Community Forums

Two weeks out of su...
 
Notifications
Clear all

Two weeks out of surgery

13 Posts
6 Users
23 Likes
703 Views
(@nikkir)
Joined: 2 years ago
Posts: 6
Topic starter  

Hi all. I’m so glad I stumbled on this page via Veganostomy’s Youtube channel. I really hope I can get some emergency advice!

Background: For 30 years after almost dying from a severe case of food poisoning, I was diagnosed with salmonella induced IBS-D. I had great success with Rx’s and was able to return to my performing career and business, but then I started having Diverticulitis flares. Between those flares and the worsening IBSD, I became a hermit, afraid to leave the house or be more than 30 seconds from a bathroom.

Over the years, I had 3 hospital stays and several minor but painful flareups, and after each one the chronic diarrhea would get worse. Every time I tried to eat right...nuts, seeds, increased fiber...I would end up back in the hospital.

Between November of ’21 and last month, March ’22, I had three ER runs and two 5-day hospital days, and stopped eating solid food at Thanksgiving. I had a PIC line antibiotic to keep the infections at bay until I could get another colonoscopy. The colonoscopy was cancelled after 5 minutes in because of the severe inflammation, and I was sent to the ER because the pain was so bad. My sigmoid colon had attached to my bladder, creating a fistula, and was also adhered to the abdominal wall. The pain was excruciating. I was scheduled for a resection March 25. After ten hours of surgery, I awoke with an ileostomy. The surgeon says it’s temporary, but we’re not clear on how long before it can be reversed. He’s hoping by July. I’m still worried about control issues if we reverse it. But I’m also having leaking issues with the bag, so I don’t know what’s worse!

The first full week out of surgery, I felt amazing. I took no pain killers, and would have gone dancing if I’d been allowed. The ileostomy was amazing, the pain was gone, and I mastered changing it before my first nurse visit. I was so sure of myself and started planning to travel for the summer. Then my stoma started shrinking, and leaking, and my skin got burned from the leaks, and I’ve been gradually getting more miserable.

Not two hours after seeing the surgeon and having him tell me how amazing my recovery is and what a great steward I am of my stoma, it burst opened, then did it again, and again. Today alone, I’ve had to change my bag FOUR times because of huge leaks, all in the same spot. I’ve tried rings and extra tape but they keep failing. My bags are Hollister single use bags, and the skin is so inflamed around the stoma, the adhesive won’t stick close to the stoma. It always leaks down the same belly fold into my belly button, which is less than 1” to the side of the stoma. I’m at a loss and have NO idea what to do next! The pain has increased, especially the pulling skin pain, and I’m afraid to eat. I’m actually running out of supplies and it’s the weekend...I can’t reach the nurse or get new bags! I have 5 bags to get through tonight and tomorrow, and need advice on how to stop the leaking! Any suggestions?

 


   
Quote
VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4176
 

Hey Nikki, welcome. That's quite a journey you've been, and I hope that you see the light at the end of the tunnel once things are back under control. 

Normally, when someone suddenly develops problems with their appliance after a good streak, I have a certain checklist to go through.

However, since you mentioned that your skin is now irritated enough that the wafer has trouble adhering, we can zero in on at least solving the skin irritation before troubleshooting why you started having leaks. 

Of course, I do recommend having a stoma nurse assess the area and devise a plan to tackle it.

In the meantime, do you have the option of leaving your appliance OFF for several hours (or as long as you can) in order to help heal the skin before putting a new wafer on? Simply airing out the akin can help, and I tend to also apply stoma power to the exposed skin to help it dry faster while airing out. When I do this, I will hang a small bag from my pant waist to catch any output.

Are you cutting the hole in your wafer or is it a precut product? 

Being so soon after surgery, I do expect a challenging start as there are so many changes going on and your stoma will change size and shape for around a month or two before it stabilizes. I highly suggest measuring and cutting the hole in your wafer each time.

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
john68 and LK reacted
ReplyQuote
 LK
(@dlkfiretruck)
Joined: 6 years ago
Posts: 1449
 

NikkiR ... welcome to VO! You have a bit of the same IBS story I had. But near the end it was proven my guts had just simply & miserably stopped working completely. My Ileostomy is my lifesaver  & sanity saver!!! 

I agree with what Eric says. To air out the sore skin if you can.  Not always easy though. My stoma has some powerful shooting power behind it, I wouldn't leave  pouch off for long at all!!  Lol!  Stoma  powder is helpful for keeping the inflamedweepy  skin  dry.   Are you on a limited amount of pouches you can use a month??    If this is the case I would try your stoma nurse & leave a message if you can.

If not you may need to go to your emergency department. They should have more pouches up on the floor you had surgery on.    It sure wouldn't hurt to ask.   Go in concerning the painful Inflamation they will want to see it so bring in a pouch or 2 if you can & be sure & ask if there's more in the hospital somewhere & get emotional if need be & insist on seeing a stoma nurse or someone who can help with your skin issue.    Is your skin weepy at all?  It never hurts to have it looked at if you can get there. 

The other thing you can do is if there is a support group in your area & if you have a contact number for them, give a call & see of they can help. Some people have samples around they aren't using & could possibly  share. Your area Facebook if need be??? 

Regarding your frequent leaks. When i had this issue it was because I needed to go back to square one. I had  been using the one or two wipes they used on my virgin  skin in hospital.  I had  to clean my skin until it was literally squeaky  clean of any of the sticky wafer residue and Barrier wipe residue was totally removed.  I used "a lot" of wipes to do this then just water & a gentle cloth then dried it & then more wipes. That was when I felt the difference of residue no longer there.   I Never use a soap of any kind on the skin under my  wafer.  This is one reason I won't shower with a pouch off.  Shampoo & such affects the skin under the wafer also.

Once you've done that, use a blow dryer to warm & dry yours skin & the inflamed area.   Then measure your stoma. Make sure you have the right fit.  Cut the hole turning the bag not the scissors. This gives you a smoother cut. Also cut just on the other side of the line you traced on the wafer.    Are you blowing off excess  stoma powder?  Too much will draw moisture from your stoma  under it. If you Inflamation is at the hole of the wafer this will be harder to heal up but its not impossible. I once changed a pouch every 2 hours the 1st day with weepy inflammation then slowly expanded that time frame the following 4 or 5 days.   Make sure you use skin Barrier wipes or spray. I prefer The spray over wipes any time. Dry it with the blow dryer. 

If you can... wrap your stoma to have it dry as possible before putting on you pouch again.  When you apply you pouch warm the wafer before you put it on  your skin with the blow dryer  but don't make it too warm you don't want to burn your skin.   Fold the wafer in half away from you to put it on & make sure you get it in the right place guiding it carefully on from the bottom of your wafer up. I use a tightly rolled up square to TP to poke my stoma into the hole I cut  then holding your pouch in place work the edge of the hole you cut by gently pressing you fingers around the lower edge 1st then work around the hole. Do this for several min.  Keep the soft pressure on that whole area. I use the cap from the barrier spray can to apply pressure to the while edge at once now. Eric had suggested to someone to try an empty TP roll & put it over your stoma & press the edge of the hold you cut with it. Make sure it's not too big though!  IF so JUST use your fingers. 

Your still healing  & doing well & thats great. Don't let yourself feel discouraged by these leaks & tender skin. Things will improve again.   For months I used to lay down for 20 to 30 min. After a new pouch is on & also placed a warm hot water bottle over a washcloth over my stoma & wafer area of the pouch. This helped the wafer secure to my tummy better too. Its important for a secure hold to not be too active right away after a pouch change.  Plus laying down was a good excuse for some reading time! Bonus!...lol! 

I hope this is helpful. Let us know how things go for you. I hope your pouch supply issue is resolved! All the best! 

Linda

Linda


   
john68 reacted
ReplyQuote
(@dogtalkerer)
Joined: 6 years ago
Posts: 313
 

Can you clarify some of your comments?

You mention single use bag and bag bursting open?

Single use bags sound like closed end bags normally used by people with colostomies.   a drainable bag is a better solution for an ileostomy.  I have a colostomy but use drainables bags. 

Bursting open sounds like a gas problem? Again this is where a drainable bag is better suited as you can easily expel gas from the drain end as it builds up.   This also gives you the ability to frequently drain the bag keeping it mostly empty of liquids/solids.

So im not clear what you are refering to here?

You can probably find bags at any hospital pharmacy store. 


   
john68 reacted
ReplyQuote
(@nikkir)
Joined: 2 years ago
Posts: 6
Topic starter  

@veganostomy I have the cut-to-fit bags, and last night’s bag I cut smaller than previously. I can feel it against the stoma, but it seems to be working well. My brilliant husband also cut a customized half-circle in the side of the bag, over my panicked objections, leaving ends of adhesive to wrap into my belly button. Turns out it worked like a charm. I took an anti-diarrhea Rx, and made it through the night with no incidents, although I woke to empty the bag about 4 x due to anxiety. 
I plan to shower today, and will try leaving it open to the air. It’s just so active, I wish it had an off button! But I will try the waist/waste bag and stick close to the bathroom. Thank you so much for the response and advice!


   
LK, VeganOstomy and john68 reacted
ReplyQuote
(@nikkir)
Joined: 2 years ago
Posts: 6
Topic starter  

@dlkfiretruck Linda, thank you so much for all the detail! Somehow, in spite of what I thought was great nursing care at the hospital, I was sent home only with bags. No powder, no barrier wipes, nothing. I ordered some Stoma powder for overnight delivery today, and will contact the home nurse tomorrow. He’s not the best...last time he was here, he ripped the last bag off so fast I bled. I swear I already know more about this ileostomy than he does. He didn’t even show last week. I requested another nurse and the company said he’s the only one they have! I’ll be calling my insurance company on Monday, for sure. 
I appreciate the suggestions for getting the wafer to stick closer to the stoma. I do think that is the #1 issue, and then once it leaks under the wafer, it finds the little valley to the belly button and, well, ewww. I will spend extra time on that after airing out the sore skin. Anxious to get the powder and wipes, too. My husband is going to check some of the local pharmacies but most are closed on Sundays. Have you been able to get these at a store, or have to order them? 
Thank you again for the warm welcome and great advice!
Nikki


   
LK reacted
ReplyQuote
(@nikkir)
Joined: 2 years ago
Posts: 6
Topic starter  

@dogtalkerer Oh, sorry, I’m still learning the lingo. The bags I have are drainable. I thought of it as single use since I have to dispose of it once it’s removed. Sorry for the lack of clarity!

My sister overnighted some extra bags she got from her ex’s nurse-wife. They were delivered at 6am! Fast service. They’re Conva-Tec, cut to fit drainable bags that use a clip. I haven’t tried them yet. The bag I put on last night with my husband’s customized cutting has held very well. So I’m sure I have enough bags now to get through to tomorrow, where I can contact my insurance to get important supplies like the Stoma powder and barrier wipes. 


   
LK and VeganOstomy reacted
ReplyQuote
(@nikkir)
Joined: 2 years ago
Posts: 6
Topic starter  

This is amazing to get so many supportive responses so quickly. Thank you so much! Quick question: I have several incisions/stitches under the adhesive that itch and bleed when I pull the adhesive off. Any recommendations for an adhesive-remover wipe that won’t compromise the attachment of the next wafer, or risk infection on the incisions?

Thanks again. I am so glad I found this page!
Nikki


   
LK, zhtfreak and john68 reacted
ReplyQuote
(@john68)
Joined: 6 years ago
Posts: 2018
 

Hi Nikki, Welcome to the forum, you have great advice above. In my experience the adhesive remover spray or wipes of any brand shouldn’t do any harm to the new wafer. When removing peel a corner back and spray towards the wafer. Skin is easy to damage but it’s surprising how it can heal. Wrap your stoma to keep moisture from the skin and dry well. It’s all a lot to take in but you will soon grasp it. Stoma care can leave a lot to be desired. And never stand for any one removing a wafer as you experienced. We all had to learn and never not ask ?

ileostomy 31st August 1994 for Crohns


   
Tigerlily and LK reacted
ReplyQuote
(@nikkir)
Joined: 2 years ago
Posts: 6
Topic starter  

@john68 Thank you so much. I get confused about “allowable” skin care, but I really do need an adhesive remover. Even removing my bag myself this morning, slowly and carefully with a wet gauze pad, was excruciating. I’m also seeing a buildup of residual adhesive that I can’t get off with just water, so today I’ll be shopping for a good adhesive remover that (hopefully) won’t sting. 
Thanks again for your advice and encouragement!
Nikki


   
LK reacted
ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4176
 
Posted by: @nikkir

My brilliant husband also cut a customized half-circle in the side of the bag, over my panicked objections, leaving ends of adhesive to wrap into my belly button. Turns out it worked like a charm

That's wonderful to hear! I've done this in the past, but try to only cut the absolute minimum from the wafer, if possible. The more surface area it has to stick, the better. 

Posted by: @nikkir

I’m also seeing a buildup of residual adhesive that I can’t get off with just water, so today I’ll be shopping for a good adhesive remover that (hopefully) won’t sting. 

Most, if not all, should be no-sting. If you can only find a spray, spray it on your gauze pad and use it like that. If not, wipes are great.

I would rinse the area after using adhesive remover, since any residue can cause the next wafer to not stick very well. 

I hope things continue to improve. ?

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
NikkiR, Tigerlily and LK reacted
ReplyQuote
(@squeakyandliza)
Joined: 5 years ago
Posts: 992
 

@nikkir 

Hi Nikki,

For me the best thing has been to use an adhesive remover spray to take off the old bag. Then I use adhesive remover wipes to clean off my skin. Then I make sure to clean off my skin very well with water to get rid of the remover residue, otherwise the new bag won’t stick. 

And just before my surgery, I started following Eric’s suggestion to use alcohol on the area before applying the new bag, but will wait until my skin heals to start doing that again. ?

I have had quite an ordeal with leaks, so I can definitely feel your pain in that respect. Hang in there!!  And never let someone rip a bag off you like that again. That is so cruel, or incredibly inexperienced, to give him the benefit of the doubt. 

Call all three of the ostomy companies and ask for samples of adhesive remover sprays and wipes. They are such a lifesaver!!  If they won’t send you some, let me know and i will send you a can on mine. ? I have Kaiser insurance and they allow me a can of spray and 50 wipes a month. Plus every time I see my ostomy nurse, she gives me the can she opens to take off my appliance, since they can’t use it on someone else once they have opened it. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
NikkiR and Tigerlily reacted
ReplyQuote
 LK
(@dlkfiretruck)
Joined: 6 years ago
Posts: 1449
 

@nikkir ... Oh Nikki... I'm somewhat shocked they sent you home with Only pouches.  I'm so sorry you have been failed so badly by all those involved in your release care and stoma nurse care.  Ugh!!!!! 

Am I understanding right?  Do You have a sister with a stoma?? I am so glad she was able to send you some pouches so quickly. Your hubby did a clever thing  by cutting the sticky away from your sore,area & I very glad it worked for you. Give him an extra Hug!! 

How about we have a straight up chat between two gals here, okay?  I won't wait for an answer. Lol!  If you have insurance you should check with them to find out what they cover or not. I'll tell you what I think are the more important products to keep your skin healthy & to make your life a little easier with your new little side kick. If you haven't already you may find giving your stoma a name helps with acceptance & even yelling at it when it causes issues! Lol. 

1st things 1st... Its fairly  important not to cut the hole too small as it can make  your stoma turn funny colours & even make it bleed.  I've accidrntly done this myself.  The good thing is when it happens  the wafer,  usually softens in a few hours but its important to protect it until then.  If its too tight then yes, maybe put on a new pouch.  Cut the hole  by turning the pouch not the scissors, you get a smoother edge this way and cut just on the other side of the line you traced on it. Measure your stoma every time you change your pouch for the 1st few months as there is still healing & swelling to take place & it will change sizes. Save the plastic from the one your wearing to check if there's a change. Use a hand held mirror to check under your stoma for skin issues & fit. .  

Like you, I only see my belly button when I change my pouch & I don't miss seeing it was much as I used to. I never realized I was so attached to it before! Lol! You'll get used to it too I imagine, but it takes time. Q-Tips are great for cleaning it or a tight rolled up square of tissue.   

If you can, set aside a drawer or shelf even a covered container where all your supplies can be in one place for pouch changes. I use one of those 3 drawer plastic dressers with wheels on it I bought at a hardware store & that works great. Plus in an emergency It can just be picked up & put in the car not leaving anything behind. We have a lot of forest fires where I live & one summer we were given less then 5 min. to be evacuated & it worked great as my Son just put the whole thing in the Van, so perfect. Ofcourse that depends on the amount of room you have in your bathroom too. I keep a small flashlight in my drawers incase there's a power outage while changing a pouch & that has happened! Lol!  

On changing your pouch, it helps if you can just relax & take your time. Turn on your fav. music & sit down if you prefer. This changing time will become old hat soon enough. At the risk of numb feet, lol,  I change mine sitting  on the toilet. I have a high output stoma & find changing my pouch on the throne makes a mess easier to clean up with tissue, baby wipes help too!!  I use an old grocery bag, no  holes if possible & turn the edges back & set it in the crotch of my pants tucking the open part under the edge of my legs and the rest up and protecting my clothing.  Line up all your supplies first,  even Q'TIPS for cleaning your long lost belly button! Lol!   If you have a blow dryer have it handy for warming your wafer and drying the Skin Barrier Spray or Wipe. If not just have something you can fan the area dry with. I really only used the Skin Barrier Wipes if I need to Put an extra layer of it around my stoma. Otherwise I use mainly the Skin Barrier Spray & find it works great. 

The " Skin Barrier Spray/wipes " are really important for protecting the skin from the acid in your output. As said above the products are usually Non-Sting & worth the purchase.  I use the Hollister Brand.  I have never had to go without & Its been 13 yrs with very few major skin issues. So if you can get the Skin Barrier products its well worth it. You don't need heavy lauer of it but I find I have more control of that using the spray. Too much can be removed while wet with a wipe. 

Lets talk Adhesive Remover Wipes and Spray. Like you I had someone rip my pouch off my skin causing several open bleeding sores. After the test he just put the new pouch & wafer right on top of the sores never saying a thing about it. . . Ugh!  I was sedated for a scope through my stoma &  found out about the sores at the hospital due to a leak. I made a point to tell this to the surgeon when I saw him  for followup & showed him pictures I had taken & told him how it took 7 weeks to heal the wounds!! I was beyond annoyed & believe me, thats the nice word for it! Lol! 

As you found out you have very tender skin under your wafer. I think we all go thru this.  Using the Adhesive Remover Spray was like a gift for me. It was quicker removing the pouch & cerainly so much easier & it also meant using less wipes which I feel irritated my super sensitive skin. But you still need the wipes fir the gentle "scrud" to remove residue. You need to remove all or as much of the residue under the wafer & the skin Barrier layer as you can each time you change your pouch.  Then O wash with just plain water & either gauze or a few small squares of $ Store bar towels.  Your stoma always produces a digestive fluid & dues move a bit while changing so If you can cover your stoma some how it will help.  My stoma is usually a good inch or so long &  I can wrap it with tissue. I use 3 squares & fold in 1/2 to make 1 1/2 sqs. in length. Then I hold it by the  kitty corners & fold it. It will sort of look like 2 triangle flags together.  Then I wrap my stoma in it with one of the flags point out under my stoma & wrap it up.  I can actually tuck the last little corner between my stoma & tissue to hold it in place. But  I have used scotch tape to hold the tissue closed at times too! Lol! You can also buy a pack of dry bulk gauze pads about 3 inch size maybe to cover it too. Its not a requirement , lol, but it helps if your stoma gives you a shot of output while trying to clean the skin & keep it dry until a pouch is on again. You can give a  Q-tip or 2 a shot or 2  of the adhesive remover spray to help clean residue from you belly button area also. The spray helps protect the stitches so there's no pulling on them nearly as much while removing the wafer, go slow. Stitches are usually self dissolving stitches. 

Its pretty common to have a lot of output for some time after your surgery but it will settle down depending on what & when you eat. I eat my dinner around 4 p.m. & a light snack about 7 or 8 p.m. drink lots of fluids in the day time to keep hydrated. I love to drink V8 Juice when I feel I'm not eating well enough or if I feel dehydrated or even feel always hungry. I add some salt & pepper & my fav. Herb seasoning to it also, stir it.  Keeping a food journal for a few weeks or even months will help you figure out what makes your guts cranky as well.  Some foods turn the plastic of my pouch a lovely colour too. Lol!  Some foods leave a coating in your pouch as well. Green beans for me are the worst & my fav.,  V8 turns it reddish.  Beets can make it look like blood in your pouch or even urine.  I haven't found any magic potion to remove it yet so I try to time my green bean meals with pouch changes they next day or so.  You may find changing your pouch 1st thing in the morning is  a good time  because of no food all night. I don't even take a drink on that days or I get output in mins. Of drinking even water. Lol! I set my supplies up the night before it helps if I'm still sleepy when I get up. 

I also use the C- shaped elastic tapes that go around the outside of the pouch edges. I just feel it gives me extra security both in my head & if I get a leak. Over the years when I've had leaks these tapes have saved my clothes from stains as I can catch it before it gets to the open air... most of the time. Leaks are a small part of these pouches but as you go you'll figure out what makes them work best for you & hopefully  you'll get less & less leaks.. 

I think most of us have made some clothing changes to help keep pressure off our pouches but try & watch Erics videos on Clothing Options for ladies. He has volunteer photos sent in & all sorts of ideas for clothing options & even swim wear & bed time wear.  He has some lively young ladies speaking also.  Having an ostomy for me  was really the start of a better healthier life. It is  a life saving surgery & I certainly appreciate mine a ton!! 

Nikki,  I know this is long but I figured they set you out with out enough supplies so they may not have informed you of these things either.  if I haven't covered anything you want or need to know don't be shy,  please just ask. No question is a stupid question here. We all have our fears & or issues we couldn't solve on our own or just need a verbal hug & encouragement even. We are here for you . Sadly you were terribly let down  by the medical community but it is not always like that. I had a similar information deficit also so just  know your not alone. We don't know what to ask because we weren't correctly informed in the 1st place. 

You next step is to line up your supplies as soon as you can.  Depending on where you live & what's available to you ofcourse.  Call the companies you get supplies from &  ask about samples.  You can choose a pouch that works right for your needs. I use a Hollister pouch with a rollup velcro closure. Its so much easier then the time I tried a clip closure. 

Hollister & Coloplast are very willing to send samples so don't be afraid to ask  you'll be a customer for a long time & they want your business so just ask what you need to know.  Check out their websites too if you can.  You can also use a Liquid Deodorant called M9 that Hollister makes. I use more then instructed to put in the pouch but start with what they say to use if you get them.  I find the drops eliminate most if  not all of the odor from the output.   They also have a Room Odor Eliminator Spray if you feel you want try that. Phone numbers... . . . 

Hollister   1 - 800 - 263 - 7400 or 

Coloplast  1 - 888 - 880 - 8605

 I get most of my supplies from my Pharmacyst but they just charged too much for the M9 & the Osto E Z Vents. The vents are great for quicker more convenient release of built up air in the pouch. So I order from Payless & get my supplies within 12 hours usually.   

Payless    1 - 866 - 533 - 0772

I hope this helps you some more.  

Linda


   
NikkiR and Tigerlily reacted
ReplyQuote