Will I ever feel normal again

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CheerBear12 said:
I wasn't asking to cause trouble sorry if I offended anybody. It wasn't meant to be
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LOL, Just joking- that's something you hear said when dealing with dangerous objects! :hug:

You'll get the hang of it. I just bend the wafer up a bit to make sure the fit is good.
 
Also learn to feel with your fingers. I didn't have any transparent bags once I left hospital.
 
So off topic but can I eat cheesies and does anyone drink carbonated drinks anymore? I could really go for some cheetos and a coke zero. Maybe it's to soon for that stuff yet?
 
I drink carbonated stuff all the time. I did starting while in the hospital. Some people have more air in the bag, but I don't. That's the only risk you run---more gas in the bag.

And yes! Eat the Cheetos. Lovely color changes ahead. :D
 
Im on the tail end of a flare up so not drinking carbonated drinks as much these days. Normally, it doesn't bother me.
 
Thank you :) and I drink them all the time and am fine a tip the stoma nurse gave me is too pour it out in a glass ten mins before your going to drink it. Gets rid of some gas
 
I'm finding I'm still afraid to eat too much. I'm having Major anxiety about having problems after I eat. Did anyone else have that issue? It's been so long that food has been hurting me that I don't trust it not to now.
 
All Chronies are better if we eat smaller and often, so start like that when you are at home - little serves and frequently. :)
 
Welcome home Amy, thats great news! As for the messy house I don't think any cleaning inspectors will be around so leave it all for now, it really isn't important. My house is still disorganised, can't find anything in the pantry or kitchen cupboards cos everything has been thrown in whereever but I'll worry about that when I'm all recovered, as should you. Just take it easy and enjoy having a good excuse for not doing much.
:heart: Anna
 
As per usual I missed two pages............I was interested in the folding technique for putting on the bags, does anyone else have useful tips for putting on bags or measuring the stoma? Cos of the odd shape of mine I'm finding it impossible to cut to fit - 25 on one side then it narrows and goes out to forty on the other. Should the hole fit tightly around the stoma or should there be a 1mm gap as one of the company reps told me? I'm totally confused and not sure if its the fit or the liquid poo thats causing all my leaks. It was so much easier when I had a perfectly round 32mm stoma. Should have kept it! Also with stoma paste how thick should it be? Doesn't it just stop the bag from sticking down? Help!
P.s. posted this query here as it may help Amy and the other newbie ostomates that have been posting here.
 
annawato said:
As per usual I missed two pages............I was interested in the folding technique for putting on the bags, does anyone else have useful tips for putting on bags or measuring the stoma? Cos of the odd shape of mine I'm finding it impossible to cut to fit - 25 on one side then it narrows and goes out to forty on the other. Should the hole fit tightly around the stoma or should there be a 1mm gap as one of the company reps told me? I'm totally confused and not sure if its the fit or the liquid poo thats causing all my leaks. It was so much easier when I had a perfectly round 32mm stoma. Should have kept it! Also with stoma paste how thick should it be? Doesn't it just stop the bag from sticking down? Help!
P.s. posted this query here as it may help Amy and the other newbie ostomates that have been posting here.[/QUOTE


When you get a cut-to-fit box of pouches, there should be a stoma scale included. I would think you could get that separately from the manufacturer directly.
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Yes I've got the stoma measuring thingys, its just they're all round and my stoma is sort of oval but with one side squished down, sort of like the Christian fish symbol without the tail if that makes sense. I think I might have to trace it and use that for a template - only problem is it NEVER stops. I suppose I could not eat or drink for a day and try then. hahaha
 
Just wondering how long did it take to bounce back a bit from this surgery? I'm still so sore and in the morning I can barely move. My back is so sore! When I get up it takes a bit for me to be able to breathe deeply because my whole body is just so pulled and tight.
 
Oh dear I need to be able to clean up my house before three months from now! I'm so OCD and living in chaos is driving me insane. I just want to clean up but my body won't let me.
 
If you need help, now would be a good time to ask for it. My other half was useless at the housekeeping and it drove me NUTS. But there wasnt a damn thing I could do about it. Ask for a cleaner to come to help if you must.

But dont YOU try to do it. :nonono: You'll only hurt yourself or get a hernia, and believe me you dont want that! If you can enlist family or friends to help out, all the better. But sometimes it's easier to get a stranger to do it...then you aren't so embarrassed (or I wouldnt be!)
 
Anna, try the moldable wafers made by Convatec. They also have them for oval stomas. You can request samples. No cutting required, they mold to your stoma like a turtleneck. There worth a try.

Amy, I sure hope I don't get a hernia. I'm only a little over 2 weeks post op and I've been pretty much doing things as normal. Still a little achy though. I've sure been eating like a horse, I can't get full! Food is now my best friend....:) I'm actually ready to go back to work, but I know it's too soon.
 
Thanks Nita, I'll call convatec again, when I spoke to them pre xmas they said they didn't have anything suitable just sent out more stoma paste but maybe now i know what to ask for specifically I may have more luck. Since they're new they may not be out here yet which would be a bit silly. Had the bag come off again in bed last night so now I'm trialling no paste, no rings to see what happens.
As for eating like a horse I've been the same - I think cos everything goes straight thru you never feel full. Unfortunately I'm definitely absorbing nutrients cos I'm beginning to look like the side of a horse! I swear I'm the only crohn's patient who can put on 10 kilos (unneeded) in hospital. I think it was all the custard and jelly............. :smile:
 
I'm pretty sure you are super woman Nitaboo313! I'm ten days post op and still popping pain pills like candy and can't bend over.
The only thing I can really do now is eat!
 
That's a great sign I love my food now :) it takes time to be able to bend over I was about 2 months post op before I even tried and even then it still hurt only lift light things to start off with
 
Ugh I was more sore today then yesterday. :(
I could barely move without severe pulling and the bottom of my belly is a little more read and swollen. I just hope it's not infection. I'm going to keep a close eye on it and see if it's any worse in the morning.
I really don't want to have to go back to the hospital. Any sure signs I should be watching for?
 
Are your stitches or staples still in Amy? That can cause that. And if the staples are still in you are due for them to be out.

Do you have a visiting nurse come by? If not, please get a nurse to swab it and test if there is any infection starting.

:heart:
 
I was told the redness was normal healing, not sure about the swelling, I was so bloated my whole tummy was swollen. I think the main thing to look out for is fevers, particularly above 38 degrees celsius - not sure what that is in fahrenheit. I was spiking fevers and they said my wound was fine......until it burst open. So definitely keep an eye on it and check your temperature although I think you'd be feeling pretty lousy if an infection is brewing. Hugs anyway and hope its feeling better tomorrow.
:heart: Anna
 
I had a minor infection in my incision, it cleared up after a course of oral antibiotics.
I didn't have a fever, but the part that was infected started draining bloody looking fluid (tmi sorry!) I went to the out of hours doctor and then just had it checked by the nurse at my GPs every few days until they decided that it was fine.

I hope you're feeling better today :) hugs x
 
Ya the staples are still in. The Dr said he would take them out for me on the second or third. The nurse visited yesterday morning and everything looked fine then. She comes back on Monday so I may have her look at it then if it doesn't get any worse over the day you today.
Is it normal for things to be more painful some days? I guess I just thought everyday would be a bit better.
 
Sorry, Amy, nothing about Crohn's works like that; it would be just too simple. :wink:

My GI said to look at it like one of those graphs that goes up, drops back a bit, goes up, drops back a bit - as long as it is generally heading upwards, even though it has some downward sections, you are doing OK. :thumright:
 
Yep, I'd say it's pretty normal to be rather up and down for a while. I'm nearly six weeks post op, and I definitely have good and bad days. The good days are beginning to outnumber the bad days though :)
You have to be patient I'm afraid!
 
CheerBear, your graph of recovery might go almost straight up, but one thing that recovery from my proctocolectomy taught me was patience.
 
I hope so but known my luck it won't nothing ever goes how I want it lol. I'll have to be patient then and take every day as it comes x
 
I think we all feel the same way. Like if it weren't for bad luck we'd have no luck. I feel like everything I've been through has made me who I am. And who I am is someone extremely strong.
I just keep saying to myself, this to shall pass.
 
Yep I have infection. The home care nurse just gave me a bunch of gause and told me to keep squeezing.
 
Oh no! That really sucks!
Good that it was caught pretty quickly and well done for noticing!! Fingers crossed it clears up ASAP. Are they going to give you some antibiotics?
 
maimmie said:
Yep I have infection. The home care nurse just gave me a bunch of gause and told me to keep squeezing.
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This is actually pretty par for the course with this particular surgery Amy. I had one as well. I can directly point to the visiting nurses changing my dressing to the culprits actually. (they didn't wash their hands first!)

A course of antibiotics cleared mine up. I assume they are giving you some drugs to clear it up?

It will be ok!
 
I'm still taking cipro and flagyl. I dunno if that's enough or not. My aunt who is a nurse said its good that its coming out instead of bursting inside.
So my new hobby is squeezing my belly and watching what comes out :(
 
I think we all had an infection after surgery...I did too...it kinda sucked, but again, wasn't the worst I've ever felt so I just went with it and took the antibiotics. Hope it clears up for you soon!
 
They'll need to swab, find out what 'bug' it is and give you an antibiotic specifically for that 'bug'.

Squeeze away! :ack: Hey...stop pointing the squirt my way! :ytongue:
 
Oh no hope it clears soon for you and hope they give you the right antibiotics for it. Well done for spotting it. Terriornut I can't believe the nurse didn't wash her hands before touching it of all people she should of known better.
 
I had an infection too, although the swab they did came back clear. It cleared up pretty quickly, and the only sign that I had one is a slightly raised area along my incision.
But yep, keep squeezing!! Yum!
 
Oh no! Did they say how the infection was caused? I hope it clears up quickly. Did you have open surgery on larpascopic? I went to my post op appointment today and I've been cleared to return to work! Yay.....

Things will get better Amy, it will just take some time. How are you doing with food? I had buffalo wings for the first time in years, and it felt great! Have you found an appliance that works well for you yet? I changed mined yesterday after 3 days and its was still pretty stuck, I may try to go longer this time.....
 
I'm not sure what caused the infection. My surgery was open so it's puss and blood draining from in between the staples.
Food seems to be going fine. I'm purposely taking it a bit easy but haven't had any problems yet.
As far as appliance, I'm still using the coloplast the hospital provided and it seems to be working well for me. Still no leaks! Knock on wood and fingers crossed. The nurse said it's because I have a nice flat area for it to stick to. My bag lasted a full seven days with no problems. Hopefully the one we put on today works just as well. I'm a bit nervous because we cut alot of the sticky part off to give my infected incision space.
I'm quite frustrated by how sore I still am. I'm having lots of trouble moving around. Still lots of pain and pulling. :(. I know it takes time. I wish I was bouncing back as quickly as you, Nitaboo313.
 
Mine was open too. I had really bad back spasms on top of feeling sore and tight. It seemed like forever, but somewhere around 6 weeks everything just seemed to stop hurting almost overnight. My energy came back at about that time as well.
 
Open surgery takes longer. Mine was larpascopic so that's why my recovery was much quicker. Wow, seven days without changing is amazing! I would be paranoid to go that long......glad you haven't had leaks yet.
 
Well I have a bad feeling this one isn't going to be that good. Its pulling pretty bad and have a feeling it has something to do with how this bag is put on. When I'm sitting its fine but when I stand up its trying to pull away. Good thing the nurse is coming everyday right now.
 
Hopefully it will last the day! Have you changed your own appliance yet?

I was reading how you were feeling Amy. I remember it so well. I thought I would NEVER feel right again. The hardest part is patience in the healing process. And oh wow is it ever hard to find the patience. My brain was WAY ahead of my body. If you give yourself the time, you will heal faster.

Wishing you a happy new year, and this is YOUR year Amy!
 
Don't feel bad about it, Amy. It takes most of us time to get familar with and confident about changing our bags. You just need some practice. Your seven days was far more than the majority of us could hope for! :hug:
 
Thanks Misty. I haven't changed my own appliance yet but I feel like if an emergency happened I could do it with a hand from my hubby maybe. As long as I can keep from panicking, which I will likely do first.
It seems pretty straight forward. Pull off old bag, clean up area, sprinkle powder if required, cut hole to fit, peel sticky back and apply.
I'm sure it wouldn't go that smoothly mind you. I had a mini panick attack before the nurse changed it toay.
 
Amy...I almost FAINTED the first time I saw mine and had to change the bag. So, you cant be worse than I was!

It might be a good idea to precut some wafers now...just a couple to be on the safe side.
 
Terriernut you took the words right out of my mouth. Definitely have some precut Amy. Also might be a good idea to try changing it yourself next time the nurse is there if you feel up to it - scary i know but should give you some confidence in case you have a leak and have to do it yourself when shes not there or you husband isn't. Although it does sound like you have a very well behaved stoma - 7 days is fantastic. Sorry to hear about the infection though - hope it clears up soon. In the meantime enjoy squeezing! :dance: We really are all the same aren't we?
 
Yeah I would deffo get them cut before changing just incase it starts to work or better still I don't need to cut mine they are already done for me :) see you can get them to cut them for you. Still take it easy and rest hope the infection goes soon for you xx
 
But don't cut too many as your stoma will probably shrink over the next couple of months. When it finally settles down you can get pre-cut wafers.
 
Susan2 said:
But don't cut too many as your stoma will probably shrink over the next couple of months. When it finally settles down you can get pre-cut wafers.
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Agreed. I remember my stoma shrinking somewhat quikly so it's probably best to measure and cut each time. If you absolutely have to pre-cut, don't cut more than two at a time (one for now, one for next time).
 
Ooh I ate too much new years eve snacks and now my gut hurts. Maybe I shouldn't have done that.
But Happy New Year everyone!!
 
Some nights I have a lot of output and some nights hardly any at all....somewhat of a 50/50 sort of a thing.
 
Not a lot of output at night no, unless I'm flaring a bit. Usually just a little, and gas of course.
 
Amy,

That's good you don't have alot of output overnight. That means more sleep. I have to get up atleast twice to empty mines while I'm half sleep (not fun). It also depends on how late you eat. I tend to have later dinners, so my stoma is very active at night. Not to mention the gas. Last night I was so tired and didn't wake up to empty it. When I woke it, it was big as a balloon and I thought it would burst! I don't use the bags with filters because I don't like the idea of the filter leaking! Gross! If your not having to get up for 3am empties, consider yourself lucky.
 
Sometimes I have lots of output, other times it's pretty quiet- all depends on when my last meal was. But one thing is for certain, after I get up and start moving around my stoma gets busy too. I always empty it right away after getting up, and then again just before going to work. That's a good thing though- activity increases bowel activity.
 
Well I guess I'll just count myself lucky for now. I'm sure it will continue to change over time.
Unluckily I had some more come out the old fashioned way today. I really hope that doesn't continue.
 
I get that too it's every couple of days but it'll stop when I get it removed:( You getting a reversal or keeping it? I apologise if its too early for you x
 
Amy, you will have mucus pass the old fashioned way. It isnt usually a problem. I've gotten to the point where it's only once in month or so. But it still comes out!
 
I had a doctors appointment today and we talked about the poop from the other way. My doctor says sometimes it continues and sometimes it stops since only part of my small bowel and colon was removed. It just depends on the type of surgery you had and your body. Everyone is different. Thankfully I haven't had it happen to me in over a week. I hope yours stop........
 
Only Ryan (Aka: Big Truck) has poo's from both on a regular basis! Bless him. He's one of a kind! (that's why we love him!)

I have to say my mucus poo's were more frequent, now really hardly ever. My regular poos after surgery lasted about 2 weeks. Bearing in mind it was emergency surgery I had, although I hadn't eaten for several days before hand. But with the stricture and fistula and perforation, there must have been some left overs.

And one thing that REALLY bugs me is: no one ever tells you these things after surgery!!! In fact, I had a surgeon tell me they would be "phantom" urges to poo! Well...it wasn't phantom at all! Shows what they know. Probably cant tie their own shoes! (wife must do it)
 
To be fair, most surgeons have egos bigger than their houses, so I bet they know how to tie their own shoes, they just insist that the wife do it for them. HAHAHA!!!!
 
Doublepoo still having a sir down motion 1st thing every morning and before bed every night! It's my bloody abdominal sinus (old psoas abscess site) which is causing me lots of pain and problems at the min, worse luck, but my surgeon isn't overly concerned the best answer I can get from him is that if he opens me down the midline to close Dirty Harry he will investigate the sinus/ fistula. So far no imagery inc ct , MRI, dye etc can positively show it connected to anything! It has dried up and closed twice in the past 4months only to form a blister near where it healed and explode open again. It has been swabbed countless times all clear and drains a clear yellowish liquid. So mr doublepoo is at his wits end at the min and I suspect there is a bad piece of small bowel under it which needs either medical treatment or resected but what do I know. Sorry for ranting on your thread btw. Ryan.
 
Mr Doublepoo, Ryan, bless you I sure hope you scream down the hospital one of these days and get that sorted.
 
Oh wow Ryan! How do you cope with it all? You are tougher then I am for sure. I get so upset when I have back end stuff happening. I guess I'll get used to it and hope it atleast developes some sort of pattern that I can deal with. I really don't like randomness. I want predicability in my life.
I probably wouldn't care as much if I didn't have my damn recto-vaginal fistula but that makes it super hard to get clean after.
To answer cheerbear, I don't know yet if mine will be temperary or permanent. The way the doctor put it to me was we would see what happened in a couple years. So I guess its most likely permanent. Hopefully I atleast get rid of my setons soon. I feel like frankenstein with all the stuff attached to my body!
I also have to say I'm very lucky because my surgeon is so nice. He actually seems like he cares about me and I like that.
I have to go for my post op tomorrow and have my staples taken out. I'm very nervous for that since my tummy is still tender because of the infection.
 
I feel very cheated because a lot of things I thought the bag would change didn't happen! And I have double fart and as misty says doublepoo and more annoyingly double the cleaning up!!
 
Ryan, you are truly one of a kind. Would it be possible for you to be seen by St Marks in Harrow? It just seems you aren't getting alot of help. And lets face it, you are really a medical anomoly aren't you?

I mean that in the nicest way ya know.
 
I would love to be seen by anyone! They tell me that I am a strange one! I'm ready to jump of a bridge to be honest, I've got an appt with my gastro on the 11th and waiting to hear from my surgeon as to when he can operate or whatever else he's going to do.
 
So if you know anyone in st marks misty who wants to fly over a doublepooing Irishman with complex crohns and two previously failed illeostomys and now a fucked up colostomy, who still has most of his small bowel and colon tell them to give me a call lol anything for research.
 
I think they'd LOVE to see you! You should ask your GI for a referral over there, seriously. Knew there was a reason I took a shine to ya...you're Irish!
Muah!
 
Had my post op appointment today. The doctor says everything looks good. But now I'm having to have my inscision packed to draw out the infection :(
Still feeling relieved to have the staples out. It pulls a lot less with them gone.
 
Remember, as long as the graph is moving generally in an upward direction...

It's very common to have some infection, your body was in very bad shape when this journey began. It's great to hear that everything else looks good. :thumright:
 
Amy, I'm still being packed and vac ed 6 weeks post op. Its a pain but like Susan said the graph is generally moving upwards.
 
I poo the old fashioned way maybe once every 2 or 3 weeks... but I do notice I will get occasional phantom poo feelings... I dunno if its just colon spasms or what but it FEELS like I have a big poop to do, but there isn't anything there. My mucus poos were very frequent when I had my little stomach bug over christmas.
 
Even with no colon at all, no rectum and no anus - and having been without them for 13 years - I still get some phantom poo feelings! :eek2::ybiggrin:
 
Susan2 said:
Even with no colon at all, no rectum and no anus - and having been without them for 13 years - I still get some phantom poo feelings! :eek2::ybiggrin:
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WOW! :awe: But I guess people who lose an arm or leg still feel pain or itchiness even though the limb isn't there so why not a missing bowel? Amazing how our nervous systems work (or don't) :)

I rarely get mucus poos, have only had one since the op 6 weeks ago but do get that feeling on occasion. Thought maybe it was the mucus working its way down but maybe its just that old nervous system at work.
 
maimmie said:
Had my post op appointment today. The doctor says everything looks good. But now I'm having to have my inscision packed to draw out the infection :(
Still feeling relieved to have the staples out. It pulls a lot less with them gone.
Click to expand...

Yay, staples gone! Make sure they use clean gloves when they pack you. Which antibiotics did they put you on specifically for the infection?

How about your stoma stitches? How are they doing? Most folks stitches don't dissolve like they should and they have to be removed as well.

You are getting there Amy! In a couple of weeks you will be doing great. This patience thing is very tough though isnt it?
 

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