Problems with hair loss, skin pain around stoma, guilt of not working

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LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 11/12/2008 3:11 PM (GMT -6)   
I had an ERCP in July and had complications with a perferation of the duedenum and ended up having two more surgeries and one more perferation to the large intestine and and absesses, now have a illieostomy. I am to have it reversed in a month or two. Some problems I am having are pain around the stoma from irritation from the liquid pooling around the stoma even though I use paste on the skin barrier. the liqiud/stool seeps around the stoma and on to the skin around it. it is just a small area (1/8 inch); even though we are using stoma adheasive powder and nystop. I have had the appliance for about 2 months. I am working with a wound care nurse and my husband is an RN and he helps me change it about every 3 days. It has leaked in the past in the middle of the night all over my bed. I have to wake my husband up and change it ( I cannot do it myself). This has gotten better since using the paste better and making a better seal but it still seeps a little on to the skin.
 
Also, I feel guilty for not working or being able to work. I have worked and pulled my own weight for so long as a single mom and just got married on month before this all happened. He is a great man and takes good care of me. I am living off my savings until I can go back to work in a few months. But also I have applied for Social Security. He is spending a lot of his money for things (food, Gas).
My hair is falling out due to the malnutrition while i was on TMP (not able to eat food) in the hospital for 9 1/2 weeks. Any ideas? It is not too noticable yet. I can see several hundred hairs a day that come out. I was on so many antibiotics IV for so many weeks. I can assume in the next few weeks I will need to go to wigs, weaves or head scarves/wraps. Or shave my head. Ha! I am just so glad to be alive. I was so sick fo so long and almost died so many times.
 
That whole thing was a nightmare. I am a 45 year old woman.   
 
I just got my drains out of my stomache and the pic line cathetor out of my neck and got out of the hospital Sept 13. I still cannot do much. I was told I won't be able to work for 6-12 months. I am able to function for a couple of hours but need to rest most of the time. I am new to this and hope to finnd some suport through this forum. Thanks.
Lesa
 

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 11/12/2008 7:13 PM (GMT -6)   
Ok, first, do not feel guilty about not working! you have been very sick and have just had a MAJOR surgery, it's ok to let your husband take care of you!  Different people do this differently, and there is nothing wrong with either way, but here we look at it as our money (i am a stay at home Mom now, but before i had my son i worked) and if one person has to pull the weight for a while, that's what marriage is about.  Anyway, its good for you that you have a RN for a husband, my husband is a nurse too, and that was helpful at first!
As for the leakage, when you put the wafer on, use the hair dryer on it for a minute or so, that will help it stick better.  If you are still using the skin prep, that can keep you from getting as good of a seal.
At  night, i sleep on a waterproof pad that i sewed a sheet on top of, so it feels like the bed, and if i have a leak, i can just change my clothes and the pad, not the whole bed!  really, it's more of a security measure, but it makes me sleep better.
As for your hair, it will quit falling out, i promise, it will just take a while, i went through that four times, each time i thought i was going bald, i even bought a wig!  But it did quit falling out, and about six months after surgery it started coming back in, and it's getting thicker, i still only have about 2/3 of the hair i had before, but it's getting better!
 
What wafer and stuff are you using? we may be able to help you better with the leakage if you tell us how you change and all.

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 11/13/2008 4:56 PM (GMT -6)   
Hi Summerstorm.

Thanks for the response.It is encouraging. My stoma is now swelling and red and the skin around it is irritated. I am going to the woud clinic again tomorrow for them to try to get a better seal around the stoma and keep the liquid off the skin. I have been trying different ways each time to get a better seal. Right now i am using the hollister skin barriers with filters, drains, adapt paste, medical adhesive, 1 3/4 inch. But it seems too small right now with the stoma swelling. I am thinking of trying the 2 inch convex convetect but they dont have a good bag that does not leak. I hate the clamps. and the other ones don't stop all the liquids from leaking like the Hollister lock and roll do. The covex seem to work the best for me. We are trying to change ever three days. Do you change it your self? I went to the doctor and he wants to check my thyriod tomorrow. How long have you had your stoma?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/13/2008 9:32 PM (GMT -6)   

Ihave had mine since april 2007 it took me forever to get to where i could change it myself, i could not comphrend how i could do that alone.  but out of necessity one day i figured it out!  and i have it down pat now, takes me about 8 minutes.  If you want i will walk you through how i do it.

anyway, alot of people on here swear by eakin seals, i haven't tried them.  It'spossible you may be using too much paste, i did that a few times.  it's pretty much a trial and error kind of thing. 

Is your output really watery, i find it leaks more if it is watery or i am really gassy, then i have more seepage. 

I wear the hollister new image lock and roll, that's what i started with and i really like it.  i had the one with the clip is what they put on me at the hosptial and i hated that! 


PB5
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/13/2008 11:24 PM (GMT -6)   

 

Lesa,

1st of all do not feel guilty about not working. I'm 47 and I had been working and was the main support for our family (husband and 5 kids) for 17 years when I went into the hospital for a one day microdisectomy on my lower back. Woke up 8 days later in ICU where they said a lung machine had kept me alive and with an ileostomy. That was in April 08, spent a month and a half in the hospital. I had my reversal in September, Needless to say I am still not working but with the support of my husband and family things have begun to work out. They will for you also. Do you have a counselor? They sent me to one ( which I did not believe I needed) and she has helped me tremendously with the issues I had letting others care for me and not working any longer. My doctors recommended chewable vitamins and pedialyte for the hair loss. This helped slow down the hair loss for me. You can ask your dr about it. If you have a prescription plan they can write you a precription for the pedialyte to defray the cost.

My husband had to learn from the ostomy nurses how to change the appliance. I also had alot of seepage, had to stop using the skin prep, change every three days. The amount of stoma paste made a difference. It really is trial and error. I found that if my bag became more then 3/4 full it would leak in my sleep. We began to set the alarm clock for every four hours to get up and empty it. Sounds silly but I slept better.

Hope this helps a bit. I also felt that it was a nightmare but please remember you are not alone.

 


LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 11/14/2008 10:10 AM (GMT -6)   
I automatically wake up about 3 times each might to pee and empty my bag. I don't et it get too full. The contents are usually liqiud most of the time, but are becoming thicker this week. Did you find your stoma changed sizes after a few months? Mine is now too big for my skin barrier and going to try the next size up today. I am going to change suppliers too. I was using egdepark but Byram is cheaper and Ihave new insurnce through my husband niow that I am not workinng. We now have to pay 10% plus the deductable. Thanks forthe nice responses. they help. Istarted walking on the tread mill .5 miles ever other day. The Doctor wants me to walk 2 miles a day, when I am able. I need the stamina for the next reverse surgery. I had gotten so weak from being sick and 3 surgeries and bed rest for 9 1/2 weeksinthe hospital.

Summerstorm...can you walk me through how you change yours?

Lesa

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/14/2008 11:15 AM (GMT -6)   
i surely will! i hope i don't confuse you though! I started doing this a while ago, i always keep three boxes with a change already made up. the box has, a wafer, already cut, a bag, a trash bag, my paste and a some of my towel squares. I bought cheap white towels from wal-mart i cut them into small squares and use those to clean and dry aroudn the area, its cheaper than paper towels,lol. i like to have those boxes in case i have a leak it's fast to get my stuff!

I almost always change after a shower. Anyway, this is what i do, i put my box of stuff on the counter in the bathroom. I have a waterproof pad and towel that i put down underme, so if i should leak, its much easier to clean.
I pull the backing off the wafer, i put the paste on there. Then i take the sticky off the bandaid part and lay that on the floor. I also lay two towelsquares down there.
Then i open the trash bag and put the tail end of the bag in it. I pull down the top of the wafer, it's still attached at the bottom, and dry and clean that area, i just peel the wafer down and clean and dry as i go, leaving the bag attached to it and on as long as possible means if it starts putting out it's gonna do it in the bag! then when i get to the bottom, i put a towelsquare over the stoma and use one to clean off under the stoma, so that it is compeltly ready. Then i lay down on the floor.
I hold those squares on my stomach while i get my wafer and bag and one other square. I hope i don't loseyou here. I pull up the towel, very quickly slide the wafer over, then put a clean towel over it. I smooth that down a little. THen i snap on the bag, i usually lay there for a few seconds, smoothing it down somemore. Then i get up and make sure my bag is snapped on good. I think the bag attaches betterwheni am standing up. Then after i have the bag attached good i grab the hair dryer and i use it on the wafer, i just blow the air on there, smooht with my fingers, you will be able to feel that's it's a little smushy. Anyway, then i am done!
takes me about 8 minutes and three towel squares now.
The first time i did itby myself it took me thirty minutes and about 20 towel squares, lol.


You may be using a kind of soap that is interfering witha good seal. Some soaps have something in them, it's a good idea to use a very plain soap, i use gold dial. You would think ivory would be a good one, but i had problems with it! And like PB5 said, you are probably gonna have to give up the skin prep. You can eat things like bananas and peanut butter and french fries to thicken it up, or you can put some of those gel tabs in the bag and they will soak it up and make thick
hope that helped a little!

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 11/14/2008 1:25 PM (GMT -6)   
I have not had a leak in several days now. Thank God.

I bought some Ivory soap today.

I like to take a shower with the barrier and bag off. It feels good and I can clean around it better. Doc says this is fine. A little messy but I am inthe shower and my drainage is liquid.

It is so nice to talk to someone else who can relate.

At first I would lay there and cry the whole 40 minutes it took to change and clean. Now it is less tender and we can do it in 20 minutes. My husband did it the other morning before work so we got up at 4:30am so he could then get ready and I went back to bed.

Do you have leakage around the wafer and between the paste and stoma at all on to the skin that sits there between changes? I find this is very uncomfortable. I find we cannot get this problem to stop.

I had a yeast infection there a couple of weeks ago.that has since cleared up. My opening to my stoma is on the far left side of my stoma, almost on the skin. so even though we try to keep the liquid off during the wafer application it still may ooz between the towel or tissue and the paste that is on the wafer. My husband would rather do the changes in the monring when I have not eaten so there is less leakage during the process. ok well gotta go the clinic.
Lesa

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/14/2008 3:15 PM (GMT -6)   
yeah it's fine to shower with it off, personally i can't do that, just too gross for me, lol.

Occasionally when i pull off my wafter i will see that there is some stuff on the wafer.

If am not sure i understand what you are saying about the opening being on the side. But when i do my change, i hold the whole stoma straight up in the the towel It's hard to explain that.

glad you haven't had any leaks lately, that is awesome!
hope you get some good help at the clinic!

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 11/14/2008 4:44 PM (GMT -6)   
My stoma and skin are so sore. I cried again this time during the changing. It took them an hour. The whole time I had to keep wiping and dabbing the stoma as it leaked. Very uncofortable. Glad to be back home. I am worn out today. I cannot "hold" on to my stoma. It ia too sore. The skin around it it red and very irritated too. We'll see how this one holds up. I am just going to sit here and take it easy. I have been busy most of the day. My opening to the stoma that the stool liquid comes out of is on the left side of the stoma. Not the middle. So, it is hard to keep the ooz off my skin and from leaking under the wafer as the stoma opening is on the left side of the stoma. My husband was wanting me to go back to work as soon as I could. I told him I would let him know when I felt well enough. But it needs to be soon (3-4 months). I applied for SSA that will help if I get it. And I would not feel so bad. Me staying home long term is probably not an option.

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 11/15/2008 4:07 PM (GMT -6)   
Summerstorm,
Do you cover your wafer and bag when showering? Do you wear a belt that stablizes the bag? I am most impressed with and using the hollister products. I like them the best. I am using the 14403 barrier New Image skin barrier with floating flange and 18193 New Image Drainable pouch with filter. I want to try the 15804 barrier and 18194 pouch. I am also wondering what is the differenc between this barrier and the one called Center Point Lock convex flextend extended wear barrier and how it might function. Any thoughts?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/15/2008 9:04 PM (GMT -6)   
i dont cover mine when showering i just fold it up and tape it up. Then dry it with the hair dryer afterwards.
I have no idea about the other stuff you are asking, cause i have not changed my stuff at all! and honestly, i still dont understand all the terms, lol. i wish i could help you with that!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/15/2008 9:11 PM (GMT -6)   
oh and i dont wear a belt i dont understand those

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 11/15/2008 9:46 PM (GMT -6)   

LesaJT--sorry to hear you are having such problems!  Glad you found this forum...it has some of the best info regarding ostomies!!

I have a few questions for you: 

1)Do you use immodium?  It helps to keep your output thicker, which in turn helps your skin. 

2)I looked up your product that you are using and I also use the Hollister brands, and love the lock and roll and their filter actually works, but I am not a fan of the cut to fit, IF you have a ROUND stoma.  I read that your output comes out to one side, but when the wafer/pouch is attached should still drop into the pouch.  Is your stoma an odd shape?  If it is round, I would suggest using a wafer that is the appropriate size.  They tend to have more durability when you use a wafer with convexity.  I used to cut to fit, then went to the "mouldable" version, but with my need for convexity I wasn't getting the holding time right around the stoma.  Once I switched to the correct size, along with an Eakin Seal instead of paste, I stopped having problems with my skin.  I think summerstorm also mentioned that using skin prep can also weaken the seal...

3)Do you know if you eat a marshmellow about 15 minutes prior to changing your appliance you should be able to get through the change without it passing any stool?

I hope some of these suggestions help...let us know how things work out for you!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/15/2008 11:53 PM (GMT -6)   
i didnt think about telling you about the immodium! that does help. I take two before i go somewhere that i don't want to have to be emptying very much. Although, be warned, if the immodium keeps you from going for a while, when it wears off you are gonna go alot, lol.
I have never tried the marshmallow!

Ohio76-you buy the wafers precut?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/15/2008 11:55 PM (GMT -6)   
oh and your hair, i keep meaning to tell you this and i never remember, lol.
Anyway when mine was falling out the shampoo and stuff that helped the most was the brillant bruntte kind. It was like the one for fragile hair i think is what it said. I don't know if you have brown hair, but i dont think it really matters, lol. But i noticed when i used that less hair fell out in the shower and afterwards.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/16/2008 8:38 AM (GMT -6)   

summerstorm--I do buy mine precut ever since I had to switch to a convex wafer (and after the swelling went down/stopped changing my stoma is round)...and I found that, at least for me, it doesn't deteriorate as much right around the stoma...The Eakin Seal is also helpful (I am lazy and it is SO much easier then paste).

I, too, had a lot of hair loss.  It hasn't stopped completely yet, but not taking any meds has been the only help...I also cut about 6 inches off which makes it less noticeable.


LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 11/16/2008 10:51 AM (GMT -6)   
What is the Eakin Seal and how does ito work? do you have a part number from a catalog? does it take preperation to use. sounds like it is easier than paste. I just showered without the wafer and bag and no leakage. I saw thre different vidoes onnYouTube on changing ostomy bags and wafer. Kind of weird to watch someone else. But I see a couple things that heped me.

I was talking to my husband and had mentioned to him about going back to taking immodium. I took one before bed.It might have helped a little.

my stoma is oval. about one inch by 1 3/4 inches. We have a hard time getting it the right size and seem tohave a bit of skin on the sides that gets sore and red and allows it to leak around and under. I have gone to a convex as well.

I just started using a belt tht clips on to my bag. I helps stabilize it and seems to leak less and won't pop off. I only had that happen once. I use the wafer tat has the floating flange and it keeps tha from moving too much. My wafer and bag tend to buckle when I sleep as I sleep on my side and it has pressure in the middle that will push out and leak.

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 11/16/2008 10:43 PM (GMT -6)   
Sounds like you have had a lot of the same problems that I've had. At first my husband had to change my wafer and bag for me.(I got a tiny little scolding from someone on here :) ) ? So I decided that I might be able to do it myself. WoLa I could and now it takes me about 3-5 minutes. What really helped me was when I started using Eakin Seals and moldable flanges (ConvaTec). Also, I use an ostomy belt all the time during the day because I feel more secure.

Good luck. You can cope.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/17/2008 5:47 AM (GMT -6)   
LesaJT--the Eakin Seal is a mouldable ring that can be formed to any shape you need...any does protect your skin better...I alway make mine a little smaller than the opening of the wafer. It won't hurt the stoma if it touches and it will cover that little bit of skin that sometimes gets missed.

You do have a challenge with the shape of your stoma...just make sure you confirm the size every so often so you are cutting the shape correctly...a new stoma can change quickly! It sound like a belt is a good choice, too...

Let us know how things improve!

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 11/18/2008 12:54 PM (GMT -6)   
I have a couple of different types of moldable rings as samples. I am going totry ti use the Convatec 404594 surfit moldable skin barrier large with flange next. And they alsosent me a sampe of a high output pouch for night use #401558. I keep waking up 4-6 times a night to empty the bag. So maybe this can be effective. I need to figure out which ones work the best and order them. I don't think Hollister has moldable??? I might have to stick with the Hollister cut to fit and cut them myself. Can i use the convex with paste or a seal?
Lesa

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 11/21/2008 3:12 AM (GMT -6)   
Lesa about your hair loss Its best If you just cut it short right now then it will look better when it grows back.I lost alot of mine too my surgen says it`s normal when you have been sick.Also I did not start lossing mine until my body was starting to get better.He also says that it will come back thicker because it will be healther.Chewable vitamins are also a good idea.Your body can absorb more of the vitamins when thay are this form then with a pill.Someone on this forum says that thay have liquid vitamins also but I bet that childrens chewables are cheaper.I hope that you work out your issues with your bag soon.Before I had my reversal I had alot of problems with my bag and if it leaked at night I would just cry.
Lost half of my small intestine.Ilieostomy for 5 months then reverst,Nerve damage to right leg,part of my right hip bone removed,Cronic pain,hernia,infection in my back called discites,and depression.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 11/21/2008 10:06 AM (GMT -6)   

I set up a box with all my supplies and used it on Wed. with my daughter as stand by to be a gopher. I did it by my self and it took am hour and had to change it twice. The first one split and was defective. Another one in my kit was defective and when I tried to pull the plastic off it pulled the wager away from the tapeso we had to find another one quick. I only had a couple left. I a ordering a size bigger as my stoma is swelling up and over the 2 1/4 inch. So went to the 2 3/4 inch to try of the Hollister. The one I put on lated 2 days. We took it off last night and my husband helped me since I was tired and have a bad cold/sinus infection. Apperently the lower side of my wafer was letter the liquid onto my skin and when we changed it my skin is very sore and broken down. Seems better today. I knew I couple not sleep last night with it hurting itching so we changed it at 9 pm. Thanks for all the support and ideas. The marshmellows seem to work to slow the out put while changing the wafer.  smilewinkgrin   I am still not sure how to use the the seals.I found a couple of samples. They are small 2 inches. We are going to try it soon. Any suggestions?

 

 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/21/2008 11:04 AM (GMT -6)   
I am curious as to why you don't try some of the ones you cut yourself? that way you could cut them to exactly the right size.
I know you aren't going to leave them on for long now, withthe problems you are having, but a good way to gauge how long you could go without a change is to seehow well the bag is still sticking after a certian number of days. Like, say you change it after 3 days, if it's hard to pull it away from your skin, you could have gotten another day out of your wafer. So the next time you could try four days.
Its awesome that you changed it yourself! it wasn't as hard as you thought, was it?
Call the company about the defective ones, they will replace them, i had that happen a few times also.
Be sure you make up some more boxes with your stuff ready to go, since you empited out the ones you had, i keep 3 at all times, i used to keep 4 but one of my boxes i put stuff in tore,lol

LesaJT
Regular Member


Date Joined Nov 2008
Total Posts : 86
   Posted 11/21/2008 1:03 PM (GMT -6)   
We do buy the ones you cut and cut them, but my stoma is an odd oval and it is hard to get a tight fit. I think I will use the seals and mold them to fit next time. Two problems I have are 1. I leak alot and this is on the left side and when i have it about ready it will leak when I take off the tissue or rag to fit it or measure it etc. It will leak on to the stomahezive or skin and I have to re-clean it and start over to get a clean area to work with, 2. I am physically and mentally still pretty weak and sick. So it takes a lot of effort for me and an hour seems like forever for me to work at a task especially when the darn stoma leaks all the time and makes a mess and has to be cleaned up several times. What a frustrating situation.
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