fish.  My doctor also told me it would take 6 months for my insides to figure out what they are supposed to do and I have noticed they have slowed down.  I don't have the pain like I did before and I read from the other forum that Welch's 100% grape juice works for making you go.  I tried Zelnorm and Murilax, etc., everything before my surgery.  So I was hoping that I would never have to take those things again. 

saramarie:  How do you get the motilium?  Does it work better than Zelnorm and does it make you stomach swell and bloat?

Do you find that small meals are easier to tolerate than larger ones. 

Right now, life is wonderful and I have not felt this good in years.  Like I said earlier, I do tire easily still and seem to have more anxiety.  I think some of that is worry about how many bms I am going to have that day. 

Nonna (Sandy)


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/15/2006 6:33 AM (GMT -6)   

Nonna,

I have you trried adding a handful of dried prunes to your diet?  I find that if I eat a handful a couple times a day with 8 oz of water, I have more BMs.


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/15/2006 6:50 AM (GMT -6)   
Motilium is a nonperscription idea that is sold in Canada. You have to order it from a pharmacy over the internet. However, I am not sure if it is legal or not because it is not sold in the U.S. (This is just info from my small amount of research, I am sure there is better info on the web).

PS. motilium is no longer available. You can only buy the generic form.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/15/2006 12:50 PM (GMT -6)   
What about Gas-X?  Has anyone tried it?

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/15/2006 1:20 PM (GMT -6)   
Just a little more information on this topic...Motilium is a Prokinetic Agent which is used to treat clear stomach juices from the esophagus and stomach. Zelnorm is a different class of drug. It is a Serotonin Agent. It is used on patients who suffer from constipation. The drug acts to activate serotonin receptors in the gastrointestinal tract, thus increasing the movement of stools through the bowels.

So, Motilium and Zelnorm are not even in the same class of drug. They both work differently and are independent of each other. Does this mean someone could take both? I am not sure how they would interact together....the research continues....

Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 8/21/2006 5:37 AM (GMT -6)   
Hello There!  Nancyfa
 
I hope your sister is doing better since your orig post 11/13/05.  My experience is quite similiar to your sister. I also experienced colonic inertia for many, many yrs.  But no one wanted to treat me for it.  Years of laxatives over the counter and prescribed (Mirilax), and daily enemas killed my colon even more.  Finally, a cancer colectoral surgeon heard about my case from one of his colon cancer patients & set up an appt to see me & hear my story.  After extensive testing for approximately five mos, he told me he could make my life 95 percent better than what I have been going through. I had my laparascopic subtotal colectomy on 09/20/05 which ended up being the longest surgery he ever had (9 1/2 hrs).  Of course, I had to be the one with major complications, internal bleeding, blood transfusions, and emergency surgery the second day which ended up with open surgery after all.  To add to it, a hopefully temporary ileostomy.  Inaddition, TPN from 10/31/05 to the day of my reversal ileostomy 12/20/05.  Yes, my bms were also foamy mostly liquidity like diarrhea for months no matter what I ate or drank.  I had 10 bms a day and believe me with constant diarrhea resulting in a burning bum w/hemmorhoids it was painful.  I cannot eat everything like I used to or drink what I used to.  I am now lactose intolerant and all I can drink is Propel with calcium water like six 16 oz bottles a day.  Carbonated beverages burn my bum just like milk products.  I am a vegeterian not a strict one, I eat broiled, grilled, baked fish, salmon, lobster, shrimp, crab legs nothing with butter or creamy sauces.  I started to eat Butterball Turkey Breast with a little Smart Balance Light products such as Mayo, Butter, and Peanut Butter.  The key is to watch what you eat.  Start a daily journal note what works and what doesn't work.  Then go back to what didn't work three or four weeks later.  I also took lomotil six times a day.  Now I don't take anything for diarrhea.  My BMS are beginning to get normal.  There are some days, if I don't have a BM, I get nervous, upset, stress myself out & say to my husband after all that I have been through, why should I have to give myself an enema.  Tell your sister to keep her body fully hydrated.  It certainly helps.  Just the other people in this forum said everyones body reacts differently & some heal faster than others and like us it may take a good year or more to get back to feeling 95 percent better.  Keep us posted on your sister's progress.  Best of luck to both of you!

Angel

saramarie
Regular Member


Date Joined Mar 2005
Total Posts : 75
   Posted 8/22/2006 2:38 PM (GMT -6)   

hi--it's saramarie,

here is the info on domperidone:

Domperidone(dom-PER-i-done) is a medicine that increases the movements or contractions of the stomach and bowel. Domperidone is also used to treat nausea and vomiting caused by other drugs used to treat Parkinson's Disease.

I take the domperidone before breakfast and then before dinner---I can't take it during the day or I run the risk of being in the bathroom too much at work.  I found that I can eat more at one sitting if I take the domperidone.  I bloat very easily, but is NOT from the Domperidone......zelmorn and Miralx gave me much worse gas and bloating and I used both after surgery.
 
I buy domperidone (Motilium) from a website w/o a prescription and it is really really cheap. I see that it can be bought with a prescription from Canada.  If it is OK to post a website will someone let me know and I'll post the site---it is a site my doctor recommended to me.
I still look pregnant after I drink a glass of water or eat something that is small--I think that is how I always will be with or without the domperidone, but i definitely notice the difference (in a bad way) if I forget to take the pill.  I also have strictures in my small intestine which keep me on a permanent soft diet......boring foods..
Hope everyone is doing well....
take care,
sara
 
 
 

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/25/2006 2:50 PM (GMT -6)   

Sara,

Because our symptoms are so similar, I had to check and make sure that the post was from you and not previously from myself.  My Dr looks at me like I am crazy when I tell her that my stomach gets distended after I drink water.  By the end of the night, I am wearing my hubby's shorts because my tummy is so bloated.  My diet is very small..5 prunes for breakfast, 1/2 cup gluten-free pasta (made from brown rice) with prune juice for lunch, and 1pc fish for dinner.  I still bloat and I have gained 5 pounds.  I run about 4-5 miles a day and I am 8 weeks post surgery.  My Dr started me on Reglan for motility but the side effects are awful - I feel loopy and dizzy.  Can you please email me the site you use at ameyduran@hotmail.com? I do not mind eating the same boring foods everyday; I just cannot handle the bloating.  Have you had any side effects or weight gain?

Thanks,A


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/30/2006 3:56 PM (GMT -6)   
Started Motilium today - 10mg.  Did you notice that you had more or less bms on this medicine.  I am not sure I see a difference but I am less bloated!! That's good!

ricky's mom
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/7/2008 1:00 PM (GMT -6)   
HI, it is a relief to know that I am not alone! I had a total abdominal colectomy on 2/7/08. My colon just did not move on it's own until I finally could not take the pain any more. Like many of you, my surgery took much longer than anticipated, recieved six units of blood, ended up with a PICC line to get TPN and lipids and an NG tube. An anticipated five day stay turned into two weeks. Now at 100lbs and 5"3" I am struggling to regain my strength and to find foods that I can tolerate. My poor BUM is "a mess" and often times I'd like to go to sleep in the tub with epson salt! Now, my major proplem-gas pain!!!!!! I feel like my gut is constantly percolating in slow motion, I am painfully bloated and live in sweat pants. I have yet to receive a full nights rest due to the constant percolation and several BM's during the night. My Dr. put my on reglan 10mg BID. I could not tolerate that so I reduced it to 5mg. I honestly don't think even that is helping! Help-how do I get rid of the constant percolation and gas pain? Joanne
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, August 29, 2014 7:08 PM (GMT -6)
There are a total of 2,204,520 posts in 245,384 threads.
View Active Threads


Who's Online
This forum has 155262 registered members. Please welcome our newest member, orkork.
387 Guest(s), 12 Registered Member(s) are currently online.  Details
Alcie, MamaLama, Jerry L., msmonte72, brendaboo, AML94, Lynnwood, adjust, What happened to Jen?, bania, ChrissySoul, Twitchman


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