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

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Past Member

I have such a hard time dealing with it. Just when I think there is hope, I read that there is not. Just when I think I'm not a freak, I read that I am. Just when I hope that someone will not be repulsed by me in an intimate way, I believe that they will be and I shouldn't bother.



Should I have just bled out and died? I feel like crying.

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janice

I understand how you feel Christopher. There are days when I feel the same way. Why did God spare my life? So I can go through more torture???

The only way I'm making it is to take one day at a time. I have good and bad days.

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Past Member
Ah Christopher, no no hun please don't feel like that.    I understand all of the feelings you mentioned.    This can be a really uprooting experience for people to be sure.    What it does to 'body' is one thing...what it can do to 'soul' or our mental and psychological state of being can sometimes even be worse.    These are serious issues we need to support each other with and try to find ways to deal with these things and heal our thoughts...    we have a wound that is only perhaps a few inches in size yet we do seem to allow it to shroud our entire being...and sometimes when we fall into that state of mind or depression, we need caring friends to help lift us back up and out of that place.    If you need to cry, it's ok to cry, it's healthy actually ... but you need to smile too.    I wish I could wash away all the sad things for you, and everyone in here.
Past Member
This goes for anyone who is hurting from ostomy issues or dealing with depression .... please try not to allow any possible negative reply posts on this site affect you in a negative way, that is easier said than done.

It pains me to know that some people are actually heartless enough and sometimes ignorant enough to post replies that are not only nasty but they further harm the individual who is trying to reach out to us for help and support. Especially when it comes to depression...it can be catastrophic.I've been shocked by some of the lousy things people have posted in here, things that are not only non-productive but quite upsetting and hurtful to beautiful souls who need us.

Sometimes people have trouble with lovers, friends or society in general that greatly affect their lives and they come to a website like this one looking for understanding and support ...and end up getting disrespected and kicked down by people who are 'in the same boat' so to speak.

....and then you've got ME .... protective Mama Bear here .... I can't stand it when good people reaching out for help are kicked in the head. There is no way I can stand by silently and let it happen without jumping in. It is not much different from when I watched a man smack his wife repeatedly in the face while she stood there with a bloody nose and mouth and cried and no one else stepped up to help her ....except me. Sure, I went a little nuts on the guy, but I called 911 and kept myself between him and his wife so he couldn't hurt her again ...the whole time daring him to hit ME and see what happens. But that is who I am. I'm not one to stand by and watch another get knocked around. That is baloney.

I do need to cool my jets though, so that I am not lowering myself to the same level. A friend has reined me back just a bit. I need to find a more productive way, myself, to assist and support .... without becoming Mama Bear.... though I don't know if that is possible.

I hope you all are good to each other, and try to have a happy day.
jeaniefrances
I can totally relate to Janice. I am on a TPN right now for 12 hours. I developed a fissue and ended back in the hospital for 1 week. I had lost 28 lbs after my surgery and they wanted to build me back up again. I kinda like the new skinny me, but am weak. I was told in Dec 08 that I have cervical cancer, stage 2. They claimed it was very treatable, curable. Not so. I had chemo and radiation in Jan for 7 weeks. That did nothing to the tumor. Had a radical hysterectomy in March, still had cells present. Went to Vanderbilt Hospital in Nashville where they are great regarding the kind of surgery I needed. It is called a complete pelvic everation (spell) they take out whatever is left over after the first surgery. It lasted 14 hours and I was in ICU for 2 days. I had a plastic surgeon come and create a new vagina, as they took my old one. It was worn out anyway! Guess I am a 59 year old virgin! All went well until a few weeks ago all ##@# broke loose. I developed a fissure in my bowel and bad stuff poured out of my new vagina. Scared me to death. Had to go back to the hospital. Now, I am on a TPN 12 hours at night while I sleep. I still have the drainage which makes me crazy. PLUS I cannot have ANY food or drink at all. Nothing. They want my bowel to rest and maybe heal itself however I dont see how it can with the drainage flowing like a river out of it. I moved in with my son and his wife as she is very good at hooking me up at night and checking all my signs and then taking me off in the AM. Plus I am not alone, which I dont do well. My boyfriend texted me one night saying he couldnt stay with me anymore, he just wasnt that strong. So I am alone that way, which doesnt bother me. I need people in my life who really care about me. I still have some tiny cancer cells floating around in the fluid left over in my pelvis. Chemo should take care of them if this fissure ever heals up so I can do it. I have two bags and now wear diapers, adult. Last summer this time I was on the beach, no clue of what the future would bring. Our lives can change so fast. Jeanie
 
How to Manage Emotions with LeeAnne Hayden | Hollister
lila
Janice,
I am Lila. I am very sorry to hear you are or have been so sick. I didn't have cervical cancer, but my ulcerative colitis was very bad. I was diagnosed after my second was born. When he was 6 months old, it started and didn't get better. I was prednisone dependent and no meds worked. I became so protein malnourished that when I had my first surgery to take my colon out, I developed MRSA in my wound. I ended up having emergency surgery. Then I ended up with a triple lumen in my neck and TPN every day for 12 hours, like you, for 8 weeks. They thought I would die and get gangrene in my wound. I lived. I then had to have another surgery to have the rest out. Because I was prednisone dependent, my cervical spine shifted and later I had to have a cervical fusion. Later, I had to have a total hysterectomy because an MRI showed a mass, which ended up being a cyst.
At night, I use Imodium. I take 3 Imodiums to slow my bowel down. Be careful, start with one or two if you are going to try Imodium. I also found that if I have an apple or pear, my ileostomy produces less water, so there's less chance of leaking. Also, laying on your side helps to drain contents into the bag. I also order two types of bags: one large and one small. The large ones I use at night and rinse them out so I don't have to buy so many. Then, to make things quick during the day, I have small bags but use one bag for a shower only. Then I put a dry bag on after the shower. This helps me to not have to get the hairdryer and dry the bag.
To top it off, my husband, who was a physician, left me partly because I didn't choose the operation he wanted me to. So, I am healthy now and I am not dead. My kids have me and that is all that matters.
I know it is hard. Don't look too far ahead, just live now, especially if you are having a bad day. One bag is time-consuming, so two bags is a lot to handle. Are you allowed to eat at all? Or are you on bowel rest? One day, one minute, one second if you have to. Hang in there.
Lila
janice

Hang in there Jeanie! A tip for your TPN....I put the backpack in a suitcase with wheels. It's much easier to wheel it around than it is to carry it. Your strength will return. It's just a slow process.

janice

Thanks Lila! I will admit, my hubby has been fantastic through all of this. I actually told him to leave me because I felt like I was such a burden to him but, he's not going anywhere. We took vows before God when we married and he's sticking to them. I know it's hard on him and he has his bad days too.

I was on 3 different types of anti-diarrheal meds. Nothing worked with the output. I'll try the apples and pears.

I have the 2 piece bags. I just change the whole thing. I'm scared that if I take bags on and off the flange, that will weaken the flange. I haven't showered yet cause of my wound but, last year when I had these for 10 months, I didn't shower either. So scared water will weaken it.

Hang in there!

tarababy
Hi there folks, well when I wanted this site to get busier and have more input, I never imagined it would get to this terrible state of affairs. What is the world coming to when a person wants to reach out for answers and some comfort from another ostomate and then be spoken to like that? No compassion there. And that is what this site is all about, so I thought. What does it matter that an inappropriate question is posted on the wrong post? No need to be nasty or rude, just ignore it or tell them it's not the right one (post). To start a post just for that, like Wounded Doe suggested (you're a gem by the way, girl). All I can say is I'm so disappointed in some of the newcomers and their sucky attitude. "If I'm alright, then you should be too, get over it." We all handle our situations differently, and this wonderful site is here to help all ostomates. The majority have that compassion and understanding that a lot of us are chasing. But like a basket of apples, there are always a couple of nasty, smelly, bad ones that can ruin the lot for a lot. I think I'll stick to my joke site. That way, if a seal breaks, you know damn well it was from laughing too hard. As they say, laughter is the best medicine. So to all the downers out there who think their own poop doesn't stink, maybe you should go find another site to vent that pent-up anger and frustration you have been trying to throw this way. Or better still, join the ones who hide the fact they even have an ostomy and start up your own "I'm better than you" site. Oh, that's right, you folks aren't angry with your lot. I can tell you're as happy as a pig in poop. Yeah right. Later nice folks. And Janice, my apologies for interrupting your post and questions. Good luck and take care. Life is worth living, even after an ostomy. Tara.
panhead511
Hi Janice. I am so sorry to hear that you are having a hard time with your current situation. I can relate to you because at times I also have difficulty accepting the bag. I have good days and bad ones. I can also relate to having to change my appliance in the middle of the night when you are half asleep!! What a drag, huh? I know that it must be a little overwhelming at times but hopefully it will get a little easier with time. My prayers are with you. Hang in there, sweetie, and try to keep your head up high. We all have our good days and bad ones. I too wish that I didn't have a bag but deep down inside I know it is for the best. Try not to let it get you down!! We are here for you and we all wish you the best of luck. One more thing that I would like to add. I don't approve of people posting negative remarks about other people's posts!! It is very demeaning and rude. If someone wants to be negative in here, my recommendation would be to get out of this site! We all come in here to find support, we don't need insensitive people. With that said, God bless you and try to have a good day. Talk to you later. lol
Past Member

What a perfect reply post, Tara!!!!! I love it!! Tarababy is soooooooo right!!

janice

Thanks. Things are looking up.

Faith4Today

Surely there must be a grace period after yet another surgery, that we are allowed to whine all we want and still get understanding support from others.

Past Member
   ...and it isn't whining, and there is no Grace Period, as most of us realize, and big bad Wounded Doe is here to support everyone's backsides with a vengeance ... and let us hope the few lousy remarks and replies that come in don't stop anyone from sharing their woes in the future!!    Have a good weekend and hugs to you from your Wounded Doe
keysgirl
Wounded Doe, girl, you are shining your light again. You are just like Superwoman flying in out of the sky to rescue those in need. I love you and everyone else on this site sharing their love. I pray for the healing of your bodies and the removal of pain in your lives. So many of you have been through so much.

Now...I have just started using the Colo-Majic flushable liners. Please Google it and ask the distributors for samples to see if they work for you. I have a colostomy, so for me, it is great. They cost about $65 for 300 liners, which includes shipping costs. They will keep the stool from getting on your appliance, so it won't leak out and cause skin irritation. I can't say enough about them.

You know, when you are told you have to have radiation and chemo, and they tell you the possible side effects, it just doesn't register at that time, the damage they can do to the healthy body parts.

We will all get through this...we are not alone...God is with us...and we're here for each other too.

Live well...
gutenberg
Greetings Junopete: after reading your post I got to thinking, is there a forum which one can access said topic. Curious survivor.
Past Member


David,

Ignore the tone of the initial response. You may well not be aware that there is a protocol on internet-based forums. If a person starts a thread, they ask their question and other members offer a response. Therefore, it is not good practice to ask a different question within a thread. If you look towards the top left corner of the forum page, there is a shortcut button marked "New topic". Hit that and start your own thread. This will allow you to get a more detailed and quicker response, and searching will become easier.

Don't be put off from using the forum. There are many very friendly members willing to help and give advice.

You have a very valid question, albeit posted a little off target.

I have no knowledge on this to offer any advice, sorry. But do post. I am sure someone will have an answer for you.

Janice, speaking of protocol, CAPS LOCK is shouting!!!

Good luck.

I have not been online for a few days and missed some drama!
ostomom

Well, I can't say I know how you feel because I don't have an ostomy myself. My son has had one since birth (he's now 9) and will always have one. Having said that, taking care of it has never been easy. Keeping a bag on for half a day is next to impossible! Always has been. He's constantly picking at it and therefore it constantly leaks. I think he doesn't even realize he's doing it most of the time. He always has some kind of breakdown and that itches when it starts to heal, so then he really doesn't leave it alone and we get into an endless cycle. The ostomy is the least of his problems medically, but one of the biggest for him now that he is becoming more aware that it's different. He's even said that he wanted to take a knife and cut it off and that he wished I had let him die when he was born. Heartbreaking for me to hear. I'll tell you though that I couldn't be more frustrated when I have to help him change his 4th, 5th and 6th bag of the day. A good day is only going through 2. It's definitely a learning experience and you have to have lots of patience. On another note - you wouldn't believe some of the stories I have!

Mike

Believe me, Janice, we all can relate. I had a real bad time with my bag for about the first 6 months, and I can't imagine having two. I actually have a love/hate relationship with my bag. But don't tell anyone, it will be a secret. Take care.

earth523
hi, im sorry youve had such a hard time. ive had an ileostomy for 18 years and have tried different products to wear until i found the one for me. i hated the two piece system. it was bulky and often leaked. these days i wear a one piece light weight system that im comfortable with. if you have an et nurse you can ask for different kinds of bags to try. hollister has many different options and will send you samples if you need.im not sure of the phone number, but they are wonderful. good luck
Mike
Heres the Phone number for hollister 1 (877) 899 3962 Hope this helps Mike
Past Member
Hi Janice

Since 2008 i have had two stomas 6 trips to theater vacuum therapy on the wound , nerve damage to my spine and 3 hernias and still wounder why me when there are such arse holes out there but at the end of the day i am strill alive to see my kids grow, take a day at a time and to hell with the world.
freakyfairy
Hi Janice! My ileo is nearly a year old and yes its for life, Im only 35 and sometimes (like today) the rest of my life seems so very very long! But look at all you've been through! Im sure you're a warrior just like most of us on here! I haven't had Cancer but ive had Crohns for 20 years and that has changed my life from what I wanted! Think yourself lucky with all you do have! Im unable to have kids due to adhesions on my ovaries and some days I sit and think about what will happen when my hubby (19 years older than me) goes and Im left with no-one but me myself and Eric (my stoma) to keep me company in my twilight years!
From what you say you are usually a positive person so my little piece of advice is give yourself a day to feel sorry for yourself (thats what Im doing today after yet another leakage yesterday), you're allowed you know? And then tomorrow you get up you brush yourself off and you fight another day!! But remember we are here for you when you next allow yourself a you day, we may not be able to give you a hug but we can give you a virtual shoulder to cry on!
Luv'n'ugz sweety x x x
reddog
Hi Janice,

Pay close attention to what Froh and Junopete had to say. They are two of the best and most informative posts I've every read on this site. Personally, I did the 2am thing also. I put 2 inch white medical tape around the borders of the pouch. Problem solved.

By the way,Junopete, you are right on Babe. I speak from experience about the E.D. thing.Happened to me right after colon and rectum removal but I was warned about it by my surgeon prior to ileo surgery. It's a very real possible complication. You really did your research.

Thanks
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