Hi folks! I had my ileo surgery a year ago on the 28th and everything has been going okay! I thought I was positive and had accepted it, but the last few days have been awful! I'm itching under the flange and have changed it multiple times over 3 days just so I can have a good scratch. He's also been very active; yesterday we were giving a friend a lift and my hubby braked hard, and the bag was so full that it squished it and it came out of all sides all over me...we were about 40 mins from home as well! I couldn't stop crying and eventually wore myself out about 9pm last night, but today I still feel bad!
I've been unable to work, my doctors have told me that I cannot exercise (or do anything that will create excess sweat) and he also took me off my multivitamins as he reckons that was making my output too watery and too frequent! So I'm sitting here with 3 cold sores, no money to go out even if I wanted to, and feeling very sorry for myself!
This isn't normal for me, I've been so positive but now I just keep thinking this is me for the rest of my life and I'm only 35!! Are these normal feelings? For all out there that have accepted your situation, do you have times when you just want to curl up and say "F**k off" to the world? How did you get over it or pass it?
I've made an appointment with my doctor to talk over my next step! Due to the Crohn's, there's still a lot of food I cannot eat, so how am I to get my vitamins if I cannot eat them or take tablets, how am I to get fit and lose the weight that the meds put on if I can't exercise? Surely the doctors have got to help me somehow!! This ISN'T my fault; I didn't ask for any of this! I'm the biggest I've ever been thanks to the steroids that were supposed to stop me from having the op, but they didn't work and I ended up having the op anyway and now can't shift the weight! Am I asking for too much too soon?
Thanks for reading this; I just needed to vent and get my feelings out as my hubby, who is very supportive, just doesn't understand! He keeps telling me that he still loves me no matter what size, but that's not the reason I need to lose weight!
I keep trying to reason with myself, saying that this time last year I was in a very bad place and there are people out there worse off than me, but even that's not helping me today and I'm never a selfish person!! Hope you're all having a better day than me! xxxx
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If I was a relative newbie with an ostomy, I have no doubt that this site would be very helpful to me. The members are quick to respond to questions and issues and they are filled with experience. When I joined, I already had a lifetime with an ostomy, so I just regard it as a place to meet and communicate with other folks similarly situated. Either way, it is a good site.
You could have become allergic to your base plate; it might be worth getting a few samples of different products to see if they make any difference. Have you got any skin barrier spray or cream to use on your skin? You should get your doctor to send you to a dietician for some advice on what to eat. Why do doctors say you have to avoid sweating? A 30-minute walk a day would be good exercise. Is your output watery all the time?
Learn all about skin barrier extenders.
Hi! Read your story... it happens to me. I use NYSTATIN Powder 15 GM, I apply it onto a 1.75"x4"
bandage... It seems to work for me... It is a prescription. If it doesn't work for you, keep it off for a while. Let it heal.
Thank you, people, for the answers!
@Primeboy I did empty before leaving the house, but it was just overproductive for some reason and filled up in very little time!
@Panther I use a barrier spray, and I'm normally okay, but I think maybe the warm weather we're having is just making it a bit more irritable than normal! As far as the exercising goes... I was trying to exercise, treadmill, bike machine, and aerobics, and was losing the weight, but by mid-afternoon, I was suffering from blinding headaches. When I saw my Dr., he told me that the meds I was on had caused my body's thermostat to play up, meaning that when I exercised, I was excessively sweating, and it was causing dehydration, even though I was drinking about a pint an hour and drinking electrolyte drinks after exercising! I was told to cut down on anything that made me sweat! By the time I do the housework and walk the dog, I'm already hot and bothered, so it's cut down what I can do! Tried water aerobics, but unfortunately, our local swimming pool has been shut down so they can concentrate on building a new pool for the Olympics in 2012!!
Yes, I'm usually so positive and even help quite a few older ostomates to come to terms with it, but I can't seem to turn my frown upside down at the moment!
I'm just at the point now where I really want a life, but every time I try, something goes wrong!! Pah... I need to get over myself really, don't I? Teehee!
Thank you again for the help; at least with you lot, I know I'm never truly alone, even if I sometimes feel it! luv'n'ugz x x
P.S. I went to an NHS Dietician who, at the end of the hour, told me to continue eating what I could and not worry about the things I couldn't eat!?!?!?!? WTF I could've told him that! My hubby is now paying for me to go to a diet club, and it's working slowly, but without exercise, it's going slow!! X X
My Ostomy Journey: Keyla | Hollister
Freaky,
Yes, you had a bad day, but when you look at it, is it that much worse than driving along and suddenly getting uncontrolled diarrhea as a non-ostomate? This does happen. Okay, you filled up fast, and that can happen from something we ate or drank earlier. Whether the vitamins had anything to do with it is debatable. Perhaps if you know that you will be taking a long drive like that and presumably won't be anywhere near a bathroom, you should switch to a high output appliance. This would ease the situation. As for the exercising and sweating, yes, the two are ostensibly connected, but this can be remedied also if you make sure you keep yourself well hydrated. In this case, carry a bottle of water around with you and hydrate well before and after the exercise. Anyway, keep your chin up. The sun will be out tomorrow.
X_
P.S. Just as an aside, you mentioned cold sores. I used to suffer from these for years. The absolute best remedy for these is L-Lysine. If you begin to take this (about 2 per day) as soon as you feel that familiar tingle on the lip, the sore will either not break out, or if it does, it is significantly diminished and goes away sooner. L-Lysine is an amino acid, and you can get it readily over the counter or at a health food/vitamin shop.
I forgot to say, press your skin; if it stays red, it's likely to be an allergy to the adhesive; if it goes white, it should clear up by itself. When you're exercising, you should be drinking at least 1 liter an hour. I always drink electrolytes when I exercise. Just try some gentle exercise and see how you feel. Your dietitian needs a foot up his backside, sorry you had a bad experience with him. It gets better in time, (((hugs))).
Hello. I can relate to the blowouts. Even blew off getting frisky with my now ex. Shit happens.
I cannot believe I am actually writing this for the world to see... In my car, I have my "toilet in a bag". If I am in a car and can't get to a bathroom, I have a men's urinal bottle, bought at Walmart. I put the little blue disposable bags that come with my supplies inside the urinal. Or use a little strong bag. I then can empty my pouch into the urinal. You can then leave the bag and close the lid or take the bag out and trash it. The bag inside is so you don't have to see effluent and I keep antibacterial liquid and wet ones to wash hands. And a little bottle of Febreze or air freshener. I can tell you it has saved me from a big mess. And I have been in the car with passengers and not one negative word from them. I have even had to do this in a dressing room!!! How lucky are we that by doing this, we can do long road trips and not panic when you can't find a bathroom. It has given me a bit of dignity back.
And has anyone noticed that us ostomates are geniuses at inventing things to make our lives even better?
z
Hi Fairy
This may sound a bit depressing, but I don't think you ever come to terms with it totally, but we make the best of it.
I tried, when the weather is hot (not that often in the UK), using a non-scented roll-on deodorant on the skin around the stoma before fitting the backplate, which stopped my blowouts in the hot weather as it stops the sweating where it sticks.
Roll it on, let it dry, then pop the backplate on. It worked for me.
Hello, I told the world to f*** off so many times when I was in my 20s and 30s, now 40s, yes, but the world won't f*** off... haha, sorry, I had to lol because you're so not the only one to get pissed off. Could you try an ileo gel to soak up the liquid? Sorry, I didn't read the other posts. See the stomal therapy nurse; they are dedicated nurses. It could be the pouch. I have some creative devices for being in a car. But empty, guys pee outside; think like that. Use an old coffee can, leave something in the car, make sure you have a couple of pouches wherever you go. Sorry, hon, but yes, FTW. I have heard so many of these stories at my Association for ostomates, and yep, it happened to me
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You will find a way to find all the strange ways that can help. I have done it, and I don't give a shite... Mooza
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Learn about the physical and emotional benefits of using ostomy accessories.
Oh yes, Fairy ... I tell the world to FO every now and then. I think everyone does once in a while - ostomates and non-osties.
I too have a 'toilet in a bag' in the car. It has come in handy. Don't put it off - make up one today. Just having it there is a comfort, I think.
I don't understand the vitamins perhaps causing a problem. There are vitamins that are more 'organic' with less filler. Maybe it's the fillers that are the problem.
I'm in menopause ... want to talk about sweating
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? I'm still walking, doing housework, gardening, and 'glowing' like you wouldn't believe. I keep hydrated. If I back off on the exercise (which I've done over the past 2 months) - the weight packs on fast. Keep as active as you can.
Sometimes I'm leery of doctors with pat answers ... the 'don't exercise because of sweating' and 'avoid vitamins' makes me wonder. Hope you've been given enough backup info from them (or done research) to feel that it makes sense to you.
For watery output ... many foods have helped me when I want to thicken things up (I actually feel better with output that is more watery) - like bananas, marshmallows (just a couple), pasta, potatoes, some crackers.
For me, today is a "what a great day" day. Hope it is for you too!
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I just wanted to say that this is exactly what the site is about! I got my ileostomy just after my 16th birthday and was in the hospital for my 18th birthday, so I know exactly how it feels to not be able to get out and about, exercise, and basically feel like a normal teenager! I'm hoping that as I only had UC, I'll be able to have a J-Pouch, but right now it's been 'healing' for a year and I'm really looking into having a permanent ileostomy (which at 18 years old is the last thing I want!!!)
We all have bad days, and waking up feeling down then having a leak later that day is just the worst thing in the world! Sometimes when I think about being stuck with this bag for the rest of my life, I just feel like crying myself to sleep and staying in bed forever!!!
The way I perk myself up is to think about all the love you're surrounded by from the people around you, and if you can't go out, have people around your place! Never think about the bad stuff, and for leaky bags, I use Sensura by Coloplast, so maybe try a few different bags because I bathe with my bag on and it doesn't fall off, and before I have the J-Pouch, I still went jogging with the bag on and sweat didn't affect me! In regard to watery stool filling the bag too often, foods such as mashed potatoes, marshmallows, bread (quite high-carb foods) seem to help thicken!
I hope this has helped you, and remember we're here to listen to rants and ramblings when you feel like crap!
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Best wishes, Fran x
P.S. I know when I'm down I try to think of people who are worse off than me with different illnesses, but personally, I find that quite difficult, so when you're down, think of other ostomates (like me, for example) who are in pain every day from the minute I wake up, it even wakes me up in the night and I can't sit on my bum properly due to multiple operations I've had! I'm on a cocktail of pain meds every day and STILL have to face my stoma at least once a day... My greatest sympathies go out to you and I hope you are feeling better soon.
^That wasn't supposed to be a rant btw but some days I can't hold it in! I'm no different! Haha!!! x
The itchy part is probably yeast. That is why one post recommended Nystatin, since it is an anti-fungal medication. Sugar feeds yeast, so if you have been consuming lots of Gatorade by any chance, that will just make it worse. Cutting down on sugars and sweets and using an antifungal powder (even Lotrimin foot powder) will help this issue.
Don't you just want to say, "Don't judge me unless you have looked through my eyes, experienced what I have, and cried as many tears as me. Until then, back off, because you have no idea. It's okay to be pissed off!" ~traci~
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Hun, I've had my ileo for about 8 years and I still get so fed up with the damn thing. I've had shit leak out of my knickers at work because there is a leak, I've had parted company with my unfortunate friend during the night when the damn thing has filled with so much gas...and almost, nearly while having sex. We get over them, we still hate them, but life goes on. I'm sure we could all write a book about the misfortunes and benefits of our ileos...good luck, sweety...xx
PS: Try Cavillon cream or wipes for your skin, I haven't even one day had a problem with my skin. It's magic...I promise xx
Dear Freakyfarie,
I just read all the posts about your dilemma. I think that you already knew what most of them were about... one does seem to learn pretty quickly what works for them.
Primeboy is right on. It is good to blow off steam every once in a while. I noticed that there was a big change in your attitude from your original post to your last post. It's all right.
Sometimes we just have to make the best of a bad situation. Any chance for a reversal? If so, go for it! You'll love it.
Good luck
Jacksprat
Traci... I loved your post; you made me smile! Thank you
Jacksprat... Yes, I got over myself. I always do. I was just having a very bad few days. I think it was because we had had two long weekends in the UK, with people around me, and then back to reality on my own!! There's no chance for reversal, I'm afraid. Eric is for life, so I guess I'm just going to have to get used to it!
I suppose I should think myself lucky! For the first time in 20 years (I have Crohn's Disease), I feel relatively healthy, and I know many people who aren't as lucky!!
Thank you to all of you for your suggestions and your input! It means a lot to have people who understand!
Luv'n'ugz x x x
Thanks, I totally understand where you're coming from... I have had those kinds of days today when my imaginary friend was running with scissors, the voices in my head were fighting with themselves, and I think one of my personalities ran away... sometimes you just have one of those kinds of days! LOL (just joking) (or am I) hehe xoxoxoxoxo
You are a very special soul and have a great sense of humor... never lose that! Take care, my new friend! ~traci~ We love that smile!