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Posted 6/20/2015 3:44 PM (GMT 0)
I use the convatec convex wafers, don't know if there are other bags that go with it. this one seems so messy, with the wide opening at the end (velcro) and i have mixed output (some liquid, some solid). Going to see my ostomy nurse in a week or two, can't remember, but wanted to get some input prior to the appt.

Still dealing w/ odor. For those of you who take devrom--how many capsules per day work for you, or does it not work for you? i also use the stuff you squirt in the bag (sorry, memory is HORRIBLE these days). Feel restricted to being alone and homebound once i take my laxatives (yes, still have rather severe constipation post surgery, say it will be like that for life, yippee!)

thought about using high output bags cuz I like the spout idea, much simpler and cleaner, but won't work for me now. anything similar?

Last thing, anyone have cognitive issues post surgery? I am somewhere around 5 or so months post surgery, and i constantly type words wrong or even just the wrong word altogether, as well as pretty bad word finding problems. Started right around time after surgery, as did chronic nausea, just feel like i'm losing my mind. Sometimes i type a word like "post" and i know the sound i want to type but can't figure out what letter it is. I don't want to mention another problem to my docs until we get some fixed, seems like just one after another. Is this whole thing normal?

I know i write too much on here…sorry. have lots of questions, etc, and the "ostomy support group" that docs spoke so highly of has met once in the past 4 or 5 months. Cancelled again this month.


Sorry.

Thanks if you read this and feel like responding.


(Not so) Sunny.
Posted 6/20/2015 10:32 PM (GMT 0)
Convatec has a white bag with a small drainable opening. It is so much easier to clean. Call convetec and ask for this bag. I don't know why they think the wide opening is easier.
Posted 6/21/2015 12:48 AM (GMT 0)
I agree 100 percent with Answers about calling ConvaTec . As for the odor, have you tried something as simple as a peppermint Altoid? Something so simple can be quite effective. All the best...
Posted 6/21/2015 1:10 AM (GMT 0)
Have you tried different wafers and bags? It's unlikely that the first bag you try after surgery will be the best one: you should try as many as you can. In some ways it's a pain up the arse, but it's worth the initial effort to find a bag that you are happy to stick with for years.

What bothers me is that you hardly seem to be in a better position than you were before surgery. It is not too late to get an ileostomy. You should not settle for a lifetime on laxatives and being chained indoors while they take effect. Have a talk with your doctors about this and don't allow them to fob you off: this is your quality of life, not theirs.

I guess I had some cognitive issues post-surgery but I had them before surgery as well. Depression impacts the most heavily upon my cognitive state: can barely string two thoughts together when I'm depressed (which is nearly all the time nowadays). In fact I'm struggling with what to say right now, tbh. I dunno, it's possible you could still be feeling the physical after-effects of surgery: it is a major stress on the body. But equally you might just be depressed.
Posted 6/21/2015 6:40 AM (GMT 0)
Don't have much advice in the bags or the odor, unfortunately, but wanted to second what NCoT said with regards to depression and the cognitive issues you're having.

There were days post surgery when I was just so emotionally taxed and depressed from everything up until that point that yes, stringing two words together or even remembering the name of something I just used five minutes ago was impossible. My brain was pretty much fried for quite a while.

Don't ever apologize for posting here whether it's asking questions or just venting. That's what this place is for. You've been through so much, i really hope you can get some relief soon.
Posted 6/21/2015 7:19 PM (GMT 0)
Hollister bags are narrow at the bottom. I actually prefer a wider opening at the bottom of the bag, like the coloplast mio bags. Maybe I'm different from everyone else in that preference.... I had to switch to Hollister because their wafer works best on my skin. I really miss the Mio bags. :( I would think that a wider bag would be easier to empty if you have more solid ouput.(?)

I have had my perm ileo for a little over 3 months, and have tried multiple brands and configurations. I am always requesting samples, and have not fully settled on my system yet, ha. Many WOCNs are really good, but I have found that they don't keep up on the absolute latest appliances. They work with whatever brand their hospital uses, and don't seem to seek knowledge outside of that, in my experience.

Most companies are glad to send you samples. Just call and tell them your situation and they can recommend something to try.

I use a squirt of coloplast brava lubricating deordorant and a squirt of M9 after emptying, when I'm at home. Some people use tictacs or Altoids with success.

I hope you can find a system that works for you. I know it's a total pain and takes forever, it seems, but you will get there.
Posted 6/21/2015 9:50 PM (GMT 0)
Thanks for all the awesome replies and thoughts! I will respond to them soon, and I have additional questions for some of you!!


@NCOT--I am very much going to look into the option (the dreaded more surgery option) of an ileostomy or some other solution. My dad wanted to go for a walk today, but I couldn't cuz there was no restroom around. Bad enough we went mini-golfing and I had to go back to the pro shop (far away) to use the bathroom twice. I did empty two seconds before we left the house to go and had to empty right when we got home. Frustrated.
Posted 6/22/2015 12:55 AM (GMT 0)
I agree about the ileostomy. It's the best thing I every did for my quality of life.

I take Devrom, 6 to 8 tablets a day. I also use m9 drops in my bag. If the Devrom seems to lose effectiveness, then I'll stop taking it for a few days and start back and it works again. I take it in divided doses, am and pm. I must take it around the same time everyday to have the best results.
Posted 6/22/2015 1:09 AM (GMT 0)
Sunny - It's easy to say, but try not to let the prospect of another surgery put you off. (Personally I think the doctors should have given you an ileostomy to begin with, but that's another story.) It will be worth any short-term discomfort/complications if you can do things like go for a walk with your dad.
Posted 6/22/2015 2:33 PM (GMT 0)
I was going to ask about the possibility of an ileostomy also. I know you have been through SO much already, but it may be worth at least asking the doctors about. Maybe there is some way they can determine if the problems are caused solely by your large intestine.

Calling Convatec is probably the best way to find out for sure if you are using the best bag for your needs. That is how I discovered the high output bags that I told you about. I do know they make a bag that is more plasticy thank cloth like and the opening on that is not quite as wide as the one I think you are currently using, but not as small as the little spout either. I'm not sure which you are currently using.

PS...I'm a terrible friend who can't seem to sit down and write an email! :( I will soon...

Take Care!
Posted 6/23/2015 3:39 PM (GMT 0)
I have a colostomy, so I can't really answer your pouch questions, but I would like to echo what's been said about cognitive state. Stress- both emotional and physical, as well as depression can really mess with your cognition. Maybe you need a little therapy to help sort things out and express how you feel. You may be holding it all in without realizing it, and your brain and body are feeling it.
Posted 6/26/2015 3:01 PM (GMT 0)
@notcreative---I have a colostomy right now too!


And for all of you, again thanks for the responses. I feel so much better when i hear from you all--so much support and like you are all behind me in what i do/don't do.

I am going to therapy, 2 times a week. Actually leave for therapy in about 20 minutes! The insurance is fighting me going twice a week, but my therapist and I are putting together a good fight to show them why it's necessary and that it's working. The main thing is that with so many health issues, we end up talking 1/2 the time about that and the other 1/2 about issues in my life. No way could we ever fit it all in one session. I also see my psychiatrist every 1-2 weeks usually. She is wonderful--into the whole body and mind, not just meds. But she also has a specialty in psychopharmacology. Sometimes she gets so into figuring out the meds (how they work together, etc, I'm on about 20 meds), and she will start talking in spanish about receptors and agonists and all sorts of things I don't understand (she's from south america). And when things go well, I get a high five! Only thing is she's getting older and i'm terrified of her retiring soon!!

Anyway, have tried lots of pouching systems, yesterday& today using a high output bag--feel comfortable with that and much less messy!! See my ostomy nurse next week--she was able to squeeze me in rather than waiting til the 17th.
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