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Anyone else having this issue?

Posts:102
 

Trying to find out what and why? I was wondering if this happens to anyone else. 
when I empty my bag sticky comes out. Like glue sticky. If it gets on my hands or anywhere else it's really hard to get off. In the shower,  if I shower bagless  it even gets on my legs and elsewhere. I've been going through this for months. I'm trying to figure out is it the adhesive in the pouch or is it something in my stool. I'm not thinking the adhesive because I've tried every bag there is and the same things happens. This has been going on for 11 months now and I have had an Ostomy for at least a few years.  It's really taken a toll on my quality of life. 

 
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Posts:2530
 

Hmmm.......glue sticky?  That's not normal.  If you have a problem digesting fat, you'll get that in your bag and it's hard to get off stuff. But that's more a slimy than sticky......like grease on your fingers after eating fried chicken with your hands.  If it's truly sticky......like it will glue two pieces of paper together........you should contact your Gastro and find out what's what.  Also note if it's all the time or only in the morning....or after eating certain things.  They'll ask you.  

;O)

Posts:102
 

Thanks Bob for the reply. It's actually sticky like glue sticky and it irritates my skin. Say like if it gets into my feet or leg when splashes happening from emptying.  I've been wearing gloves to empty but it goes right through the gloves onto  my hands as well and they get sticky. At first I was looking at sources outside of the Ostomy but after 11 months of doing process of eliminations it does seem to be coming from inside my bag. I've had this Ostomy for quite a long time and this is the first this has ever happened since 11 months now. But yes sticky like glue. If I put a piece of paper down after it gets on my shower floor, paper will stick to my feet. It's a real challenge and mystery that i wish could  get solved. It has me getting depressed.  
I've wondered if it could be coming from the mucous as well. When I take the pouch off there will be this white stuff around the stoma and on part of the stoma at times.  I set an appointment with the colorectal surgeon but thus far no doctor I've seen has an answer. So far no one has done any stool tests or blood work. 
I do have pancreatic cysts so I'm wondering what your saying about digesting fat could be it?

Posts:2530
 
Reply to Hisbiscus

Hi Hi,

  White stuff?  Interesting.  What color is your gluey output when it gets on you?  And do you get this kind of gluey output all day......or just first thing in the morning when you shower?

;O)

Posts:816
 

Is your provider local or do you do like me and drive to Cleveland? :)

Posts:102
 
Reply to w30bob

You can't really tell because it's mixed with the stool I guess. I notice it when changing my pouch. It happens all day long. So every time I empty or deal with the pouch. 

Posts:102
 
Reply to crappycolondiaries

Hello, I live in the Cleveland area. My docs are at the Cleveland Clinic

Posts:816
 
Reply to Hisbiscus

Yay! Me too! My Drs being at CC that is.

I saw Sandusky so I guessed you were not too far from Cleveland. 

Do you have the ostomy nurse # still?

Are you still working with colorectal surgeon? Or GI now? Are you happy with your current surgeon?

Posts:2530
 

How long has this been going on?  Any dietary changes to note?

;O)

Posts:102
 
Reply to w30bob

No dietary changes. It been about 11 months now. I've had my Ostomy for quite some time now. Years! It's been a puzzle since.  I've seen doctors but I guess maybe not the right ones so I set an appointment with colorectal surgery to see if they can figure it out. I thought when it first happened it could be from outside sources other than from my pouch and eliminated a whole slew of things. The stoma nurses have no idea what it could be but everyone including myself now thinks it had nothing to do with the pouching system itself. At one point I thought it was because I had to switch pouching systems but every pouching system I put on it's the same. I even tried my old pouch while I was home one day just to see and the same thing. Also as of recent I had some output come out while I was in the shower and it made things really sticky. That's when I set my appointment with colorectal. 

Posts:102
 
Reply to crappycolondiaries

Yes I can still see the Ostomy nurses when I have problems. I did see them for this problem but they don't know why it's happening and no one has ever had this issue with their pouches they have told me. I think it's something coming from inside of me maybe after all this watching and eliminating things. 

I have not been working with my colorectal surgeon because you only need to go to them for surgery. Although with this problem I'm having and no one can give an answer I did set an appointment to see them.  I was am am very happy with my surgeon and he is the head of the department. He helped me put an end to a 4 year living nightmare that no one would help me with by giving me my Ostomy a few years ago. 

Posts:816
 
Reply to Hisbiscus

I'm glad you have a surgeon you trust and that he was able to help you when no one else did. I am aware you typically only see surgeons when it's surgery related 😉. I was told to pick a surgeon I liked because we'd probably have a lifelong relationship. I keep in touch with mine a little even though I'm under the care of general GI now. My kids sent her a thank you note saying ‘thanks for taking care of our mom' not too long ago. And sometimes I think I have a good idea about something and send her a message and she'll tell me why my idea is a bad idea for me 😁. I hope your surgeon is able to help solve your current issue or get you on a path to someone who can. 

Posts:102
 
Reply to crappycolondiaries

I'm sure that makes your surgeons day to get the note from your kids and to hear from you from time to time. I was originally at another hospital system in the area and they were horrible. One of their staff noticed that I was not being properly taken care of and suggested I go into a different hospital system to get another opinion. God had my back because I got my surgeon for the appointment. He had told me that I reminded him of his Mom at that first appointment. That made me feel safe and comfortable.   
Thank you for the well wishes and yeah I hope they can figure it out too! I'm going to see someone else on the team but it's all the same. They are all good there. 

Posts:816
 
Reply to Hisbiscus

I think I get more stressed parking at main campus than even having surgery there, but I learned after having a test done at Hillcrest last month, while it is under construction, was worse and I should've just gone to main. I almost left CC right before Covid shut down the world. I was seeing one of the head IBD Dr's and he was not listening to me, I told him I was only able to eat every 3 days otherwise I got sick, and he told me I had to eat every day, and I said but I can't...He told me his goal was to get me to his retirement with no more colonoscopies b/c I'd been through a lot and had lost a few organs already. There's overkill and underkill and he definitely underkilled it.  I was going to go back to my favorite ever GI Dr in Pittsburgh and just drive farther, but when I called her (former) nurse, she told me Mayo snatched her up, which didn't surprise me b/c she's amazing.  The nurse told me the Dr who trained her had taken over as the head of digestive disease at CC and to get a consult with him. He actually listened to me, did testing that was under his umbrella of specialties and then figured out I needed the motility specialist. Thank God, because that was the Dr I needed to see. 

Posts:340
 

Do you have a colostomy?  Is it an end or loop ostomy?

Posts:102
 
Reply to crappycolondiaries

It sounds we have a lot in common. I too could not eat. I had ileus seen on a CT scan from the other hospital system I was in. The GI doc I was seeing was doing absolutely nothing but putting me on more and more laxatives. I was in massive pain, I could not eat. She had me staying on liquid diet and they never kept me in the hospital for the ileus. No nasogastric tube nothing!!! I was suffering and losing weight like crazy. She actually sent me to a psychologist. Can you imagine? She saw the CT scan, she saw the numerous ER visits and that I was always backed up in the X-rays. At the end the go lightly they would have me drink,  You know the gallon that they use for colonoscopies? Oh yeah I was becoming a pro at drinking that stuff and would not even work any longer. Oh along with the other few laxatives I had to take. I was in ER at least 4 times a week in massive pain. Sometimes I would go to other ER. Hoping to get help and was always backed up each time. The ER docs would say you need to see GI and I'd say I am and she's doing nothing. Anyhow bad subject as it gets my blood boiling. But the psychologist is the one who told me why are you here? I told her the GI thinks I need to see her and she looked at my chart and she says but you have an ileus and I said I know. She offered to try to do therapy for the pain I'm having. It was something like imagining your on a beach etc.. I told her thank you but that's not going to work. She said they are not doing you right here. She said we are lucky we live in Cleveland with so many good hospital systems and she told me to go somewhere else for another opinion and I did.
Yes the parking at main campus is crazy. Luckily my insurance will provide so many rides to doctor appointments per year so I usually use those for main campus otherwise if I do drive I just pay the valet as it's easier than trying to find a spot in the garages. 

Posts:102
 
Reply to Maried

I have an end ileostomy. I started out with a temporary loop to see if it would help me and it did but my mucous I was producing in my colon was hardening up just like my poop used to. I still had rectal pain from that. Another doctor that did an colonoscopy on me while I had the loop had to abort the colonoscopy due to zillions of hardened mucous balls. Said he tried to clean them out the best he could but there was still a lot in there. He said you need your colon out and that it's not working . After 2 years of the loop the doc asked me what I'd like to do. Reverse the Ostomy or go for the end. I could not even imagine reversing and going back to the hell I was in before the Ostomy so I opted to do the end ileostomy and removed the colon and the rectum. It's been great compared to the pain I was in before. 

Posts:816
 
Reply to Hisbiscus

Is what you are seeing in the bag now reminiscent of what the "mucous balls" looked like ? (if you were able to see those) I always ask for pictures whenever they do any sort of scope, but I get not everyone likes to see pictures.  I requested a picture of my colon once it was removed and my surgeon showed me on her phone, but because I signed away everything for research I can't keep a picture of it or something like that.

Posts:2530
 

Hi Hi,

  I'm not sure a colorectal surgeon will be able to help you, but give it a try for sure.  I'd bring a sample of what you're calling "glue" and have them send it to the lab if they can't immediately identify it.  Any decent lab will be able to identify what it is.  I'm sure curios as to what it is!

;O)

Posts:12
 

Are you drinking enough liquid? I found that happens when I don't drink enough. I also keep a bottle of water filled with tap water that I use to thin the stool next to my toilet. I usually will try to empty it and wipe it off then pour some water into my bag, close it up and shake the water around in the bag. Then I dump again to help rinse the toilet because that stuff sticks! Good luck.

Posts:102
 
Reply to crappycolondiaries

Actually I'm not seeing anything in the bag but poop. It's when I take off the bag there is white around my stoma and on top of one part of it. No balls because i don't have my colon any longer or my rectum. The balls were in my colon at that time and coming out the rectum. For what's going on now I did take a pic of it to show them just in case it's not there when I go in. It's not there all the time only maybe 4 times a week. I get stickiness coming from the bag. I don't get colonoscopies any longer as I have no colon.  That was all before my end ileostomy where he saw the balls. 

Posts:102
 
Reply to jghandymann20

I do need to drink more water yes but whatever this is, it's not only sticking to the toilet. It gets on my hands and then my lower body in the shower. It's sticky like glue sticky. Real hard to get off the skin as well. As for the water we just loaded up on that yesterday. I keep saying I have to drink more water instead of coffe and Diet Coke. 

Posts:816
 
Reply to Hisbiscus

I think that's one of the best perks of no more colon...no more colonoscopy prep or colonoscopies :)

You know how the small intestine takes over certain jobs the colon used to do? I was wondering if your small intestine was making its own version of what was found during your colonoscopies when you had a colon. 

Does adhesive remover spray help get the stickiness off?

Posts:816
 
Reply to Hisbiscus

I can't imagine picturing being on a beach while having an ileus.  I threw up a lot with mine, but I was at CC already when it started. I had a really good nurse who moved me in front of other people to get moved to the specialized floor and I couldn't talk so he got on the phone with my husband to explain what was going on, and he actually brought me to the specialized floor because he wanted to make sure I was taken care of even though his shift had ended. I was supposed to be there 1-2 days max and I was there an extra week. I really fought the NG tube but it was their only option b/c I kept tanking on them.  

I moved all my medical care under the CC umbrella except for 2 specialties.  One at UH and one local to me.  After some really bad experiences with our local health system it was clear they had no idea what to do with me. A nurse that was with me during a colonoscopy who happened to live near me and her niece was in the same class as my son (I don't believe in coincidences) was the one who convinced me to have a PCP at CC in addition to the specialists.  My PCP is at a location with easy parking that was one of my prerequisites :)

Posts:102
 
Reply to w30bob

Yeah I'm kind of wondering if it's an infection of some sort. I want to see if they will at least test the stool out of the bag. I took a photo of what I'm seeing on and around the Ostomy. You may be tight thst they may not be able to help because it's a surgeons office. I may have to set with GI as well just in case. I'd sure like to know what this is as well. I did read up and saw something that mucous can be sticky like glue. I mean with ileostomy we do secrete mucous from the stoma. One person mentioned drinking more water and I'm certainly needing to do and try that. 

Posts:102
 
Reply to crappycolondiaries

Yea I don't think this has anything to do with those balls. I was just sharing my story with you of how I ended up with my Ostomy as you shared yours with me. Sorry if I confused you or anyone else. That part was not meant for the original subject posted. That would not happen with the small intestine I don't believe.  

Posts:491
 

Hisbiscus, I know you said that everyone has ruled out your bagging system but are you SURE it's not your barrier ring and it's melting in there? It sure sounds like the stickiness of one of those. 

Posts:102
 
Reply to crappycolondiaries

I've had ileus twice. The time before my Ostomy and after my total proctolectomy with end ileostomy. Huge surgery. I was told it was a possibility before the surgery as anytime they go in messing with the intestines it can happen they told me. And boy did it! I was at main campus for 30 days with it. I complained so bad about the NG tube after so long that they gave me a feeding tube so that I could just empty out my stomach contents when I felt nausea coming on and it was so much better. I had to be in IV feedings through my blood veins and that was tough too. It's called TPN. I was sent home with the feeding bag to let my stomach contents out and the TPN. The hospital had my house looking like a hospital. I was dragging an IV pole  around when I had to do my TPN and they taught me how before I left. They even delivered  a small refrigerator as there was so much stuff. It was crazy but I finally started healing after a month of being home. I actually went back to work two weeks after I got home. In the end.. here I am and it was all worth it. 

Posts:102
 
Reply to eefyjig

I know and that is what I was thinking but everyone is saying no. I stopped using barrier rings just to see but no change so then I thought maybe the base plate thst has adhesive for the bag. I really clean the area good too! I literally take extra time to do that.  No one on any forums has ever had this issue either thus far. 
the only thing is, I've had my Ostomy for years and this just started about 11 months ago. I did have to go into a convex bag a few months prior to the start of it. But I've tried using other bags and most recently the one I used to use before I had to switch to the convex. It's all the same with the sticky so that's where I'm thinking maybe something in my stool or the mucous we get because I noticed a couple times when my stoma let loose in the shower thst the stool that came out was making my shower floor sticky. I was at first looking at outside sources causing it but I've done a lot of process of elimination and thus far it's still going on. It's gotten somewhat better since I now know what all the things I have to do to keep it at a minimum but it is exhausting and depressing. 

Posts:102
 

Ok so I sent my pictures of that white gunk on and  around my stoma to the Ostomy nurses and one got back with me saying it looks like desolved adhesive from the pouch barrier or a moldable ring.  Ok but at the point of the photo I did not have any adhesive remover in it yet.  So now the question is …. What's desolving it? I don't  use moldable rings any longer. 

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