Has anyone else got a high output stoma?

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

G.T.McGahon
New Member


Date Joined Apr 2008
Total Posts : 11
   Posted 5/1/2008 8:07 PM (GMT -6)   
Hi everyone,
                i was wondering if anyone else has a high output stoma? I have a very high output. Twenty five minutes after i eat food it is gone, and it is pure water. I have just recently been put on Laperomide (Immodium), 12 capsules a day. I also am getting regular B12 injections as that part of my bowel has gone. This explains why i am still only 6st 11. It really gets me down as if i need to travel anywhere or go into town (which isnt very often) i have to either not eat or think where the nearest toilet is. The longest im out the house is only ever an hour. I am up several times a night to empty my pouch. I hate it and am constantly tired. i only ever get 2 straight hours sleep a night. If in the very rare event that i sleep more than 2 hrs i end up with a leak and need to wake my husband,go in a shower while he changes the bed. he is fantastic. This is all at 3 in the morning. i know i cant be the only one, even if it feels like it sometimes. Hope im not moaning too much. Just never been able to speak about it until now. Sorry x
 
                            Grace XX
 
 
 
 
 
 
 
 
 
 
 

Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 5/2/2008 6:15 AM (GMT -6)   
Dear GT:

Don't worry, we don't consider it moaning we consider it sharing. I too have very fast output. I have experienced the all too constant trips to the bathroom and sleepless nights, The B-12 injections should help keep your energy levels up. I have experimented with diet and for me things like peanut butter, rice & potatoes help to slow things down. Also, I have found physical activity has also helped. In addition, as a result of the fast output, I have had difficulty staying hydrated. It's at the point where I have to take IV fluids every day. But, with trial and error, things have been getting much better for me as I hope they will for you.

This forum has a wealth of information. If you go back and read some of the past postings you can learn a lot. I did.

Good luck and keep posting!

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 5/2/2008 7:30 AM (GMT -6)   
Grace,
You can also try bananas they really helped me the most (even though I can't stand them). I would also suggest trying to snack on something everytime you drink in order to absorb some of the liquids you are taking in. I would try not to eat too late at night to help with the bathroom visits, but it didn't seem to work too well. I had no energy due to the fact that everything I ate came out within 1/2 hour, so I really feel for you and hope the B12 will help give you some energy and you can get out. Don't be afraid to post anything here good or bad, people will be here to help if they can.
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
Total colectomy August 10, 2007 -2nd step J-pouch formation -January14, 2008 -3rd step -April 14, 2008


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 5/2/2008 4:26 PM (GMT -6)   
I don't know how long you've had your bag, but it does take some time for things to slow down. Just do as the others suggested and try not to get discouraged. It will slow down eventually.

G.T.McGahon
New Member


Date Joined Apr 2008
Total Posts : 11
   Posted 5/2/2008 5:14 PM (GMT -6)   
Thanks for the replies, they are very much appreciated. I have had my illeostomy since 2004. I have tried everything that you all suggested. I have been told it is because i have virtually no bowel left. Instead of it being an end illeostomy i have a high one (at the watery part of the bowel) I have had to resort to taking immodium tablets and a high doseage of codeine phosphate in the hope to create constipation. The very thing that was the cause. I never eat at night. Its just very overactive,and never stops working. TThe new medication is fairly new and is a hit and a miss on how much to take. I must thank you all for replying.
Diagnosed with slow transit bowel  in jan 1999, 1st illeostomy in August 2004.
Reversal in 4th February 2005.
Adhesions operation 24th February 2005.
Peritinitis operation 26th february 2005.
 
Hickman line inserted into main artery 6wks later,7wks after that contracted Scepticemeia.
 
 
 
 


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/2/2008 5:15 PM (GMT -6)   
Grace,
I agree with all the above suggestions. I also have a high output, but whenever I feel down about that ,I think back to the days before I had the bag. On more than one occasion, I didn't make it to the bathroom in time. Then there were the times when an UC flare had me in pain and bleeding so much I felt like I couldn't take another step. I can handle "illie-jillie" and the bag.

One thing that I eat that really thickens things up (and I know ya'll say don't eat that!) is cornbread and hushpuppies.--lol --The output is so thick it oozes out the side of the wafer. I know better!!!
Jennie

nenagirl
Regular Member


Date Joined Nov 2005
Total Posts : 138
   Posted 5/2/2008 11:06 PM (GMT -6)   

G.T., 

I, too, have high output from my ilestomy due to crohn's disease (have had ileostomy since Aug. 2005).  I am still in the process of trying to figure out how to stay properly hydrated.  I can drink enough Gatorade (alot!!) to stay out of hospital but I have problems maintaining potassium, magnesium and calcium.  I do take potassium chloride orally and get monthly b-12 injections (and many other Rx drugs).  Lacking some of these essential electrolytes can really have an adverse effect on overall well being.  Although my surgery and ostomy healed fine and I have had minimal problems with my appliance, I also have not felt "well" physically.  The Drs. and I are still trying to find ways for me to maintain all of my electrolytes.  I, too, get up at least 2 times per night to empty and I make sure I don't eat before I have to go out in public and before bed.  I take codeine and lomotil to try to slow down my output...it does help somewhat but makes me nauseated and uncomfortable.  Slowly we have been able to work out some kinks.  I also only have a part of my small intestine.  The part that is missing (most of the terminal ileum) is critical for absorbing many needed vitamins and nutrients.  Because so much of the small intestine had to be removed, my stoma is actually on the left side of my body.  Dr. wanted to preserve as much as possible so he placed it there rather than on the right side (less distance).  Please make sure your doctor is checking for these critical electrolytes...some are not part of a "regular" metabolic panel and have to be requested specifically (like magnesium, b vitamins and others).  This may not help with the high output but may help with overall improvement.  I am sorry you are going through this and will keep you in my thoughts and prayers.  (sorry for the long reply!)

 

NG 


G.T.McGahon
New Member


Date Joined Apr 2008
Total Posts : 11
   Posted 5/3/2008 8:20 AM (GMT -6)   
Thanks for your reply. Hope this doesnt sound bad but its great to hear somenone like me. I have been on the same medication. Like you it is a hit and a miss on what works. The nausea is terrible. I dont work because of it. i live in Scotland in the uk and get disability benefit. I so want to be well and get back to work. On boxing day last yr i suffrered 3 seizures because of the electrolyite deficiencies. I am now on epileptic tablets as my body does not absorb any vitimins at all. I have zero energy and am very under weight. I see a dietician at least once a week to try different things to try and put weight on. My hospital Dr was talking of getting a Pic line inserted so as instead of hospital admissions,which can be from 1wk to 2 or 3wks of intravenis sodium and potassium at home. This would be great. As you will know there is no way you can eat anything when you have nausea. In the last 2 wks ive had only 3 full meals. This isnt good at all. please keep in touch and long replies are not a problem. Take Care.
 
GT x
Diagnosed with slow transit bowel  in jan 1999, 1st illeostomy in August 2004.
Reversal in 4th February 2005.
Adhesions operation 24th February 2005.
Peritinitis operation 26th february 2005.
 
Hickman line inserted into main artery 6wks later,7wks after that contracted Scepticemeia.
 
 
 
 


nenagirl
Regular Member


Date Joined Nov 2005
Total Posts : 138
   Posted 5/3/2008 10:49 AM (GMT -6)   

Grace,

I understand the feeling about knowing another person like us is dealing with some of the same issues.  My weight right now is at the very low end of "normal" for my size/height since 2007, before that I was underweight.  Most of my caloric intake is from Gatorade(electrolyte replacement sports drink), is this available to you in Scotland or maybe a similar drink?  Here (United States) we also have pedialyte - an electrolyte replacement intended for ill babies/children(but anyone can drink/buy it!!)  I have to drink so much Gatorade that it really dampens my appetite in fact sometimes I have to force myself to drink it.  I literally drink it steadily from the time I get up until the time I go to bed at night.  I, too, have nausea in varying degrees.  One thing I have found that helps w/nausea is pretzels eaten in small bites sloooowly.  My current obstacle is magnesium.  I have tried the oral supplements but my remaining digestive system is not able to absorb it.  My Dr. is looking into a possible transdermal patch.  Magnesium is not stored in the body like b-12 and some others so it is something that needs to be replenished daily rather than a shot monthly.  I have had TPN/IV fluids in hospital in the past and hope I don't have to "hook up" at home to get these vital nutrients but we will see.  My husband and children tell me I'm a "work in progress".  I wish the "progress" part would hapen soon! 

We have alot of similarities!  I am also on disability (through our government's Social Security).  I also receive a monthly disability benefit from my former employer.  I was initially diagnosed with Crohn's disease in Jan. 1980 (I was 19 yrs. old, married w/a 5 month old baby).  Within one year I was developing fistulas and had many outpatient surgeries for them.  I was able to work (thank goodness for sick days) until 1998 when I had my first "big" surgery - subtotal colectomy with anastomosis.  They removed a portion of small intestine (the terminal ileum) and almost all of the colon and resected.  I did go back to work for 7 months but was so ill I ended up on disability.  I see I have writen another short novel!  Please take care and keep us posted on how you are doing.

NG      

 

 

G.T.McGahon
New Member


Date Joined Apr 2008
Total Posts : 11
   Posted 5/3/2008 12:08 PM (GMT -6)   
Thank you so much for your reply. i am so sorry for what you are going through and so young. I am thinking about you. I do have a drink that i take each day called callogen which is around 4000 calories per 200 ml bottles. It tastes lovely it is strawberry milkshake like. I drink about a bottle a day. Ive tried nearly everything on the market here. I am very lucky that i dont have to pay for anything because of the nhs here. Please take care and lokk forward to talking to u here. x
Diagnosed with slow transit bowel  in jan 1999, 1st illeostomy in August 2004.
Reversal in 4th February 2005.
Adhesions operation 24th February 2005.
Peritinitis operation 26th february 2005.
 
Hickman line inserted into main artery 6wks later,7wks after that contracted Scepticemeia.
 
 
 
 


nenagirl
Regular Member


Date Joined Nov 2005
Total Posts : 138
   Posted 5/3/2008 7:36 PM (GMT -6)   

Grace,

It sounds as if the callogen that you mentioned is like what we have here in the States called Ensure.  It's a high calorie milk-like drink that is recommended for added nutrition, especially if you have a hard time eating solid food (which seems to be an ongoing problem for you).  This has helped me gain weight in the past and I still occasionally drink it.  The Gatorade I referred to is a flavored water based electrolyte replacement drink consisting of water, sodium, potassium and sugars (about half the sugars found in soda).  Do you have something similar available to you?  Maybe you could try this along w/the callogen as well??  This combination has made me feel much better although gaining weight was not easy and very slow going.  Maybe this is all old news to you but I thought it worth a mention.  Hugs to you and I hope you can find improvement soon!! 

NG


G.T.McGahon
New Member


Date Joined Apr 2008
Total Posts : 11
   Posted 5/3/2008 8:44 PM (GMT -6)   
Hi Nenagirl,
Thanks for the reply there is nothing similar here without a hospital admission. Dont know why. I will spk to my Dr and Stoma nurse about Gastrode and see what they say and i will let u know. thanx for the suggestion as i will try anything. Do you have to pay for ur medicines and stoma supplies?. The weight loss gets me down,as i think that plays a great part in overactive stoma. I am a size zero and hate it as no clothes fit me at all. Im sure people think im anorexic!!! Cant believe that girls diet to get to this size and dont realise that we have no choice. The lack of energy does my head in as i cant walk very far. All i want is to be normal again!
Diagnosed with slow transit bowel  in jan 1999, 1st illeostomy in August 2004.
Reversal in 4th February 2005.
Adhesions operation 24th February 2005.
Peritinitis operation 26th february 2005.
 
Hickman line inserted into main artery 6wks later,7wks after that contracted Scepticemeia.
 
 
 
 


nenagirl
Regular Member


Date Joined Nov 2005
Total Posts : 138
   Posted 5/3/2008 10:06 PM (GMT -6)   

Hi Grace,

Between my government disability (Social Security) and the disability from my employer all my ostomy supplies are covered.  I have a co-payment on the Rx drugs - I pay US$10.00 per Rx for generic, US$25.00 for name brand.  All but one of my meds is generic.  The co-pays add up to US$70.oo-US$90.00 per month.  My medical is completely covered.  Thank goodness for that as I know the full price for Rx and supplies is far greater. I really do understand about being so thin and not finding clothing.  I am a size 2-4 petite and anything smaller is very difficult to find.  I have had to buy clothes from the "girls" dept.  When I was at one of the lowest weights I had someone say, "I wish I had the same problem."  I realized they didn't understand the severity of the situation but I was speechless.  

Regarding the Gatorade...you could try googling it to get more info about availability and use.  It is available here at gas stations, supermarkets and wherever drinks are sold in many flavors.  The cost is about US$1.00 per quart (946 ml).  Just under US$2.00 for a bottle double that size.  Please let me know what you find out from your stoma nurse and Dr.  I'm hoping something is available to you "over-the-counter" (w/out Rx or hospitalization).  Gatorade is also available in powder packets to be mixed with water and has the same electrolytes in it.  Each packet makes 946 ml and costs a bit less than premixed bottled.  I keep a number of these packets on hand in case I run out of bottled.  I take Gatorade with me wherever I go.  So far, it has been the only thing that has kept me from being hospitalized for dehydration (again)...I learned that the hard way!!  I need to drink ALOT of it!  I would be willing to mail you some of the packets to try if you can't find something there.  

As far as being underweight...I felt horrible and weak...still do sometimes.  Hang in there and keep trying.  Gaining even a little weight can spark an appetite although as you know it is easier said than done.  Keeping you in my thoughts and prayers!

NG     

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 23, 2017 10:44 AM (GMT -6)
There are a total of 2,872,151 posts in 315,185 threads.
View Active Threads


Who's Online
This forum has 156678 registered members. Please welcome our newest member, MAUDEDSFWE.
384 Guest(s), 12 Registered Member(s) are currently online.  Details
Pohaku53, Lapis_29, hopenchange, Pirouette, Katey, magoo2, Fletch10, FlowersGal, Tim Tam, Tall Allen, Oriol, kellyinCali


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

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer