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tummybug1
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/12/2010 1:59 PM (GMT -7)   
please can anyone tell me if they have had a reconnection sraight to there bottom with no pouching and if they have would they recomend it my daughter is 16 she has had her total large bowel removed and as it is crohnes they cannot pouch but they said they still can connect buy just going straight down but in my eyes what ever is coming out of the stoma will just come straight out of her bottom with no controlover please help with some input with information with thanks
a very concerned mum   mad

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 1/12/2010 7:51 PM (GMT -7)   
if some intestine was removed, it is still possible to connect to the rectum if the rectum has been spared --has not been affected by crohns. I dont know what you mean by straight to the bottom. Is the rectum spared or not? The rectum is the short piece of intestine between the anus and large intestine. The anal muscles can still have some control. However this disease might return at the site of connection at some time later in life, so no guarantee the disease wont return.

tummybug1
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/13/2010 12:29 AM (GMT -7)   
sorry for the confusion they kept the rectum but it is fully desiesed with crohn she has just started on anulibum to try and calm things down she has had a bag on for three years and the control of the crohns is not good we were wondering if the connect would there be any control for her
thnak you for taking your time to reply
tummybug1

Gilda
Regular Member


Date Joined Apr 2009
Total Posts : 194
   Posted 1/13/2010 1:31 PM (GMT -7)   
I am not sure if I can be of any help but I will try. I don't have Chron's Disease but I did have a Sub-Total Colectomy in April '09. My small intestine is now connected directly to my rectum. I had this surgery after suffering from bloating and pain for years . . . usually within a couple hours of eating. In my case the diagnosis was "colonic inertia" and a severely twisted colon. Anyway, now . . 9 months later; I no longer have the stomach pain but I do get pain in the anal area because of having diarrhea anywhere from 8 - 15 times/day. It helps if I eat a lot of rice, mash potatoes, white bread, etc.. Also I have to mix powdered vitamins/minerals/protein into my rice or yogurt daily. I do feel a lot better now but this surgery can take months to recover from (I felt very weak for a long time). I really hope things go well for your daughter; she is too young to have to deal with these kind of problems. Write to me anytime if I can be of any help!

Gilda

tummybug1
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/13/2010 2:08 PM (GMT -7)   
to gilda thank you so much for your reply there is one question i would like to ask if you had the option now of having a illostomy bag or the connection knowing what you know now what would you choose and have you got any control over your bottom at all i know if you need to go you will need to go but can you hold for a little while ok
im so glad you are feeling a lot better
kind regards
lucy

Gilda
Regular Member


Date Joined Apr 2009
Total Posts : 194
   Posted 1/16/2010 2:18 PM (GMT -7)   
Hi Lucy,
I feel so bad for your daughter; she is just too young to have to deal with these kind of problems! I know that is not helpful and I am sure you have heard it before. I do think that she will probably end up developing a really strong character as a result of having all these health issues. I still hope and pray that she is able to find a solution for her problems, though, so she can live a normal life!

I am still happy with my surgery (sub-total colectomy with connection from small intestine to rectum). I feel much healthier, can eat more normally, have more energy, just feel happier in general. The diarrhea does limit me in going out for more than 4 hours at a time. I just don't feel comfortable having to use friend's bathrooms or even public restrooms when others are present. It is embarrasing to have diarrhea! I can (and do) take Lomotil, Immodium and Vicodin (for "drying-up" effect) about 1 hr. before I go out and then again before I go to bed. I have good control, it is just that the pressure sometimes builds up and it is kind of uncomfortable. I have to keep experimenting on when and what to eat if I am going to be away from my house (bathroom) for more than about 4 hours. There is one other bothersome problem after this surgery . . ."butt burn." I am not trying to be funny or weird, there really is such a problem after this surgery (maybe for life . . . I hope not). The stool that comes out will burn sometimes! My doctor said that the colon seems to put a protective mucous on the waste so that the acid and bile salts don't burn. Now I have to use Desitin or Vit A/D ointment daily to protect myself. None of this is fun, but I do feel healthier than pre-surgery. Write to me again if you need help!

tummybug1
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/16/2010 3:16 PM (GMT -7)   
to gilda what you have said is very helpful to know you have got some control is really good .we knew about the butt burn as the nurse explained this quite well its just really good to be in contact with some one that atually going through the same as my daughter one answer that was not quite clear was do you have any kind off pouch at all, and i know you said it took a while to settle but 4 hours is a lot better than i thought it would be i was thinking hourly visit so you have given us hope this end
email soon its good to know you are ddoing and contiue doing well
lucy xx

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 1/16/2010 3:38 PM (GMT -7)   
tummybug1~I am sorry to hear your daughter is having such a difficult time...I can fully understand the frustration in helping her to have quality of life!

I would suggest that you post your question on the Ostomies Forum (you can use the quick jump). There are many of us who have been in her position who might be able to help, too.

My only concern about a reconnection would be the presence of disease in her rectum. That could make things more complicated...have you gotten a second opinion from a C/R Surgeon? Does she have fistulas? If she doesn't have you heard of a k-pouch? some Crohn's patients can be candidates.

Gilda
Regular Member


Date Joined Apr 2009
Total Posts : 194
   Posted 1/16/2010 5:53 PM (GMT -7)   
Hi Tummybug,  No I do not have a pouch; it is a direct connection, small intestine to rectum.  My main concern for your daughter would be to check out if her rectum is working properly - I say this because you stated she has some disease there.  If the doctors think it's o.k. and will work properly then this surgery may work well for her!  I was just out walking my dog and I was remembering how for several months after the surgery, this was a difficult thing for me to do.  For the first 6 months after the surgery I always felt like I had to have a bowel movement, everytime I walked especially.  Now, things are getting better.  My doctor said that he has seen patients improve continuously for up to a year after the surgery.  I sure hope this works for your daughter!
 
Gilda 

tummybug1
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/17/2010 1:41 PM (GMT -7)   
hi gilda
after emailing and lisning to you things do sound hopeful the rectum is deseaed but at the moment thay are using adalimumab to see if this works and settles things down obviously there will be no choice if this drug does not work but we will see thank you again fir all the advice and the time you have spent replying to me i am really grateful

lucy xx

Gilda
Regular Member


Date Joined Apr 2009
Total Posts : 194
   Posted 1/17/2010 10:58 PM (GMT -7)   
Hi Lucy (tummybug), You are very welcome! I am so glad to be of help to you and your daughter! Please continue to post after you have made a decision about her surgery. I will be praying for her daily. I will pray for you also as I know this is very hard on you too. I have a son just a couple of years older than your daughter . . . . he hasn't had to go thru anything nearly as difficult as these types of problems, but even then I worry about him a lot! You seem like a really good mom. I wish the best for you and your daughter.

Gilda
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