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Jaano711

Jaano711

Joined
Apr 19, 2012
Messages
536
Location
South Australia
Hi
I haven't posted for a few weeks, and fear that the last time I did I was not Ina very good place. I have now come to terms with the fact that I am losing my bum and will no longer need to rush like a mad woman with kids in tow trying to find a loo.

After several hiccups, the first being my surgeon of the last 5 years went AWOL and I had to sources new one. Luckily his locum was very informative and has made me feel a little less anxious about the whole deal. Unfortunately, she didn't give me the second opinion I was hoping for, so I am booked in and having this whole thing done on Friday 17 August.

I have read a lot of your posts and wish to say thank you. I am now starting to look at the operation as my liberation and am looking forward to post recovery when I can do all those things I have been to scared to do for years. Like long bike rides not routed past all available public toilets and long walks, on e again all based around smelly toilet blocks.

My husband and I have had lots of really good discussions about all that involved and he is so loving and supportive that I cannot believe how lucky I am. I have been very honest and upfront with our three children and they know what is happening and what the plan is. Unfortunately we live 4.5 hours from where I need to go for the surgery so they will be having there grand parents come across from interstate to stay with them.

I know that I am going to have heaps of questions when I wake up from the op, but would really like to know if there is anything this side of the op that I should know or be doing?

Once again thanks to you all for your wealth of information and advice that you offer.

Thank Janette
 
Hi Janette,

What op are you having done? I had a colectomy last year and then a proctectomy this ( when I lost my bum lol). I am so pleased to be 'free' and unrestricted. I hope you feel the same very soon. My hubby was fantastic too and is delighted that I am through it all. Ask me anything you need to know.

Love, Kaz xxx
 
Hi Janette
Hello.gif


As to what to do this side of the op, the most important things are to get your mind and body into as best shape as possible. A positive outlook does wonders and you are obviously already well on the way to acceptance of your new situation. But also be prepared for some bumps along the way - it sometimes takes a while for things to settle down and for you to find what suits you best in the way of routines and equipment.

And give your body the best chance possible to heal quickly. Eat well and get lots of sleep, if you can, before the op.

It sounds as though you have done very well already in working with your husband and children to prepare you all for this change. :thumleft:

Please let us know how things are going and remember that we will be here, too, when you wake up.
 
Hi Kaz
Thanks for that. Inthe pastI have bad an extended right hemi colectomy, a laparoscopic small bowel resection and another open resection, all due to strictures and fistulas. This time they're going to remove what I have remaing of my colon as well as all anus rectum etc. it will be open surgery due to adhesions etc.unsure as to how they go about removing the back end. Do they take it out from the back??? Ok sothey must flip you over to get to it. All a bit confusing. I am a radiographer/ sonographer but turn into Jo public when it comes to things they will be doing with me.. Probably avoid it cause it's to close to home. Just babbling now sorry..
 
I had my op as laparoscopically assisted, so partially laparoscopic and the rest open. It sounds worse than it is, the removal of the rectum and anus. The wound was the full length of my bum, and sewn sort of zig zag so that it would heal giving as much flexibility as possible. Apart from having no hole ( sorry tmi lol) you would never know now. It was uncomfortable, but bearable, I had a pressure cushion which was great. I don't know if I was just lucky but the stitches came out at week 3 and I have been fine ever since. Better than fine actually! Not really sure how they did it, and not sure I want to know really. I also had an epidural this last op, which was fantastic for pain relief. I was home on day 4 on paracetamol only, cos anything else makes me sick.

Your positive attitude helps, and like you, I looked at my kids and aimed to be there for them.

Let us know how it goes xxx
 
Hi Jeano117, I hope it goes well for you, good luck and keep us posted on how your getting on. Something to luck forward too...... Sigh I will be getting this done as well at some point argh!!!! Thinking of you and your family xx
 
I think you going in with a positive mind set is the most important thing you can do! And I think you have that.

It would be great if you could meet with the stoma nurses before hand. And if you could get some samples to play with before as well. Michelle (Misty Eyed) got a fake stoma even!

Be as healthy as possible prior to the surgery so you will heal faster. Lots of protein. Oh, and this is going to sound ridiculous, but get waxed. You will NOT be bending over for a good while! (that goes for most abdominal surgery anyway doesnt it!)

Good luck sweet heart!
:hug:
 
Thanks Misty
Have booked in for leg wax. Getting a bit real now, had a call from surgeon today and need to head to Adelaide a day earlier to see stoma nurse. One more day away from the kids. Makes me a little sad as my plans have to be changed, but will be good to meet stoma nurse, may help calm my nerves.

Will let you know how I go when I'm back on deck .
 
Hi Jaano711

Meeting the stoma nurse not only made things really 'real' for me, but it also helped calm my nerves, so I hope that that happens for you as well. Most of the stoma nurses are so informative, that it's nice to have a viewpoint other than the surgeon and GI.

On a shallow note, in addition to getting your legs waxed, I would also suggest getting a haircut/dye and to give yourself a good pedicure (like Misty said, bending will be an issue). I had some complications after surgery and wasn't able to get to a hairdresser for a long time and I felt dishevelled with my hair growing out.

Hope it all goes swimmingly in Adelaide.

Kismet
 
What you are feeling is very NORMAL. Just do what you can to keep occupied and prepared. It's all you can do.
:kiss:
 
Jaano, you have already been given such great advice that I really can't add anything there. I can tell you that when I had my rectum removed, it healed very quickly. They removed my colon and rectum all at the same time so it was done from the inside. The stitches in my butt were all internal and I really didn't experience hardly any pain afterwards. Maybe I am one of the lucky ones - here's hoping you are too!! Good luck with the surgery and make sure you update us once you are back home.
xx
 
Jaano honey, did you have the surgery? What's happened to make you feel so down? Reading your post, I am very concerned! You CAN make it and we are all here to help. Please let me know what you mean by "what have I done"
Big hugs to you!
Trish
 
Had surgery on Friday. Bum gone and a colostomy kinda of stoma, bits of all remaining bowel hooked to colostomy. It has been filling rapidly with both air and poop and has leaked, exploded and been tipped all over me in a series of separate events today. Just not coping and feel like its never going to do the right thing.. The amount it produces is just depressing. I will never be able to leave the house as it fills up so quickly and constantly. I didn't think things could get worse than pre op but now I am just sad.
 
A new stoma is like a volcano when it starts up! And I can promise you that it will NOT remain that way! There is a positive in this and that is the fact that your bowels are working. Some people have trouble with them starting up again.

It will regulate and improve! Sounds like the nurses haven't been doing so good. Has the stoma nurse been around? She is the one who can sort a lot of this out for you. I know things will get better, hang in there!
 
Hi Janette, so you have a colostomy not an ileostomy?

Please don't panic, at first there is a lot of output and lots of noise!! It slows down and you will learn what to eat, and what to avoid, and eventually get through the night too.

I hope you have just had a bad day and things are starting to improve.

Keep positive, you will get there.

Love Kaz xxx
 
Hang in there Jaano.
It takes a few months for it to settle. At first it just goes and goes and goes. And it springs leaks. Mine kept lifting on the LHS.
It takes awhile to get used to.
Give yourself time to adjust. Early days yet.
 
Think it might just be the night for a good sook and some pain meds..

I know let's put it all into perspective but unfortunately at the moment perspective a bit skewed to 'poor me'. I will get through this, I have to but, it's gonna take time, a whole lot of patience and time. To do it to do it to do it to do it right. I think life may just become a big gugrly explosive shitty second rate musical.. Must go and try to sleep with exploding.

About the stoma nurses, have had a brilliant one who only works mon and tues, and the one who led today's comedy of errors was more Basil Fawlty than confidence building. Step 1 remove bag (preferably emptied in jug and not all over freshly showered patient in clean bed. Also try to avoid getting poop all over large abdomen wound so that it goes under dressing and pools in belly button ) probably good idea at this point not to leave naked patient on bed covered in poo and surrounded by cloud of flatulence)with door open and visiting hours starting. Just grateful it wasn't my family who accidentally walked in on me. Next step, I think is to clean and dry area around stoma, rather than forget to, and then apparently it is helpful to hold bag in position for a short while to help it adhere and ensure it has stuck and sealed. As a result bag not fixed in place properly and explodes whilst family and work colleague in room with me. Did I mention the stoma nurse prancing back in mid work visitor and discussing the pros and cons of different bag sizes. Just not really ready to go there with anyone outside of family and immediate small group of close friends. Now I will have to have that conversation at work way before I was planning to.

Really if I was given the option today of getting old bum back im sure I would take it and not look back. But not an option so apparently have to hope it does get better and definitely chose stoma nurse carefully.
 
Oh god - that is like a bad comedy show.
I know you'll laugh about it in six months. But not today.
And reminds me as to why I refuse visitors in hospital!!

I know it sounds trite - but it does get better.
It's taken me over six months for me to be ok with mine - and I begged for it.
And it's good to have a sook about it all.
I've wept hours and days over all that has happened.
There were plenty of times I wanted to give up.
But I'm still here fighting.
Hang in there. You will get through it.
 
Oh what a nightmare - my stoma nurse was awful too. Couldn't wait to get home and in control myself. As soon as your able to get up, and change the bag standing up, you will feel so much better about things. Stay positive, things will get better. You will be free to be out and about with your kids before long xxx
 
That is by far the worst I've ever heard! No wonder you are in a state! :ymad:

The sooner you are up and about and able to do your own changing and be in control, the better you will be.

I swear things will get better. After that catastrophe, you certainly will need them to get better! On Monday when the GOOD stoma nurse comes, you need to explain what happened. By Monday, I hope you can get up and about and empty and change the bag yourself. If not...I hope the good stoma nurse will make certain you can do it on your own, even under supervision.

Major hugs mate! :ghug:
 
Fourth day post surgery, I had just messed all over the bathroom floor trying to empty my bag and called for someone to help clear it up, sat on the bed and then sprung a leak on the side of the bag. I hadn't tried to change one by myself yet at that point and so had to call for someone else to come and help me change the bag. I've got a bathroom floor covered in poo and now poo trickling on me... in comes the hospital clergy staff to pray for me----I yelled at them to get out! As they were leaving, they asked if there was a better time when they could come back... I just glared at them.

It was definitely not funny at the time, but yes, I do laugh about it now.

Hang in there! Let yourself be sad for a spell. You are in the middle of a HUGE adjustment, so don't be hard on yourself. It will all come together.
 
Omg no wonder your in such a state luckily mine were lovely in hospital. There was only one that made my stoma bleed like crazy the bag was full of blood:eek: that was after she changed it tho. I must be one of the lucky ones to have nice stoma nurses in hospital. Sorry you are having such a terrible time. Take care and keep us posted big hugs:( xxxx
 
Just reporting in that today has been somewhat of an improvement. I have managed to not end up covered in it. Nearly had a large lava leak was mm off breaking out. Left hand side, managed to get it emptied and stoma nurse was summonsed just in time. Today I was more in control of basil Fawlty the stoma nurse. I told her what I wanted to know, asked her to try a new bag as had completely lost faith in the one that kept leaking ( why if there are heaps of options do they keep trying to push the same ones over and over even if they are not appropriate) basil wanted me to wear a belt with the leaky bag. I said no as abdo sore and uncomfortable and don't think I could tolerate it. At least. She was listening to me today.
I have let up on being so tough on myself and just allow myself to start healing internally and externally. For now I will just breath and give myself credit for any small steps I make and not beat myself up over anything that doesn't go to plan. Let's face Mt Vesuvius and I are going to be together for a long time..
 
Lol basil Fawlty:) glad your in more control today let's hope things get a little easier each day for you. Keep us posted xx
 
Aha. Sounds like a better day today.
Some days are just going to be disasters.
They get less and less the more you get used to your new equipment.
Sounds like you've got a lively one too!!
 
Hi Janette, I had this. It turned out to be one of the anti sickness drugs was causing my small bowel to spasm. It was agony. They changed to ondancetron (sp ?) which prevents sickness without affecting the bowel.

Hope things are settling down with the stoma. If I had remembered how much output there was at the beginning I would have told you, but it just goes to show that it doesn't last. It took a few months though.

Keep focused on your kids, I needed to be well for mine, just like you do for yours. I would never go back, even if I could.

Hope you have a better day,

Love Kaz xxx
 
Hi,
Have had bloods and a ct. There is. Fluid collection in my pelvis that we are going to treat with antibiotics and watch. Will have to see what the week end brings me. Have no appetite and feeling a little sad and miserable tonight. Doesn't help that my husband and kids have headed back home (5 hours away) as kids have hockey finals tonight, netball finals tomorrow and football(AFL) finals on Sunday. Feel like I'm missing watch my kids make their achievements and on the flip side I feel I wouldn't be able to go anyway as this bag is way to embarrassingly noticeable.
Sorry whinge whinge whinge.
Janette
 
Janette sorry you are feeling this but I promise you it does get better. So sorry your missing out on your kids achievements. Hope they sort this soon and you get out soon xx
 
Apparently I have a fluid collection that we are treating with antis and will check on Monday.
On plus side I actually managed to empty bag myself with out spillage. Then also managed to change bag and it has yet to leak. So the question sit forward or backwards stad or empty into jug. All a bit hard to work out with stitches in butt and abdo wound. Was able to stand to do it today.

Hopefully night sweats will settle tonight and I may be able to sleep. How am I going to make it outside the security of the hospital??? Starting to worry about life going forward???
 
While still in the hospital, I was required to empty into a jug, and though I hated waiting to have someone empty the jug after they recorded the amount, it was much easier to empty that way in the first few weeks.

I was really, really worried about leaving the hospital. Once I actually got home, though, I soon discovered that everything truly was manageable. Keeping up with fluids while your body adjusts is a big challenge, but again, manageable. The first couple of bag changes I did at home brought on panic with full sweats and everything. I really didn't think I was going to do it right. I had my husband stand by me while I did it just to reassure me. As silly as it sounds, that was exactly what I needed at the time and did just fine.
 
I was terrified to go home and try to live a normal life. But baby steps at a time I got there in the end, and went back to work full time.

It took alot of inner strength, but we crohnies have that in spades. I bet you will find that as the weeks go on and you get more and more confident with things, you will be able to go out and enjoy yourself too.

There is certainly a learning curve, but it is not that difficult. The hardest bit is getting over the surgery itself. And the sicker you were before surgery, the longer it can take to get over it. You are already ahead of alot of people in that you are now doing things yourself. You will learn more each time you do it and grow in confidence.

I am sorry you are missing your kids big weekend. But dont beat yourself up about this! There will be many more weekends for you to enjoy with them, and if you get your health back, you will give your children the best gift of all, a happy healthy mum. That will mean alot more than a missed weekend.
:rosette2:
 
Hang in there, sweetie. I second all the advice you have received so far - the output in your bag will settle down, the nervousness about leaving the hospital will pass, the night sweats will definitely go away once you are off the pain killers, your butt will not be sore forever and most importantly, you will get comfortable living with the bag and you will realize how much better you feel and that it was all worth it. I remember when I first got my ileostomy, I was all alone in my hospital room and I cried for what seemed like hours. When my stoma nurse came to see me the next day she asked if I had had a good cry yet. I think feeling depressed and sorry for ourselves is a right of passage and then we move into acceptance. Of course, 12 years later I still have a pity party for myself every once in awhile!!

You may not believe any of us right now but trust us, things will get so much better!
Hugs!
 
How are you going today Jaano?
Any visits from Basil Fawlty?
Like the others - I remember emptying in to a bucket at first so they could measure the output. The bag was whopping too. I recently had one that big when I was in the hospital - with the little plug on it. They are great for ease of emptying and for volume held.
Your bag won't always be that big though. I was quite alarmed for awhile!
 
Feeling really flat today. My daughter won her netball final and is now through to the grand finals in two weeks. My 7 yo baby boy has his AFL grand final tomorrow and my big boy has a regional hockey carnival. I am exhausted thinking about it all, but sad that I am not there.

A friend rang me today and I have been avoiding phone calls, was accidental slip of buttons. I howled like a mad women, had to hang up and text her that I didn't like having phone calls but could hide my emotions behind text messages. On top of all that there is a chance that I have shingles so that's a great little extra to help me along!

Feel like I can't beat this at the moment and wouldn't mind running away from everything so they could all get on and live a normal life with out me in my present state. Not a wonder I feel so dehydrated, I can't stop weeping.

Basil Fawlty not on.on weekends so at least I haven't ended up poop coated today..

It's so unfair.
 
Lol - at least you had a poop suit free day! That's a nice change!

Wow - what accomplished kids you have. I bet they are as proud of you as you are of them.
This disease is a real bugger when it comes to missing out on things. I guess it helps us savour and appreciate things we do get even more. Not much good to you right now though.
It's a tough road mentally in the post op phase. I actually turned off my phone and refused all visitors except my parents, and one friend who also has CD - so we could talk about bum stuff. Even when I got home I only communicated by text or FB. I spoke to one friend when I couldn't make her birthday dinner - and just cried. It was awful. When I did see people - they were all shocked and weird about how sick I looked - which put me off social contact.

But I came out the other side. You will too. You will conquer it. Just cry out all those tears. Weep and wail. It's such an important part of the grieving process you need to go through.

I hope you feel better tomorrow.
You're in my thoughts.
 
How is the fluid in the pelvis? That's what I had and it certainly made me feel rough, what anti biotics are you on?
 
Hi big truck
Think I'm feeling a little better today. They have me on gentomycin and flagyl infusions. Still bloody sore but hopefully not as emotional today. How long did it take for your fluid collection to dissipate?
 
Little Rohan's u8 team won there grand final this morning and James got his first goal at the regional hockey carnival. Love the fact that my friends are texting me to tell me and not my husband. Feel like my doubts confirmed. I have become unlovable. Oh well
 
You're allowed to feel that way and you never have to apologize to us for expressing your feelings. At some time or other, I am sure most of us have felt exactly how you are feeling. Everything you are going through emotionally is completely normal for someone who has just had ileostomy surgery. You are not un-loveable, which I think is evident by the amount of people on this forum who care so deeply about what you are going through. I know you are the one who is sick and depressed and scared but your husband is probably just as scared and most likely he feels helpless because he can't make you better. Those of us with Crohn's have so much to deal with but so do our significant others and they all handle it in different ways. I got so angry one time when I was in the hospital and my husband showed up to visit in the early afternoon and he was totally hung over from the night before. I thought, how dare you go out drinking and partying when I am sick and in the hospital. I was really, really mad. But after he left (which was pretty quick after arriving, couldn't imagine why!) I realized that drinking and partying was his way of dealing with his wife being so ill. It is not how I would have dealt with it had he been the one in hospital, but it is how he tried to forget, for at least one night, that I have a chronic disease and will suffer with it for the rest of my life. I know he loves me and I know your husband loves you, too.

Hugs,
Trish
 
You are NOT unlovable! With all the trauma your body has just been through, the general anethesia, the fluid build up, etc...your emotions are getting overwhelming. Believe it or not, this isnt uncommon! (alot of us know it very well indeed)

I would suspect your husband thinks its perfectly fine for your friends to text you about the kids accomplishments, and is waiting to speak to you in person. Its a GUY thing.

The only thing that got alot of through this time is only concentrating on our bodies getting better. You almost have to put yourself in a bubble, and focus on healing. One thing at a time and one little accomplishment at a time. And total focus on that. Otherwise you sink into a hole. Dont let that happen.

While you focus on your healing and you are walking around (best way to get rid of fluid) look at others, speak to others around you, visit other wards if you can. It can be soul destroying to be in hospital with not enough to do, and it can take a toll on your emotional wellbeing. All you have to do is think about your situation. Looking around the other wards and speaking to others can break that loop that keeps playing in your mind. It will take you outside of that situation even if its only for 15 minutes and it can help.
 
Might be feeling crappy due to the fever I seem to have acquired. Today I hope a good day. Think I need one of then so will work hard at moving forward. Really nice to have the support of you all. Is very easy to feel all alone going through this. Others don't really understand, nor do I want them to really.
Thanks for being here
Janette.
 
Getting my Stoma was the most difficult experience I have ever had.
The support I received from members of this forum was amazing and really helped me.
I'm so glad I can now share my experience with the next person so I can help them in the same way I was helped.
You're not alone Jaano.
And you've got people who understand supporting you.
It's a hellish ride that you're on - but we're here with you.
I hope you have a better day tomorrow and shake that fever.
 
Hi jaano I had to have mine drained by ct guidance initially and then I was on tazocin for 3 weeks. Hope you feel better soon.
 
Ah Janette I remember feeling like you are now. I couldn't imagine feeling 'normal' ever again. But I do and you will too, in fact better than that. I bet your hubby didn't text in case it upset you, because he knows you would love to be there. Men - never get it right lol.

Take one day at a time, you are getting there xxx
 
Thanks for all the support. Still here in hospital. Must be getting better as I am starting to get cabin fever. Just want to go home now and see if I can do this. Unfortunately my output is too watery and I am not peeing, so now trying to get a plan of attack to fix dehydration issue. Still have pelvic fluid, will just see what the good doctor decides today. I am discreetly trying to pack up my room but I think it may be wishful thinking. At the moment just getting impatient waiting for the doctor to visit. The goal posts keep changing. Hopefully they will change in my advantage today.
Janette
Think I really just want to get out of here find somewhere to go and have a real good cry, til I can't cry no more and then get on with it. I think a good howl in private may do me better than any meds or medical facts right now.
 
Ok feeling really good. I have been released from hospital. Yay. I am also no longer dehydrated abd am feeling strong and positive. Unbelievable where dehydration can take you. My output was at 3+ litres, and I just couldn't keep up with the fluids.
Pleased to say my pelvic collection has shrunk so will need to keep an eye on it but behaving for the moment. Need to stay in Adelaide for the next week to go to stoma nurse visits and catch up with the surgeon to have some stitch knots cut.

I just hope that this hydrated positivity is here to stay. I even managed to have a friend visit today without any ill effect.

Now I just have to manage my stoma, it's in a bit of a bad spot, above belly button on the left ( will have to find some interesting ways to hide it)

Have an edge that I am using stomhesive on as it is not joining well but hey I think I'm glad to just be out of hospital and attempting to manage it on my own. Hospital literally 5 houses down street so am able to call stoma nurse if anything goes too wrong before our appointment next week.

Thanks for support
Janette

Ps dehydration is nasty on your emotions.
 
Hooray!!

The dehydration factor was my biggest fear about leaving the hospital. It scared me so much that I probably drank too much water in the beginning. It will balance out.
 
Thank you all for your support.
I'm sure there will be ups and downs.. I want you to promise me that if I start getting whingey and needy to please tell me to go and drink some water, and if it still doesn't improve maybe I'm in the need of a g&t (probably not a good idea though!)

My next big job is to name this baby!

Thanks janette
 
Hi Janette,

Glad you're home. You will feel better and better as you gain strength. Have you been told to drink the sports drinks with electrolytes in? These are best to avoid dehydration and put back minerals we lose. I was told water alone can dilute the salts etc and make us feel more dehydrated.

Good luck,

Kaz xxx
 
Yes - make sure you take your time recovering at home.
I started work a few weeks after my surgery and it was a terrible mistake.
I should have spent a lot more time recovering properly.
How are you going with the stome now you're out?
And have you had your really big cry that you needed?
 
Jaano, I've been thinking about you and wondering how you were doing. I've just read all this and caught up on your recover journey so far.
I'm so glad you're starting to feel more positive.
Its a bit scarey to read all this because I feel like what you are going through is something I'm going to be going through very soon.
This such a long road we are on. I really hope things are continuing to get easier for you.
 
So had a small set back on Friday. Everything slowed down nicely. I was thinking wow that was quick but all good. Then after lunch just started pouring water. I was losing 350mls through stoma every 1/2 to 3/4 hour like clock work. Bag came unstuck. Started feeling bloody awful and was nice shade of grey. Husband took me to casualty at 7pm after output over 3 liters output and drinking wasn't keeping up. Ended up back in hospital overnight on iv fluids. Felt great by sat morning, doctor put me back on codeine phos and upped loperamide and let me go. Now drinking sports drinks and lemonade as water just comes straight through me. Whilst in casualty had very embarrassing situation when again bag couldn't cope with water output and I sprang a leak. Nearly died but managed to do a very crude bag change in toilet cubicle and bag stayed on for rest of night. Was a big relief.
 
Your bowels are still trying to right themselves after surgery eh? I thought I'd turned into niagra falls after mine. It will get better, I promise it will! About 4 weeks it took mine to settle into "normal".

When are you meeting your stoma nurse again by the way?

Here's hoping you get past this initial hump we all seem to go through and get on with feeling great, just remember this stage will pass.
:kiss:
 
Thanks Misty
I meet with the stoma nurse again on Tuesday. This is a good thins as my base plate ( one piece drainable dansac) now seems to be coming in stuck near my belly button. Last 2 days I haven't quite made 24 hrs, last night preformed a bag change at 400am as could feel edge lifting and didn't want to have a leak in bed. Everything still feels in situ so am going to try and make it last until tomorrow. Have been using a seal which I was cutting in half and putting on bottom edge of rim. Seem to have had some swelling go down and have decided probably better to use full seal to slow any other leaks.
Does this make sense?
 
Awww sorry you had to go to hospital again:( hope things are looking up for you again. I promise you it does get better xx
 
Ffnarf! Miss Piggy! Great name. Your stoma is probably shrinking so measure every time, and yes the full seal should help with leaks.
 
Hi
Glad to report I made it home today. A nice 5 hour drive in my husbands 4WD. Not built for comfort, but I survived. Almost didn't get to leave. Surgeon was checking my incision when she pressed on this one spot and a fountain of serous fluid came squirting out and got both her and I. I almost passed out, she commented that she thought it felt like fluid. So she got a swab and started poking around in little whole, and bugger me if the swab stick didn't go all the way in, about 10cm from the surface Niall directions. That did make me feel very unwell. Surgeon was satisfied that it hadn't penetrated the abdominal wall but concerned by the size. So, sent back up to the stomal therapist who has wicked the damn thing, so now I have to go and have the wick changed everyday and hopefully it will resolve also have antibiotics. But the worst part, I now have 2 bags. One for the colostomy and one over the wick. Yeah I have to measure the fluid and keep a track of it. If it doesn't heal itself I will need to go back to Adelaide and have wound opened until it heals. So not fair. Just hoping for once in my life things work out well heathwise. On the stoma size, it has shrunk to 30mm and is now affectionately known as Miss Piggy.
 
:ywow: oh my 10cm deep? Hon, this is good they have that draining. You had complained about ab fluid quite awhile ago, wish they would've looked into it further then!

But I'm really chuffed you are home with Miss Piggy now, just take it easy and don't overdo things! (we all do it, patience is one of the hardest parts of recovery)
:kiss:
 
At one point I had 3 bags!! You know I had almost forgotten. Hope you don't need to go back to Adelaide xxx
 
One for the stoma, another for the mucous fistula and a third on a wound that took its time healing xxx
 
Settling into home and life with 'miss piggy' well. Unfortunately the collection o fluid under my incision has started turning to pus today. Have had dressings and wicks changed everyday. Hopefully the antibiotics and silver dressings will kill the bug. Really hoping it doesn't land me back in hospital. Anyone else had anYthing like this happen before. Ian really quiet scares iwell end up having to have wound opened to clean. I feel like everything is going to fall out of my wound when i walk around.
 
Glad you are settling at home and getting to know Miss Piggy.

I did have an infection in my wound, but it was a simple one, staph, from the visiting nurses believe it or not.

Which particular infection do you have? It would help to know. Or is it an infection? If you know what exactly it is, we might be able to help, or no doubt there is info on here from other members that have gone through it.

:hug:
 
Going ok. Infection not getting worse having it packed everyday so that is getting a bit tiring. Butt incision also being problematic it is breaking down. So off to Adelaide to see surgeon on Monday. Will see the stoma nurse while I'm there.

Haven't had a need for the big cry, but I must be getting better cause I'm getting a wee bit cranky. Can't wait til I can drive again. Picked up a new car 2 weeks before op and it is killing me watching my elderly parents drive it when I can't.

As for miss piggy. She seems to be doing fine. Due to stoma opening being right on skin it is a little sore and problematic trying to keep that skin happy. Have been using skin barrier wipes and seals, but still burning and sore. Must say I am very proud o myself and being able to sort the bag and all out, just worry about conflicting advice from different stoma nurses. The local nurse came for a visit this week and said I should only need to change it once or twice a week, that soap and water was just as good as adhesive removers and to just use a little micropore instead of coloplast extra adhesives. Got to the point I was waiting for her to say to rinse then reuse the bags. She didn't even ask to see my oddly positioned stoma with its awkward opening. I think I will stick to advice from good nurse who said two days max for a bag to help preserve to skin near the opening.

I don't know. What is the consensus on this, and does anyone use the windless tablets in their bags? I got a sample and tried one for overnight last night, and it is the first time I havent had to get up in the night for a ballooning bag. Not sure if it was a fluke or it works. So I am trying it again tonight.

Hope everyone is doing ok.
Cheers
Janette
 
Hey Janette.
You sound heaps better!
With a few complications - but heaps better!
My Stoma nurse asked me to not to use the adhesive removers as she said they strip away the skin.
I just use a cloth and water in the shower.
Glad you're slowly getting there - really good to hear!
 
Glad you are getting on the mend, and you'll be driving very soon! What kind of new car did you get?

Since you are on a one piece system, and having sore skin, your proper stoma nurse is right, two days max. You need to take care of that skin.

I got the ileo gel capsules when I used bags that didnt have built in filters and they were a big help to me. But, you can get bags that have built in filters of course so you dont have to worry so much about the ballooning thing! But...once those filters get wet (from the inside) they are useless.

Once Miss Piggy stops shrinking, you might want to try the two piece systems out. Something to ask when you get to speak to your good stoma nurse.
 
Glad your doing so well and hope it keeps getting better and better for you. Didn't know the adhesive spray stripped the skin tho.. I use it every time I take mine off hope it doesn't damage it... Take care and won't be long and you'll be driving xx
 
Sorry, I had to take the dogs out!

Adhesive remover doesnt strip skin??!! What kind of adhesive remover does that? Never had an issue with it whatsoever. I've damaged my skin by not using it though. And of course you should wash it off well.

But yes, soap and water can do the trick. Sounds like they are doing everything they can to make you SAVE them money actually. (old cynic that I am)
 
I use adhesive remover everytime I do a bag change so my skin WON'T be damaged. Like Misty said, if your skin is irritated, change more frequently like the stoma nurse said.
 
Sorry - I should point out - that is what the Stoma nurse told me.
I do not necessarily believe it!
Heaps of people use the adhesive removers and seem to have no problem.
I got the impression she just did not care for them much, rather than there being any veracity to what she said.
 
Not good.
Did the trip to the surgeons. So, incision breakdown nice and clean but not healing from inside, and joy o joy she was poking into the wound and what do you know the bottom of the incision opened up. So now I have only about 5 cm of held together wound. Was advised that this would open further, possibly all the way. So get to dressing nurse tonight and wound has opened further but luckily still not all the way.
Then she took a look at the behind and gave a small hole a jab with a long swab, and joy o joy it was 10cm deep and looked a bit nasty. :yfrown:

So off to stoma/ dressing nurse, and I have packing in my butt, that when removed tonight :yfrown:poured out 'gunk' I can't see it but nurse was a bit in shock from amout which came out on the hole. So now it is all going pear shaped. Why does all this happen when I get back home! Feel like I am cursed at the moment. I'm sick of telling everyone that asks how I am that I'm getting there! I feel a long way from getting there, in fact better seems like its going to be a long time coming.:mad2:

To make it even worse my great stoma nurse, the good one decided that my stoma now 27.5mm but the bag I use comes in 25 or 30 so she opted for a 25. Told me what a great job I was doing with awkward non centered 'miss piggy', then went on to decide ona new ring seal and smaller bag. Well whist in bed In posh hotel after searing burning pain, bag leaked all over the linen and once again poop everywhere. I raced like a mad man into bathroom. Removed bag, and all the skin under the flange was red and bleeding. Some was scorched from leakage but the rest was some reaction to the adhesive on the seal. Lovely bleeding ring. :frown:

What a horrid coule of days. Now skin really sore. Back to old bag and seal that don't kill me. Have bits of packing poked in places that shouldn't have orifices anymore. What a wreck. Think I'm about ready for that big cry, and no I am not dehydrated peeing well, about the only bit between belly button and thighs that is working properly.

Arrrrrrgggggghhhhh. :yfrown::yfrown::mad2::thumbdown::depressed::depressed:
 
Honey, it sounds like you've got every problem going. But look at it this way, you are just getting it all out of the way all at once! No point going halfway about things with you is there?!

Those wounds sound like they need opening up, vac'd and healed from the inside out. And I dont think they should mess about with it anymore.

As for the rings reacting to your skin, I think quite of few of us have had the trial and error with rings, bags, etc. And the error bit, well...SHIT. And NO ONE can compare the SHIT we go through like a fellow ostomate. But by gosh, if you are gonna make a mess...do it on NICE sheets damnit! Egyptian cotton or silk is my preference. And always on someone elses sheets!

What have they given you to help with your skin? The pain from sore stoma skin is horrendous, and I think we all give our empathy to you with that.

It is nice that little Miss Piggy is shrinking, but while she is doing it the leaks and blowouts are most common, along with the horrible toll on the skin. Lets hope she is almost done shrinking into her 'cup size' as I call it. Then you can find all the products, bags, etc that will work for you and make your life alot easier.

With all the shit you are going through, just take it one day (or one minute or one hour) at a time. Look forward...to a time when this is past. You will get through it. And someday you will be helping someone else get through it, and will laugh. (hard to believe but you will)

:rosette2:
 
Oh god sounds like your having a right awkward time aren't you:( will the incision heal on its own? I hope so keep us updated plz hope things get better soon for you xx
 
Just been to see local GP and she had a reall good look at the perineal wound. From what she could see it appears that there is a seaton in there. So the tract will never close unless it is removed. So at this point I am waiting for GP to get in contact with surgeon to ask if there is supposed to be a blue stitch (same color as my seaton were) still deep inside my wound. Unfortunately the tummy is slowly opening more. Shit happens hey.

I am in better spirits today, because being down is not going to get me through it or make it better. Just hate the fact that all the nurses at the local hospital (some school mums, some social acquaintances,some ex work colleagues) have all had a look and a go at dressing and packing all my bits. Feel as if I will never be able to look at them again, and repeating the story and getting the pity and sympathetic remarks. I hate that. Would rather it was my cross to bear and I didn't have people pitying me.

Oh well will just get over it because I reckon I will be seeing a fair bit of them with daily dressing changes and all.

Feel better already now I've had my whinge for the day.

Thanks
Janette
 
You poor bugger Janette.
It's really hard recovering from surgery.
I hate to say it - but it's still early days.
It took me just over six months to recover and there were quite a few heartbreaking and exasperating false dawns along the way.
I have such empathy for you. It sometimes seems like it will never end.
It can be so bloody miserable.
But hang in there.
It does get better.
It won't always be like this.
 
Janette, I'm hoping you wake up to a better day today! They sure need to sort you out. A forgotten seton? Wound opening up alot? Still drainage from wounds and issues? Honey, you need some better care.

Yes, complications are normal. (sadly) But yours need sorting out.
:hug:
 
Cheer Bear, thanks to our fab developer (who) you can click on the link now where I typed seton above. Pretty cool...it takes you to our Wiki.
 
Hi all
Had a colossally bad day yesterday. It started at 5 am with a bag leak, followed by a poop shower as isleepely tried to empty the ballooning bag of liquid crap and it just blew like a volcano. So discreetly at that time of the morning I was trying to clean the trail of crap to the bathroom, as well as the walls, ceiling etc etc in the toilet whilst trying to stop the leak.

Managed to sort of clean the mess, removed the offending bag, just it time for my stoma to squirt more liquid crap across the bathroom. Cleaned it up had shower and fixed myself up as best I could and Went back to bed. Unfortunately had/ have a dose of something and have water output. So when I woke up again 2 hours later new bag started leaking and got poop everywhere once again. Had to start all over.

For some reason I just cannot get my output to thicken up today. I have tried cornflour in water to drink, stale bread, marshmallows and mashed potatoes still can't get it to thicken up. Have taken loperamide 2 a half hour before eating (empty powder out of capsule and take powder ) and codeine with it and still it just stays watery.

Does anyone have any good advice - cant eat bananas as I break out in hives.

Glad to say diarrhea aside today has been better. No poopy shower yet, but feeling tired and flat.

Janette
 
It's still early days after the surgery for your bowels unfortunately. And believe it or not it's not unusual for this exact thing to be happening. However, I would definetely let your IBD and stoma nurse (the good one) know.

Dont let yourself get dehydrated again, cause it sounds like you have so much output, it could easily happen again. And this sounds counterintuitive, but dehydration leads to the big D. It also sounds like you need to get some zinc, magnesium, and potassium in you ASAP. You said you have a touch of a tummy bug? Is your family sick with it?

Can you tell me about what you are eating, and how frequently?

Wish I could be there personally for you! Stan was a nightmare when he was born too. He can still shoot 6 foot when he's in a mood.
:yfaint:
 
Janette, sounds like you had a right nightmare on your hands no wonder your tired. Glad to hear that hasn't happened again. Jelly babies, cheesecake, marshmallows and mashed potato are all good thickening foods. My stoma nurse always saying to take Imodium 45 mins before eating. Hope it gets better for you and make sure you keep up the fluids too hope this helps and keep us posted xx
 
I've been trying to eat small amounts frequently. I have semolina for breakfast, usually some toast or a sandwich at lunch and for dinner sometimes pasta, sometime mashed potatoes and pumpkin with some chicken. Tried some steak last week, but don't think miss piggy quiet ready for it. Have some crackers with a cuppa for morning tea. I have been drinking a fair bit. Having cordial and a Gatorade everyday. I constantly have a drink bottle of cordial with me and sip and revisit all day. As I may have mentioned earlier, I have never been able to keep water on board for very long, so always have to add cordial to it. I have some marshmallows and jelly babies, buti really like the idea of cheesecake. Trouble is kids would inhale it before I got any. I take vitamins everyday, have done for the last 10 years. Tonight I am having a bowl of mashed potatoe for dinner. It's a good thing I love mashed potatoe. I made a huge pot of it today.

Missy piggy seems to have slowed a bit but is now very noisy. Did this yesterday afternoon, got thicker then returned back to water overnight.

Thanks for all your help and info. It is just as hard as bringing a new baby home, except if a new born explodes a nappy that's ok. I know it will happen while I'm out one day but I just hope I'm mentally stronger when it happens.

Thanks
Janette
 
Do the supplements you are taking contain iron? That can cause the big D. You need iron, dont get me wrong, but it can back fire taken in supplements. How about switching from semolina to oatmeal for a couple of days and seeing if that helps?

Chicken, but even better...homemade chicken noodle soup! Low residue diet for 6 weeks or even longer depending on the person is standard after an ostomy. And you are right....Miss Piggy probably isnt ready for a steak just yet! Pumpkin is a brilliant food and full of goodness, but it might be a bit fibrous yet for your bowel. But everyone is different! (thats the trouble...no one size fits all!)

How about some nice cheese on those potatoes?
 

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