Christmas gift advice!!

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masanja
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 11/28/2007 11:33 PM (GMT -6)   
I hope everyone will forgive me for my ignorance, I'm pretty new to the world of ostomies.
My father recently had an unplanned/unexpected colostomy while having an operation that eventually diagnosed his gastric cancer.
While he's incredibly strong and dealing with all of this news and these issues, it seems that his colostomy is one of the things that irritates him most - he was very active before he began having problems, and I think the pouch hanging from his stoma is kind of a symbol of his weakness, his sickness, his 'new' life. He's already talking about having it reversed, although I'd rather he have it forever than see him go back into surgery...

His birthday is around Christmas, so I'm asking for advice from anyone on gifts I could get him that would help him better deal with his colostomy. This might include something like a book with tips on ostomies that you've found particularly helpful, a 'deodorant' to minimize the smell, etc. But most of all, I really want to get him some kind of support belt that he can wear comfortably and get that pouch out of his way so he can be at least somewhat active again without feeling bad for himself :-)

Does anyone have advice on different brands/types of support belts for the ostomy pouch? I want it to be comfortable, 'stylish', and something that will really help him see that he can live a 'normal' life with his colostomy. Any thoughts would be GREATLY appreciated - most of the belts that i've seen cost 50-100 dollars, and I don't mind spending even more I just want to have some idea that I'm buying a quality product that will work well and be comfortable. So please share your stories/thoughts if you'd like!!

Happy holidays to all.

B. in Chicago

masanja
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 11/29/2007 10:36 AM (GMT -6)   
Ash,
Thanks for your advice. Lol, this would NOT be the only nor main gift for him this holiday season. But it is still something that I want to do for him, and speaking with my mom we've kind of agreed that getting him something like this would help us all 'own' the situation instead of trying to gloss over everything that's happened until the holidays are over. I'm certainly not going to give him an ostomy-only gift basket for the holidays (:-) !), but I do think it would be fun to help him out with a support pouch or something so that he can do some activities with less worry about it - including, if he's strong enough, what I hope will be another gift, a short trip to go skiing.

He does have problems concealing the bag, but I think it's comfort as well and even moreso peace-of-mind. Even when he has it tucked into his wasteband, I think there's always a concern that it might get caught on something, or get bumped by something, and that it is still a bit noticeable. Sometimes I even think he walks around a bit hunched over for these very reasons. I really want to get him some kind of support belt to just help him accept that, as you said, it "is NOT a sign of his weakness."

Does anyone have any ideas/suggestions?

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/29/2007 11:14 AM (GMT -6)   
Where is his Ostomy located? It sounds like it's above his belt line? Does his stomach pooch out? It's harder for men I think, especially if they have any gut at all, because above the belt line shows it all, below there's not much room. Women have many more clothes options.

I don't know that a belt will help him, the pouches usually hang down through a hole in the belt. They're used more to keep the flange or adhesive part on if you have a difficult/unusual stoma, not so much to stabilize the pouch itself. Does he use a 1 piece or 2 piece? If he's having issues keeping it on while active, a better gift would be a visit from a good ostomy nurse (ET nurse). If you know a belt will help, I'd go with NuHope, they make the best and have wonderful customer service.

If it's an issue of it showing, if anyone's handy with a sewing machine, you can make him a custom fit "cumberbun" or a stretchy type of tube top that he can put on (maybe with velcro) to keep it close to his body.

As he heals and feels better, there should be no reason he's not just as active as he was before the surgery. it shouldn't interfere with his life at all, as long as he can get his appliances to fit and stay on properly. Stomas are pretty sturdy, and not easily harmed, he shouldn't worry about that, and a good nurse can reassure him of that fact.

As for odor control, my colostomy had way more odor than my ileostomy, but the thing that worked best for me was always the M9 drops. They're available at most medical supply stores and should be covered by his insurance. Just make sure he uses way more than it says to use, a couple drops don't do a thing for thick output, you need a good squirt or 2, enough to really cover it.

You may also want to buy him some nice shirts for Christmas that are made to be worn outside the pants, not tucked in. Does he golf? Tommy Bahama makes some great shirts like that. But if you look around, you can probably find something.

You're a good child (son/daughter, sorry can't tell if your male or female from your signature) to be so thoughtful of what he's going through. This surgery is a huge body image adjustment for most of us, even when it was elective. Many of us went throught some hard times afterwards, a little depression should be expected, and it may take some time for him to adjust.

I hope they can get his cancer in remission. Keep us posted.


Judy
Crohn's Disease   
 
 
 


masanja
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 11/29/2007 11:58 AM (GMT -6)   
Judy,
Thanks so much for your response!
His ostomy is pretty high up, definitely above the belt line. His stomach sticks out a bit, but not too much. Actually, I think he has kind of started walking around hunched over a bit, maybe in part because of the ostomy, not wanting it to rub against his skin too much... He is very physically fit however (well, and lost a lot of weight during his month+ in the hospital) so no gut to speak of.

I thought that there might be some sort of belt that allows you to tuck the pouch in sideways (and stabilize it) instead of having it hang down loosely, so that it's more firm and allows a bit more flexibility and confidence in movement? He has had an ostomy nurse talk to him, and I don't think it's an issue of it coming disconnected (only a few 'emergencies' i think) or worrying a lot about the stoma, but more a matter of having it firmly in place and not hanging around or tucked into his waistband.

"you can make him a custom fit "cumberbun" that he can put on (maybe with velcro) to keep it close to his body." - this sounds very much like what I want to get - I'm not a crafts type person though, is there nothing on the market to buy that fills this function?

Thanks for the tip also re: M9 drops, and the shirts have already been purchased :-) I really appreciate the advice. I think it's been hard for him and everyone to feel so out of control over what's been going on, and doing little things related to his colostomy that give him more security and peace of mind and help him adjust and accept it will really help in the long process to healing.

/Brian

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/29/2007 12:38 PM (GMT -6)   
I've never seen the cumberbun on the market, but I bet you could have one made pretty easy. You just need some stretch material, some measurements, and ask your local tailor to make one seam and a hem around the top and bottom. I know some people have used the old "tube tops" for women, but I believe they're hard to find these days.

I have heard of some people on here that used one of the belts and tucked the pouch in sideways to keep it stable, but depending on the stool, that could make it "sit" at the site of the stoma (instead of dropping down) and be uncomfortable and maybe erode the appliance around the stoma which could make it leak. Maybe whoever that was will drop in and tell you how it worked for them. You may also want to call NuHope (you should be able to find a number on the Internet), tell them the problem, and they may be able to make you something that will work. I know they used to make some "customized" belts for people, but now they have so many selections I don't think they have much call for it.

It's hard when the ostomy is so high, if you tuck the pouch in it may prevent it from filling properly, if you don't it's swinging around. Maybe start another post asking for guys perspective, maybe they can give you some ideas.

Good luck, and I hope you can resolve these issues, it will help him adjust quicker.
Judy
Crohn's Disease   
 
 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/29/2007 12:45 PM (GMT -6)   
I forgot to mention; the type of appliance (pouch) he uses may effect the "noise" and swinging of the appliance also. Does he use a 2 piece? If so, a soft, cloth covered, closed-end pouch may not swing as much, or make as much noise and will feel better on his skin. The drainables tend to be a little longer, and some brands are covered in a plastic cover instead of cloth.

If one piece, I think Coloplast has a nice cloth covered pouch.

If he has a colostomy, which I believe is what you mentioned, his output (stool) should be fairly solid, not liquid, and the closed end pouches work well with that. He will also become more regular as time goes on, so he will have a better idea what time of day his output will become more active.

Don't hesitate to ask questions here, nothing is taboo.
Judy
Crohn's Disease   
 
 
 


Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 11/29/2007 12:49 PM (GMT -6)   
Dear Masanja
I am a recemt ostomate Feb 07. I have a really large stoma. I have found that the Nu Hope belt is very comfortable, but I have seem a horizontal belt that looks like what you are looking for. There are going to be accidents. Count on it. The alternative is much worse, believe me! I think just reading these pages helps a lot. I have gotten to an acceptance now and, I am glad there is a remedy for some of the terrible bowel diseases. Get him to read the list and get to know some of the people who live a good life with a colostomy
Ralph
When there are no more choices, tha decision is easy!


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/29/2007 1:10 PM (GMT -6)   
I think this is the belt you were looking for:

http://www.ostomysolutions.com/
Judy
Crohn's Disease   
 
 
 


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 11/29/2007 2:16 PM (GMT -6)   
If I were looking to give someone a gift like this I would go to ALL of the ostomy supply company websites and request free samples on-line. I would look to Hollister, Convatec, Coloplast, Cymed and any other company out there. Then you will get free pouches and wafers in the mail. Also, a ostomy nurse in your local hospital can also give you free samples. You can put a whole basket of stuff together for him and then add some paste, wipes, sprays, and odor-reducing products. You could create this yourself for pretty little money. Ebay is a great resource for cheap items as well.

Good Luck. I hope your dad gets well very soon.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/29/2007 5:19 PM (GMT -6)   
Brian,

You are a great person! You want to be involved and "experience" this with him. That is the best gift you can give him, esp since you are the same gender. I think the thing that really helped to feel more confident was meeting and talking to others in my same shoes. He can do that here. Or, you local Enterstomal Therapist (ET) nurse may know of someone he can visit with in his shoes. A positive attitude can be contagious! You are doing a wonderful job in just trying to understand what he is going through. KUDOS!!!!

Everything heals at their own pace, that means physically and emotionally. Be patient but sometimes persistance pays off. "Hey Dad, lets go for a drive and look at the Christmas lights." "Lets go to {favorite sporting goods store} and look around" Maybe just short trips out to lift his spirits. Running short errands with you... even if he doesn't get out of the car. And maybe he just isn't ready yet. You can only keep offering.

Having a stoma that is placed high on the abdomen probably isn't the best placement. I agree with Judy on having something made for him to "hold" the pouch close to this body would help. Any seamstress could help "design" this. It won't be visible since it will be under his shirt.

Please feel free to ask ANY questions... there are a lot of really helpful, compassionate people on this forum. Take advantage of US!!!!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 258
   Posted 11/30/2007 9:59 AM (GMT -6)   
JudyK89 hit it right on the head. Definitely check out www.ostomysolutions.com. I have 7 of those things. Made all the difference in the world to me.

Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 11/30/2007 4:16 PM (GMT -6)   
Hi Brian:

What a great son! I also have a son named Brian and he is also a great guy. I have an ileostomy and it is below the belt so I can't exactly relate to your Dad. I do have a g-tube, which I will get removed soon, but that is also above the belt line and is annoying as it moves around. I am not sure if you are in a Northern climate but if your Dad can wear a snug tee shirt under his regular shirt that may help, it helps me with the g-tube.

I can definately relate to his image issues. I am a 51 year-old guy who was very active (golf, bowling, etc.). In addition, I did have pride in my appearance (wardrobe, etc.). Some people may think guys don't care so much about image issues but I was severely affected by the ileostomy etal. But, by reading this forum and looking back at past threads, I have learned that it is not such a terrible thing and I have felt a lot more comfortable in my own skin. It does take some time, but I am sure your Dad will come to realize this too.

Good luck to him and your family.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.

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