Slowing ileostomy output

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Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/27/2008 5:03 PM (GMT -6)   
I have a new ileostomy that is two months old. I have a fast water output most of the time and have have been in the hospital for dehydration for four days three weeks ago. I'm taking loperamine 2 mg several times a day and it seems to help some.
 
Is there something else that I can do to help it slow down? I have tried all the food that is susposed to help, but it seems to go right thru me.
 
My Doctor is my GP and he has tried several things and they don't help that much. He is the only DR I go to.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 2/27/2008 6:00 PM (GMT -6)   
Ask your doctor about Lomotil. My surgeon gave me a RX for it incase I was emptying 10-12 times a day. Luckily I only empty 2-3 depending on the day. It's to help slow things down. Are you drinking coffee, juices, tea? Those tend to run through our systems quicker. Have you taken any Immodium?

Chicken, bread, cheese, pasta, peanut butter, and marshmallows(rice krispy treats) definitely bulk things up and slow everything down.


Do you have all of your small intestine?

Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/27/2008 6:56 PM (GMT -6)   
I'm thaking Immodium now and it doesn't seem to help that much. I eat most of the foods on your list and still emty the bag ten or more times a day.
AS far as I know I have all of my small intestine. Guess that is something I should find out.
Do you have an ileostomy?
Jan

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/27/2008 10:03 PM (GMT -6)   
i had that at first, not as bad as you but for the first month or so i was constantly empying, but it did slow down. I still have times where it will do that. If the immodium and foods aren't helping, then you should try to find a GI or a ET nurse that may be able to help you. Also, maybe ther eis something that you are eating that is causing it to be watery.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 2/28/2008 7:50 AM (GMT -6)   
Jan,

Lomotil might work better for you than imodium. That was the case for me and for other ostomates. It might not hurt to get an RX of that and give it a try. If that fails get an RX of codeine. You might try eating Metamucil fiber crackers. They are great for bulking up stool and absorbing the water content.

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


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 2/28/2008 7:50 AM (GMT -6)   
Oh, and you should probably be seeing a GI instead of your GP. GIs are much more knowledgeable on ostomys.

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


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 2/28/2008 9:54 AM (GMT -6)   

Hi Jan:

Nice chatting with you the other night, albeit briefly. Boy, can I identify with you! I was in the ER every other week with dehydration. The more I drank the more I emptied. It seemed that nothing was working for me. I was having IVs put in every week and was taking a liter of fluid a day. I now have a PICC line and I still take a liter a day. I know this is only a temporary solution and I am constantly trying to find ways to stay hydrated. I consult with a nepheologist who helps and I am seeing a new GI doctor tomorrow so I'll see if she has any alternatives and I will share them with you.

Like everything with the ileostomy, it is trial and error. We are all different and respond differently to different therapies. But input from others in the same boat sure does help!

I tried the Immodium route and it blocked me up so bad myu stomach was like a rock for two days, and I'm not even sure I absorbed any extra fluids after all that!

The important thing to remember is that there is an answer somewhere, we just have to find it! Till later,

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. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/28/2008 1:56 PM (GMT -6)   
This is Bob625 (her husband). She had Lomotil while in the hospital, but her GP doesn't want her to use it. Too habit forming in his opinion. We live up close to the Canadian border in the biggest town (population 5000) in the county and there's only one GI doctor in the area, so he's backed up with appointments. Her GP is trying to get her an appointment with the GI doc, but that'll be a montn down the road. In the mean time she needs to get a handle on pumping fluids out and getting dehydrated.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 2/28/2008 3:02 PM (GMT -6)   
Bob,

This is ridiculous! Lomitil is very safe for long term use ESPECIALLY WHEN YOU NEED IT! If there's any way you both could travel a ways to get to a GI that would be great. I know that is difficult, I live in a small town but if I needed a GI I would be willing to drive 2 hours to the big city to see someone. She really needs to see someone sooner rather than later and any good GI would make sure that happened. I wish you both well.

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


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/28/2008 3:40 PM (GMT -6)   
Sue,
With my insurance I have to threw my GP and get a referral, in order fom to pay for it. You know how that goes. Bob and I have decided too.But that could cost more in the long run, with test and all. Don't know how we would pay for all of it. Guess sail the house.

This has been such a hardship for us that I don't know how we made it threw it. I have been in hospitat two time for two weeks at a time and Bob had to stay in a motel. What a drag for him!

Going to my GP tomorrow and will ask for Lomotil. Did you take it for a long time? Did you have verry many side effects?

My stomach really bothered me while taking Loperanide. I still take it as I don't want end up in the hospital again.

My problem going away from home is empting the bag. Seems like I emty everytime I turn aroung. For the last seven months I haved stated home, only going to the Dr or hospital.

Jan

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 2/28/2008 3:50 PM (GMT -6)   
Jan,

Oh, sorry about that! I just get so darned mad when it takes so long to see a doctor. If only they could walk in our shoes for a day! Long term lomitil use is safe. I took it frequently after my surgeries until things slowed down. My guess it was about a year. I did not become an addict! You might also go to www.j-pouch.org and ask for advice. There are many ostomates on that site as well as a nurse. They are all quite helpful (not that everyone here isn't) and might have other helpful suggestions.

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


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/29/2008 10:40 PM (GMT -6)   
Sue,
Went to my GP today and I have an appointment with the only GI Doctor in our town. Hpoing he can help me with all of my problems.

Thanks for all the good advice. I have learned so much from all of you.
Jan,

Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/29/2008 10:40 PM (GMT -6)   
Sue,
Went to my GP today and I have an appointment with the only GI Doctor in our town. Hpoing he can help me with all of my problems.

Thanks for all the good advice. I have learned so much from all of you.
Jan,

Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/29/2008 11:37 PM (GMT -6)   
Hi Richarh,

First thing I thought when I saw Your post, was how I could identify with you.

LIke you I have been in the hospital and ER several times and was there again this past Sun. again for dehyration. I'm so tired of all of this that I wonder if it will ever get better.

I have been useing loperamide 2 mg and it helps a little. I eat all the food that they say will help thicken it up and it does't and it does't seem to help that much.

My dr has had me trydicyclomine and didn't empy the bsg for five hours. That kind of scared me. Now he wants me to try lomotil. Have you tried either of these? What all have you tried?

We have talked about a picc line with my Dr. Hope it doesn't come to this. Guess it would be better than going to the ER every week.

Do you ever get to go anywhere? The only place I go is to the DR. or the hospital. It has been this way for seven months.

Hopeing this darn thing will slow down one of these days so I can enjoy life again. It would even be nice to sleep at night with out getting up four time to empty the bag.

Really was nice hearing from you.

Jan,









Last week my dr had me try dicyclomine. Took in the morning and didn't empty my bag for six hours. That kind of scared me!You would think there would be something out there to help people like us.

Went to see my de today and he wants me to try lomotil. I'm tired of trying all of this stuff. What all have you tried?

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/1/2008 12:49 PM (GMT -6)   
Dicyclomine is the generic for Bentyl. I too take Bentyl... another maintenance drug for me. I have cut it from 3 pills a day to only 1 pill and I take that in the morning with my Imodium. I sure hope that helps you some. Slowing the spasms in the gut should help you to absorb some more fluids.

Also, if I am under a great deal of stress, it shows it ugliness in my gut.  Bentyl helps then as well.. 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 3/1/2008 3:31 PM (GMT -6)   

Hi Jan:

I went to a new GI doctor on Friday, she's the new one in my medical group. She had just reviewed my surgical notes from the many procedures I had during my various hospitalizations. She was a little overwhelmed by all of the complications I have been through. We didn't make much headway discussing hydration solutions but she did say they removed my ileo-secal valve (sp?) which might be an issue going forward (ileostomy reversal).

She knows my plan is to try the reversal in May so I don't think she was focusing too much on the hydration issues figuring that the reversal will solve that problem. I have seen a kidney doctor who really helped me to track my hyration and helped me get all of my numbers (creatin etc.) back to normal, mostly by taking the IV of Lactated Ringers. For a while I was getting a blood test every week just to make sure my #s were heading in the right direction.

One of the meds I take for a problem unrelated to the ileostomy is hydrocodone for sciatica. This pain killer tends to slow me down quite a bit. I do take Immodium, but, as I said in an earlier post, I have had some problems (pain & cramping) after taking it. I haven't tried Lomotil, Trydicyclomine or Loperamide.

I think my case is pretty extreme and most of our ostomates who have had hydration problems have resolved them on their own. Hopefully yours will fall into line soon.

I try to regulate my eating and drinking to manage my output but the condition doesn't stop me from living my life. I recently travelled to the Dominican Republic and I have returned to work. Yes, I have to empty a lot (probably 10 times every 24 hours) but I try and plan to not be far from a bathroom and I always empty when I get the opportunity.

I hope you feel better soon let us know how things progress and I'll keep posting on my adventures in hydration. The important thing is to keep plugging away. There's an answer somewhere!

Richard

 

 

 


Jazzism
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/2/2008 11:23 AM (GMT -6)   
Hi.

I actually was able to gain 15 - 20lbs. I found Immodium worked a bit but Codeine Phosphate 30mg. I took both 1- pills each to have the best effect. My output becomes like a soft/hot pudding.

Avoid surgar! It speeds the system up. I avoided fruit juices too, full of surgar. You still gotta drink water/tea/coffee. Just drink it before you eat. It'll just flush it through otherwise like spraying the dirt on your driveway with a garden hose.

Don't forget, the illeostomy is from your small intestine, which doesn't absorb much nutrients at all. Chew your food well, small bites and keep eating. I was eating easily every hour, particularly meats for the protein to help my surgery areas to heal. I had serious Chron's Disease surgery. Other things were tomato soup for the added potassium and pile on the salt for sodium on everything.

THis is all I can think of at the moment, hope it helps.

*edit* Why are doctors concerned about habit forming meds? It baffles me since you're not actually absorbing the full med to begin with. My Codeine turns into morphine in the body, now I got the reversal (Other issues like chronic diarrhea) I stopped the codeine (and the salt etc.) without a problem or adverse effects. IMO, you NEED the meds to slow your system down. In the hospital before I started codeine I went from 125 to 110 lbs, I started the codeine with immodium and I was able to go up to 135 lbs, TRIED to hit 140 but I couldn't get there. Worry about the habit issues after you have the reversal if there are any, you need the meds now, it's the most critical time.

Post Edited (Jazzism) : 3/2/2008 10:49:25 AM (GMT-7)


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 3/2/2008 3:15 PM (GMT -6)   
Jazzism,

Thanks for the information on drugs and not absorting. I never thought of that and it does make since. As you can see by reading my post that I have been having alot of promlems with fast output.

I have had two major sergerys in the past five months threw ths same scar that goes down the middle of my stomach. The last one was verry serious and lasted four hours. I had alot of scar tissue that wes wraped around my small intestine and had major blockage. That is why I ended up with ab ileostomy.

I stoped eating sweet, juice or anything with sugar. It is really hard to really know what to eat. I just eat the same things everyday.

Thank Jan,

Like you I lost alot of weight .Was 89 pounds and have had a hard toime putting it back on. Guess I'm about 98 pounds and need to put on alot more.

I'm going to a GI Doctor this week and hope to get some help from him. Will make sure I ask him about drugs not absorbing.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/2/2008 3:56 PM (GMT -6)   
Jan,
One of the reasons why I hesitated to have my large intestine removed was because I was concerned that the small intestine would not absorb enough nutrients for me to live a healthy life. After much research, I found out that the small intestine does absorb most of the nutrients we eat.

You can read more about it at http://en.wikipedia.org/wiki/Small_intestine

I lost a lot of weight while I was sick with Crohn's, but have gained it all back (and then some) since having my ileostomy. It's very common for your ostomy to be very active and watery during the first couple of months. It will slow down naturally as your body adjusts.

Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Jazzism
New Member


Date Joined Mar 2008
Total Posts : 12
   Posted 3/2/2008 5:31 PM (GMT -6)   
Glad to help. I was blessed to be at a hospital with an excellent ostomy dept. I had a number of conversations with them.

Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 3/2/2008 7:06 PM (GMT -6)   
Cecilia,

Thanks for the information. I need all the help I can get as I'm verry new at all of this. I have learned so much from these form that I feel alot better.

How long did it take you to get over sergery? I have always been a active person. Always went on the treadmill and lifted weights. Do you think I will be able to do that again. I have heard pros and cons about it.

Did you just have to have one seryery? Hope you don't end up with scar tissue like I did.
What did you eat to put your weight back on? I still don't know what I should be eating. I have been in the hospital two time this last Nov.23 witch they got unblocked and then again Dec. 23 due to scar tissue and that when I ended up with my ileostomy on Dec.29, 07

This is all so new to me. I can use all the help I can get. Feel like I'm not alone now.

Thanks Jan,

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/2/2008 8:11 PM (GMT -6)   
Jan,
I had the ileostomy surgery first, and the proctocolectomy surgery 8 months later. A proctocolectomy is when they remove your large intestine and rectum.

With the first surgery, I was in the hospital 21 days, because it took my stoma 10 days to work. Once it did, it put out so much that I became dehydrated. I was off work about 6 weeks total, which they say is normal after most surgeries.

With the second surgery, I was in the hospital about a week, but took 3 months off work to recover from that one, since it was much more invasive. It took even longer to start exercising again. You should definitely be able to walk on the treadmill and use weights again whenever you feel up to it. Just start out slowly.

I have gained my weight back by eating three meals a day, and I don't have any diet restrictions. I also do not have any scar tissue, which I hear is one of the main causes of blockages with an ostomy.

I'm glad you found this forum and do not feel alone. Everyone here has been a great help to me, too.

Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


BagGirl
New Member


Date Joined Mar 2008
Total Posts : 13
   Posted 3/3/2008 4:03 AM (GMT -6)   
Eat some bananas and carrots!
They'll thicken things up
29 yr. old female - former chrone's/colitis patient (8 years).
proud owner of a brand new ileostomy (5 months).
disease free and enjoying it.
 


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 3/3/2008 12:57 PM (GMT -6)   
Peanut butter sandwiches, rice & potatos help thicken my output.

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. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.

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