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Bad day...couple of questions

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Posted 2/9/2008 12:49 AM (GMT 0)
Hey all i dont want to use this forum as a place to constantly complain, bc i know that things could be WAAAY worse for me than they are. But as always i have questions that i dont know who else to ask. I had a bad day today, and i thought i'd been doing ok. I had pain in my stomach after n e thing i put n my mouth, i mean it actually hurt! it started last night around 9pm. I went to bed, and as usual my stoma was pretty unnactive as i slept. When i woke up however, i emptied and the pain began. I was afraid to eat.

So i remembered you guys told me about the gas-x and i hadnt needed it as of yet. So i took one and the pain began to subside...my stoma got really really noisey, but i didnt care to be relieved from the pain. So here are my ?'s

1. When my stoma woke up today after the gas x, it seemed as tho my stoma was like spraying! it was all liquid and it was like shooting out! has anybody experienced that? so for most of the day today its been liquid and very noisey...is that normal?

2. Also, could that pain have just been gas alone? i never felt anything like it and it literally had me laid up. I wanted to clean up today, but i just could hardly move, so i was n bed most of the day, sleeping on and off.

3. How do you guys keep your bag from ballooning? i'm in this 12 inch bag from the hospital and when i try to fold and tuck it automatically balloons, even when i think i got all of the air out of it from emptying. So i have to let it hang which gets so aggravating.

4. How long did it take you guys to get back into your clothes? I think for the most part i could do it, but the air in the bag is  causing major problems for me because i can't fold it and i'm afraid i'll burst it.

My mother keeps reminding me its only been a week and a half since surgery and that i'm expecting to much. Do you guys think i'm rushing things? I just want my life back.

Posted 2/9/2008 12:58 AM (GMT 0)
Praying,

I just wanted to let you know how sorry I am that you are having such a tough time. I almost NEVER get any air or gas. I have the opposite problem, my bag never fills and I am always bloated and distended at my stoma. I can only eat 2 small meals a day b/c my system gets so backed up. I hope what you are going through will subside as your body adjusts to your ileostomy.

I hope you feel better.
Posted 2/9/2008 2:06 AM (GMT 0)
You haven't even had your post op check yet have you? Usually when you go the stoma nurse will show you other types of bags. When I left the hospital I wore the clear one piece Holister bags which always made crinkly noises and seemed to keep all the air in there, now I am using a 2 piece system with an opaque bag and there is no noise.

As for the gas, sometimes when I have an empty stomach I will have farting noises (sorry if too graphic, but that's the sound) when I eat, I have never tried the gas-x, but I'm sure my noise is from excess gas. My bag is usually full of air at night and the pulling on my wafer will wake me up, but I have no abdominal pain.

Are you sticking with a low residue diet? Could the pain have been from something that you shouldn't have eaten or didn't chew well enough? I know others here have had partial blockages and experience that kind of pain, usually grape juice will get things moving.

It took me a good 6 weeks to get back into anything other than pj's or sweats. Don't rush things, your mom is right, you did just have surgery not long ago and it was a major surgery! But I understand about being impatient and wanting to get back to normal (whatever that is now). You have been through a lot and your body just needs time to adjust, try and be a little more patient, you are doing so well!

Theresa
Posted 2/9/2008 4:20 AM (GMT 0)
the gas and the puffiness will lessen after time! a good way to get rid of it though, is empty your bag, then roll it all the way up, and just burp it by lifting it just a tiny bit from the flange. DId that make sense?
i guess my bag is 12inch, it's a long one, and i don't have any problems with it.
You need to wait a while before worrying abotu your regular clothes! you will get back in them! i wore pjs and such for almost three weeks! But after that, i was back in my regular clothes, just for a while, a size larger, to keep them off my incision and until i got used to having the bag.
I don't know what kind of bag you are using now, but if it's the clear ones they sent you home with from the hospital, they are horrible and you can't do anything with them!
Posted 2/9/2008 4:32 AM (GMT 0)
thanks you guys....that information was helpful. especially about these clear bags they send u home from the hospital in. Yes they are sooo loud and crinkly. I just thought maybe i was doing something wrong.
I do think the pain came from me not chewing my food good enough, b/c when it finally did start moving, there were chunks of food in it. I couldnt identify them b/c i couldnt stand to look long enough. I'm still grossed out when emptying.

Two more questions if you guys don't mind:

1.Ash i remember ur pics u put up for me b4 i got the surgery, i was just curious is ur stoma over ur beltline? mine is, and if your's is, does your waistline of your jeans stop the stuff from going down into the bag? (do you know what i mean? as opposed to gathering right at the top of your pants?)

2. My new ET nurse came yesterday, she stayed literally for less than 10mins, she didnt even want my mom to take her coat. The first one i had was so nice i thought this one would be too. She didnt change or help me change my bag. So i just tried on my own today. I cried of course, b/c my stoma kept putting out, and for some reason when i go to change i get dizzy and clamy.

N e way, i changed the bag w/the help of my mom, but i was trying to clean around my stoma. Most of my skin looked fine, but the skin right around the stoma was still kind of gooey w/a little residue on it, it didnt want to wipe off. Is this ok? I don't know how long this wafer will last b/c btwn cutting to fit and dealing with this catheter, and the fact that i just hate this thing all together, I just did the best i could.

Thanks again for ur help guys!
Posted 2/9/2008 5:15 AM (GMT 0)
1. I get the spraying stoma every once in a while. It tends to happen to me when my output is more liquid. I had it tons more in the beginning, too. Things really changed drastically (for the better) for me after about 2 -3 months. It seems like a long time, but once those months are over you realize it really wasn't. And over those months it was getting better.

2. I freaked out about these pains!! They were so bad, I even had my Dad drive me to the hospital once. We got like halfway there, and the pain faded, and we turned around again. I thought those pains were going to be there forever. But they, too went away, and I haven't anything that severe in at least three months.

3. My bag balloons a little even now. Probably because I think I have the world's most active stoma. Mine is the ENERGIZER BUNNY of stomas. But even my Miss Universe of stomas was worse in the beginning, and then calmed down. And by beginning I mean at least 1 month and a half to two months.

4. It took me three months to get back into my clothes. The good news about that for me? After the three motnhs were up, I only lasted 3 weeks in those clothes, and have been steadily losing weight (in a good way) since. I'm down 3 sizes!!!

Keep in mind that you had some major surgery. Your entire body is adjusting. Your small intestine is learning to do a new job. When you learn a new sport, or hobby, or craft, it takes you more than a few weeks to get good at it, right? tongue Keep in mind as well that your feelings are normal. I felt the same way as you are. I think too often people around us forget to remind us that it is OKAY to feel tired depressed or cranky. They are too busy telling us not to worry, things will be fine. While it may be true that things WILL be fine, I believe it is always important to have other accept that, for you, right now, things aren't fine. The good thing about being on this forum is that you can see that you are not alone. You can know you are okay, you are normal, and you can begin to heal that way. After that, things really will get better and be fine! I hope that this helps you a little. These are the things I wish someone had told me.

All that being said, I was still in the hospital a week and a half after my surgery. So my healing times are probably longer than most, so don't let them scare you, either!

You're doing great!!!

 

Posted 2/9/2008 1:56 PM (GMT 0)
thanks u guys...catheter was actually supposed to come out valentines day. My surgeon was gonna be my valentine and that was gonna be my present. But he's standing me up, skipping town, probably to take his wife on some extravaggant outing. so i have to keep it in an extra week until the 20th.
Did anyone have problems when their catheters were taken out? the stoma nurse said i may have leaks once he takes it out.
Posted 2/9/2008 2:24 PM (GMT 0)
Praying,

Where is your catheter located? Is it in your belly?

Oh thing that I have learned about changing my bag, I get all of my appliances ready and then lay in the bath tub. I take everything off in the tub and change in their. This way if anything comes out, I can just turn on the water and bleach the tub for germs.

I hope your wafer lasts you a few days. Good job attempting it on your own. :o)
Posted 2/9/2008 3:28 PM (GMT 0)
I had the same problem with my home stoma nurse, she basically was here for 5 minutes, don't be afraid to ask her to watch you change your appliance (she is getting paid very well to help you) When you go for your check up the hospital stoma nurse is the one who is the biggest help, they will change the appliance and check your skin and show you different appliances that you can use.

You can eat 3-4 small marshmallows about 15 minutes before changing and it stops the output (it really works), and earlier in the morning the better. Have everything ready before you change- pre-cut your new appliance, have your paste ready, couple of paper towels (wet & dry), barrier wipes, powder. I just jump in the shower and soap up and still have time before I have output. I have used wet q-tips to clean closer to the stoma, and pat dry with paper towels. Make sure after all is clean that your appliance is cut correctly before you put on the paste-as your stoma will probably shrink over time. I promise it will get easier for you over time, I hated changing at first- even after this second surgery.

Are you using anything to protect your skin? I use powder & barrier wipes. As long as your skin is not red and burning, it's ok. I don't know anything about a cathedar, but I had a plastic tube stitched to my stoma to keep it from retracting. They took it out at my check-up. Be sure to take your pain meds before your visit (removing 15 staples and stiches) you might be a little uncomfortable.

My stoma is above the belt line and I have had it poof at the top especially if it's thicker. I found jeans at Kohls that are Levis 512 instantly slimming boot cut jeans that cover the belly and my bag. I have all the lower waist jeans (I am a size 4) even though I am 41 I can't fit into women's jeans and am not comfortable wearing them anymore, but a lot of girls here have no problems with low waist jeans. Maybe a good excuse for you to go shopping! yeah

Theresa
Posted 2/9/2008 6:10 PM (GMT 0)
hey guys

amey and theresa, my catheter is in my stoma, its the same thing as u theresa except mines not a bar, its actually a huge red ring. Its n for the same purpose, to keep it from retracting.

theresa, did yours retract once they took ur cathetar out?

i try to precut my wafer, but my stoma's still shrinking i guess, so no matter what i do, i always end up wasting one wafer if i try to pre cut.

the bathtub is a good idea, that way i could lay down and not have to feel like im going to pass out.

I'm lucky too, i dont think i should b in that much pain upon my check up as mine was laproscopic...i havent had too much pain from the actual surgery itself.

as far as the skin prep, i have these samples of no sting something or another that i put on when i change.

ok...i guess i'm going to head out with my mom. being cooped in the house can drive a girl crazy! I hope it goes ok :O/
Posted 2/9/2008 7:15 PM (GMT 0)
Praying,

Sorry your homecare nurse was not helpful. I had the same problem. My homecare nurse did not even know what an ostomy was! I was astonished and called the office manager. I asked them to please send ONLY qualified nurses to my home in the future. The nurses get paid $125 per hour no matter if they stay 5 minutes or 50 minutes. Many of them try to rush out so they can get paid for very little work. After my discussion with the manager, I was sent a certified ostomy nurse. She was great. I learned so much from her.
Posted 2/9/2008 11:07 PM (GMT 0)
The first few times that I changed my bag without the help of the home nurse, I, too, felt kind of clammy and sick. A lot of that is because of what your body has just been through and some of it is looking at the stoma and what it means. It is very traumatic and I tried not to think about the fact that I was looking at my intestine!For me, it has been almost three months and I am finally getting used to the strange sensations of the active stoma, the odors and the whole changing routine. It really does get easier, although I am not sure I believed it when my nurse told me that three months ago. Remember that you just had surgery. I still feel tired alot, but at first I felt weak, sick and depressed. The winter has pretty much passed by. I have read lots of good books, watched some great movies and played a lot on the computer..someday I will look back on these months as one more learning experience and a chance to think about what is really important...my great family and wonderful friends who have helped me through all of this.
Posted 2/10/2008 1:04 AM (GMT 0)
Praying,

My stoma has not retracted thank God because it is so flush with the skin already. The first stoma I had was great, a perfect 1" circle and stuck out about 3/4 to an inch. This one is shaped more like a mushroom so I have to keep checking to make sure it hasn't changed before I cut my wafer.

Glad to hear you're getting out! We went out to dinner tonight had Friday's Jack Daniel's ribs and Coldstone cotton candy ice cream! tongue
Posted 2/10/2008 1:22 AM (GMT 0)
I totally remember feeling clammy and lightheaded, kind of nauseous too.  And that was a long time ago for me.   I don't know why.. just the shock of it all I suppose and not being totally recuperated and back on my feet from surgery.  It does get better believe me.

I didn't have a homecare nurse.  I had an ET visit me a couple of times while I was in the hospital and she was really nice.  But, I never changed my appliance at all in the hospital - I was not one of their better patients!  I was sooo negative, didn't want it, didn't want to deal with it, and wouldn't even look at it.   I had no clue what an ostomy was when I initially had my first surgery (emergency) at age 17.  It was temporary for a couple of months, then reversed.  That last until age 24 when it had to be permenant.  I wasn't much better the 2nd time around, but I bellied up and learned to deal with it.  My poor mom couldn't help me cuz she would start gagging - she had a really weak stomach, poor thing.   So I was on my own.  But I was fine and it made me a much stronger person.

Praying - you are doing so well.  Ask all the questions you want.  There are a lot of people who read this forum that learn from the questions you ask.

Posted 2/11/2008 2:06 AM (GMT 0)

Thanks Peggy, I'm learning that the claminess is more common than i thought. Which helps, because it helps me know that i just might not be a freak of nature (at least by ostomic standards lol) I made up that word! Y didnt ur reversal last? is ur cd crohns disease or chronic diarrhea?

N e way, is what i usually get. I wasnt sure how it would effect me so i just got pasta to be safe. I'm so totally jealous tho b/c i've been craving coldstone and the one by me is closed for the winter! Like who doesnt eat ice cream in the winter?! I love to get strawberry bannanna rendeveouz, with yellow cake instead of white chocolate chips, and i add grahm crackers. Dont know how that would work with my new situation either, but i'd take the risk just to taste it. U had two stomas? Were they in the same place?

Oh and i'm so happy to report that the tic tacs started working! which was a pleasant surprise for me, it made me feel like going to work next month without embarassment really might be a possibility. I put them in my bag with peroxide. Its been bearable, I havent had to breath out of my mouth to empty. And i find myself praying and thanking God at every empty lol, as opposed to my previous crying and asking God why. I'm trying to be thankful for the little things.

Posted 2/11/2008 3:29 AM (GMT 0)
Praying:

I can understand what you went thru. I had some similar problems when I got mine. It's kinda funny when the farting noises start but now I really don't have them anymore. In case you don't know I drive a truck and life on the road with an ostomy is a real challenge. And this is far from what I was used to.

As for getting back to "normal" again, well you have to find a new "normal" now that you have an ostomy. I was wearing jammies for about a month till I decided to wear overalls from Dickies. Now I look like "farmer John" whenever I go out. But oh well at least I'm comfortable and my clothes don't rub or restrict my stoma activity.

It took me awhile to figure out what kind of bag system works for me and it will be the same for you. You just have to be patient and everything will work out. Just remember, things could be worse than they are and you should be thakful that you are alive and in considerable good health (with the exception of having an attachment).
Posted 2/11/2008 4:00 AM (GMT 0)
hey sorry i didnt reply,i can only really wear tight tops my jeans r wayyy 2 tight for me atm,putting on tons of weight since i got my illiostomy,my stoma always mkes me feel yuky wen i chnge my bag,i usually talk to my mum while changing it to stop me thining bout it to much.getting my reversal op on valintines day,really nervous.my bag gets quite full of air sumtimes even thou it has a filter.Neway gud luck wit ur bag and dnt worry to much bout stuff its ok to feel gross wen ur changing ur bag etc :)
Posted 2/11/2008 4:19 PM (GMT 0)
Praying,
I am having the 3 step j-pouch procedure. The first step they took out the colon and I had an end ileostomy,(meaning the end of the small intestines) This is also for those who have a permanent ileostomy. The second step is where they go in and form the pouch with the end ileostomy and they form another ileostomy higher in the small intestines called a loop ileostomy. The third step is when they close the loop and you begin using the pouch and no longer have an ostomy bag.

Some surgeons do it in a 2 step or even 1 step procedure, but my colon was so bad and I was so sick and weak that I needed time to heal and gain weight between the procedures. The end ileostomy was so much easier to care for, the stool is thicker and the stoma is more round in shape. The loop is shaped like a mushroom and is constantly putting out liquid so it's harder to keep myself hydrated.

My surgeon didn't tell me much other than I would have to have 3 steps, so I did my own research so I would know what to expect. It's so important for us to be active in our health care. Here is a link to information about J-pouch creation if you're interested:

http://www.doereport.com/enlargeexhibit.php?id=1658

Theresa
Posted 2/11/2008 10:16 PM (GMT 0)

Praying,

My reversal was not successful because the CD came back FULL force shortly after the reversal.  Back on meds I went, including enemas, suppositories, oral meds.  This was before remicade or imuran too.  Tons of steroids tho.  I fought it for 6 years, making trips to Cleveland Clinic every couple of months for colonoscopies, hemrroid surgeries, etc.  I just wish I would have been more educated and not so bullheaded and had the surgery much earlier.

My first stoma was located on the same side of my abdomen but much lower than my permanent one.  Fortunately they took placement into their consideration when doing the temporary ileostomy because the scar sits below where the wafer for my appliance ahers to my abdomen now.  I was extremely lucky to have such a talented surgeon.   Dr. Fazio is not the head of the Colo-Rectal Dept at CC.  Who would have thunk?!!!  I praise him constantly even now for saving my life and Giving me a life.  I just wish I was much smarter at a younger age and more receptive to the surgery.

I have to fess up and tell ya all that the clammines came back to me again when I had my shoulder surgery and attempted to change my bag for the first time.  It was so painful (my shoulder) and I was on pain drugs and got that same clammy, ready to pass out feeling. 

Good news on the tic tacs - I have some in my purse right now whenever I get brave enough to use them!  I'm glad they work for you.

 

Posted 4/6/2008 10:29 PM (GMT 0)
I had the clammy, lightheaded and nauseous feeling too after getting my end ileostomy due to UC. This all went away after the 5th or 6th bag change. The other thing is to do your changes (and shaving if needed) in the shower first thing in the morning. I had output one time I did a change in the afternoon and I'll never do it again. That was an awful experience...I also pulled the skin off at the bottom of the flange...that was a very bad day.

I use the 2 piece Holister bag system with the new waterproof filters (white window in them). The filters work for about 2 days before they start ballooning up on me, so I just snap on a new bag every 2 to 3 days. The extend wear wafers last almost a week for me...thank God. So I do my wafer changes on the weekend if possible. At first, I was obsessed with cutting the right size of the wafer to fit the stoma and learned a trick. My stoma has stopped shrinking now, but it's not perfectly round so it's between 1 3/8" and 1 1/4". 1 1/4" will work, but it cuts into the stoma making it bleed if I don't get it positioned "just right." So now, I just order the larger size 1 3/8" precut flange and fill in with a circle of paste around the stoma edge on the wafer. I don't even worry about getting the edge of the flange close to the stoma anymore. The paste fills in the gap when I press it on and I haven't had any leaks or irritation. Just check around the stoma and if the paste doesn't fill in the gap completely, use the powder to fill in the gaps (which happens time to time). There's a trick to the powder too, don't squeeze the bottle and have gobs of powder shoot out. Tilt the bottle sideways and use tiny squeezes and eventually you'll see the powder slowly appear where your aiming. This method will save you a ton of powder too and took me 4 times to figure out. Also, wait 30 seconds for the paste to dry after putting it on the wafer, the alcohol in it will sting if you put it on too quickly. I found that lesson out today. But this method seems to work every time for me and I got the whole process down to under 10 minutes, excluding shower/shaving time.

I go back to work tomorrow - 8 weeks post-op and pants (jeans etc) are now becoming comfortable to wear again. My surgeon said the mild abdominal pain I have will go away in 4 more months. So I'll just get past that later on after surgery #2 to possibly do the reversal. I've been wearing sweat pants and shorts with elastic bands up to now. Also, I can eat everything after 6 weeks post-op. I even had a whole bag of popcorn last night...so try everything once...even the so called "naughty" foods. I never had a blockage yet...so good luck.
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