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Barbara
(@msbjlee)
Registered
Joined: 2 years ago
Posts: 447
March 12, 2019 7:00 pm  

 

Hi all. It's been awhile since I've posted anything here. I've been struggling with being down a bit but that is getting better. I went home from rehab about 2 months ago and was home for a week when my visiting nurse came took one look at me and said quote Barbara you are the most unusual shade of gray I have ever seen unquote. Then she looked at my wound and found that it was worse than the last time that she had seen it. So it was back to the hospital, another surgery, and back to rehab where I have spent the past 2 months. They tell me I may be going home in the next two to three weeks I hope. My permanent ileostomy was created on July 30th of this year so it has pretty much healed and  settled into a routine. Stoma and my skin is healed and I am not having any pain. My first question is about gas. I find that I am having to burp my bag about every 20 minutes or so. I am using a Hollister Appliance with a charcoal filter and vent but it appears it does not work very well. I've been trying to be careful with the food I eat to not eat things that make gas but apparently I'm being unsuccessful with that. I am wondering about using something like Gas-X. I'd talk to the to the doctor here at rehab and he told me that Gas-X works in the large intestine not the small and so it wouldn't do me any good. I'm wondering if any of you out there have ever tried it and if it works for you so I can prove the doctor wrong haha.

My next question is about sleeping with an ileostomy. I have tried pretty much everything I can think of to not have leaks at night. I have set my alarm clock for 2 hours, 3 hours, and four hours and still have leaks cuz I don't get it at the right time and I sleep pretty soundly. I wear a CPAP mask and that makes me sleep pretty soundly. I find myself at least every other night waking up with a real messy leak and don't know what to do about fixing this problem. I'm just grateful it here in rehab I have aids to help me change the ostomy and get cleaned up for the night and back to bed. But when I go home I'm on my own. That means laundry, showers and all of the problems that go along with getting that done in the middle of the night. What are your thoughts and experiences with trying to get some sleep. 

I am also wondering about the consistency of my output. As I said it's been since July that my ostomy was created so I kind of think things should be settling into a routine. But I find that the consistency of my output changes throughout the day. It can go from totally liquid to pasty ( about the consistency of shampoo. I am no longer using food to compare things to so that I don't go off of that particular food for months on end.) Then it goes back to liquid and it goes back and forth a couple of times during the day. I have tried adjusting my Foods and that doesn't seem to be helping or I'm not finding the one food that sets the consistency. Again any ideas that you have would be more than helpful. I don't know whether it makes any difference or not but I'm also diabetic and I'm insulin-dependent so I am taking insulin throughout the day as well. I haven't found anything yet it says insulin has any effect on the output of an ostomy but I may not have dug deep enough. Once again thank you very kindly for reading and I look forward to your experience in these areas

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


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LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 407
March 13, 2019 12:28 am  

Hello long lost Barbara....Linda here. I have tried and I do continue to this day taking Gas-X. Short gut syndrome and no large bowel, it is working just fine for me. When they made it maybe they had no one in our situation willing to try it. So they say large bowel gas only. I find it works just fine. Usually gets rid of the upper gas first, burping and then the lower gas that goes in the bag to be burped. I would say give it a try. Get the big box of 45 capsules. It took about three days for a bad build up to fully dissipate, but it started within two hours to work in the burp department. From there I took it till the box was empty just to have the relief as permanent as I could get it. I had to try something as not one thing I did made a difference but this has. Let us know how it goes for you if you try it.. Do you buy the osto ez vents? I plan to never be without them. Awesome compared to having to be in the bathroom every twenty min. as it was for me too. I could not leave the house for gas! Not any more. 

About the leaks, do you have a new scar or dip that is making difference for you? Have you tried the barrier rings? When I was having a lot of leaks I bought those Brava,Coloplast Ostomy Tapes, the number on the box is lot number 6342346 that I use. They also make a wider size then the usual now, and I found they at least controlled the area of the leaks. Gave me time to get in the washroom. If your eating hospital food is there something different that may be causing this?  I sleep only on my back and I take the time to use a warm hot water bottle to help the plate to stick better to my tummy along with the barrier tapes. As for a weaker consistency, I will take some Magnesium on a meal that will make my output risky enough to cause a blockage. But never more then four. My whole goal is to avoid a blockage like the plague, thus avoiding our 18 bed hospital with nurses who think they are God or just putting time in to retirement. If you want it thinner flow are you drinking more water. I think I drink a large glass almost every hour I am awake. I am Type 2 diabetic now. Since June, but I am only on Metformin, not insulin. 

Barbara, you would put cat to shame for the amount of lives you have in you! I am so glad your feeling better again. Keep up the good work okay! I will keep you in my prayers. THXS 4 PM.

 

Linda


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VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2163
March 13, 2019 2:19 am  

Barbara, thanks for updating us, although I wish it were under better circumstances. 

The nighttime leaks may be related to the high gas output , which sounds extremely inconvenient and frustrating as it is.

I don't think an appliance filter will help you in this case. You need to find out what's causing this excess gas. Could it be a food intolerance, or medication, or a functional disorder, or all of the above? There has to be a reason for the gas, but I think your GI would be the first person to ask about investigating it. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Barbara
(@msbjlee)
Registered
Joined: 2 years ago
Posts: 447
March 13, 2019 12:31 pm  

Thanks Eric,  I will follow up with him as soon as I am out of rehab.  It was good to hear from you!!

Severe rheumatoid arthritis, spondoloarthropy, polymyalgia rhumatica, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. 6 bouts of c-diff, failed fecal transplant. Complete colonectomy and ileostomy July 30, 2018. ENOUGH!!


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