@veganostomy Eric, im.wondering if maybe that would be happening to me as well, as in output having a hard time coming out or maybe a blockage. I surely have been getting episodes of blockage type feelings here and there. I never knew that could cause the stoma to retract. As you said with an already flat stoma that I already have. 

Just last night I thought I was having another obstruction but I quickly changed positions in bed to my left side, remembering that its easier to digest laying on the left and it slowly subsided  but still scarey. Im guessing adhesions most likely returning from my surgery I had. 

@chelly It's entirely possible, and likely that it gets compounded because of adhesions. That's one of the reasons why I like wearing clear appliances, when something feels "off", I have a look to see what's going on. 

It's been a while since I've had a blockage, but the retractions were always a symptom, and unless I intervened (changing position, manually pushing with my fingers around the stoma, removing my appliance, etc.) it would cause leaks and a cascade of issues that I'd eventually had to deal with!

@veganostomy same here, I have to.have a clear see through pouch. I have to see what's going on too.  The nurses once gave me some pouches to hold me over from a supply catastrophe. They had the tan material on the front and it drove me crazy that i could not see what's going in in there. I started carefully cutting off that material so thst just could see.

Thanks for the enlightening about blockages and how they can cause retraction. I will now be aware. I can't remember if it was you or not that also told me that if you rinse your pouch with cold water it can also cause the stoma to shrink temporarily. Learning a lot on this forum. Your forum is a wealth of information for us with ostomies. 

Posted by: @chelly

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I can't remember if it was you or not that also told me that if you rinse your pouch with cold water it can also cause the stoma to shrink temporarily.

It happens to me, but I'm sure others might have mentioned that, too.

@veganostomy im telling you, i can't wait to get a normal stoma. This one is really putting me through struggles. Have to wait till December they told me due to just having surgery recently. They want me to wait and its really hard on me. 

Im.going to tell him to.make a long stoma. I can't take this flathead stuff no more. Lol

Posted by: @chelly

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Im.going to tell him to.make a long stoma. I can't take this flathead stuff no more. Lol

Haha! Yes, that would be great! 

Even though there's a short wait, it really is best that they give your body more time to repair before having another surgery. The lower the risk of complications, the better!

@veganostomy thanks for your support.

Well, December will be here before you know it. It's going fast already. Im.currently taking care of other medical problems between now and my surgery. I went to the dentist as well. 

I have lung nodules that they have been watching for years now and the last 2 CT scans they have been growing and they say appear to be cancerous but have to get biopsy to be definitive. 

This week im going to go get the SIBO breath test done as they feel I may have that from my symptoms of diahrhea, high output, nausea, gas and yellow greasy bile like output. So at least this test will confirm or rule out.  

Waiting on the call to have that scheduled. So trying to get a bunch of issues taken care of before December. 

@chelly Oh, geeze. That's a lot to be going through, but I'm at least glad that you're not putting anything off and are looking after yourself.

Do you have any biopsy scheduled for those lung nodules? Are they causing any symptoms?

@veganostomy they are thus far not causing symptoms and im a smoker with eosinophilic asthma and COPD . I know.....I need to quit but I have cut down a whole lot. Some days I dont smoke at all. They found these nodules years ago when I went to the ER for bronchitis when they did a CT. They have been watching them yearly with CT scans but now two are growing and they have to wait until they get big enough to biopsy and so the one just did that on my last  scan about 3 weeks ago. 

I just got it scheduled today for November 14th and I will stay overnight for observation. Yes and then December is the relocating of the ostomy.  I scared about it alll but needs to be done. 

I did my SIBO test today and negative thank g! I hear its hard to go away and usually comes back after treatment. Im.really glad thats not it. I scheduled a stoma appt for afterwards too because I just knew my bag  gonna blow after drinking glucose  it filled with diahrhea and the seal was going after the test. I needed to go see them.anyhow about my bags not staying on but its because of the way my stoma is now and not much can be done.  She changed my pouch out and gave me a belt to help. It was funny because with the diahrhea it was risky to even change it so we were getting ready just in case. She had me all tucked in with disposable chucks , had wet 4x4s ready and the pouch ready so we could get it on fast. We did it phew!!! We were so proud no mishaps of diahrhea getting everywhere. It behaved!!!

Update: my lung biopsy revealed adenocarcinoma of the lung. I have tons of nodules in my lungs they say and 3 more that look cancerous but 2 small to biopsy.  They want me to see oncology to get opinion on treatment or if it is worth treating. Im ok though. Not feeling sorry for myself or sad. Mad maybe yes. 

Stoma surgery will come first before all of this.. that will be december. 

.

@chelly I am so sorry to hear this, Chelly. As if you haven’t been through enough. Why wouldn’t it be worth treating? Is it a slow growing carcinoma? I would be mad too. 

One step at a time. Stoma surgery won’t be long now; December is almost here.

 Laurie 

@tigerlily hi, I'm just mad at myself for smoking. I guess they say there are so many of the nodules in all lobes of lungs right now that are growing but this one nodule was large enough to biopsy.  I think if anything they may be able to slow the growth with radiation. Surgery on all would not be an option because they have to leave me some lungs to breathe. Not sure yet,  will see the oncologist in 2 days.

@chelly I'm sorry about the news, and you certainly didn't need more to worry about. Explore those options for treatment, and don't be too hard on yourself (I say that as an ex-smoker).

@veganostomy thanks, yes I'm.about on overload now between this stoma and now this. The stoma getting fixed is my top priority right now but I don't have much faith they will get it right. It's been too many times already and still not right. For faith in my doctors , I'm running on empty. The surgery is in two weeks. I kind of feel like ...Will I be wasting my time? Probably.

I say this due to he will be cutting through my mesh . I will most certainly get another parastomal  hernia,  no doubt. I will then again have pouching problems and then I will have to go in for another hernia repair. 

I still have my teeth that I've been trying to get taken care of for 2 years now . I've had to put that on the backburner due to all the bowel obstructions and surgery. It is this stoma that has been ruining everything for everything else. It's taking up all my time so that I can't seem to get anything else taken care of and I certainly do not want to be dealing with a stoma like this if I'm going to have to deal with this cancer. Because I will just have to say forget the cancer until they can get this stoma right. Im not going to struggle between the both being a problem at one time. I can't be sitting in my house in fear of leaks like I do now forever. I literally have no quality of life at the moment. The bags leak and they don't want to stay on, I smell and well,  let's just say im not very happy

Sorry for venting, I'm just so done with it all. 

@chelly Vent as much, and as often, as you need to. You are in a complex, and obviously frustrating situation right now, and I think that prioritizing getting the stoma to be manageable is the right path.

Take on step at a time. 

@veganostomy thanks Eric. It's just been a real hassle with all of this last year with this stoma.  I'm going to oncology tomorrow,  colorectal next week and talking with hernia doc after. I have questions and have to be sure it's right this time. I can't keep doing surgeries like this. It's taken up all my time this thing already. Surgery is coming up fast .

Well, the time is here.  Surgery on this stoma tomorrow  morning.  I'm getting anxious now a  little scared. 

Will update as soon as I can and feel coherent.  

Posted by: @chelly

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Well, the time is here.  Surgery on this stoma tomorrow  morning.  I'm getting anxious now a  little scared. 

Will update as soon as I can and feel coherent.  

Good luck with everything, and take time to recover! 🤗 

Thank you Eric. I feel confident that this matter will be fixed now. I appreciate both my doctor's collaboration on getting this thing right.

Currently healing up in the hospital now.