New Ostomate Concerned About Stoma Movement and Leakage

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  I am a new Ostomate...........  I had surgery 3 wks ago. I noticed something yesterday and couldnt get ahold of anyone regarding it. Is it normal for the stoma to move in and out .......??????? Like a snake or worm? OMG its so scary. I have MS as well and am trying to stay calm but my god I don't know what to do or think..... Please help settle my nerves......

I go though like 2 bags /cover over the stoma thing(forgot the name) I wash it good, dry it , put on the adhesive and everything else the ostomy nurse showed me and I will be sleeping in my recliner and all of a sudden I wake up wet and have to go change......? Any suggestions?



Waiting for help,

Torena

ok, i`m no expert but till one comes along heres my best shot. the intestines contract and extend{very slightly} simular to an earthworm crawling.... this is how the material is passed through  it. at 3 weeks out you have much to learn..... but trust me you will master it as we all must do. your wear time and which products "work" is something i had to just learn by trial and error. a few tips..... be sure you wash the area with a soap that does not have perfumes, lotions, fragrences ect.. the area must be clean and dry. the hole in the flange must be very close to actual size of your stoma{this is always subject to change.. so recheck it}. i use the skin prep wipe, then the eakin little washer thing{instead of paste}, then the flange its self{dont forget to remove the plastic cover.... i could tell u a funny story about forgetting that!!} hold everything in place and smooth out the edges till it fits good.

preferably you do this at bedtime, if desired you can take one of the elastic belts that they sell in the excersice dept at walmart, cut a hole in it very slightly larger than the flange opening... after a few min of hand pressure ..snap on the pouch{if 2 piece??} and "carefully" work the pouch thr the hole.... center things up and tighten the belt{velcro closure}... you dont want it terribly tight... but it will hold everything in place till it sticks... now go to bed..this give the flange overnight to "cure" without you bending ect. to work it loose. now!!! in the morning put a check on the calender and moniter your "wear time" in days.... this will help u set a routine determine how often to change. hope this helps.

also.... remember .... dont panic!!!  

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Hi Army Wife Mom:  Welcome to the forum!  Lots of ostomates here with experience, freindship and advice for you.



Mild Mannered Super Hero has some good advice and explanation of normal intestinal movement.  It is called "peristalsis" which are normal intestinal movements to push waste down the intestinal tract.  It is kind of wierd looking...but you get used to it.



Could you tell us what type of ostomy you have (urostomy, colostomy or ileostomy??)  



Do you have a Home Care nurse that is visiting?  I would suggest having the ostomy nurse (whether the home nurse or the hospital nurse)  re_evaluate your pouch/wafer fit if you are experiencing leaks.  The other thought is making sure the pouch does not get over full.    If it is a urostomy, it helps some to hook up to a larger drainage bag at night to keep the pouch from overfilling.  If an ileostomy, some folks will set their clock at night to get up once to empty it.



One thing that may help meanwhile (unil re-evaluated by the ostomy nurse) is to use an ostomy  belt if you have one. This is the type that hooks on to the pouch itself, then tighten it so is comfortable but semi snug.    This helps pull the appliance towards you and "pops" the stoma out a bit; this often helps with a seal and  promotes better stomal drainage for some.



These are general suggestions since I can't see you.  Hope you can get into your ostomy nurse soon.

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  Thankyou both so much for your reassurance. The home health nurse came by on Wednesday and seen for themselfs what was going on, they applied the pouch and yet again a leak. They went through 6 bags on me within a half an hour. As I layed there bawling they called the Ostomy clinic and got me in with all 4 RN's coming up with a plan. They put a convac??? system on me self adhesive. I havent had any problems since. With my MS its hard for me to remember all the names of everything. All I know is I feel much better. Thanyou again for your support and knowing Im not alone.

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Hi AWM, Knew there must be another ostomate with MS somewhere. Lovely combination, isn't it. I've had MS since I was 15 (I'm now 62) and had my colon removed, then my rectum 6 months later, 5 years ago. They didn't want to do the rectum initially because of what it might do to the MS.-BUT- I'm still here, still the same person, just a few more problems! I now have an Ileostomy. She's called Winnie (the poo)and most of the time she behaves quite well -but it  hasn't always been like that. Changing bags is a nightmare with the MS as I can't bend my neck to see what I'm doing. I have no-one to help me so have to get on with it. Hope your problems get sorted out. Believe me, I know how you feel. Scared stiff most of the time!! Cheers, Belinda.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Belinda,

  Yep living with MS and trying to change bags is horrible. I to can't bend my head down to look so well. Optic Neuritis in my right eye I found the best way is to do it in front of the mirror in the bathroom.  I go to DailyStrength to the MS support group same name on there hoped to see you there.

Torena

Hi Torena, Optic Neuritis in left eye!! Hadn't heard of Daily Strength. Thanks. Must take a look. I'm in England. Where are you? Nice to meet you. Belinda.

Hi Belinda,

I am in Boise Idaho, USA. The people on Daily Strength are fantastic and no cost for membership. I really hope to see you there

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Army wife, glad to hear you are dry!



Most likely they used a convex wafer.  Convexity can help correct several things to get a seal; flush stoma, pushing back skin if stoma is in a fold or has creases are a couple.  



I would advise you to see your ostomy nurse again if any problems.  Hopefully the home health nurse can work with you and find some techniques to help you be indep. with pouching your urostomy yourself.



It helps to do it prior to drinking a lot of liquid (like in the morning prior to tea or coffee, you get the idea.  even with visual issues, there are some assistive items on the market that my help.  I have often ordered a wafer with the opening a lot larger than the stoma for someone with visual impairment....giving them  more target area, going by feel.  ....skin prep can be used on the skin to protect what is exposed.    would looking in the mirror be easier than looking down?  



Glad things are looking up.  I hope you keep working with your nurses and become "the expert".....

Hello Torena and Belinda

Glad to see that you are working things out. About the difficulty in seeing your stoma whilst changing pouch, I don't know if this might help but I use a mirror in front of me to deal with it.  I don't have MS but my eyes aren't that good as I have glaucoma so I have installed a mirror at tummy height above my sink and 'hey presto' I can see what I'm doing and it makes life much easier.  

When I am out and about, I carry a small self standing travel mirror in my emergency kit. Hope this helps.



Hugs,

Francine

Hi Francine, Thanks so much for your reply and advice. Sounds like an excellent idea. Why didn't I think of that? Will try it at next change. Sorry to hear about your glaucoma. Eye problems are horrible aren't they? Along with all the other problems!! Thanks again for taking the trouble to write. All the best, Belinda.

Armywifenmom & Belinda:



MS and an ostomy!!   I admire both of you very much and I wish both of you the very best in your dual struggles.  You have my highest respect.



Love,

Winston

Thanks Winston for that kind thought. Much appreciated. Belinda.

Hi Torena, Have joined Daily Strength but haven't found my way round it yet! Belinda x

Hi armywifenmom and Belinda, you ladies are incredible inspirations : ) !!! My surgery is different... I have an ileostomy (no colon) but I also wear an appliance that I have problems with. I have always tried to be prepared for panic situations. So, what I do is... wherever I live, I call the local hospital and ask for a "wound ostomy nurse," get their names, and chat with them and give them a little history, in case I need their help later. This way, they already know you a bit. It helps if they know your meds also. Recently, I was having a disastrous weekend, had already been to the ER twice, and still had lots of leakages. I finally sat down at the computer and started going to websites, anything that dealt with ileostomies. I finally found the site of a hospital that specialized in the surgery. I dialed the phone number and after talking to a few different departments, I was transferred to the wing where the nurses treated the patients that were recovering from the surgery. I spoke to a wonderful nurse who told me exactly what to do. For me, it was a moment I'll never forget because, as ostomates, we do not have "systems" like most other people, and we speak a different language, literally. So, to find someone who can relate to you is a godsend! I wish there were some way that we could have "sponsors" like those people in AA, someone we could call when there is a problem, or maybe we could register our type of surgery and when a fellow ostomate has a problem, we could get an email alert. How cool would that be? Armywifenmom, please dear, give yourself time to recover from major surgery. Your body has to recoup, and so do your emotions. I am not sure how it works, but it seems as though the nurses that help with your appliance should be coming more often; maybe a call to your doctor could arrange that? You say that you are weak. There is a product called Emergen-C. It is supposed to have lots of minerals and vitamins. I also drink those "Carnation" instant breakfasts (there may be other brands), but instead of just one, I use two packets at one time. Plenty of vitamins there. I also know, in my case, that music is therapeutic. I have a favorite band and singer that never fail to make me feel better. And as someone with depression, it has pulled me through some very bad lows. Another thing I keep in mind is this: to me, each day is a gift, and I choose to honor it with love, laughter, and music. I wish you peace of mind and hope that each day is getting easier and better for you : ) You are my hero!

Hi Jaidre, thanks for your inspirational message. I'm glad that you seem to have found ways to cope with your problems and you're quite right about speaking a different language wnen you have a stoma. I wonder where you live. I am in England and here we have the Ileostomy Association website and forums. There are some wonderful people on there (apart from me!!) and we have such a laugh. Unlike some sites, you don't have to pretend you're something you're not as we all have Ileostomies or Internal Pouches, as a result of various complaints, mostly bowel cancer or Ulcerative Colitis, which I suffered from for years before it became unmanageable. I only discovered the site a year after my op and I do so wish I'd found it beforehand, as everyone is so supportive. It's like having another family and we never stop laughing and joking about our mishaps and experiences. All the best to you and thanks again for posting. Belinda.