I would like to reply to Sarahs note here, but can not get to it.   Where did her request go to.  I can not find it.

Linda 

Hi Linda,

Let me start a new topic for the DTC so this thread doesn't go off-topic. 

I'm not sure which message from Sarah you're referring to on the forum, but a "Sarah" has posted several comments on various articles. 

Depending on what I eat, I usually empty 10-15 times a day - always liquid.  I try to have last meal no later than 7 p.m. and give it 6 +/- hours to process and transit out.  I take 2 Lomotil before going to sleep and that really helps slow down "production".  Even with Gas-X, I still have ballooning, though.  I have filtered pouches, but also put on EZ Vent.  Filters don't really work for some reason, even when they are not clogged.  Normally if I wake up, I will find intense ballooning and just release the gas and go back to sleep.  I also use Lomotil when going out and cut back on intake.  I do have to eat, since I also have glucose intolerance/pre-diabetes and take medication for that with food.

Kathy, are you dehydrated with all this liquid output?  I am = 3 x I.V. =12-14 pounds of fluids per week.  Looking for help-- now for the glucose intolerance goes, what do you eat or don't eat with this issue?

I am 99% going towards a new medication of Gattex.. injection new drug.. heard of it? Suppost to help me with keeping fluids and nutrition in longer so I can absorb these.  I don't have gas. Not to much anyways. Lomotil never helped me went to something else - higher dosages. I know my in my support group said and do as I, to keep gas from in our stomach to avoid liquid outputs, and gas.  For the Gas, eat crackers 4-5  at time during the day and before going to bed. ITs a war of the worlds at times huh?   

I empty about like you-- Liquids mostly happen later afternoon 'till morning. 

Kathy, do any of your meds have the side effect of increased bowel movements or changing the consistency? Frequent, liquid output must be a huge challenge for you - the gas on top of that must make things even more difficult :( 

Not really -- my meds affecting liquid stool.  Some foods cause more gas, though.  Some meds I have taken for years.  Like I noted before, the area of the small intestine that was taken is where bile is reabsorbed back into the digestive system and bile is a component used to help break down the foods.  If not reabsorbed, it causes the liquid output.  Also, taking the Lomotil (up to 8 a day--2 at a time) helps slow things down between passing the effluent, but does nothing to help solidify it.  At least with my noisy stoma, I no longer have the side-effects of diarrhea 8 to 10 times a day -- hemorrhoids, anal fissures, generalized butt hurt, etc. on which I have had many surgeries, also.  Last surgery involved cutting the anal sphincter muscle - thus NO CONTROL, just unwanted surprises without notice throughout the day.  I finally took heed and relented to my GI surgeon's advice and had the stoma surgery.  Luckily, for the past 25+ years I have been able to work at home as a medical transcriptionist - bathroom only 5 steps away from my computer setup.  I am now retired (yeah) and it has taken a while to get the right ostomy setup that works for me.  Mission accomplished with the Coloplast products.  I average 5-7 days with all their products so far without leakage or skin breakdown.  In fact, after the first time I tried them, all the skin breakdown cleared.  My life as a depressed hermit is now gone and I am beginning to remember what "normalcy" feels like - or close to it.  Your sites have really gotten me through all this and I will forever be grateful to you.  I still send for different company samples and keep trying to get the absolute best system for me.  Latest one I ordered is Braun 2-piece.  They said the 1-piece will not be available until second half of 2018.  TTYL.  Again, thank you for all you do. :) 

Kathy

Marcie, I don't have a problem with dehydration - I drink loads of fluids throughout the day.  Haven't heard of Gattex, will check it out.  The best way to control things is time I eat and knowing transit time is about 6-8 hours.  I have to be careful not to go through low sugar episodes - especially in the mornings if I have things to do.  My meds require taking food with them, too.  I have whittled my coffee consumption to 2 cups a day.  You can take anything away from me, except for my morning java.  As long as I take my Lomotil with it, it seems to be controlled and gives me time to do what I have to do and get out of the house.  I decided that gas is just something I will have to put up with.  Sometimes Gas-X type products work, sometimes not - depends on what I eat.   Hang in there and keep in touch.  

Kathy

Hi Kathy, So happy that your not dehydrated as I . I do se some people at my support group that have the heavy liquid outputs and they are not and then again a few are and one takes injections of Octreotide 3 times a day-  I was given these injections of this in the hospital last year.  Hurt like hell and didn't do a thing for me.  My measured output was totally off the charts. THE Octrotide injections are an oil base which is the major cause of the pain.. The Gattex is I injection and not given into the mussel like the Octreotide.  Gattex is given like insulin injection under the skin. Another learning process. But I talked with Barb on this and she told me it was not painful  etc. as she needs many insulin injections per day.  Gattex is an man made acid form.  So I am sure it will bother me.. But it is not a thick form like the oil base.. Your input on this type of injection will be of importance to me and any given information of being a pro. like Barb. I will be taught this by a nurse that will come to my house when decided on this next adventure of mine. The text book goes just so far know what I mean? It is the experienced patients like us here of being an ostomate is so helpful and get ideas to make us a happy camper during our trial and errors.. Everyone is different.. But personal advise is more helpful than that stupid text book crap.. 

I am thinking real hard for missing 1  day of infusions for dehydration to 2 days a week and see how I do.. I am now wondering if 3 times a week of 4 pounds each of fluids pumped into me if that is making more liquids.. ??????  I think my body is getting used to this amount and may depend on so much and NOT letting  my body work on a half assed ?? I think it is time for a try out... As in any medical situations one must ease off slowly.. Including these  many fluids.. Your GAS?  When you eat, try NOT to gulp in air.. When I eat and have a mouth full, I let some air out through my nose or mouth before swallowing.. This has helped me.. Being us, everything is a different way of chewing, swallowing, drinking.. A habit that I/we/you must learn to notice on a reg. basis.. Then it becomes a normal.. 

So, as I proceed in a few different areas of liquid outputs and MANY empty's per day, I truly hope that I can become affective to help others in this matter....... Be well, M. 

Thanks for all the information.  I never was an "air gulper".  The gas is just part of the digestive process -- more in some people than others according to my MD and what I eat.  It is something I have learned to live with and now, having discovered Coloplast systems, I don't have leakage problems when pouch is full of air or liquid or combo of both.  Their systems are strong - so I can handle that.  Thank the Lord for the Osto EZ Vents.  Just wish they made a larger size.  I am checking with local hardware stores -- if there is a larger venting system that would work with a pouches.  Nothing so far, but I am like a blood hound and won't give up my search. 

Some day, I am hoping my circadian clock straightens out.  I worked over 30 years night shift and have been retired 3 years and still am up all night and sleep all day.  My MD has tried countless sleeping pills. muscle relaxants, variations of Benadryl, melatonin, etc.  I refuse to take any opiate-based narcotics.  Next will be the sleep study clinic and as a last resort, hypnosis.  Like I said, I am like a blood hound on finding solutions, no matter how long it takes. 

Keep in touch and again, thanks for your comments.

Kathy

Kathy, time" to change your daily routine.. Don't know how old u r, but work your butt off inside the house, get into spring cleaning.. paint a room.. Paint is cheep and makes an improvement not only to your home but your eyes, and satified -sp-that u did something and this will make you tired.. Then when Spring comes, your outside.. Fresh air, plant a few flowers or herbs..... We cant do a lot of hard labor like raking etc.  so start slow,  Watch a late show..  mess up your mind clock!! No coffee after 3 pm. New normal and new life.. Good luck!!  M.

You will find you will sleep better and if you retire later, the last empty should pretty much last you a good nights sleep. Work at this.. 

Ha, would love to do all that.  I had a stroke last year and so mobility is limited.  I never drink coffee after 11 a.m.   I do get out now that I have my stoma output under reasonable control, but can't do a lot of activities I used to.  The hardest thing I ever did was give up horseback riding.  I donated my quarter horses to the local therapeutic riding center and now can get out there whenever I can.  I work the desk/phones and try - when feeling up to it, to groom one of the mares I donated.  Funny how animals know when there is a disability in someone.  The kids who come to ride love her - she is steady as a rock.  She knows to stand still when I groom her, whereas before, sometimes she would dance around.  Luckily I am able to afford a lady who comes in to clean.  I used to love to garden - had a huge flower and veggie garden at my old house.  Can't get on the ground like I used to.  I really miss not being able to get around and do all the bending and lifting and planting like I did before - as well as anticipating the "fruits" of my labor.  I do have a "deck" garden that is modified to a perfect height and my nephew comes over to carry heavy bags of dirt, etc.  

Keep in touch and thanks for the responses.

Kathy

Kathymac, I use the Osto EZ vents when my filter goes gimpy on me. I use a short length of coffee stirrer to assist the venting since sometimes it can be hard to get the air out. I just clipped a bunch and keep them in an itty bitty mint tin.

Great tip - thanks!!.  

I only did mine two-three times a day when I got up in the morning and again before bed, and sometimes once in the middle of the night or day. That's because I couldn't do it for myself though, so my bag was always full by the time someone could empty it for me. My anxiety shot up whenever I was in a situation when someone had to do it who wasn't familiar with it, and sometimes that caused me to not tell anyone I needed help with it. In my earliest years of school I dreaded the middle of every day when my teacher would take me to the bathroom to empty. It was a painful reminder that I was different from anyone else, and not in a way you want to share when you're that young.

My heart goes out to you-----  being a child with this, and all that goes with this condition must have been just horrible..  I dearly hope that your more adapted now and hopefully the child years of shame etc. you went through has declined. This shame and the childhood worry CAN hold strong to a person. I don't know how old u are now, but have u been able to leave the past behind you? As you read on and pop in and out of earlier of this blog, you may have noticed that many ostomates do have a rather normal life.  Ride motor cycles, major traveling, woman even have babies.  Maybe you have some advise for others????? Best to you or new friend. M. 

Hi. See also the intro topic that I posted, but yes I would say this stuff had more of an affect on me than I thought. Kind of OT for this thread though...