Feeling down and this isn't like me!

Hi folks! I had my ileo surgery a year ago on the 28th and everything has been going ok! I thought I was positive and had accepted it but the last few days has been awful! Im 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 up 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 my self out about 9pm last night but today I still feel bad!

Ive been unable to work, my Drs have told me that I cannot exercise (or do anything that will create excess sweat) and he also took me off my multi vits as he reckons that was making my output too watery and too frequent! So Im 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, Ive been so positive but now I just keep thinking this is me for the rest of my life and Im 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 passed it?

Ive made an appointment with my Dr to talk over my next step! Due to the Crohns theres 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 drs have got to help me somehow!! This ISN'T my fault I didn't ask for any of this! Im the biggest Ive ever been thanks to the steroids that were supposed to stop me 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?

Thanx 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 thats 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 theres people out there worse off than me but even thats not helping me today and Im never a selfish person!! Hope you're all having a better day than me! xxxx

Hi Freaky. Venting is a good start; but, in reading your post, I find a lot more good news than bad. (Everything has been going OK for a year. You have been mostly positive. Your husband is very supportive.) Anyway, the point I would offer here is that accidents often can be prevented. Why didn't you empty your full bag before going on a 40 minute trip? Perhaps you could position your seatbelt away from your bag so sudden stops won't cause it to explode. I can't help you with the other issues you raise, but I can reinforce the importance of gaining as much control of your situation as possible. When bad things happen, you will find a way to pick yourself up, shake off the 'dust', and move on with your life. I am not just blowing smoke your way; like other folks here, I am speaking from experience.

You could of become allergic to your base plate, it might be worth getting a few samples of different products and see if they make any difference, have you got any skin barrier spray/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?

Hi! Read ur story...it happens to me I use NYSTATIN Powder 15 GM, I apply onto a 1.75"x4"

bandage...It seems to work for me...It is a perscription.  If it doesn't work 4 u keep it off for awhile.Let it heal.

Thank you people for the answers!

@ Primeboy I did empty before leaving the house but it was just over productive for some reason and filled up in very little time!

@Panther I use a barrier spray and Im normally ok 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 anything that made me sweat! By the time I do the housework and walk the dog Im already hot and bothered so its 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 Im 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!

Im 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 Im 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 don't worry aout 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 its working slowly but without exercise its going slow!! X X

Words of Encouragement from Ostomy Advocates I 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 diarrhrea for a non-ostomate? This does happen. OK, you filled up fast and that can happen from something we ate and 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 with 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 so 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 alergy to the adhesive, if it goes white it should clear up by itself. When your exercising you should be drinking at least 1 litre an hour, I always drink electrolyte when I exercise.  Just try some gentle exercise and see how you feel. Your dietician needs a foot up his backside, sorry you had a bad experence 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 can not 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 cant get to a bathroom, I have a mens urinal bottle, bought at Walmart. I put the little blue disposible baggs that comes with my supplies inside the urinal. Or us a little strong bag. I then can empy my pouch into the urinal. You can then leave the bag and close the lid or take bag out and trash it. The bag inside is so you dont have to see effluent and I keep antibacterial liquid and wet ones to wash hands. And a little bottle of febreez 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 u cant find a bathroom. It has given me a bit of dignity back.



And has anyone noticed that us ostomates are geinuses at inventing things to make are lives even better?



z

Hi Fairy



This may sound a bit depressing but i dont 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 oftern in the uk)using a none sented roll on deoderent on the skin around the stoma befor fitting the back plate which stoped my blowouts in the hot weather as it stops the swetting where it sticks.



Roll it on let it dry then pop the backplate on  it worked for me

Hell i told the world to fu off soooo many times i was in my 20s and 30s now 40s yes but the world wont f off ...haha sorry i had to lol cause your sooooooo not the onlky one to gett pissed off could you try an ileo gel to soak up the liquid sorry i didnt read the other posts see the stomal tharapy nurse they r deticated nurses ...could be the pouch i have some creative devises for being in a car . but empty guys pee outside think like that use a old coffee leave somthing in the car make sure you have a couple of pouches where eva you go sorry hon but yes FTW i have heard sooooo many of theses storys at my Association for osto's and yep happened to me

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you will find a way 2 find all the strange ways that can help i have do and i dont giv a shite ......mooza

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Oh yes, Fairy ... I tell the world to FO every now and then.   I think everyone does once in awhile - ostomates and non-osties.



I too have 'toilet in a bag' in the car. Has come in handy. Don't put it off - make up one today. Just having it there is a comfort I think.



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, 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 leary of docs 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 banana, marshmallow (just a couple), pasta, potato, some crackers.



For me, today is a "what a great day" day. Hope it is for you too!

Hi

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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 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 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 think about all the love you're surrounded by from the people around you and if you can't go out have people round 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 bath 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, food such as mash potato, marshmallows, bread (quite high carby 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 everyday 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.

Dont 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, cause you have no idea.Its ok to be pissed off!~traci~'

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   hun iv had my ileo for about 8 yrs and i still get so fooked of with the damn thing..iv had shit leak out of my knickers at work, coz there is a leak, iv had parted company with my unfortunate friend during the night when the damn thing has filled with so much gas...and an almost, nearly whilst having sex...we get over them, we still hate them, but life goes on..im sure we could all write a book about the misfortunes and benefits of our ileo's...good luck sweety...xx



ps try cavillon cream or wipes for your skin, i havent even one day had a problem with my skin..its magic ...i promise xx

Dear Freakyfarie,



I just read all the post's to your delima.  I think that you already knew what most of them were about....one does seem to learn pretty quick, just what works for them.



Primeboy is right on .  It is good to blow off every once in a while.  I noticed that  there was a big change in your attitude from your original post to your last post.  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 smile! Thank you

Jacksprat.....Yes I gotover myself I always do I was just having a very bad few days, I think it was because we had had 2 long weekends in the UK, with people around me and then back to reality on my own!! Theres no chance for reversal Im afraid, Eric is for life so I guess Im just going to have to get used to it!



I suppose I should think myself lucky! For the 1st time in 20 years (I have Crohns 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 alot to have people who understand!

Luv'n'ugz x x x

Thanks I totally understand where your coming from....I have had those kinda days today  when  my imaginary friend was running with scissors, the voices in my head were fighting with themselves, and I think 1 of my personalities ran away.......sometimes you just have one of those kinda days!LOL (just joking) (or am I) hehe xoxoxoxoxo

You are a very special soul and have a great sence of humor ...never loose that! Take Care my new friend!~traci~          We love that smile!