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

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Next GI appt is actually next week - to review progress of Humira. I'm happy with results - so I will stick with it. Not happy about some of the side effects (hair loss, thrush, fatigue) but a small price to pay for no mouth ulcers and no fissure.
I can sit and speak!
Now that I know my liquid mucus poops are par for the course - I'm rating myself as being in remission. Perhaps a little prematurely - but call me an optomist!
 
Tomorrow marks 23 weeks post op.
This weeks health battle is all about the kidney stones. All five of them!!! One seems to have passed - although the urologist is not convinced. I'm booked in to the Cabrini on the 27th June for him to have a look. If he's happy there's no inflammation - he will then schedule a blast for the others as there are two whoppers that will not fit through the exit!
The pain has been rather agonising - a lot of writhing around on my bed.
Having a bed day today. Yesterday was Humira and Nuepogen injection day - so have fatigue + bone pain today. At last I can schedule my sick days!
Slowly getting used to the general idea that my life has slowed down and will no longer progress at a hectic pace.
 
Having a comically bad week.
Couldn't get the front door key out in time on Tuesday - left a trail of mucus poop down the corridor all the way to the bathroom (thank god I have tiles!) .... soaked my jeans (where does it all come from!!) and had it all over my shoes.
What a mess!!

Today - just before a class, wasn't paying attention when I emptied my bag ... managed to empty the bag on my pants! It was a mess!! Told my students that I spilled my lunch on myself. Which was technically true!!

I'm clearly getting a little lazy with my bag. Lol
 
Well, I think we all start getting a little complacent sometimes. I certainly have lately. And Stan has put me right in my place. Blowouts, accidents, etc....

At some point, it is going to happen to all of us. All we can do is smile and carry on. And good one with the 'lunch' story! Very clever. How did you hide the smell? I may need that one!
 
It passed the sniff test!
Which makes me very lucky - as the output can be positively toxic at times!!
I have a spare outfit in my car and did consider getting changed - but decided the mess could reasonably pass for spilt pumpkin soup.
Got away with it this time - phew!!
 
Since being unwell this year - I have been very distressed by the possibility that I can no longer enjoy adventure travel. I'm now taking Humira - which effectively limits me to trips of 14 days or less. I am also extremely anxious about heading off the beaten track.

I'm really excited though - I have decided to try an organised tour that is backpacker style ... and I have found 69 possiblities that fit in to my time frame that I can be away for. I can't venture as far away as I would like - but I am thrilled that I actually have some options available to me.
Once I book in my reversal - I'm booking a holiday and taking one of these trips.
I can' wait!!
 
Last Sunday marked 24 weeks post op.
Have a fissure at the moment - which makes me slightly concerned about getting a reversal scheduled for Sept. I am determined to get it done .... but have to be realistic - I don't want it reversed reversed!!
Had a day last week where I felt awesome - was very excited by this.
Still dogged by anxiety and depression - but feeling this is relatively under control. Also consider this to be a manifestation of the surgery - so ok with managing it.

Off to the hospy tomorrow to get my kidney stones looked at. Fingers crossed it goes well!!
 
Digits crossed for the kidney stones. (owwwy!!!)

The anxiety and depression come and go for me. I'm 1 1/2 years out from my op. And looking for reversal by end of this year. Never be hard on yourself for how you feel.

I'm hoping they can do something for that fissure of yours!
 
Survived the stone check. The surgeon, theatre staff and nurses were just delightful. All fine. Have to go back in about a month to get the remaining four blasted.
Was actually pleased to stay overnight in the hospital. It's the same hospital I will get my reversal done at, and I have been feeling anxious about the reversal surgery.
It was a really positive experience, so I am feeling more confident about the reversal surgery.

The fissure has cleared up again - it's so random! I wish it would just go away!!
 
:thumright: Excellent! Glad it was positive. We need all the positives we can get dont we?

Great that the hospital was so good, and that you are feeling better about the reversal. I'm trying to get mine scheduled now.

Lets hope that fissure stays gone...digits crossed.
 
Today marks 25 weeks post op. Almost at what I assume will be the half way mark. Have got used to the idea that the reversal will happen in December. Of course I haven't discussed this with GI or CRS - I've just come up with the decision myself! lol

Humira is progressing well. Keeps the worst symptoms at bay. The fissure niggles - but it's ok as I only do mucus poops - so no disastrous pain and suffering.

I'm on school holidays the next two weeks - then start my new job 3 days per week in the week commencing July 16th. I feel ready to rejoin the world. I have heaps of my energy back. It's great!

I'm planning a holiday for the end of September - which feels very ambitious - but I need one!! Hoping to book it in the next week or so.

I've got very slack about my eating habits. I've been eating after 7.30pm + have been drinking carbonated beverages. This has resulted in overnight "Zeppelin" bag - that needs to be emptied or burped in the night. This has actually been quite disruptive - so resuming my very disciplined approach of no food after 7.30pm and no carbonated beverages (damn you Coke and your sweet tasty deliciousness!!)

Think my sense of humour is returning too .... uh oh ....
 
I dont think its too ambitous for a holiday in Sept. I am also very pleased your sense of humour is back! Woooo hoooo!!!!

You do sound like you back to 'normal' and that is wonderful news!!
 
Hey Shazz, so happy to hear that you finally got that GD GB out....at least it's something to knock off the list. Sorry to hear about the gas pains....they are by far the absolute most horrendous things to have...at least in my experience....I was literally shrieking and tearing at my bedsheets once while in hospital due to severe gas pains after my last c-section.... So in essence I WAS the crazy patient keeping everyone up one night....I felt kinda humiliated the next day but what can you do?? Anyways I hope they start to clear up quickly from here on out...so that you could finally just have a really good day and night for once......you sooooo deserve it.

Again sending you positive thoughts and a big:hug:

Kat

Apparently I posted this.In samboi sx.thread...it was supposed to go into Shazz's neverending nausea thread...I think that's the on anyways, just an FYI as this makes no sense here...sorry samboi:duh:
 
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Today marks 26 weeks post op. Six long and arduous months.
It has been a bumpy and rough path. It has been the most challenging and difficult thing in my life that I have ever had to deal with.
And it has taken the full six months to feel better and feel normal again.
I think back to the days when I couldn't even get out of bed, and things felt a little bleak. And the awful pain. I've made it. I've survived. And I'm back in remission.
I've lost about 15 kilos - but finally feel great.

I've wrapped up my business. Start my dream job (part time) in one week. I've booked my holiday to Vietnam, Cambodia and Thailand for two weeks in September and October. And I've made a long list of other adventures I can have in the 14 day window Humira allows me.

I'm most grateful for the endless support I have received from the members of this site - especially Misty. So thank you for looking after me and holding my hand through my darkest hours, from the other side of the world.
I'm also grateful for the support, love and care of my parents and family. They have looked after me so well and I am very blessed.

I'll close the book on my ileostomy when I get my reversal at the end of the year. I'm trying to get in to pretty good shape so that the recovery time is significantly reduced. I'm not sure I can endure another six month recovery.
Fingers crossed it will all be good from this point forward!

And thanks for coming on my journey with me. You have all been great and supportive companions.
 
You have made it!!! Oh I envy you your holiday!

Have the time of your life, and enjoy the freedom that having a stoma can give you for the time being.

Six months for full recovery is not unusual, and it's exactly what I had when I had my emergency op.

Please hold my hand while I undergo a reversal soon, I am dreading it!!!
 
Life is still a roller coaster.
Had my four chunky kidney stones blasted on Tuesday. Still feeling very shady today and dogged by terrible anxiety. I still feel very uneasy about resting at home in bed - despite my employers being absolutely a-ok with me having time off. And I am urinating claret! Hoping it will be all clear by Sunday.

My fissure continues to trouble me. I met with the CRS last week, to discuss my reversal. I am adamant that there will be no reversal until I have at least 3-6 months of full remission. At the moment, I am lucky to get two weeks CD free. But I am determined.
I have great weeks full of beans and get so excited. Then I find myself immobilised by fatigue. I have never experienced this before and still find it hard to handle. I literally stand in the shower and my body and bones feel dog tired. It frustrates me, and contributes to my anxiety. The depression has largely lifted though - which is fantastic. It is so interesting to experience the effects of depression, knowing that it is just another manifestation of CD and that it will eventually pass.

I have a staph infection on the back of my hand. I am hoping it will not spread. I usually get a staph infection once a year - so it is just making itself known for 2012. I'm sure it is contributing my general feeling of being unwell at the moment. The Humira and neutropenia can't help.
I'm a bit sick of having CD at the moment. It has been a real pest the last year. I am heartened by the possibility of research and new drugs. I remember when Infliximab turned up. I can't wait for the next new discovery like this. I feel like I just have to hang in there for a few more years, and relief will be at hand.

I have decided to resign from one of my many odd jobs. I have decided to live without the money, and focus on my recovery. I can pick up an extra day at one of my other jobs that I love, and just relax. I feel relieved about having made this decision.

My stoma is in great shape and continues to squeak it's way through what will be it's brief life. My skin is in good shape and I just get the odd little rash around my belly button.
He's a funny little guy - my stoma. I think I will miss him a little. I'm gad he will leave me with a scar to remember him by.
 
I am wishing your rollercoaster would stay at the top! No doubt that the staff infection is affecting your general well being. The bone numbing fatique I can relate to, but...alot of that can be medications as well. Never mind our absortion of vitamins and minerals isnt generally great with CD.

Hows your vitamin D levels? B12, Iron? Zinc? EVERYTHING? Are they checking these regularly? (I sound like David..OMG!)

I am glad you are taking stock of things. Its something alot of us need to do from time to time with the disease. Although it is difficult. You know the spoon theory? Keep your spoons well stocked. Only important things matter, and getting and staying well is the absolute number one thing!

Glad the depression has gone. Have a day a month to have a downer and then kick it to the curb. And...go have fun and pamper yourself!
Stay well!!!!!
 
Thanks Misty - you are sounding rather like David!! lol.
The fatigue really knocks me for some reason. I just cannot accept it!
I want to run and leap - but my body says crawl.
I'm feeling far better today and expect to be back and full of beans early next week.

And yes - I need to be mindful of the spoon theory. The employer has been very understanding - but I do need to focus on my recovery. I know I have made the right decision. It's just a bit disappointing. The upside is that it will give me more time to work on a long term project that I hope will enable me to work from home more.
Sigh.
 
Sounds like you're doing well and your positive attitude will help you recover all the quicker. The first time you do a solo pouch change it is a bit scary but once you get into a routine it really isn't difficult and you should be able to get pretty quick at it. The bit I was dreading the most was the stoma becoming active at the point where you're in the middle of changing pouches. It did happen a few times but as long as you are prepared with a few wipes handy it's really not that bad. You will probably find that you can work out when your stoma is likely to be inactive and time pouch changing accordingly.

I'm sure your stoma nurse will already have warned you not to lift anything heavy for quite a while as you don't want to risk causing any complications.... and when they say heavy they include things like a filled kettle....and quite a while for my nurse meant six months! I think I kept it up for about a month. She wasn't very impressed when I told her.

Take it easy, keep posting. Good luck with your recovery
 
Sigh.
Back in the hospital (I'm away for work - so I'm in a small country hospital 4 hours from my home - eek!)
Looks like I now have a gallbladder problem.
I thought it was reflux - granted - very bad reflux.
Four days of pain, nausea and vomiting finally got the better of me.
Rang my private health insurance nurse service and they made me call an ambulance as they thought I was having a heart attack.
But doc exam has identified gall bladder pain.
Oh dear.
Seems like no break for me healthwise this year.
Hoping I can go back to town if I need surgery though.
Ultrasound tomorrow.
 
Oh - and the really lovely nurse who looked after me - a fellow Crohnie!!
The other nurse - well - she butchered me with her attempts to cannulate.
There was blood squirting everywhere!!
Three failed attempts and a very swollen arm.
Ouch.
 
Oh jeez! Bad luck indeed! I hope they get your gallbladder sorted very soon indeed.

Fingers and toes crossed for you.
 
Thanks for your kind thoughts Misty.
Just got back from the ultrasound.
There is a stone blocking the exit.
It appears my gallbladder and I are soon to part company.
Hoping they can do it lapriscopically despite the ileostomy.
They were indicating it might have to be open surgery - ouch!!
 
They will surely do it lapro with an incision in only one spot. I'm sending positive lapro thoughts your way!

I bet that is one painful gallbladder you've got there! I think you should name it something evil sounding.
 
Just waiting to be admitted for the gallbladder surgery.
Surgeon reckons he can do it lapro - yay!
Had to cancel my holiday though. Bummer!!
Fingers crossed it will all go well.
 
Best of luck with the surgery. My other half had her's removed 20 years ago and never missed it. Think positive thoughts... Bob E.
 
Good luck with the surgery Samboi, should be a breeze compared to the crohns surgeries we go thru.. Sorry to hear about your holiday too, can you reschedule?
I'm back in hospital too, more abcesses etc etc so I'll be thinking of you in your little country hospital whilst I gaze over the ocean. (actually my room is on the other side but I know the oceans there). good you had a fellow crohnies nurse - no doubt far more understanding than some can be.
 
Thanks Bob. Thanks Anna.
I hope you're ok Anna. It's sounding a bit grim for you.
You poor thing.
Try and get your mittens on one of those e-readers - its like they were made for the hospital frequenters!! I just got one - how did I survive a hospital trip without one!!
And I'm back in the big smoke - so no nice country views anymore.
I really hope you're ok.
It's a bit shit when you realise this stupid disease is going to get you in the end.
Keep fighting it though!!
 
Yay...evil gallbladder gone! Keep us updated on how you are doing? Sorry about the holiday cancellation, hopefully you will be able to reschedule?
 
Yes I have an ipad so read all my books on there - used to come to hospital with about 20 books and now just the iPad - I love it. Especially being able to download a book in under a minute, I can pick up whatever I feel like at the time. i also play words with friends and other games on it so it really helps to pass the time. Glad you're back in the big smoke - closer to family and friends I guess. But what a bugger - all the crohn's problems and the gallbladder just has to put its tuppence in too. Not fair. But good its by laparascope. Keep us posted.
 
Surgery went great!!
I'm delighted. I had visions of things going slightly awry in ileostomy installation proportions - like nausea and vomiting and pain.
I woke up feeling great. Had a great night sleep (despite my neighbour snoring), have only taken two Panadol for pain relief - more as a precaution than in response to actual pain.
They did manage to do it lapro - so just have myself a new set of incision marks.
Surgeon said the gallbladder was very inflamed - so glad to have it taken care of.
Just feel a bit like I've been punched in the tummy. But if I lay still and relax - nothing!
At last I manage to catch a break!!

And yes Anna - without the unending support of Misty - I would have found this journey too tough to deal with. She always has kind words of encouragement and support and understanding. I only hope I can reciprocate when she has her reversal done.

And speaking of reversals - this surgery has made me feel infinitely more comfortable about getting my reversal surgery done. I was terrified about it. Now feeling ok about it.
Not all surgeries are disastrous!!
 
Hi Samboi

Pleased to hear your surgery went so well. Having it done lapro should see you back on your feet a lot quicker than open surgery but please don't rush things. Don't worry about the reversal - it's something to look forward to. Once my reversal was done I was able to sleep lying face down again, not something I would suggest trying with a pouch!

Good luck with your continuing recovery and wishing you a speedy reversal
 
Sage advice Highlands Rock.
When I feel well - I get very excited and organise ten million activities to do.
I then end up having to cancel half of them.
I forget that wellness is still a day by day proposition.
But I have given my kiddo a solemn promise to recover properly and not run around like a mad thing before I'm properly better.
It's hard not to feel exuberant though!!
 
I know what you mean. Your mind is ready to get back to normal much quicker than your body and you've probably ended up with a backlog of things that had to be put on hold whilst you're in hospital. I used to get into terrible trouble from the stoma nurse when I described what I'd been up to. When she came round for a home visit I offered her a cup of tea and she even objected to me lifting a half full kettle. If she had had her way it would have been six months before lifting anything.

Hope you get a good night's sleep tonight. Other patients can be a pain
 
Fabulous new Samboi, I'm glad everything went well. As for the reversal, bring it on - its only a few days of discomfort and the rewards are immense. Now time to take it easy and heal so you can hopefully get that trip away before the next surgery.
 
:dance: Yay!! So happy to hear it went well. You did deserve a break, and that is most definete! Hopefully you will be out of that hospital within the next 24 hours and back on track with life. Any word on your holiday? Anyway you can still go? You certainly deserve it.
:hug:
 
I keep equivocating about the holiday.
One day it's on, next day it's off.
I have formally cancelled it - but I can rebook.
I think realistically - I will just go away in January instead. Better to be safe than sorry.
And I'll book a second trip for July - just for good measure!!
 
Souds like a good plan. Will you have had the reversal done by then? Good to have it all over and done with if thats the case.
 
At the moment - I haven't had any real respite from the fissures. The longest is about a week or two. I won't get the reversal done until I have had 3-6 months of full remission. I'm only on Humira - which is holding everything else well - just not the fissure.
I have the Stoma because of the fissure!
So at this juncture - I'm happy to hang on to the Stoma, save getting my bum permanently ruined by the fissures, and wait and see what new drugs are on offer in the next couple of years. It's not what I envisioned when I got my temporary Stoma - but I really don't want to risk wrecking my bum permanently as there is no retreat from that.
So I'm going to continue my travels - just with a bag of Stoma gear - rather than pills, potions and enemas!
 
Good for you. I don't think I would have been brave enough to travel with my stoma but I did have a tricky one. Definitely no point in getting it reversed when you're still having butt troubles - would all be for nothing if you did that. So many people say they find living with the stoma far better than living with continual crohn's problems and I imagine if you had a well behaved stoma that could well be true. Happy travels when the time arises.
 
I'm not sure I am brave enough to travel with a Stoma - but Susan2 does - so if she can - I can too!! I'm following her lead. And she has been all over the place.
 
If you think in terms of not needing the toilet suddenly on a regular basis I would think travelling with a stoma might be easier than without a stoma.

Go on! Have fun!
 
Saw my GI today. We are both very happy with my progress with Humira. It's been almost six months - and it finaly feels like I may have hit remission. I've had some relief before - but right now - it all seems very under control. With my conservative approach to getting the reversal - it still may be back on the cards for the end of the year - which is a rather thrilling prospect!

The gallbladder surgery has gone fabulously and I feel great. Slight fatigue on my more busy days - but really feeling great across all areas. I really hope it lasts - I've had too many false dawns along the way.

Eek .... could it really be true ...

And loving my time off work - staying up late and sleeping in ... what a delicious luxury!
 
I re-booked my holiday today.
Decided I'm just going to go. Really excited.
Any tips from fellow travellers about travelling with a bag?
I know to take twice as many supplies as I think I will need.
I know to take pegs and bags for emptying in a squat toilet.
Anything else?
 
That's great news. I reckon you will be more confident travelling with a stoma than before. At least you have some warning that you need to empty the pouch, it's not a terrible, uncontrollable rush! As I think I've mentioned before, I found that wearing an elasticated support belt, about 6" wide, over the pouch/stoma gave me even more confidence as it held the pouch in touch with my skin and prevented any leaks.

Good luck with your travels
 
Fantastic news Samboi. possible remission, recovery from surgery, travel and SLEEP INS!!!!! Congrats, I'm very happy for you. xx
 
I've had no fissures for about 2-3 weeks now- I can hardly believe it. I'm thrilled.
I'm counting myself as being in remission.
Looking back - it appears the Humira has slowly been building - and is now fully working. I was just being impatient.
With the gallbladder gone - I feel fantastic - best I have felt all year. No more good one day, exhausted the next. I just feel good. And happy.
Back at work this week (only for one day - but hey - getting there!) and it was awesome to be back.

And my 85 year old auntie just got herself a stoma ... copy cat!! lol
I'm going to visit her in the next few days to talk stoma stuff, and check hers out.
I will probably collect her monthly supplies for her, or take her for the trip out to the supply shop.
 
Great to hear. I wonder how long the gallbladder had actually been making you feel "less" well. I always feel crappy but never know whether its crohn's or something else. Maybe I'm just incredibly unfit! Yes that guilt is creeping in......
 
And major excitement for me - my posho bidet toilet seat just arrived this morning.
I'm going to have a very pampered bottom!!
 
Samboi said:
I'm not sure I am brave enough to travel with a Stoma - but Susan2 does - so if she can - I can too!! I'm following her lead. And she has been all over the place.
Click to expand...
And I'm just back from Botswana via Mauritius.:tongue:

I had a great time - saw lots of elephants, hippos, giraffes, water buffalos, warthogs, some lions, one leopard and various members of the antelope family.

My gut was not bad, considering, although I did get through quite a few Imodium. I wandered away from the group a few times so that I could burp my bag, used my patent bag-emptying device behind a few trees, had one of those completely inexplicable leaks through a tiny hole at a time when I couldn't do anything except stuff tissues down my trousers. I stayed back at camp rather than go on the game drive on one afternoon when my bag was filling up at a rate that I couldn't manage - but other people also sometimes stayed back for their own reasons.

And in Mauritius I christened my new bathers, in which I felt totally secure, and spent two afternoons swimming in the Indian Ocean and lying on the beautiful sandy beach.
 
Totally inspiring story...deserves an award!

I am thinking of your story and trying to imagine what you must be experiencing right now. Your story was incredibly moving. I find it so difficult to read posts here, but yours was another case. You suffer, yet you somehow display SUCH COURAGE and GRACE. It is hard to see so many people here who suffer far worse than I do...but incredibly instructive to see how people, just like you handle the rough spots! Maybe I need to stick around here and read some more! I was especially inspired after reading your words, "excited and a little intrigued." Now that's the spirit!! Wow, friend. You needed support, and you ended up giving something rather AWESOME to me today. Thank you for sharing. Really, thank you.

Somehow, after reading your story, I have no doubt you will bounce back stronger than ever because contained within your story is a great attitude. Thanks for modeling that, too.

Here's a Texas-sized hug sent with best wishes and hopes for your speedy recovery. As my former surgeon always closed out his visit he would say "Bottoms up! " Maybe this whole experience will have you enjoying a cool beverage and toasting your own courage. Here's hoping you will be experiencing blessed relief and good cheer. You deserve that. May God bless you! :rosette2:
 
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Excellent news Samboi.
I am glAd to hear it is all coming together. You sound like the planets have finally aligned and the rest of your life has begun after a little hiatus.

So where is the big holiday? At this point I was even looking at a trip outof town to the surgeon as a holiday, but sadly no massage or pampering only prodding and packing of sore bits. Oh well I can just work at the recovery and with all this spare time have been getting family holiday quotes, but I am reluctant to book them at this stage.

Good on you for helping out auntie. Hope it all goes well for her.
Cheers janette
 
I'm off to Cambodia tomorrow morning. I'm excited but a little anxious - my first big trip away with the bag. My suitcase is two thrids medical supplies - but I can jettison these at my final destination in Thailand.
I had a base plate fail on Monday - great practice run for an emergency whilst away.
I think I have all my special supplies packed, including wipes, tissues, pegs and mini freezer bags.
I'll be having my first swim - which I am anxious and excited about.

It's been a bugger of a year healthwise - got a stoma, had kidney stones, then gallbladder removal. I need a break!
I feel fantastic though. Humira has really hit the spot for me and I hope it will continue to work for some time.

Time to have an adventure!!!
 
Have an absolutely FANTASTIC time Samboi. I must admit I'm just a tad envious :). We're on holiday at the moment, but only in our caravan on the NSW Central Coast - nothing like both yours and Susans adventures. As Susan said, I'm sure any difficulties will be overcome. You just have to face them with humour and you're half way there. How long are you away for? Take care and have fun and don't forget to tell us all about it when you get back. Happy travels,
Anna
 
Whoop!!! Have a wonderful time!!! I am sure you will overcome any issues that happen.

See....knew you could do it!!!!!!!! :ycool:
 
Thanks peeps. Looking forward to having an adventure!
And lots of shopping in Bangkok!
I'll fill you all in when I get back.
Six months ago - who would have thought I'd be able to go on a holiday!
 
Got back yesterday. The trip was brilliant.
It was a real stretch to go - and as always - my ambitions exceeded my capacity. But I made it through.
Everything went fine bag-wise. Only had one bad stick on one day - so just made it through the day and changed the next day.
Had my first swim with the bag - went great. Nobody even noticed. Which I was thrilled about.
Had a major disaster at the end. Had a dodgy mango smoothie in Siem Reap, which upset my tummy. The bag just kept filling up with fluid. With the hot and humid weather - I knew I was at extreme risk of dehydration. Which is exactly what happened. Arrived in Bangkok a mess and had to spend two days in bed recovering - so missed the whole city!! :(
I'm still recovering from this and have returned not in great shape. My mouth is all ulcerated & I woke up this morning feeling like I've been hit by a truck. A few days bed rest and I'll be as good as gold.
Upside - Cambodia is a beautiful country and I am so pleased I have now seen it. It's beauty has been so devastatingly ravaged by war, but it's people remain happy and optimistic about their futures. They are also very grateful for the international aid they have received. Angkor Wat is stunning and I am blessed that I have been able to see another of the worlds wonders.
Yet again - I have to admit to myself - sadly, adventure travel is probably a little beyond my reach at the moment and I should be circumspect about trying it again in the future.
Right now though - it's great to be back home, on my couch, with my kitties.
 
Sounds like you had a fabulous time and even with all the annoying bag problems well worth the effort. I really admire you going at all. When you see what the local populations have survived over the years it puts our own health issues well into perspective. We are so lucky in Australia not to suffer the ravages of war, seeing loved ones disappear, homes destroyed and freedom curtailed. Thank heavens they are now able to recover with optimism.
A few days bed rest sounds just the trick. Its learning when we have to just stop that is important in managing this disease. Adventure travel may be out for the short term but you've got some great memories (and stories) of this trip to carry for a while. Enjoy that couch and look after yourself,
Anna
 
I for one am thrilled for you that you went! And if I may point out, even had you been a healthy individual, the same thing would've happened with the dodgy drink. Sooooo, thank goodness you HAVE a bag in a way because otherwise it would've been worse. (see..there is a bright side)

I am glad you are home safe and sound. And I think that by next year, adventure travel will be on the cards again for you, because you will be even healthier!

Welcome home!!!
 
Lol. That's exactly what I thought Misty - it was actually convenient with the bag - otherwise there would have been quite a few stops behind the bushes!!
It was a bit like a tap though - gushing and gushing.
Even when I had to have a quick vomit after my shower and all cleaned up ready to change the bag over - it had to join and have a big squirt on the floor.
Rude bugger!!
 
ha, reminds me of my husband in Bali who went to fart and of course pooed his pants instead. Of course he told everyone exactly what happened so we all had a good laugh.
Thats also how my last stoma behaved - non stop tap, 3 litres a day so not so keen to get another. Still more convenient there than out the other end!
 
Samboi I started a new post "worst fears realised' about my visit to concord hospital today. Unfortunately I didn't learn much about new drugs but will keep researching them and let you know what I find out.
 
I finally finished the installation of my bidet today.
It has taken ages as I needed a replacement part and they kept sending the wrong part!
I've taken it for a test run - oh my - why did I not get one of these sooner!!
I am absolutely thrilled with it and I think it is going to make my reversal recovery so much easier.
I would recommend it to anybody with perianal disease.
My life has been transformed!!!
It is brilliant.

On a bummer note - I am still not able to shake the mouth ulcers.
I've had six active ulcers this week, and I am in agony.
I am going to discuss this in depth with my GI during my Dec appt. I am concerned about pain management in relation to the ulcers. The pain really grinds me down, and actually makes me really grumpy and not nice to be around. I don't like this impact that it has on my personality and want to lessen it.
Not to mention - it makes it very hard to do my job!
 
oh god mouth ulcers are the pits! so painful for such little things and take all the joy out of eating, drinking wine and just being. I presume you've tried the anaesthetic gels that are available, they help a little but not totally.Gargling with salty water is meant to speed things along, though it may sting a little.
SO pleased the bidet has turned out a success!
 
I loved when I lived in Germany and I had a bidet! In England they just aren't so brilliant with plumbing, and of course the houses are tiny so no room in the bathrooms. I'm so pleased you have one now!

I wonder why you are waiting til December to speak to your GI about your mouth ulcers??? Dont suffer that long. Also, maybe your GP can help you out as well?
 
I've been plagued by mouth ulcers for years.
I don't think they will let me increase my Humira dose to weekly to control it better - but I'm going to ask.
I have tried everything. Salty water, savacol, cepacaine, difflam, sm 33, bonjela.
Increasing Vitamin B, B12. Everything.
It's just a symptom of uncontrolled disease and at this point - I just have to put up with it.
Urgh.
 
:stinks: Not fair! I soooo wish they would come up with some more help for crohnies. Suffering through is no way to go through life.
:ghug:
 
Spoke to my surgeon's secretary this morning.
She has moved my appointment forward a week so I can try and get my reversal done before Xmas holidays and the inevitable shut down.
I am more than a little bit excited about this.
It means I might be able to get my reversal done this year, round out what has been an absolute shocker of a year - and start 2013 totally fresh.

Fingers crossed!!
 
Are you kidding!!
Without the unbelievable support of the people on this site I wouldn't even be here.
Squeak might be biting the dust - but the bloody CD isn't going anywhere until somebody finds a cure.
Until then - you guys are stuck with me!
 
I'm now fretting a bit.
I've had a throat infection and have been taking antibiotics for over two weeks.
I think this has resulted in a minor flare - but with my mucus poops.
The bag is fine. But the mucus poops are painful as if I am having a very mild flare, they drag on for about 15 minutes to complete their exit, and I have the beginnings of a fissure.
I know if the CRS find a fisure the reversal is off until next year, and I am commited to having i done this year.

Would the antibiotics be causing this flare?

I should also say - my new bidet toilet seat has been brilliant during this. Piping hot water right on my bum. Instant relief - almost as good as a sitz bath.
It is worth every single penny.
 
Antibiotics cause havoc in the gut, so yes it could be them causing the trouble. Hopefully it will right itself. Can you take some probiotics? (without milk..so no yogurt til after the antibiotics)
 
Brilliant suggestion thank you Misty.
I never even thought of that.
I will trot down to the chemist this morning.
Thank you!!
 
Dont thank me yet! Probiotics can make you have the shits! Sorry to be so crude, but you have to 'shed' the overgrowth of bad bacteria. But they should help balance the problems if the antibiotics are causing an imbalance. (thats what they do)

And, I sure hope you feel better soon!!!!
 
I didn't think of trying something to achieve a balance!
I had a shocking day yesterday. Oppressive fatigue, joint pain, the painful mucus poops.
I felt awful all day.
Feel marginally better today. Hopefully the probiotics will do the trick!
Thanks again Misty!
 
I'm off to hospital tomorrow - being admitted at 8am.
Spoke to the GI tonight - she thinks I might have C Diff.
Not happy :(
I'm being more proactive about going to hospital when I'm sick though - instead of trying to avoid it.
This is my tnth admission in 12 months.
Urgh!

I'm also really bummed as I think the reversal will now be taken off the agenda as the fissure is back with a vengeance.

I'm also really bummed as I have been on a date last week with a really awesome lady. We were going to have our second date this Saturday. Instead - I have had to go through the miserable CD story before she has really got a chance to know me. And explain the date is a raincheck as I'm off to hospital.
I'm really disappointed. I hope this doesn't change things for her.
She said she might come visit me in the hospital - which I'm not sure about agreeing to.
 
:eek: You are certainly having the year from hell!! I suppose you are getting it all out of the way for the next decade?

The CDiff explains the way you have been feeling though doesnt it? Better you get that taken care of now. Besides which, how awful would it be if you got the reversal and CDiff reared it's ugly head after surgery.

I'm hoping the lady is a nice one, and does understand. I'm hoping that this is your last hurdle this year!!
 
All the best Samboi, I got c diff in hospital in August, cleared up pretty quickly with vancomycin so hopefully the soame goes for you. Anyway will be thinking of you and hoping it doesn't delay everything else!
 
Still waiting for test results.
The consultant GI today confirmed no reversal until next year.
I'm sad about this - as I was so excited about it.
But flip side - I'm glad it happened now as I would have been in real strife without the Stoma. If this happened in three weeks - it would have been a disaster!!

I've had no improvement in my condition today.
Fever, nausea, really bad joint pain and painful fissure.
Stomach cramps and frequent mucus poops.
They have me using Pred suppositories - but with the fissure - this is just too painful.
I'm going to request a switch to oral Pred tomorrow.
 
Oh Samboi,
Sounding like you need a break. This has been a crap year for you :stinks:, hopefully they get you sorted. As you said better now than after the takedown.

Hopefully this will be the last of the crap year, and next year this will all feel like a bad dream. Hoping you are feeling a whole lot better soon.:getwell:
Janette
 
Another bad day today.
The fever has really kicked in.
They won't treat me with oral Pred as they are not certain about what is actually causing the problem. They are worried Pred will mask it.
I feel pretty shocking.
I'm hoping there will be some answers tomorrow.
 

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