Has anyone tried the Nu-Hope Non-Adhesive Ostomy or Ileostomy System? I just ran across the system in The Parthenon Catalogue tonight. My husband has not accepted his ileostomy - after an attempted failed surgery - and I don't know that he ever will. His mood swings between depression and anger. He is not very open-minded about trying new products.
I kind of have to sneak new products in, but have learned to pick and choose my battles. So....I would like to know how effective this product is for others before I introduce this idea to him. For any of you that have a catalogue, it's on page 57 in the 2012 edition. Thanks so much.
Dalai Momma
notexpectingthis
Dalia -
I went online to Nu-Hope Parthenon right away to try to find this product after reading your post, but only found it for urostomy - not ileostomy or ostomy.
What a darling you are for trying to help your hubby out with trying new products. Don't be shocked at his reaction to new products though. My moods swing from anger to depression a lot of days too about my ileostomy. It truly is hard to explain the way that I feel to my very supportive spouse. I AM A WOMAN!!! We girls can talk about it - ya know? Men just seem to wall off around painful things.
Ileostomies are always runny and wet ALWAYS!!! Our biggest concern is keeping the darn bag on so I would be afraid to try a non-adhesive system - could just see the thing spewing out all around the "connection" site.
How long has he had it? Is it permanent? Have y'all been to a WOC nurse? What bag is he using now?
I went online to Nu-Hope Parthenon right away to try to find this product after reading your post, but only found it for urostomy - not ileostomy or ostomy.
What a darling you are for trying to help your hubby out with trying new products. Don't be shocked at his reaction to new products though. My moods swing from anger to depression a lot of days too about my ileostomy. It truly is hard to explain the way that I feel to my very supportive spouse. I AM A WOMAN!!! We girls can talk about it - ya know? Men just seem to wall off around painful things.
Ileostomies are always runny and wet ALWAYS!!! Our biggest concern is keeping the darn bag on so I would be afraid to try a non-adhesive system - could just see the thing spewing out all around the "connection" site.
How long has he had it? Is it permanent? Have y'all been to a WOC nurse? What bag is he using now?
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Dalai Momma
Hello sweet lady, thank you for responding. Here is the website for the ileostomy system. I looked at the Parthenon website too and there were no pics shown as in the catalogue, so next I scouted out the product manufacturer Nu-Hope website online and found it. http://www.continentostomystore.com/Merchant2/merchant.mvc?Screen=PROD&Product_Code=VPI6100000-6120000&Category_Code=VPIIS
It is so nice to hear from you. Sometimes I feel as though I am shouting out into space and that no one hears at all. So, I just talk to myself.
Well, he has had his ileostomy for about 1.5 years after a fight with UC. It was supposed to be temporary and they built him a J-pouch, but he had massive complications with it and so they had to remove that too, leaving him with very little colon. It is likely to be permanent, although there is some small chance. We went to see one of the best surgeons in the country in Florida at the Cleveland Clinic. The doctor said maybe, but he would have to lose 100 lbs because of the way men carry body fat on the inside. If he could or would lose that much, then possibly he could try another J pouch.
As far as the WOC nurse, she forever freaked him out and his angry feelings extend to her as well. Just a day or so after his failed surgery, she sent a volunteer man in who has a colostomy to talk with him. He unfortunately dressed himself up as a clown and was handing out clown noses in the hospital. To this day, I question the sanity of both of them as to why would they choose such festivity on the worst day(s) of his life. Ahhhh!!
How about you, honey girl? Did you have dreadful UC, cancer, or an accident? I wouldn't wish this plight on anyone, not even my worst enemy. I have witnessed what it does to a person. I just want my Mattie back.
As far as the non-adhesive system, I wonder how it might work out - like you say, it could be a possible disaster. But I was thinking, even if he could use it just for an hour, perhaps after taking a shower or something, that it might be nice to just let his skin be dry or to breathe. Let me know what you think. Peace.
Oh, and he uses the two-piece bag from Hollister - New Image Drainable with Filter Lock and Roll.
It is so nice to hear from you. Sometimes I feel as though I am shouting out into space and that no one hears at all. So, I just talk to myself.
Well, he has had his ileostomy for about 1.5 years after a fight with UC. It was supposed to be temporary and they built him a J-pouch, but he had massive complications with it and so they had to remove that too, leaving him with very little colon. It is likely to be permanent, although there is some small chance. We went to see one of the best surgeons in the country in Florida at the Cleveland Clinic. The doctor said maybe, but he would have to lose 100 lbs because of the way men carry body fat on the inside. If he could or would lose that much, then possibly he could try another J pouch.
As far as the WOC nurse, she forever freaked him out and his angry feelings extend to her as well. Just a day or so after his failed surgery, she sent a volunteer man in who has a colostomy to talk with him. He unfortunately dressed himself up as a clown and was handing out clown noses in the hospital. To this day, I question the sanity of both of them as to why would they choose such festivity on the worst day(s) of his life. Ahhhh!!
How about you, honey girl? Did you have dreadful UC, cancer, or an accident? I wouldn't wish this plight on anyone, not even my worst enemy. I have witnessed what it does to a person. I just want my Mattie back.
As far as the non-adhesive system, I wonder how it might work out - like you say, it could be a possible disaster. But I was thinking, even if he could use it just for an hour, perhaps after taking a shower or something, that it might be nice to just let his skin be dry or to breathe. Let me know what you think. Peace.
Oh, and he uses the two-piece bag from Hollister - New Image Drainable with Filter Lock and Roll.
notexpectingthis
I cannot even begin to describe how your husband feels inside. The mental havoc blows through you like a wrecking ball. You feel only a shadow of the person you were for a while - especially if he thought there was a good chance this was going to be temporary....bless his little heart!
I had the "best" surgeon in Atlanta to remove my appendix because there was a polyp at the opening. It set up peritonitis, sepsis, septic shock, and I was on life support after a leak at the site where he took my appendix. The bag saved my life but is leaving major problems of its own.
I do understand about letting his skin breathe - has he considered just sitting for a spell with a towel in his lap and toilet tissue to dab what runs out? Keep a trash bag nearby!
So sorry the WOC nurse was a failure. Mine has truly been a lifesaver. I am in a Nu-Hope one-piece bag with convexity. I use Eakin seals also to help keep my recessed stoma from causing the seal to leak. It is awful when I get a leak; the stool eats away my skin quickly like acid. I get that on-fire feeling often.
Just remember that no one can change your husband's mind about how he feels but him. I assume you are looking for a new product because you think he is uncomfortable with the one he is using??? If he is overweight - or has any creases or folds in the skin when he sits - a bag with convexity is going to be a must. Hollister makes one if those are the products he is familiar with.
You are an angel for your continued support to him! It will get better!!
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notexpectingthis
Girl - I just looked at that thing - unless his tummy is really flat his stoma is really an outie - I don't see how that is gonna work. No way I would be brave enough to try it. Recliner - towel in lap - toilet paper for dabbing - trash can nearby. Much better, I believe!
rvhumbug
I read your post about the "visitor" your husband saw. Let me assure you that he violated all the guidelines of visiting and the WOC Nurse who sent him did as well.
I've had my ileostomy for 50 years and have been a visitor for most of that time. Try to contact a local group affiliated with United Ostomy Associations of America (UOAA) to get your husband some help. The website is www.ostomy.org.
As for Nu-Hope, I've known them (they are local to me) for 50 years. They make great products and have very good customer service.
I can only hope your husband can get some help for the mental anguish he is going through. The biggest problem is he has to ask for it. If he is not willing to discuss his issues, he won't get valuable help.
Good luck,
Bob H.
strongandbroken
Dalai Momma,
Love the name! First and foremost, bless you for being right there by his side through all of this. I didn't have the greatest marriage to begin with, but after 10 years (7 w/ an ileostomy), my wife gave up on us. Again, far too many reasons it didn't work to bring up here, but having an ostomy and all that comes with it was the final straw for us. It is hard on the best of us!
As for your hubby not being open to trying new products, is there a reason you keep trying new products? If he feels comfortable with a certain product, then leave it be for a while and try one minor change at a time. Perhaps a new skin barrier at first. If that works, then perhaps a new paste. Then perhaps an Active Life Sure Seal ring (keeps moisture out and lets oxygen in). As you look through your catalog, if you see a specific product to help with a specific issue, try them one at a time.
Having said that, it took me almost 5 years (19 years ago - the product selection wasn't as vast as there is now) to find the right combo that worked for me. The other side of that is it's only 18 months in for you and your hubby. Be patient. It takes time, as any major change in life would, to adjust to all of the changes. Don't let yourself get overwhelmed by trying to fix everything all at once.
Lastly, think of it this way: if starting tomorrow you had to work with your hands after years of having delicate, soft skin no matter what you used - lotion, gloves, etc... your hands would be sore and roughed up. The skin around the stoma never had to work any harder than to deal with soaps or perhaps suntan lotion, maybe a little bit of sunburn? Now it has to deal with a completely different set of circumstances. Give it time to adjust! It doesn't become calloused per se, but it does get tougher and eventually when you find the right combination of products, before you know it, this will all be a distant memory.
BTW, that clown stuff - idiocy! Complete idiocy! Clowns are freaky enough, never mind in that scenario. That was complete incompetence by the nurse and complete lunacy by the clown (obviously this guy had other issues).
Good luck and be well!
Michael
Love the name! First and foremost, bless you for being right there by his side through all of this. I didn't have the greatest marriage to begin with, but after 10 years (7 w/ an ileostomy), my wife gave up on us. Again, far too many reasons it didn't work to bring up here, but having an ostomy and all that comes with it was the final straw for us. It is hard on the best of us!
As for your hubby not being open to trying new products, is there a reason you keep trying new products? If he feels comfortable with a certain product, then leave it be for a while and try one minor change at a time. Perhaps a new skin barrier at first. If that works, then perhaps a new paste. Then perhaps an Active Life Sure Seal ring (keeps moisture out and lets oxygen in). As you look through your catalog, if you see a specific product to help with a specific issue, try them one at a time.
Having said that, it took me almost 5 years (19 years ago - the product selection wasn't as vast as there is now) to find the right combo that worked for me. The other side of that is it's only 18 months in for you and your hubby. Be patient. It takes time, as any major change in life would, to adjust to all of the changes. Don't let yourself get overwhelmed by trying to fix everything all at once.
Lastly, think of it this way: if starting tomorrow you had to work with your hands after years of having delicate, soft skin no matter what you used - lotion, gloves, etc... your hands would be sore and roughed up. The skin around the stoma never had to work any harder than to deal with soaps or perhaps suntan lotion, maybe a little bit of sunburn? Now it has to deal with a completely different set of circumstances. Give it time to adjust! It doesn't become calloused per se, but it does get tougher and eventually when you find the right combination of products, before you know it, this will all be a distant memory.
BTW, that clown stuff - idiocy! Complete idiocy! Clowns are freaky enough, never mind in that scenario. That was complete incompetence by the nurse and complete lunacy by the clown (obviously this guy had other issues).
Good luck and be well!
Michael
smith311
Hello Dalai.
Thanks for the link to the Nu-Hope bag system. I have not tried it (I have a permanent ileostomy) but I took a look at the web page. Agree with the others that I would be very hesitant to use this non-adhesive system, certainly not without a positive review from one or a few ostomates who actually used it. Until you can get that, my recommendation would be to hold off. Bad accidents that might occur trying to use this if it doesn't work probably won't help your husband's state of mind. Also, it looks kind of bulky to me, and I wonder how easy it is going to be to keep it from getting nasty since it doesn't seem to be disposable or have disposable parts. Those are just my observations based on the drawings of the device on the web page. Frankly, they could have magnified the drawings some so that at least the lettering was readable, maybe there was another link to larger versions of the drawings but I didn't see it. It would have been nice to see an actual photo of the thing as well.
A couple suggestions, you mentioned about wanting to let his skin be dry or breathe, I often shower without the bag on, as it is a great feeling to be away from the bag even just for the shower time. I typically use that opportunity to change the appliance. You have to be careful to keep the stoma from being too active during that time, or else it might be aggravating and a bit gross, but if that happens a quick wipe-down/disinfect of the tub and everything's good again. Then I typically kneel in front of the toilet with stoma over the bowl to get the new appliance on and so forth. This position lets you wait until the skin is nice and dry and give the breathing time you were talking about. Plus no worries about doing it fast if the stoma starts getting active, much easier to deal with an active stoma that way. Just let it go into the bowl. I use a foam kneeling pad from Black & Decker to make it more comfortable.
Just to touch on the part about dealing with the ileostomy, my story is similar to your husband's, I developed severe UC four years ago at age 35 which in four months led to an ileostomy. I also had an attempted j-pouch surgery the following year which failed for me as well. It was very difficult for me to deal with the blow to my self-image and I still harbor anger and depression myself at times. But, I definitely think time helped a lot, so perhaps your husband just needs more time. Sorry if I am not really saying much more than the others, but if nothing else it helps reinforce some of the points already made.
Best wishes.
Thanks for the link to the Nu-Hope bag system. I have not tried it (I have a permanent ileostomy) but I took a look at the web page. Agree with the others that I would be very hesitant to use this non-adhesive system, certainly not without a positive review from one or a few ostomates who actually used it. Until you can get that, my recommendation would be to hold off. Bad accidents that might occur trying to use this if it doesn't work probably won't help your husband's state of mind. Also, it looks kind of bulky to me, and I wonder how easy it is going to be to keep it from getting nasty since it doesn't seem to be disposable or have disposable parts. Those are just my observations based on the drawings of the device on the web page. Frankly, they could have magnified the drawings some so that at least the lettering was readable, maybe there was another link to larger versions of the drawings but I didn't see it. It would have been nice to see an actual photo of the thing as well.
A couple suggestions, you mentioned about wanting to let his skin be dry or breathe, I often shower without the bag on, as it is a great feeling to be away from the bag even just for the shower time. I typically use that opportunity to change the appliance. You have to be careful to keep the stoma from being too active during that time, or else it might be aggravating and a bit gross, but if that happens a quick wipe-down/disinfect of the tub and everything's good again. Then I typically kneel in front of the toilet with stoma over the bowl to get the new appliance on and so forth. This position lets you wait until the skin is nice and dry and give the breathing time you were talking about. Plus no worries about doing it fast if the stoma starts getting active, much easier to deal with an active stoma that way. Just let it go into the bowl. I use a foam kneeling pad from Black & Decker to make it more comfortable.
Just to touch on the part about dealing with the ileostomy, my story is similar to your husband's, I developed severe UC four years ago at age 35 which in four months led to an ileostomy. I also had an attempted j-pouch surgery the following year which failed for me as well. It was very difficult for me to deal with the blow to my self-image and I still harbor anger and depression myself at times. But, I definitely think time helped a lot, so perhaps your husband just needs more time. Sorry if I am not really saying much more than the others, but if nothing else it helps reinforce some of the points already made.
Best wishes.
Past Member
Well, he is a clown in more ways than one. I have had my permanent colostomy since 2003 and I will admit to being very resentful of it. I named it ETNA after the Italian volcano that is quite benign most of the time but when it erupts it is a downright disaster. It took me about 6 months to come to grips with my new stoma, but then I was having chemotherapy and radiation therapy too at the time. I have my story on another website but the rules don't allow me to post the address here. It is quite a long story, about 8 or 9 A4 pages. So it is probably too much to post on this site as a blog. Maybe someone can let me know if it can be posted here?
My big problem now is adhesions. My bowels are all glued together in one big lump so none work properly anymore. I have small bowel blockages with monotonous regularity and have been in hospital 4 or 5 times this year so far.
Thank you, Dalai, for being so kind to him. He is being rather difficult, isn't he? I am fortunate too, my wife of almost 49 years is a loving graceful lady who I absolutely adore. She and I have had a great life together and our two daughters, now grown up, well, one of them is. The other is around 40 but going on 17, I think. I have had some rather messy accidents but Beverley is always there to help me clean up. I think one of the worst ones was a base plate lifting at night in a hotel bed in Alice Springs last year. It was pretty awful. We travel a fair bit but only in Australia or New Zealand now.
I wish that there was something I could do or say that would get your husband's mind in a better frame but really that has to come from him. He must accept it because it is there and won't go away. I hope for your sake that it happens sooner than later.
Doug.
My big problem now is adhesions. My bowels are all glued together in one big lump so none work properly anymore. I have small bowel blockages with monotonous regularity and have been in hospital 4 or 5 times this year so far.
Thank you, Dalai, for being so kind to him. He is being rather difficult, isn't he? I am fortunate too, my wife of almost 49 years is a loving graceful lady who I absolutely adore. She and I have had a great life together and our two daughters, now grown up, well, one of them is. The other is around 40 but going on 17, I think. I have had some rather messy accidents but Beverley is always there to help me clean up. I think one of the worst ones was a base plate lifting at night in a hotel bed in Alice Springs last year. It was pretty awful. We travel a fair bit but only in Australia or New Zealand now.
I wish that there was something I could do or say that would get your husband's mind in a better frame but really that has to come from him. He must accept it because it is there and won't go away. I hope for your sake that it happens sooner than later.
Doug.
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bfraser1999
Hi Dalla, I have been having trouble keeping my flange on as well due to the loose stool. The other day I went and spoke to an older doctor and he suggested I try Metamucil. I know it is a fiber (and I sure know what fiber does to me), but he said that though people use it for constipation, it also works for loose stool. Seemingly, it absorbs the moisture and he said it goes right through you. So I have been on it and my stool has thickened up, and my last flange stayed on for 43 hours instead of 12. So time will tell. My ET nurse has told me that I might be one of the people who have to change once a day. I hope that this will make that not so. I sure find this site interesting as I have no one to talk to about this. Thanks to everyone. Bev
Dalai Momma
Hello everyone, wow!! Thank you for the outpouring of love and support. It has been very helpful. The other day, I actually wrote a long and cathartic reply to Notexpectingthis at which time I rambled on and on and on about my feelings, anger, fears, motivations, and love for my guy. I must have taken so long in my ramblings that I was actually timed out and my response was lost. But at least I felt better. Lol.
I would like to tell everyone some things I have learned by my short stint here. It is nice to not feel isolated and alone. I didn't anticipate an outpouring of such support. I feel a bit whiny, in a way too because all of you have suffered so much and here I am graciously accepting the support for my pain. What?? Life can be funny, I suppose.
I do have one other question and maybe someone will know what this is called. When I first met my guy, I had no idea what UC was. He was on infusion therapy which put him into remission and he was great. Due to problems, blah blah blah, he ended up in surgery-then life quickly crumbled around us. He expected his surgery to be the cure-I suppose it has been in regard to no more chronic pain, but oh boy!!, has it led to an emotional injury. As every person here and the people who love you, I think must have also gone through the same feelings, horrors, and that dreadful questioning that comes along with such events. I remember going over and over in my head if the things we felt and said were common with other people experiencing similar medical traumas and if it has some kind of name. You might think I am strange for wondering, but I am a therapist/social worker as a career and I felt so helpless and clueless. I have never dealt with chronic illnesses or medical traumas on a professional level and I always thought it would have been easier to go through something that I could have anticipated and recognized. So, I was just wondering if anyone actually had any therapy or professional support groups in your own experiences and if you have a name for what we have all been through-other than Hell. Lol
Well, several people asked me some questions or made some good points, so I am going to respond.
1. No, he is not easy to get along with-how did you know?
2. Why am I searching for products for him? That was a great question. I think it's my basic personality to get things rolling. If you think I should just let things progress in time, it's probably a good idea though.
3. Thank you for validating that I am not crazy that the clown in our room was insane. I had words with the nurse over that and she acted indignant toward me. Whatever!
4. We got some fiber pills and suppose they must work similarly to the Metamucil. It worked great to thicken up his bile.
Finally, I just want everyone to know how much I appreciate you. As the person on the other side, who loves someone very much, I just want to expand my feelings on this subject to everyone here. This is like a sprained ankle or broken foot that I suppose you are doomed to roam around with. But you are still that person that God sent into this world. It's something you have but not what you are. That is just how I see it. I still love my guy because he trips my trigger, makes me bust out in laughter, makes me feel safe, and sometimes crazy mad-just the same as before his surgery. I hope he finds some peace in time. I appreciate all of you and have now some idea of what to hope for and to pray for. Thanks so much.
I would like to tell everyone some things I have learned by my short stint here. It is nice to not feel isolated and alone. I didn't anticipate an outpouring of such support. I feel a bit whiny, in a way too because all of you have suffered so much and here I am graciously accepting the support for my pain. What?? Life can be funny, I suppose.
I do have one other question and maybe someone will know what this is called. When I first met my guy, I had no idea what UC was. He was on infusion therapy which put him into remission and he was great. Due to problems, blah blah blah, he ended up in surgery-then life quickly crumbled around us. He expected his surgery to be the cure-I suppose it has been in regard to no more chronic pain, but oh boy!!, has it led to an emotional injury. As every person here and the people who love you, I think must have also gone through the same feelings, horrors, and that dreadful questioning that comes along with such events. I remember going over and over in my head if the things we felt and said were common with other people experiencing similar medical traumas and if it has some kind of name. You might think I am strange for wondering, but I am a therapist/social worker as a career and I felt so helpless and clueless. I have never dealt with chronic illnesses or medical traumas on a professional level and I always thought it would have been easier to go through something that I could have anticipated and recognized. So, I was just wondering if anyone actually had any therapy or professional support groups in your own experiences and if you have a name for what we have all been through-other than Hell. Lol
Well, several people asked me some questions or made some good points, so I am going to respond.
1. No, he is not easy to get along with-how did you know?
2. Why am I searching for products for him? That was a great question. I think it's my basic personality to get things rolling. If you think I should just let things progress in time, it's probably a good idea though.
3. Thank you for validating that I am not crazy that the clown in our room was insane. I had words with the nurse over that and she acted indignant toward me. Whatever!
4. We got some fiber pills and suppose they must work similarly to the Metamucil. It worked great to thicken up his bile.
Finally, I just want everyone to know how much I appreciate you. As the person on the other side, who loves someone very much, I just want to expand my feelings on this subject to everyone here. This is like a sprained ankle or broken foot that I suppose you are doomed to roam around with. But you are still that person that God sent into this world. It's something you have but not what you are. That is just how I see it. I still love my guy because he trips my trigger, makes me bust out in laughter, makes me feel safe, and sometimes crazy mad-just the same as before his surgery. I hope he finds some peace in time. I appreciate all of you and have now some idea of what to hope for and to pray for. Thanks so much.
Emeraldeyes
I did try the Nu-Hope non-adhesive ring. You have to keep it very snug, which for me was quite uncomfortable. It leaked in the middle of the night the three times I tried it. I did settle on a Nu-Hope product that works pretty well with my sensitive skin. The adhesive is much more gentle than some other products, and there have been no leaks. Good luck!
notexpectingthis
Girl - get all the love and support you need here. Nobody could possibly understand this stuff except for us! Yes to the therapy question. Psychiatrist for me. Post-traumatic stress disorder and a type of grieving process.