Hi, I'm new and really need someone who understands!

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janice

Try to make a long story short...cervical cancer 6/06 followed by hysterectomy 6 weeks chemo radiation. 6/07 discovered bowel obstruction caused by radiation damage. Surgery. 12/07 Bowel perforated, peritonitis, ended up with ileostomy, mucus fistula TPN 12 hrs. a day.... 09/08 had ostomy reversal off TPN....05/09 bowels perforated for a second time! Presently back to the two ostomies TPN AGAIN!!

I HATED these bags the first time around and I still hate them!!!!

MOST of the time I'm a very positive person but these bags are getting the best of me.

I DO NOT WANT TO LIVE WITH THESE FOR THE REST OF MY LIFE!!

Does anyone relate???? or care????

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,095 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Titi
Hi Jenice!
If I am related??? Well, sort of... I can't name all the surgeries I had to have up to now. Just I can tell you that, so far, I've had 56 with 45 years old.... Some of them include: Hysterectomy, Mastectomy, Thyroid cancer - total removal, with the result of a permanent and total Ileostomy since 2002... If I like to be with the "bag" (My Prisci!), of course not, but I'd rather be alive than without it... There is no other choice to make! Just deal with that, looking always for a good reason to keep going, what I call "little clouds" in my life... And little by little, I got there... Where??? I don't even know, just THERE... Looking for a good reason or not that good reason to laugh, to enjoy, to dream, to love....

So I DO CARE!!!!!!!!!!!!!!

Just try to be happy every minute in that way to reach the whole day and little by little the whole life.....xoxo
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janice

Thanks for caring, Titi! Like I said, most days I'm positive. I've been up since 1am yesterday when my bag leaked and had to change it again 4 hrs. later.

So, I'm overtired which may attribute to my "whining".

But seriously, I am thankful to be alive. I'm a Christian woman, my faith is strong. I just don't understand why I have to be going through this yet a second time with the ostomies.

My family is my life, my grandkids keep me going but to be honest...I'm finding it harder and harder to be happy and find the good in all of this!

Past Member

Sweetie pie!! I am so sorry to hear this is such a tough time for you!! I do understand!!! Even though we have different situations, the emotional impact that it all can have on a soul is serious. In fact, many of us here understand what you are feeling right now. I'm here for you if you ever want to talk. You have been through a great deal, honey, what a rollercoaster ride. I'm so sorry. It will be okay and not every day will appear so overwhelming. You have my support. Please tell me how I can help you. (hug)

janice

Thanks, wounded doe! Just finding a place where people can relate is already a big help!!!

I know I'm not alone yet, sometimes, I feel like I am.

Been reading and I think I'm gonna like this place!

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
davida

Hi all male members
I am age 51 from the UK. I am thinking of having a penile implant. Can anyone advise
who has had it done?
David

janice

This is an ostomy forum. If you want to know about penile implants, then please go to a penile implant forum!

cancerfree

I can sure relate. I had a J-pouch done in Jan 2003 and in Jan 2005 ended up with a rupture because of adhesions following a pouch scope, a little misjudgment from the doc who performed the literally life-saving emergency rupture surgery and voila -- an ileostomy that could not be reversed, a J-pouch that is still tethered somewhere inside but is too dangerous to remove. But I am still alive and able to thank God every day for it.

As hard as it can be, you have to learn to see the positive.

Froh
Dear Janice

I had a hell of a bad time for the first year of my ostomy and got treated for depression by a very kind doctor. However, much of what brought me around was finding an ostomy system that works and yours, clearly, is not. The leaking and the fear of leaking was an obsession for me for a very long time and there were nights where my significant other could hear me crying in the bathroom at three in the morning because it was the third time in two days I had to change the appliance from leaks.

Here are some of the things I did which may or may not work for you but it is always always always a question of trying everything (an ET nurse can help and I hope like hell you have a good one like I did).

First, I began to be very careful of what I ate before bedtime. Starches were okay, but high fibre (which passes quickly) was not. Second, I measured my stoma and realized I probably needed a larger appliance. Because the problem was largely one of the liquid getting between the plate and the adhesive, I reinforced the adhesive with Hollister's Adapt rings (which are rings of super-gluey paste you can stretch into shape around the stoma). The trick was that I formed the rings to the shape I needed and applied them to the actual plate itself before I then applied the appliance. If no one has told you this: assemble all the material you need and cut it into shape, etc, before you so much as unglue a corner of the old appliance. (And if it is not a question of leaking and just a "normal" appliance change, keep track of all the times in the day when your bag does not fill up quickly those will be the times when a normal change can be made).

Another thing that helped immeasureably was the application of Opsite tape around the entire appliance after it was on (and very, very, very firmly pressed down upon so that the Adapt ring and the adhesive could hold hard on my skin). Ospite tape is that transparent, incredibly thin and very strong tape doctors and nurses use in the hospital and up here in Canada you can get a very long roll of the stuff for about $50 (and it lasts about 20 or so changes if you buy it in rolls like that). This DOES NOT prevent leaks but it does keep the leak in place if there is one, so sturdy is this stuff. So what happens is that if you have what I call a "catastrophic" leak, it doesn't automatically empty onto the bed or into your clothes. You notice it the next time you check.

All of this sounds very sticky (especially the pressing down firmly part) but if you're careful about removal (holding the skin down as you gently pull away the tapes and appliance and using gently alcoholized pads to help if necessary) you should not suffer any peristomal skin problems.

The other thing people forget is that their appliances are manufactured as cheaply as possible so they're not meant to resist everything and, very importantly, the appliance itself can be faulty. So when it happens as often as it does for you, phone the company you are using (Hollister, Convatec, etc) and get satisfaction. The numbers for all of them are available on their websites; don't waste your time with an e-mail, they never answer or even look at it, it seems. But don't be belligerent when you call the people who man the 800 numbers at these companies are very good and helpful people who want you to stay with them (they obviously make a fortune on each one of us!!!!!). They can also be your most important resource: they may suggest adaptations to your system (like with me, the Adapt rings) and will send you a free sample which makes all the difference. They will also replace a box of plates or bags which have been leaking too frequently. If they don't treat you well, change appliance companies! (My Hollisters helpers have been saints!)

Finally, and this is a private trick I passed on to my ET nurse and her other clients that worked for all of them: buy yourself a cheap iPod shuffle (the little ones which you can clip to your clothes or wear around you neck) and load it up with comedy or your favourite upbeat music and listen to this during the changes. You'd be amazed how a good laugh when you're up to your neck in the crap we all deal with can make all the difference.

I wish I could contact you directly by e-mail to talk you down like my nurses used to have to do with me, but, sadly, I can't afford the fees for this service here.

My very best wishes are with you...it is incredibly hard, I know, but you must get through. Life sucks for everyone, for us it just sucks in a different way and only for a bit, I promise you that.

Much, much affection

Gatan Charlebois (aka Froh)
junopete
You know Janet I hardly ever post a negative reply, but in this case, it is warranted.
To begin with stop the whining. If you are having blow outs all of the time it does not take to much sense to figure out why. First if you don't know what you are eating what goes in must come out. However that is not true if you are paying attention, which you seem not to be.
How many different seal rings have you tried? How many different belts, what widths, this goes on forever. How many different brands? Many people to insure a good seal that will last a few days have to stack the seal rings, ever think of that? Why are you blowing out? Is it lack of adhesion, are the wafers or rings just kind of melting, a very common problem? To much gas? Folds in the skin? Not good site preperation? From what I get out of your posts you are just sitting there letting this ostomy thing TAKE YOU WHERE IT WANTS. Instead of the other way around.

The guy that posted about the penile implants. Just how ignorant are you. Among men that have their colons and or rectums removed due to cancer, U/C or what have you, the inability to get an erection is common. The reason for this is the nerve bundle that is in that same area as the operation takes place often gets damaged. Most all surgens will warn of this potential problem to there male patients. So this guy has evey right to post about what may possibly be a side effect from an ostomy proceedure.
However due to your lazyness and lack of research about ostomy's, J pouches and other proceedures and the possible side effects you have have chastized this guy for asking a legitimate question. You should be reading EVERYTHING you can get your hands on.

Moreover are you saying you had a rectal examination done by someone other than the operating surgen? This other doctor made a mistake? How stupid can you be? Did you atleast stress to the doctor you had recent rectal surgery and to be extra vigelant?

I hope eveyone reads this and has the sense to get their ducks in a row about these intestinal surgerys and the long term healing process. To include the negative problems there surgerys inherently bring with them.

All I can say is, if you live in a glass house, beware when you start throwing rocks.

Shame on you;

Rick.....
MrBillYTO
Hey Janice,
I think pretty much all of us who read this site understand what you have gone through and are going through. We may not have had your exact scenario happen but probably something as horribly similar. I think it's great that you are reaching out on this site for some comfort and understanding. I know I often have what I like to refer to as a "pity party" but it passes when I realize my option was have the colostomy or die...simple as that and puts it into perspective. I can guarantee I don't like my pouch any more than you do. I noticed that many people have named their stoma but I can't make it that personal...at least not so far and it has been almost 3 years.
Froh provided some excellent, practicle advice. For me, I use Coloplast and it sounds like some of the products I use are very similar. I haven't had any leakage problems since about the first 2 months after the colostomy was installed. A couple of things I do that perhaps help avoiding leaks are to 1) use an adhesive remover designed for the ostomy products after you have taken the appliance off. I always had a residue on my skin and so the next wafer I applied never got a proper hold. Once I started using the adhesive remover, a big part of my problem was solved. I would also then get into the shower and was the area with soap and water to make sure I got it all off. 2) I think one of the best tricks my ET nurse taught me was that after I applied the new wafer, to get into bed for 20 minutes with the covers over the appliance area and let the glue really adhere to your body. I also put a pillow over the covers to help with the adhesion as it puts very little pressure on anything else but enough to help make it stick. I should have mentioned that I used a 2 piece system so I typically only have to change the wafer once every 5-7 days so this may not be practicle for those using a 1 piece system.
That's what works for me.
Hang in there, I know it's not easy. You have so much life to live for, espcially with your family.
Bill
Past Member

Janice, ignore any ***** (inappropriate language edited by Amin) who pops in here with rude and cold-hearted remarks...my blood is boiling right now. Rudeness is NEVER warranted!!! I simply cannot believe what Rick just wrote! Just when you think you have a nice support ring growing, somebody turns into an ***** (inappropriate language edited by Amin). (You wouldn't believe how I am holding back right now...believe it or not) You are NOT whining, you are here on this site for a purpose and you are reaching out in need, you have serious issues that you are dealing with and MOST of us are here to assist you and KINDLY support you if we can!

Froh

Janice

Wounded is right. The other one is a moron.

Cheers and good luck.

Froh

Froh

Sorry... I meant the one who treated you like garbage is a **** (deleted by Admin), Janice. You were right to say that to the penile implant guy because he clearly did not understand that this was a forum topic you yourself created.

Cheers

Froh

Past Member
Alright, this kills me.

You hardly ever post a negative reply? Well, with only nine posts, and this scathing one, you have a pretty high percentage of negative posts. Methinks you are not telling the truth with that first line..........

The other line, "how stupid can you be?". Invest the time in using spell check before you start throwing rocks, pal. After all, spell check is free!

Janice,

Please ignore posts like Rick's. Lately there has been a rash (yes, I chose this word for a reason) of know-it-alls coming in here and chastising people who don't think like them. There are many good people here willing to help you through the tough times. Feel free to message me and I'll help any way I can. Most of us here have been through a lot, so we have some experience that may help you out.
administrator
Site Admin
Hi everyone,

Let's try to have a clean chat and not offend each other. We should respect everyone's opinion and questions, however irrelevant they might seem.

Thanks,

Admin
akinsv16

Janice, you have every right to express your feelings. We all know that sometimes we need to talk about what we are going through. I hope things get better for you.

Past Member

Hope you're having a better night, Janice! Find some special happy things to do tomorrow if you can. You're gonna be just fine, girl!... And never hesitate to let us know how you're doing and what you're feeling! Hug

Indian

I do not feel sorry for what has been written so far. I just appreciated Junopete for his another post which was practical in some other forum but I was quite taken aback to read his charges here. I think he will regret having not clarified himself well. But never mind that. That way Froh and some others are really good chaps and I am sure most of us will gain from this forum, I sure will.

I must narrate to you just one good advice one stoma care giver (located in Mumbai where I was treated) gave me when I asked her if I would ever live as well as I did before the bag was fixed on me sometime in 2008 June. She said, looking directly into my eyes - 'if you manage it well as we tell you, you will feel better with stoma than what you did before that surgery'.

Today I can fairly firmly say that I am absolutely fine and have very little to do with toilet visits for the purpose of handling bag. In fact, I do not have a bag. Now I irrigate and initially I used to just put a sterile gauze with an adhesive tape that suited my skin but one day I had very loose stool and there was a leak. Since then I use stoma cap - I used ELITE, the French stuff but now I make it myself and it is so cheap that I can change it as many times a day if I need to without denting my wallet. Sometimes I do have a lot of mucus oozing out that unsettles the stoma cap so I just change before going to bed. And that is it.

I drive, walk, and stay out for hours together at a stretch and am just fine.

Janice, I would love to help you further but you must know why the sticker dislikes your skin. If you can find that out you have a good reason to feel happy soon. Food does cause a lot of problems but there could be other problems too.

I will wait to hear from you.

tribalguy007

Penile Implants Taboo.

Janice, how dare you say that this site is not appropriate for such a topic. It seems to me that since probably about one half of the people on this site are male, it seems indeed appropriate. To my knowledge, there is no forum on this topic, and I, for one, would be willing to discuss my recent pretty much disastrous experience in this area.

You say you are a Christian woman with a strong faith. Well, might I suggest you practice it.

Disgusted!!!

Past Member

Tribalguy...do you not see that this was the wrong area for Davida to post such a thing??!!   This is a personal post from Janice requesting help...it has nothing to do with penile anything.   Davida should not have used this area to post his note, he should start his own post (which is an excellent idea by the way, it's a very important issue)...   but it was HIS error   NOT Janice's error.   Janice has done nothing wrong here and most certainly does not deserve more grief from yet another smartmouth with an attitude.   Go ahead and start a penile post where men can gather to discuss that issue   .......... and I'll pop in to discuss my menstrual problems ....
tribalguy007

Please do! I won't be back to see it.

Disgusted!!!

Past Member

Some people just don't get it. Apparently, the point I was trying to make flew right over his head.
Ah well.

mooza

Yes, Janice, I agree with the other ostomates. Sorry, people, lol. Well, I know just like everyone else here. It is hard. We wonder what more the universe can do to us, what more does it want? But I agree, you really need to try different pouches because you end up a mess worrying if you can go out shopping, etc. But here in Australia, we can ring all ostomy companies and get samples, really see your stoma nurse. Ok, good luck, darl. I just got out of the hospital after a week from a bowel obstruction, and man, my (Cherry, her name), I begged her to start working so I could feel human. A week later, she is working fine. Cross fingers. Maybe not grateful for my situation, but I love my stoma. It's taken me to the most challenging places in my head. I'm off to Malaysia for 8 days soon. I also bungee jumped, so hey, I would be lying if sometimes I didn't feel cheated or a bit freaky. I also work voluntarily for Colostomy Victoria, and it's great to meet members and find out things I can use. I am using the COLOPLAST Sensura range, a really good product for me anyway. And I haven't got kids, so who's lucky? You are. Once you feel secure and have the right appliance, you might get your thoughts and life back to its original. So good luck, darl. We all get the "dark clouds," and yeah, I have problems sleeping. Try the ielo gel tablets, which make the liquid into a gel, so no more slushy. Cheers, Mary-Mooza from Melbourne, Australia. Xxx. Oh, and Penis Man, don't be such a dick. Lololol.

janice

Thanks Froh! I am using Convatec 2-piece bags with the cohesive seal. Most times it lasts about 5 days. Guess I just had a bad couple of nights. I have to watch what I eat and when I eat it.
Opsite tape is a wonderful idea! I use it to hold in my PIC line for my TPN.

I wonder why we're not allowed to post emails on here. I'd love to email you!

janice

Thanks for the kind words and advice, Bill. I know things will get better. Had a bad couple of days.

janice

Thanks Wounded Doe....I actually chuckled when I read his post. I wasn't offended at all. I thought....Wowie this guy has some issues!!!

janice
Moreover, are you saying you had a rectal examination done by someone other than the operating surgeon? Did this other doctor make a mistake? How stupid can you be? Did you at least stress to the doctor that you had recent rectal surgery and to be extra vigilant?

"Um...not quite sure what you meant by this statement or where you get your information from, but I never had any type of rectal surgery.
"

janice

Thanks so much Elzie. I appreciate it!

janice

Thanks Mooza!

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