OK CATCHING IT FROM SOME "FRIENDS"

OK so now it begins. "Frankly I think you're nuts" "Stop obsessing on your stoma" yada yada.

Yep been having a bad time with this new stoma. Living on mostly liquids with a minor amount of solids. In pain a WHOLE lot. Stoma hard as a rock when I sit or stand. ONly soft and mainly working when I lie on my right side. Having to do gastric gymnastics in bed to pass gas. Stoma shrank to size of a dime and splayed out all over my skin. THEN two holes in it while having it checked by a resident. MAYBE IT IS NORMAL! Who the heck knows.

BUT I made the supreme mistake of telling a few people about being seen at mayo, and revised IF indeed determined it is needed when I see the doc in person who reviewed my stoma pics and all the symptoms, blockages, pain pattern, and records.

IF it turns out I don't need a revision I certainly won't get one! Like who would! Jeeze! Some people not in the situation make some really harsh judgements. I would LOVE to see this person walk one day in my shoes with a working stoma let alone one that has been having issues for a month now.

Ah well, what can you do but figure ignorance of the issue and idle comments. RJ

     Ditto last two comments.

Yep, I think you are right. I will just do what I need to do and get professional opinion out at Mayo. Be SURE I am fully informed and do what I have to do. I by no means want more surgery but on the other hand I don't want this thing closing up on me and having nobody around here deal with it. I am going to flat out ask at Mayo IF this looks like it is heading the way of the other stoma. Really seems like I need to get out of the area. maybe I should have done that when the first stenosed but I was left for so long in trouble that I was too weak to fly.

The tricky part about another revision is that I would need a chest port or a neck catheter (triple lumen catheter) as my arm veins are all scarred. So nothing to enter into lightly but if I have to live on liquids and IF this stoma is heading down a bad road then need to get the jump on it. I will just see what they have to say at Mayo then make best judgement I can. HOPEFULLY the right one.

But yeah, I just won't talk to "friends" about this any more. They seem to think I know nothing of normal stoma's. I had one for 4 years. I know what is normal and what is not. So unreal. I think having no family that can help is the hole in the donut here. RJ

Thanks Active! That is what I say to people, think of it as a closing poop hole like if your rectum was closing up or if there were issues that made you feel like this was happening a second time.

They don't get it. So either are not too bright or are pretending not to be. I agree they would be the first to be concerned.

Rosemary

So you come here for your support and understanding and forget about conversations with friends/family who don't understand and say insensitive things.

I'm sure if they are people who truly care for you, they just don't know what to say or do and consequently they are being a hindrance and not a help.

Most of our interaction is right here on the board as well. We don't discuss much with friends and family unless asked as it keeps things more comfortable that way it seems. Friends don't totally ignore it and oftentimes are asking how he is doing and coming along, He is out and about so much now and our social life has resumed to pretty much normal so most kind of forget about it since it is not a handicap or hindrance to him.

My sister also has an ileostomy so she and my husband discuss it a lot as she doesn't peruse the BBs like I do for my husband (and her). I am the hunter and gatherer of information to keep sharing with them...lol.

Another thing, Rosemary: when I was working this past school year, I still was not well. I posted on here about a supposed hernia that was causing me discomfort, ongoing pyoderma gangrenosum that was debilitatingly painful, and rashes that were driving me insane with itching. Oh, and I also went through a really bad blockage, was up vomiting every 15 minutes until 4 am, then got up for work at 5:30. Needless to say I was not at my best, still looked exhausted, and I did tell people I still didn't feel well when they asked. I also was on light duty at work, which meant I got out of doing some of the things that my colleagues strongly dislike doing. I could tell they were getting impatient with me, and didn't always want to believe I was a sick as I was. I had to stop caring what they thought. After all, I knew the truth as I was living in my own skin daily. I knew that I was normally a work horse, yet I felt as I had been hit by a bus by day's end. That just wasn't normal for me.

At the end of the day, as you are on your right side doing your "gastric gymnastics," you know darn well you ain't bluffin'. Stick with what you're doing and advocate for yourself. I have learned that if I don't take care of myself no one else is going to do it for me. Even in my own home that is the case sometimes. With three little kids running around, it is every man or woman for him or herself around here.

Rosemary,
Well, all I can add to the great advice you already got is this: Unfortunately, people NOT in our shoes don't get it, and I didn't realize I was doing this, but everytime I saw a friend and they asked how I was, I would start in on the health stuff. It made them not want to hang out with me..
like I said, I didn't realize I was doing it..so I make it a point to NOT mention my health unless I was specifically asked about it. OR, if I was stressing about something, I would call a friend and say to them, " I know you don't necessarily understand what I am going thru, but I really just need to vent, do you have time to listen?"

Your true friends, will take time to listen..good luck :)

I'm not defending your friends, they weren't being very nice. But it is hard for people who don't have that health problem to understand what you are going through. It would be like if someone with a brain tumor came up to you and started telling you about it. You wouldn't know what they are going through, and in a case like that sometimes people come across as rude or uncaring, when in reality they just don't know what to say. So they say dumb stuff, or say things in an effort to tell you not to worry, but don't say it correctly.
In the south we are taught to answer, "how are you?" with "fine thank you, and you?" regardless of what we are feeling. If we are standing there with a bullet hole in our sides, we are still to answer that way. So that way no one has to hear about it, lol. It makes things easier, i find. I don't tend to talk to anyone about health stuff, except on here. Possibly in passing, but not in detail, except to my Mom and my husband. And even they don't totally understand.
Maybe you could just tell them, "hey you weren't very nice in the way you handled my talking to you about my problems, I know it's hard to understand, but i really just needed a friend to talk to." Maybe they will see that their reactions weren't what they should have been and that they need to just listen, instead of give advice when they don't know anything about your problem.
I hope it works out for you.

Good advice. I understand. They were likely sick of hearing about it. And not able to relate. R

Good idea Mrs. B I would love to do this but I feel so lousy I caN't do any of the fun things I used to do with my friends like go dancing or whatever. One of my friends makes it a special point to tell me how NORMAL her health is. Her favorite thing to say is "I am aging normally.". It's like is that to rub salt in my wounds or what? Even if we are not on the topic of health she brings that up out of nowhere. I do walk a lot as I have to to push yogurt and liquids thru me but some of my friends don't go walking in fact most don't. if I sit and chat I am so uncomforable I have to either stand or sit or walk. But you are right I have to find a way that I can have contact without going into the health thing.

Thanks Mrs. B.