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Ileostomy surgery tomorrow - relieved, excited and a little intrigued!!

Samboi

Samboi

Location
Australia
Quick précis -
Infliximab infusion - epic fail! But gave me a brief taste of constipation!
Constipation resulted in what was thought to be a thrombosed hemmy - that made a rather colorful explosion in my toilet bowl!
The excruciating pain drove me to hospital (actually - the driving part was horrendous! Had to get my mum to collect me!! Ouch!!)
Surgery conducted - not by my preferred CRS - who was on holidays.
Sent home .... Hmm ... Painful!!

The pain seemed to worsen. It literally felt like a burning stick had been rudely shoved up my butt. I was in agony. Endone did nothing. Neither did lignocaine, Emla, or rectogesic. Sitz baths numerous times per day, was down to one small bowl of noodles per day. The thought of having a bm put me into paroxysms of fear. When they did happen - I was traumatized. Just rolling over in bed involved so much pain I had to steel myself to do it for about five minutes prior.

My mum came over to do my errands on Thursday - and brought me back to the hospital. I had the admitting doc approach me with a sigmoidy thingy. My mum nearly punched him! I told him no way - he could look at the outside if he was gentle - but no entry without anasthetic. He then understood a little better once he had a look.
Morphine - my new friend - finally delivered relief. Finally saw the CRS the next day. He ordered pain relief and took a cautious see how we go approach. My cries of pain accompanied by grunting and various other animalistic sounds terrified my very lovely 82 year roomie who was in to get a skin cancer on her leg removed. Poor dear could Not escape!! By the end of the day - he booked me in for an EUA early this morning.
My mum came over to do my errands on
 
Samboi

Samboi

Location
Australia
Quick Précis Part Two -
Sorry - writing this from my phone from my hospy bed and I'm a bit of a luddite - so not really sure about what I'm doing!!

Also managed to traumatise a nurse with my pain. Poor thing came in to the room - I was white faced, tense and sweaty. She asked me to describe my pain, which I did through gritted teeth (from pain) whilst gripping the bed. Morphine arrived, my usual good humor returned.

EUA - prep area - spent crying from pain. Quietly of course - didn't want to make a scene!
Couldn't wait to be put under - just so I could have some relief.
Wake up painless and groggy.
CRS visits me once I'm back in my room and awake.
He shows me a photo of what is meant to be my rectum. It's a bloody ulcerated mess. He can't believe the pain I have endured. I can't either. Without hesitation - he recommends an ileostomy. He seems to have an expectation I might resist. My answer is an unequivocal yes. It needs to heal and I endured two weeks of agony. I want it to be over. My mum tells me later that the family had already voted amongst themselves that I had to do it. I know I have made the right choice.

So I'm tucked I'm my very nice hospy room - enjoying the elevated level of pain relief and wondering about tomorrow. I'm relieved there is light at the end of the tunnel. I'm intrigued about what will be different for me from tomorrow. I kinda wish it came with scaffolding or something big and tough looking - reflecting the damn pain you have to endure to finally get one!! But I think I'll be happy with my little bag and this next phase of my life. And my poor little bum will be happy for the opportunity to have a rest and get better. Fingers crossed - it will all work out for the best!!
 
Susan2

Susan2

Hi Samboi :bigwave:

Sounds like my rectum, but I had a total proctocolectomy as it and my anus were too far gone to save. Apparently they were preserved in a jar as an example for students of just how bad things can get with Crohns. :rof:

It took me a while to heal completely, but I have been so much better since. (It was 12 years ago.) I don't take any drugs, except panadol from time to time; I still have to watch carefully what I eat and still have some diarrhoea - usually just as unexplained as before the ileostomy; I need to be careful that I don't get any tummy bugs as you dehydrate quickly with an ileostomy; "accidents" come with the territory of having a bag and it will probably take some experimentation to find what suits you, but there are lots of pluses.

I think that I read earlier that you like travelling. I travel a fair bit and have worked out systems of coping with the bag bit.

Here's hoping that things go well for you tomorrow and that it will be the start of a new and more positive phase of your life. :thumleft:
 
Samboi

Samboi

Location
Australia
Thanks for your kind words and encouragement Susan.
They are helping me to think of this as a new opportunity rather than a further affliction.
In fact - all the Osty peeps sell the option really well.
So thank you to all of you as well.
 
Nyx

Nyx

Moderator
Good luck with your surgery! My rectum was a mess too, and just like you going to the washroom was agony! I have a permanent colostomy and I don't regret it one bit. I hope your ileostomy gives you your life back :) Keep us posted on your progress when you can. Welcome to our little club :)
 
glum chump

glum chump

Hey Samboi

Wishing you a really successful surgery and healing. I have an ileostomy, too, and was the single wisest decision I ever made in my life. Given your story, I'm sure the relief on your body will be most welcome.

Take good care, and when you can, let us know how it all unfolds...

Thinking of you,

Kismet
 
Terriernut

Terriernut

Moderator
Samboi, good luck with tomorrow!!! You sound like you are doing the right thing! When the morphine allows, have a good nose around this sub forum for insights and wicked humour.

Can you keep us updated on your progress?
:ghug:
 
Samboi

Samboi

Location
Australia
Thanks Misty. It's 5am here and I'm awake and ready for my shower. Just waiting for my shot of morphine so I can endure my last excruciating bm.
There also happened to be a pretty awesome storm passing through - so got to watch that too!
Doing my last bit of research and a bit of light reading. Had a few quick pangs of anxiety - but then felt reassured. Already thinking of getting a new pair of cargo pants to accommodate my emergency kit!
 
Terriernut

Terriernut

Moderator
You must be in Hawaii? Or where are you luv?

Normal to be a bit nervous mate! Its going in that is the scary bit. Enjoy that shower! It might be a few days before you are up for another one.
 
Samboi

Samboi

Location
Australia
I'm in Australia. Melbourne.
Thanks for the tip about the shower.
I will now be sure to savor it!
I forget about those kind of practical things. Like I'm having some serious surgery and might actually be immobile for awhile. I'm hopeless at being sick!!
 
Terriernut

Terriernut

Moderator
Samboi said:
I'm in Australia. Melbourne.
Thanks for the tip about the shower.
I will now be sure to savor it!
I forget about those kind of practical things. Like I'm having some serious surgery and might actually be immobile for awhile. I'm hopeless at being sick!!
Click to expand...
Its ok, thats what us girls are here for...the practical matters!! LOL. You will be immobile for less long than you WANT to be! They will want you up and walking fairly quickly! And your stoma to be working. And you wont want a shower cause you will be knackered for a bit.
 
Samboi

Samboi

Location
Australia
Lol. In my mind - ridiculous deluded thing it is - I'd be up and about - mucking around with my new poop shute, practically running a marathon by close of business Monday!!
I forget my body is so worn down by the repeated hospy visits in the past two months, the lack of nutrition, no vitamin and mineral retention .... no energy ... Toxic drugs ... Etc.
I just have to take it slowly and let myself heal.

And thanks for holding my hand just before I go in - it's very kind of you and I really appreciate it.
 
Samboi

Samboi

Location
Australia
It's scheduled for 9am. So a bit to go.
The morphine has kicked in. I've had my last excruciating bm.
Had a lovely long hot shower, washed my hair and I smell all clean and fresh.
Every shower - I realize how weakened I've become. Shower time is my peppy time of the day - thinking about all the stuff I'll do in my day, get excited about all my plans and get my day underway. I'm very particular about my routine and love leaving the bathroom feeling refreshed, smelling nice and ready to take on the world!!

The last two weeks - I can barely dry myself and don't even have the energy to roll on deoderant. Just roll back in to bed. It's pathetic.

But I can hear the cavalry!!
 
Terriernut

Terriernut

Moderator
Good luck sweetheart,the first few days are the worst! After that, you'll be on the mend!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
2thFairy

2thFairy

Good luck, Samboi! So happy for you that relief is in sight. I am going to have proctocolectomy surgery on January 17, so I'll be watching your experience and learning from it. Keep us posted!
 
S

SallyO

Location
Scotland, UK
Lots and lots of luck, you've a wonderful sense of humour despite the horrendous time you've had, I also have just popped in and couldnt help but send you a post!
Hugs xxx
 
Snap

Snap

Location
Kirkwood,
Sending you wishes of healing!

:ycool: Hello Samboi! Thumbs up for a successful surgery and uneventful recovery---once you are healed you will feel sooooo much better. I had surgery (severe Crohns Dz) about 3 1/2 weeks ago (colon and rectum excision with ileostomy)---and it no longer hurts to eat--I do not have the big D---and there isn't copious amounts of blood coming from my bum! Yes! Obviously, I am still healing, and am trying hard to be patient with that! Keep us updated--rest! :rosette2: Dana
 
littlefreebird

littlefreebird

Big Hugs to you. you have been through so much, you're right- there is light at the end of the tunnel! you're coping so well.
i got my ileostomy in july 2011, the removed my colon, rectum&anus.
i can't believe the difference- actually have a life now, with no pain :)
hopefully you will feel the same :) try and walk the next day but don't push it, you'll make a little improvement everyday..

good luck!!!!! keep us posted!
hannah.x
 
L

lostpanda

Best of Luck Samboi, sometimes the road less traveled turns out to be the best road of all. I had mine done in 06 and have never looked back. In spite of all the pain and trauma you have endured these last few months, you seem remarkably sane. I'll be praying for you and your new friend. Don't forget to name it, most of us have. I just call mine "my Porta Potty"; it works... Take care ok. Bob from the foothills of Maine
 
Samboi

Samboi

Location
Australia
OMG. This is the fourth time I am writing this. How clumsy are my chubby little fingers!! Lol.
Surgery went great. My new little friend gurgles like a little baby, and tickles my tummy!! That was a funny little unexpected surprise!!
Still too scared to eat solid food - tackling that at lunch today.
Had my last excruciating bm. It was the worst one ever. How did I manage that pain for so long. Now my poor little bum can recover - already feels more relaxed. I know I have made the best decision. I wonder how people coped in days of past? How did they do it?

I'm feeling good and ready for the physio to come and collect me for a lap of the ward.
Stoma nurse is coming tomorrow to fit me for my first bag - excited much!!
My parents are thrilled.
Thank you all for your support. So far - so good!! Stoma rating - super awesome!!!
 
Misty-Eyed

Misty-Eyed

Wow Samboi, I'm very impressed! I could just about read my texts, there was no way I could text anyone back for a good day or two after my op!

I had all of my colon, rectum and anus removed in October and I think you'll love your ileostomy. I love mine! It's so nice going to the toilet when you like and not feeling like you really need to go! I hope everything goes ok. You sound positive anyway which is always the best attitude to have!
 
Samboi

Samboi

Location
Australia
I feel liberated already.
No more fear about going to the bathroom and the unendurable pain that involved makes me feel like I have already had a massive leap forward in my recovery. I feel so much more relaxed. And I'm excited about being able to walk - not hobble!!

My biggest problem - the brain wants to run, whilst the body is still learning to walk. I get a taste of the freedom and go crazy - which sometimes makes things worse. I just have to remember to pace myself. No marathons just yet!! Lol
 
ameslouise

ameslouise

Moderator
HI Samboi and welcome to the club!!

Try to take it easy and relax. Get plenty of rest. You'll have time to run and jump later!!

Hope your recovery goes well and easy. If you're anything like the rest of us, you'll love your stoma and the new life it will give you!!

- Amy
 
Nyx

Nyx

Moderator
Wow!! You're doing amazing! I couldn't have even seen my phone let alone text anything on the first day after my surgery...lol I was out to lunch! But try and take it easy...you don't want to do too much too fast and risk complications with your surgery. Glad it went so well :)
 
Samboi

Samboi

Location
Australia
Good advice thank you.
Just had my first proper meal since my mum's Xmas Lunch. It's been a long time between meals!!
Beautiful steamed fish in a lovely sauce with some mash. Fingers crossed it goes down well and exits at the right place. I'm still a bit scared about the exit bit - but excited to see how it comes out in my little baggy. I'm half expecting to look down and find a little goldfish splashing about in there!! Also wondering if I'll get some exit gurgles and tummy tickles from my new friend.

And heeding the advice of the forum experts - focusing on some rest and recovery time. Thank you all for helping me keep my enthusiasm in check!!
 
Nyx

Nyx

Moderator
Did they remove your rectum and anus too? Just asking because if they didn't, you'll have discharge from there (at first leftover poop, then just mucus). No one told me that after my surgery...I was so surprised to have a poop out of there!!! Just wanted to give you a heads up there, so you're not wondering what the hell's going on down there!
 
Samboi

Samboi

Location
Australia
Hi Cindy. Thanks for the heads up.
I still have all my other bits. I've been told to expect a bit of mucus discharge every couple of weeks. I had my last bm of leftovers this morning (at least I hope - not sure I could cope with the pain of another bm right now!!)
I'm hoping the mucus discharge will start later - rather than sooner - as my butt really needs a decent break to heal. The CRS showed me a photo - and it was not even recognizable. I can't even describe the damage - it was just kinda wrecked.
Do you know when I should expect my first mucus visitor? I'm a bit scared about anything exiting that wound right now - at least not without 10mg of morphine at hand ... Along with a sound proof room!! I've frightened enough people with my expressions of pain already!!
 
Nyx

Nyx

Moderator
Everyone's different, but I have discharge every time I go to the washroom. But I've heard of others on here that only have it every other week. Be assured though that it doesn't hurt at all. My anus and rectum were a right mess, and it didn't cause me any distress to discharge any mucus. It's nice to not have to push your brains out to get anything to come out...lol I don't remember the first time I had discharge. I was in the hospital for 3 weeks (I had complications) and I'm sure it happened there, as I was shocked that I had poop coming out the old fashioned way! I'm thinking it was in the first week though, as I had a catheter in for the first 5 days so I didn't have to go to the bathroom at all (that was heaven btw...lol) So I'm thinking that it happened right after they took the catheter out. I had emergency surgery so I had some leftover stuff in my system...scared the hell out of me...lol
 
Samboi

Samboi

Location
Australia
Hey cool. I guess I'll just wait for my first little visitor.
And I have to say - you cracked me up with your "old fashioned" reference. Lol.

And thank you for reassuring me that it shouldn't hurt.
I'm really scared of the pain it might have involved.
Makes me feel way more comfort around it.
 
Nyx

Nyx

Moderator
I was more surprised than anything...since I had so much pain going to the bathroom too. I don't even feel it now. Although I do feel the need to 'go' like I used to back there...it's really weird. And when that happens it almost always means that Oscar's doing his thing. It's weird how our bodies are so conditioned to certain functions...Makes it easy to know when to empty my bag though..lol
 
Samboi

Samboi

Location
Australia
Yeh - the nurses have told me to expect phantom exit requests from the old equipment!!
So good point - good cue to empty the little scamp.
I still can't stop giggling every time it gurgles and I guess - farts.
It's got me in stitches. Talk about puerile!!

I love the name Oscar btw. My first cat was named Oscar and I loved him very dearly.
I feel like I've used all the good names in the world on my cats and I've left nothing over for my stoma. How shortsighted of me!! Lol
 
Nyx

Nyx

Moderator
lol...you can always do what I did...I took a poll on this forum and had the other members name my stoma :)
 
Samboi

Samboi

Location
Australia
Well they chose very well!!
I'm still deciding if mine is a boy or a girl. Lol.
Based on it's behaviour so far - it's not going to be a fancy or sophisticated name - that's for sure!!
 
Terriernut

Terriernut

Moderator
Samboi, you are doing great!!!! You may still have to pass some mucus and stuff through your bum though, so be prepared for that. But welcome to our little club!!!

And how are you texting so soon??? Amazing. I was in lala land for the 1st two days.
 
moogie

moogie

Wow you have great attitude.

When I woke up with my bag (ok I did not expect it) I was piss mad and wanted to kill every body.

My hat off to you my friend. Rest well.
 
Snap

Snap

Location
Kirkwood,
:ytongue: Samboi---it will come out just fine in your little baggie! I understand totally! My ileostomy (named Blossom) is almost 4 weeks old--just a babe yet. Anyway, I have dubbed myself with "post traumatic colon disorder!" When I was still in the hospital, I drank cranberry juice with my pancake breakfast. I looked down at my baggie and saw a bunch of red! I almost started to cry thinking that the dreaded blood had returned! My lovely nurse gently reminded me that I drank red juice--and things kinda come out like they are put in sometimes! WOW--was that a relief---I can laugh now! Continue on with your great attitude--it will serve you well. Life is definately better for me--just as it will be for you---just like it is for our other friends on this forum! REST and do not overdo! Dana:ysmile:
 
Susan2

Susan2

Snap said:
SNIP, SNIP When I was still in the hospital, I drank cranberry juice with my pancake breakfast. I looked down at my baggie and saw a bunch of red! I almost started to cry thinking that the dreaded blood had returned! My lovely nurse gently reminded me that I drank red juice--and things kinda come out like they are put in sometimes! WOW--was that a relief---I can laugh now! SNIP, SNIP
Click to expand...
For me it was beetroot (which I love and can tolerate). It comes out bright red and had me in a panic the first time!:ybiggrin:
 
Samboi

Samboi

Location
Australia
It seems I was a little ambitious in my first two days.
Had a terrible night last night - vomited all night.
Very nauseous today - very quiet.
Just want to feel better again. Not looking forward to tonight.
Just want to be able to sleep without feeling so sick and unwell.
Early days yet.
 
Susan2

Susan2

Hi Samboi. :bigwave:

I am really sorry that you are not feeling well, but you have to remember that you have had major surgery and if you try to push it too hard, your body is likely to rebel. Just getting rid of the anaesthetic is a big job for your system, especially when having to cope with Crohns as well. Take it one step at a time, rather than trying to run up the stairs, missing every second one! :ytongue:

I hope that you are feeling much better tomorrow.
 
Terriernut

Terriernut

Moderator
Samboi, I'm sorry to hear that. Take your food level down a notch, maybe just water and jello. But, the pain meds can also make people nauseous.

As Susan said, your body has really been traumatized. And wow do our bodies like to let us know about it! Rest, rest, and rest some more.
:kiss:
 
Snap

Snap

Location
Kirkwood,
Hey Samboi--rest rest rest--just like Susan and Misty said. We are motherin ya now! You take care of yourself--don't let your pain get out of control before asking for meds (I was horrible with that one--still am!). You will get there--just gotta be patient--and that's really hard! Keep your chin up and know we are here for ya!:ghug: Dana

Hey, Susan--what is beetroot? I assume like beets? Ew I don't like beets--they taste like a dirt clod! LOL!
 
Susan2

Susan2

Oh Snap! Beautiful beetroot!



Did you know that they are full of antioxidants and are anti-inflammatory?

I put them in soups and stews, grate them into stir fries, slice them up cold for salads or sandwiches. And the leaves are great, too, in stir fries.

Do you get the baby beets where you are? They are so sweet!!
 
Snap

Snap

Location
Kirkwood,
HMMMMM, never heard of baby beets---I'll have to ask my grandma. Sweet tastin, huh? Yeah---a sweet peice of dirt--HAHAHAHA! I drink green tea with honey for antioxidant, but I will have to look for baby beets--I would be willing to try em! Thanx!:sun: Dana
 
Samboi

Samboi

Location
Australia
Still in the hospy.
Nausea and vomiting still. Xray has determined there is a blockage. The bag puts out as much as I throw up each time.
It's really wearing me down being this unwell.
Picc line going in tomorrow as even a shower needs a three hour nap to recover from. They will decide upon waiting, or more surgery tomorrow.
I've never been this sick before - and I'm not liking it.

Who else had complications? And how were they solved?
I know somebody else did - but I'm too exhausted to read back.
 
littlefreebird

littlefreebird

aww i hope you're feeling better soon and hope the blockage passes without the need for more surgery.
i was in hospital for 10 days and the whole time i was there i washed using a basin of soapy water at my hospital bed- theres no way i could manage having a shower and holding my arms up to wash my hair..don't strain yourself! rest when your body tells you its getting tired. i was vomiting a lot a few days after i began eating..it more was to do with the crampy/ collicy pain in my case though.
im sure others can help you on your complications question, i only had complications with pain relief.
good luck! all the best! hannah.x
 
vonfunk

vonfunk

Bourbon Bandito
Location
Toronto,
I had multiple complications. They had major issues getting me out of sedation and then a blockage which lasted several days before they cleared it manually by a doctor jamming his fingers in my stoma.
 
Nyx

Nyx

Moderator
I had complications as well. I was in hospital for 24 days. It started out with 2 pulmonary embolisms (clots in my lungs), then I got a blood infection through my picc line. Good times!! I had the vomiting too, but that was from the TPN, not from a blockage (my doctor was kind and was jamming his fingers into my stoma every other day....that hurt like a bugger gotta say). Just take it easy. And take the Ativan if they give it to you....lol God I miss Ativan...lmao
 
Samboi

Samboi

Location
Australia
Thanks for your invaluable advice.
Stoma was very noisy and gurgly overnight - accompanied by cramping - so hoping this means the blockage is actually moving. Still not prepared to eat though!! Nothing has passed my lips for 24 hours!!
Starting to slowly feel better though.

And dammit I am tired of sleeping in this cursed hospy bed!!
 
Terriernut

Terriernut

Moderator
I think they had you eating too soon! (I'm not one to talk I had xmas dinner after my surgery on the night of the 22nd)

I did have complications, but luckily not a blockage. This will pass my lovely. Your bowels just need to catch up to you.

:ghug:
 
Samboi

Samboi

Location
Australia
They sure did have me eating too soon!!
I had no idea until later. I hadn't eaten for so long - I jumped at the chance to eat - however I know in hindsight - it was a terrible mistake!!
Now I'm daydreaming about all kinds of mushy food!

I just have to remember to take it a bit more slowly.
 
Terriernut

Terriernut

Moderator
I was only allowed because it was xmas. And I gave them 'the look' Mind you my bowels werent working till 4am of the 27th of December. And I was DAMN lucky I didnt get a blockage. (oh yes...i remember exactly...because they EXPLODED at the time)

You shouldve been on liquids only, and very soft foods. What the hell were they THINKING!!!!!????
 
Samboi

Samboi

Location
Australia
Looks like I'm out of here tomorrow!
I'm eating very small solid meals (sandwiches & omelets). Lost my breakfast this morning - which was a little disappointing. Have managed to keep everything else down though. At the moment I can't imagine eating anything other than mush for the rest of my life! Lol.
Digestion is a little painful - but the pain is generally followed by stoma gurgling and output. Which sometimes tickles!
My output is firming up. I'm moving to a smaller bag tomorrow - the current one is very large due to the amount of liquid I have been expelling.
My muscles have completely wasted away - not sure how much weight I've dropped - but it feels like quite a bit. My abdomen is still swollen - so a little hard to tell.
I've started doing laps of the ward. Last week I was so jealous of the walking people - now I am one of them!!
I'm staying at my parents for a few days once I get out - this will help me adjust back to independence. I plan to remain on the couch next week - working through my recovery and learning to relax a little more, work less!!

And I have to say - I have no idea what I would have done without the love and support of my parents, especially my mum. Were it not for her - I'd probably be curled up in agony at home slowly withering away. She insisted I come back to hospital and she was right. She'll be caring for me when I get out, and will travel across town next week to continue looking after me. I don't know what I'd do without her.
So thanks mum.
 
Terriernut

Terriernut

Moderator
:dance: Yay, you get outta there!!!

Taking it easy for awhile is as you know a very good idea. You should see small improvements every day...look for them and stay positive!

Thanks to your mum!!!
 
Samboi

Samboi

Location
Australia
And I'm really excited about seeing my little cats.
I have missed them so much. I can't wait to be in a proper bed, surrounded by my felines!
I tried to talk my parents in to sneaking them in to visit me, but two are too big & the little one squeaks too much.
Never mind - pussycat cuddles just another day away!!
 
Samboi

Samboi

Location
Australia
Got out of the hospital this morning.
Back at my parents, finally laying in a proper bed, propped up with pillows and relaxing.
Have managed to keep all my food down. Digestion seems to be happening more easily as I am no longer experiencing the sharp painful cramping every few hours.
I'm trying to modify my food routine to incorporate the six small regular meals. I also never thought a ham and cheese sandwich would constitute an entire meal!!
I'm sipping lemon cordial regularly to try and keep up with the required 2 litres of fluid per day.
I changed the whole bag set by myself today - so feeling pretty competent with it - although still a little hesitant. The stitched area still hurts and my abdomen is still very swollen. I weighed myself - I've dropped 10 kilos.
I have a smaller bag on, however the output is still lots of fluid. It's starting to thicken up.
One thing that is concerning me is the re-appearance of CD symptoms. My cheek is starting to get an ulcer and so is my tongue. In fact - my mouth is starting to hurt and this is usually the prelude to a flare.
 
Terriernut

Terriernut

Moderator
I am so glad you are home! And well done on changing all by yourself. Its tricky at first. Will you have a stoma nurse to visit you at home for the first few weeks?

Also, if the stoma nurse is coming have her look at your stitches as well.

The mouth ulcers do concern me. Did they start to occur while you were still in hospital? Have the stoma nurse look at that as well. They know their stuff.

Now that you are home, you can go and read thru all the stoma threads on here and get some handy tips!
:hug:
 
Samboi

Samboi

Location
Australia
I have to say - the forum has been a godsend. I have learnt so much from the experiences of others, that they have so generously shared. For which I am eternally grateful. The positive spirit in which others have embraced their stomas has actively encouraged me to embrace mine.

The ulcers have appeared today. I don't see the stoma nurse for another 3-4 weeks. I saw her every day when I was in the hospital. I see my GI in just under two weeks - so may have to bring that appt forward if need be. I'm concerned that I'm going to end up with a flare in a disconnected colon, which would make it rather difficult to manage I expect. Has anybody else had this situation arise?
 
Samboi

Samboi

Location
Australia
They have me on nothing at the moment - which really freaks me out as that never ends well!! The plan was to let the stoma settle and then kick off Humira in 2-4 weeks and shift to that for maintenance. I'm a little reluctant to shift to an immune suppressor as everytime we pursue that option - I end up very sick and in hospital.
I was hoping to shift to a newer combination of anti inflammatories. I was previously on Salofalk, however a stressful year led to a major flare - that has ultimately culminated in this situation. I'd love to go back to Salofalk with the odd Pentasa enema. But maybe that option has gone forever.
I hope not.
 
Terriernut

Terriernut

Moderator
Do you have an IBD nurse? If so...please ring so you can speak to her about your possible flare. Sounds like you will need something very soon to keep you from flaring up.
 
Samboi

Samboi

Location
Australia
We don't really have IBD nurses in Australia - I generally go directly to the GI.
I'll make an appt to see her on Mon or ASAP.
Thanks for your advice - really appreciate it.
Not sure I could handle another flare right now. I kinda feel like I've been through enough for now. But I guess us Crohnies never get a choice about that huh.
 
KazT17

KazT17

Hi Samboi, I have read your thread and your experiences very similar to mine. I feel like I have never been rid of the Crohns. However, if you do feel like you are starting to flare it will be nowhere near as bad as you had when your colon was in tact. So try not to worry. You will get used to what you can and can't eat and you will also get used to how much you should drink. I thought I had to drink loads but gradually I stopped thinking about it. I am not taking any meds as I have reacted badly to everything. I am waiting for the proctectomy surgery now. It was cancelled just before Christmas so waiting for a new date.

You sound like you are doing just fine, so relax and recover. You will feel so much better as time goes on.

Love, Kaz xxx
 
Samboi

Samboi

Location
Australia
Thanks Kaz - much appreciated.
I'm fretting about flaring. I'd rather be taking something rather than nothing - but it is reassuring to know that a flare is less traumatic now my colon is disconnected.
Phew!!
 
Nyx

Nyx

Moderator
You can still take the salofalk enemas with just a stump, I was using them when I first got out of the hospital. After a while they're hard to insert though, so keep that in mind (as your stump doesn't get any 'action' it tightens up a lot). I haven't been on any meds for just over 2 years now and seem to be fine (finds some wood to knock on). Hopefully you will too! Good luck!
 
ameslouise

ameslouise

Moderator
Hi Samboi and welcome home!!!

Glad things are moving along and you are getting adjusted. Just remember to take it slow, slow, slow with food. Better safe than sorry. Keep is soft and mushy, cooked to death for a good while. And get plenty of rest!!!

- Amy
 
Samboi

Samboi

Location
Australia
Thanks for the invaluable advice.
My mouth is now completely ulcerated - to the point where I can only eat mush. Which kinda suits me fine anyway! I'm eating delicious ham and cheese sandwiches vitamised, with a little mayo mixed in. And a lot of yoghurt.
I've decided to self medicate - and have resumed taking Salofalk just in case. I'm also popping panadol to try and mitigate the pain in my mouth. And regular mouthwashes with Savacol.
Lost my breakfast again this morning - which was very disappointing. Thought I was past the vomiting stage. Fingers crossed it doesn't happen again tomorrow. Because of this - I have extended my recuperation stay at my parents until the middle of next week. I'm still pretty distant from being able to look after myself properly, and I'm very mindful of the advice from others to take it very slowly.
 
Bustersmom

Bustersmom

It's so good to hear your doing so good! You have such a good attitude and that is what gets us through anything. I'm looking at that surgery in the near future and you've made me much less afraid. Please keep us updated! Bree
 
Samboi

Samboi

Location
Australia
I did my first solo bag change today. I was so particular about having it all laid out, of course I made a booboo! My tummy is still swollen from the surgery - so I've been wearing a belt just to help me feel a bit more secure. Of course I forgot this when I popped the bag holder thingy on!! Oops!!
Was a bit wonky with my little ring thingy too. Don't know all the lingo!!
In general - pretty happy with my first solo effort.

Still getting the hang of the bag emptying. I've made a lot of splashy messes and I haven't really mastered wiping up very well. Getting there though. I think I have learnt that until I get better at it, I should whip my pants down (even though there is no need to) just to minimize splash hazards and ease clean ups. Easier to wipe mess from my skin, then clean up a mess on some pants.

Ulcerated mouth is getting better (thanks to the collective wisdom on this forum) - so I am thinking of tackling solids again tomorrow. This should also help with firming things up so I have less splash effect.
 
KazT17

KazT17

Well done Samboi. Put paper in the loo before emptying the bag, it stops the 'splashy messes' lol. ( I presume you are standing up to do this?). You will soon be doing it all without a thought, it becomes second nature.

Hope the mouth improves soon xxx
 
Samboi

Samboi

Location
Australia
Thanks for the tip.
My mum has put extra paper out for me. I feel like I'm stripping a forest with all the paper I'm using! Think I need to improve my wiping methods as well as splash minimization!

Also managed to avoid my first accident - phew. Admiring my handiwork - noticed that the bottom of the new bag wasn't done up!! Disaster averted. Just changed my bed sheets - so would have been shattered by such an obvious self inflicted wound!
 
Terriernut

Terriernut

Moderator
Samboi, I always do my bag up before changing it. I am speaking about the new bag. I forgot once. All I can say is, it only happens ONCE! It was a disaster! Its become a habit to do it up first now, while I'm getting all my stuff ready. You really do get to the point where you dont think about it!

I change my bag over the sink as well. I empty in the loo, and change over the sink. Less mess I've found, and it saves a forest possibly!
 
Samboi

Samboi

Location
Australia
GI appt this morning - start in the Humira Club in three weeks. She wants to wait until the surgery has all healed. Continue on Salofalk in the interim. I'm a bit scared of taking Humira. The side effects sound abominable and it ties me to a non portable drug that makes it hard to travel. And every immune suppressor I have tried has put me in hospital. So might be a rougher road ahead.

Finally home in my own house, with my own bed and own couch. Started work again yesterday. Doc was emphatic I need to reduce my stress levels and work less - so I have readily agreed to this - too exhausted to not comply!! Taking things at a very relaxed pace.

Two proper solid meals under my belt. Stitches hurt like crazy yesterday, marginally better today. Hope it means they're healing.
Couch lounging until the end of the week. Planning my first walk around the block for Monday. Excited about it!! First driving adventure scheduled for 2nd Feb. See how I go!!
 
Nyx

Nyx

Moderator
When the stitches start itching like crazy you know you're on your way! Don't try to do too much, you'll slow down your recovery time - I know it's hard, and boring!! It took me a good three months before I would even consider going back to work (had I had a job...lol)...I just didn't have the energy. My first venture out was about 4 weeks post-op and I was exhausted by the end of it (I just went for coffee with friends). But, everyone's different. Take care of you!
 
Terriernut

Terriernut

Moderator
Cindy is right...take it easy! She's also right about the stitches. Some of mine hurt, some of mine itched. They are probably about ready to come out, at least some of them?

So glad you are home!!!! Do you have a nurse that will visit at all?
 
Samboi

Samboi

Location
Australia
Back to work involves me sitting on the couch answering emails and chatting on the phone. I'm self employed mostly - and my business is very much set around my being relatively incapacitated. I've got the tv on the whole time - so doing plenty of relaxation too!! Right now I'm flopping in bed - deciding if I'm ready to get up for the day!

No visiting nurse - only my mum. She comes over with my dad every few days to check up on me - but that will scale back over the next two weeks. I'm feeling great and full of beans - but I am also ensuring I don't get to exuberant and over do it. I don't want any relapses or set backs if I can help it. I am very lucky to have the advice and wisdom of those who have gone before me - and I am heeding every word of it.
 
Terriernut

Terriernut

Moderator
So, who is checking your dressings? And how about stoma nurses? Who is going to take your stitches out?

Worried about you!
 
Samboi

Samboi

Location
Australia
That is so sweet - no need to worry though!
Surgery was keyhole - I have three little bits of tape covering the incredibly small incision marks. I trim the tape every few days as it unsticks.
The stoma nurse is just a phone call away. I had her for the two weeks I was in the hospy - she has me pretty well trained. I see her face to face again in about three weeks when I have my CRS follow up appt. I can go and see her anytime though if I need to.
The stitches - I kinda assumed they would dissolve slowly!! I'm not to keen on having them removed - ouch!! I guess if they are the removable type - the CRS will whip them out when I see him in about three weeks.

So I think I'm ok??
 
Nyx

Nyx

Moderator
My stitches dissolved...didn't have to have them removed. I'm assuming that since they didn't give you any instructions, yours will dissolve too.
 
Terriernut

Terriernut

Moderator
My stoma stitches were all supposed to dissolve, but they didnt. My luck. So 4 had to be cut out. :(

You are so lucky it was keyhole with the incisions!
 
Samboi

Samboi

Location
Australia
The incisions are tiny - I didn't even notice the second little incision until I was fooling around with my stoma with the stoma nurse. They haven't hurt at all.
The stitches are another story - damn they hurt like hell sometimes!! The pain has been great at keeping me horizontal and resting. I really hope they do dissolve.

And I am very thrilled to report my solid meals have resulted in a thickening of my output - which is fantastic. I feel like I'm really getting there now. And I'm not eating anything after 7pm - so no having to wake up in the middle of the night to empty the bag. I even had a little lay on my tummy last night in bed. Not for long - but gosh it was nice.
 
Terriernut

Terriernut

Moderator
Great news indeed! Is it the stoma stitches that are hurting?? Thats what got me. The stoma nurse had to remove those 4 buggers that wouldnt dissolve. Big relief after they were gone. But it hurt like hell when she did it and it hurt for a good 24 hours afterwards.
 
Samboi

Samboi

Location
Australia
Yup - it's the stoma stitches.
Or at least I hope that's what it is!!
They are usually pretty ok in the morning and early afternoon. By late afternoon, early evening - they are quite painful. It actively encourages me to remain flat on my back on my couch. Which is great for recovery.
They are my little reminder that I need to take things very slowly.
 
Samboi

Samboi

Location
Australia
I'm in to week three of recovery.
I've slowly been introducing new foods into my diet. Still not eating a lot though.
Changed my equipment over this morning and noticed what looks like a little split in where the stoma is stitched in. I think it's what has been causing the pain that I attributed to the healing of stitches. Going to call the stoma nurse to see what should be done. It's pretty painful and doesn't look like it's in the mood to heal any time soon.

Spending plenty of time relaxing on the couch and in bed. Working half days in my pajamas and slippers (my office is at the front of my house!). Have a big day on Thursday - teaching my first class of the year. It's only three hours, and I have to drive there. Glad I have the next day to recover!!
 
Samboi

Samboi

Location
Australia
Thanks Maria.
Just spoke to the stoma nurse (gosh she rocks!!). She said the split is common in Crohnies because of our run down states. She said it will just heal over time.
I think I actually split it when I was laughing at the posts on the threads about things people will not eat again + stupid things doctors have said. I was seriously laughing hard - damn that mirth and it's unforeseen consequences!!!
 
maria

maria

I love you God.
Your welcome. Haha Your def in for an adventure :) Remember hot tea helps if you start to get blockage.. haha I remember mine. I ate tons of maccaroons( it was about the time I just had surgery and was taking full advantage of eating). That night I had severe pain and it swelled up and was hot I couldnt even sit straight. I remember the nurse telling me if I ever feel that drink hot tea. So I was desperate I drank some that morning and called the dr and was on the line with the nurse explaining myself then all of a sudden I heard a loud pop then my bag went from empty to full in a matter of 1 min. I had like instant relief. So be careful of coconut :)
 
Samboi

Samboi

Location
Australia
Don't make me laugh!!
That's what got me in this latest predicament!!

Coconut is on my list of no-nos. Along with popcorn, peanuts and pineapples. And probably a whole bunch of other yummy things starting with the letter "p" that I haven't even thought about!!
 
Samboi

Samboi

Location
Australia
Today it is officially four weeks since my stoma was created.
I'm not meant to drive for another two weeks - however I have driven a couple of times - not very comfortable. Kids start school tomorrow - so have to drive them.
Turfed the cat off the bed last night as he kept attacking my feet - managed to do some damage in the course of this action (I was half asleep). So a painful day all round.
I've stopped sitting at my office desk for most of my work - I've transferred it to the couch as laying down is less painful.
I'm teaching two three hour classes next week - looking forward to it - but have rest days planned for the next day. Heeding all advice from those who gone before me - to take things very slowly.
I'm still so surprised by how weak I am. I'm not used to being frail.
 
Terriernut

Terriernut

Moderator
Yup. The fatigue is shocking. And you will begin to feel very impatient with yourself. After 6 weeks you usually begin to feel human again. At 8 weeks you feel almost completely normal. Or at least that is what the normal recovery time is.

So...dont beat yourself up! (or the cat)
 
Samboi

Samboi

Location
Australia
Thanks Terri. The advice from you and others has been invaluable and has enabled me to get through this process.
You're right - I'm getting slightly impatient about the recovery process and time - however as always - this forum reminds me that these are all necessary steps for a good recovery.
 
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