new ostomy reversal member, looking for your expertise?

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firstrozier
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/24/2010 5:10 PM (GMT -6)   
Hi, All,
 
I am so happy to find this site.  I'm hoping to hear from some of you who have already gone through what I'm going through now and who can share some advice with me.  I've just had an ostomy reversal after 15 years.  My doctor warned me my intestines have a lot to remember and that it's been a long time since they have been called upon to do their job so that I need to be patient.  Most of the time I'm fine, but sometimes I worry about the full return of continence.  I want to  be able to go back to work, but 2 weeks after the reversal I still have only 7 seconds to make it to a bathroom once I feel a need to go.  That keeps me from doing anything that takes me more than 7 seconds from a bathroom.  I know it will get better with time, and I know that once I'm able to add fiber foods back into my diet those things will help.  I also know that 2 weeks after surgery is a very short time to be expecting much.  I'm just looking for feedback from others who can give me an idea on how long it will actually be before I can feel safe leaving the house?  What is a realistic timefram for hoping to be normal?  I feel very good after surgery, and feel very blessed for all I have.  I am willing to work hard doing all I need to do to be healthy and to make this a successful surgery, but would feel better hearing from those who have "been there done that."  Thanks for anything you can offer.   

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2764
   Posted 6/26/2010 9:32 PM (GMT -6)   
Hi and welcome! :-)

From what I've read others share, this sounds completely normal. They all seem to say that things improve over time, and they have fewer bathroom trips. Hopefully, someone who has been through this will respond soon.

Take care,

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3069
   Posted 6/28/2010 1:39 PM (GMT -6)   
Welcome to the forum! Sorry I don't have experience with your situation but I wanted to 'bump' your question back to the top for you!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


firstrozier
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 6/30/2010 8:56 PM (GMT -6)   
Thank you both. Doesn't seem too many here have this particular problem but i'll be patient and hope someone with info reads it soon. I'm so overjoyed to have this successful reversal, but some of the joy is taken away by my inability to leave the house. My employer has been wonderful over this past year as I've gone through these surgeries, but I don't know how long their patience can last.

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 823
   Posted 6/30/2010 10:35 PM (GMT -6)   
Two weeks is a very short time after surgery. It definitely will get better and better. For the first week or so my son had leaks at night and when he had to go...he had to get there pretty quickly. He is now 4 months post surgery and is going really well. He never has accidents and can easily hold things for 30 min or so when he feels the need to go. Most nights he sleeps at least 6 hours straight. gets up once and then goes back to sleep for a few hours. One thing he mentioned was how nice it was when he finally was able to tell the difference between gas and a BM. That took a while and, after he was able, the trips to the bathroom diminished greatly. He says that, at the beginning, a lot of trips to the bathroom only resulted in a fart.

I also don't know how well you are eating yet?....your diet can make a huge difference in frequency. Try to stay away from sugars for a while since they really can make the BMs more watery. Once the stool bulks up you will have a lot more control.

Has your surgeon suggested things like metamucil or imodium yet? Some surgeons, including my son's, want to wait for about 6-8 weeks before starting those but others start their patients earlier. Both can make a very big difference to both frequency and form.

Just try to be patient and relax. I promise it will get better!

firstrozier
New Member


Date Joined Jun 2010
Total Posts : 7
   Posted 7/2/2010 11:43 AM (GMT -6)   
Thank you for the response, Collicat.  It makes me feel better to hear that!  I am on a low residue diet but have just been given the ok to begin introducing some fiber foods.  Yes, I'm taking immodium, questran, fiber one, liquid opium -- ALL for diarrhea!  I am literally taking something every 1-2 hours; i had my ostomy for 15 years so my system truly doesn't remember anything about how to work.  I knew it would take a while (and was hoping for less than 4 months) but hearing from someone who's been there is truly a blessing.  Thank you.
 

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5413
   Posted 7/2/2010 11:50 AM (GMT -6)   
Expect improvement in weeks, not days. I imagine at 6 weeks post surgery you will notice a bit of improvement from where you are at today. I also recommend you keep a food diary. Some foods move faster than others and for each of us it's different. Try to eat foods with a longer transit time until you system adjusts. You really do need to practice patience in the first year; but it will get better.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Searcher144
New Member


Date Joined May 2010
Total Posts : 10
   Posted 7/4/2010 1:48 PM (GMT -6)   

Hi there,

You are only a short time out of hospital. Things should improve! For what it's worth, I found that "stodgy" foods like mashed potato and thick plain soups really helped after my reversal. Small meals, little and often. I also took an Immodium-type tablet. And I drink a couple of  probiotic drinks every day. These are simply what worked for me. Gradually then you can introduce other things you like. You have probably heard all this, but still, I thought I would mention it!

I am ten weeks post-op and still have the odd "watery" day, but in general I have gotten good bowel control.

 

Searcher, Male, 30

Ulcerative Colitis diagnosed 1996
 
Medication tried- Salazopyrin, Prednisilone, Immuran, Prednisilone, Pentasa, Prednisilone, 6MP, (Does anyone want to have the steroid conversation?), Infliximab, Humira.
 
2008- Subtotal Colectomy with end ileostomy formation
April 2010- Proctocolectomy with ileorectal anastomosis.
One or two Immodium a week now and 3/4 very manageable b/ms a day.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1955
   Posted 7/4/2010 6:36 PM (GMT -6)   
In the beginning I had 3 bm's during one meal. The second I began chewing I could feel one coming on. I joked I'd be taking my meals in the bathroom from now on, on an old TV tray table. But it got better. I still go a lot but I have more than 7 seconds to get there.

It does get better and more predictable.
- 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 + Renew Life/Ultimate Flora/Critical Care/80 Billion daily

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