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

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You need those results and a plan of action. I can understand no pred if its cdif. And reducing your immune system further would cause more issues. So what exactly are they doing for you? :ghug:
 
Hi - sorry to hear it's been another bad day :(
(I'm on Aussie time, too..)
Just a thought - criteria for a new "significant other" is that they love and respect the whole person
Hope she comes to visit.. And best wishes for cl. Difficile being out of the picture!


HD
 
Thanks Ellie.
She's actually been great.
I've banned her from visiting me in the hospital as it is too early for her to see me in a weakened state. But she has been entertaining me with photos and emails.
She's also been very understanding about rescheduling the second date until I'm better.

She's rating pretty high so far!!
 
I actually weakened - and we're having our second date at the hospital tomorrow night.
She thinks its cute we're having our second date in a hospital.
And she bringing in all this special organic anti-inflammation food she is making for me to eat.
Uh oh. I think I've lost my mind!!

I am taking her on a proper romantic second date next Sunday when I expect to be better btw. I don't think tomorrow night counts as I'll be dressed in my pyjamas.
 
Yes make sure your pjs are decent and comb your hair. Also be careful of hospital breath, don't know why but everyone seems to have bad breath in hospital. Enjoy your date. You deserve it. Ps if she sticks around after seeing you in your pjs and has made special food for you then she sounds like a keeper.:ybatty:
 
How are you feeling today? i hope better than when yo last posted. keeping fingers crossed for you anyway.
 
Vastly improved condition today.
The antibiotics are working.
No more fever, joint pain gone, fissure improving, only three dunny dashes today so far.
Less cramping, nausea almost gone.
Hoping to get out on Tues.
I'm enjoying fabulously bad TV on Fox Classics - The Towering Inferno!!

I've been to the gift shop this morning and bought my date for tonight flowers and chocolates. Hair combed, fresh pjs, clean polo shirt, aftershave, clean teeth.
Ready to go!!
 
All sounds great! And glad to hear you followed all the girls advice. haha. Pretty good to be given flowers and chocolates by the patient!
i'm with you on the tv although we don't get a movie channel, just tv1, lifestyle, fox 8 and discovery. You'd think they would supply a movie channel as well! Thank heavens for computers.
 
Your selection is heaps better!
I only get Fox Classics, Lifestyle, Discovery and three Fox Sports channels. EPL and golf - urgh - no thanks!! Lol.

And yeh - how convenient I didn't have to go far for flowers and chocs! Lol
 
Samboi said:
Vastly improved condition today.
The antibiotics are working.
No more fever, joint pain gone, fissure improving, only three dunny dashes today so far.
Less cramping, nausea almost gone.
Hoping to get out on Tues.
I'm enjoying fabulously bad TV on Fox Classics - The Towering Inferno!!

I've been to the gift shop this morning and bought my date for tonight flowers and chocolates. Hair combed, fresh pjs, clean polo shirt, aftershave, clean teeth.
Ready to go!!
Click to expand...
:rof:

Clean stoma bag??
 
Susan2 said:
:rof:

Clean stoma bag??
Click to expand...
:rof:

#Samboi, i'd be pissed off if three of the channels were sports too! Drives me crazy that lifestyle on the weekends is mostly fishing shows. The only thing more boring than fishing is watching it on tv! (Apologies to everyone who loves fishing)
 
Yes - changed my whole rig this morning Susan!! Lol

And yes - I will go and watch women's golf in person.
Watch it on TV - urgh - stab me now!! Lol
 
:cry:I tell a lie, just checked the tv at this hospital and it only has the free to air tv stations so no foxtel at all! Feeling a bit ripped off now since there is rarely anything worth watching and I just paid for another month.:cry:
 
Anna, you can ask for your money back! (or over here you can) But I found when I was so out of it..even the crap on TV was of some entertainment value if only to drown out the dementia patients. But, as you are in a private room for now..some noise of anything is mighty enjoyable.
 
Yes I guess something is better than nothing! I used to enjoy watching all the english home shows but alas no more. They were very easy to zone out to - didn't matter if you were interrupted and missed a bit. Oh well I guess there are worse things in life to complain about.
 
So? How did it go?

We're all sitting here in suspenders waiting for a report...

(I hope that you didn't tell the lady that there were all these Chronies interested in the outcome of your date. :ytongue: )
 
It went great!
She turned up 6pm and left just before midnight.
All the nurses turned a blind eye to her being here so late of course - they are so lovely. In fact - they encouraged her to stay.
She made a lovely congee for my dinner, and has made me eggs for breakfast.
We had a lovely evening - and she's popping back tomorrow afternoon.

All good!!
 
Terrific! :thumleft:

That's just great to hear. Was she amused that she, as the hospital visitor, was given flowers and chocolates by the patient whom she was visiting?
 
Yes - it was a great point of amusement.
She was actually expecting me to be in shocking shape too - so was pleased I was in fine form again.

Phew.
 
You'd better get some sleep so that you are still in fine form to receive her tomorrow afternoon. (This is your substitute mother speaking. :D )
 
But I had better go to bed - I can't nap all day, unfortunately.

Goodnight, Samboi, sweet dreams.
 
Sounds like a great date - very amusing to have all of us hanging out on the outcome. but how nice to discuss 'fun' stuff instead. brings tears (of happiness) to my eyes. haha.
Susan, I love your sense of humour, suspenders indeed. :)
 
Out of hospital. Fully recovered.
Appointment with CRS on 3rd Jan to arrange reversal.
Back to being excited about getting my reversal.

Things with the lady are going super well. Like super super well.
I think I might have struck gold.
Wow - six months ago - I would have said no way!
Now - I just can't believe how lucky I am.
So very very lucky.
 
That's two-fold wonderful! Great that you've recovered and super great that your relationship with the lady is going so well. :thumright:

From what I know of you, she probably thinks that she is lucky, too. It is so marvellous that you have found each other. :heart:
 
Excellent news. Glad to hear you are all better and back on track for reversal wow, glad it has all turned for you. Sounds like things going well with the new lady in your life, I think for the third you may need to go and buy a lottery ticket, it's all good news for you.

Rightly so.
 
Hah - things never seem to go smoothly for me!
Saw my GP today for what now seems to be my monthly infection visit.
This time - staph infection that has traveled from one hand to the other, up the forearm, and back to the original wrist - and now its huge!

I'm being adventurous and trying some new potential remedies.
I have had an allergy test - and it has established a considerable allergy to dairy products - so they are all banned now.
I am also trying manuka honey and tumeric.
No wheat and no grains.
I'm pretty hungry!!

What I've been doing in the past hasn't worked - so I am trying more natural things to see what works. Early days yet - but I am very hopeful. My new lady friend has been fantastically supportive in this endeavour. I hope it pays off.
I'm sick of being sick. Something has to work better than Humira. The Humira is just killing me slowly in a whole other way.
 
God what a bugger, I think diet restrictions are one of the hardest to deal with, particularly dairy and wheat. Still if it helps you feel better it will be worth it.
How is the humira killing you slowly? Just not working or making you sick in other ways?
Hope the staph infection improves - I assume you contracted it in hospital - anyone who spends any length of time in them seems to pick up hospital acquired infections particularly those like us who are immunosuppressed.
All the best,
Anna
 
Hi Anna.
The Humira is generally controlling the Crohns - but I catch every infection available.
The staph infection just appears every few months - has done for years though.
It's now swapped arms again and tried a leg for good measure!
I can't tell what's working & not working - but my mouth ulcers are better controlled than they have ever been. Which is a great sign!

The stump still flares - even with the Humira. It's only mild - but I still have to do the dunny dash most days. That can be quite stressful. Yesterday I was at the shops, and just had to get out and run into the bathrooms. Didn't even park. Just left the car there and ran off. I'm hoping it will pass soon.
Silly bum!!
 
I'm thinking a little more excercise wasnt what you planned Samboi. These arseholes need a kicking sometimes!
 
I have to say I don't miss my bowels controlling my life. Although miss piggy does get me up at night at times. Now I only have my bum wound to worry about
 
Ok, I'm either confused or ignorant. Probably both haha, but why the need for a dunny dash when you have an stoma, unless its a bag failure? Or mucus? Either way its annoying. Amazing how with crohn's you get to know where every loo is. Haven't yet had to leave the car unparked but had my first bag failure in bed last night. fortunately woke before the bed got wet and also had a bag pre cut so only had to deal with a very active stoma whilst trying to put a bag on and clean up while half asleep. Fun fun fun.
Sounds like the Humira is only partially working which is a nuisance, have you been on infliximab yet? Its a nuisance having to go to hospital for infusions but maybe it would control the disease more? Are you still on track for reversal in January?
 
Jaano, I think having to get up at night is one of the worst things. I've been staying up til midnight and having a last empty in the hope I can get some uninterrupted sleep but as you can see from the above post it doesn't necessarily work. I hope your bum wound clears up soon. Its something I'm thankful for that my bottom is not affected by crohn's other than the the very occasional abscess which clear up once drained. It intrigues me how crohn's affects different people differently depending on the area it attacks. But I think bottoms would be the worst cos it must e so painful just sitting.
 
My mucus poops are as frequent as regular poops.
My stump is very active!
It flares just the same. When the CD is controlled - it just works like normal - only with mucus poops.
When it flares - the discharge is bloody and more liquid.
And the urgency is the same.
I literally get a warning cramp and start running.
It's a bit crap actually.
 
Sorry - forgot the Infliximab question.
Used it about ten+ years ago - then again last year.
Because of the decade long gap - I had antibodies.
The second infusion had to be stopped as I had convulsions.
It was awful.
So Humira is my way forward.

I take neupogen to boost my white blood cell count - this boost to my immune system seems to give me these mild flares. I need the neupogen as I often have infections because of the Humira. And my bone barrow doesn't produce enough - so I often have no actual immune system. It's really hard getting the balance right.
No immune system and lots of infections vs elevated immune system and flare symptoms accompanied by the trusty dunny dash!
 
Samboi said:
My mucus poops are as frequent as regular poops.
My stump is very active!
It flares just the same. When the CD is controlled - it just works like normal - only with mucus poops.
When it flares - the discharge is bloody and more liquid.
And the urgency is the same.
I literally get a warning cramp and start running.
It's a bit crap actually.
Click to expand...



please excuse my ignorance here, but having a stoma, id have thought it would have been the answer to not running to the bog all the time?, this is exectly why im putting off surgery because i dont want to end up worse of than i am on steroids,, facing a anal wound that wont heal, waking up through the night and the skin area probs, mucus?? etc,
thanks, george.
 
Or you could be like me and have two bowel motions everyday with the bag needing emptied once or twice a day(never much in it mind you) so now facing more surgery if I ever get to the top of the waiting list!
 
It's good but still annoying especially when it feels like it "air locks" and doesn't know what way to go! Wish they could get me sorted !
 
If you look at it over the whole Forum, I think that the majority of people with stomas would feel that their lives have improved since they had them installed, and some feel that their lives have been totally transformed. That doesn't help those who aren't doing so well or who have had real trouble with their ileostomies, of course. And some of us have a long recovery period - but come out good in the end.
 
Very true Susan and I wish they could've been the answer to my problems but sadly not, I've had two illeostomys and now a colostomy and still face more surgery, you are so right about it taking a long time for some of us to get sorted I've been off work now for 15 months and I'm now finding that the depression and anxiety are really starting to wear me down, I've had crohns for 20 odd years but got a good run off about 12 years after my last surgery, if I can get another 12 after this episode I will be happy.
 
Samboi, I can see why you are interested in the new drug trials - hopefully there will be something developed that is better for you than humira. Like you say, it seemas to be getting the balance between depressing the immune system but not too much. Wish I had the magic answer for you.
 
gmm, I guess it depends on which part of your bowel is affected as to whether you'll still be running to the toilet after getting a stoma. I didn't find it a problem with my last stoma, just the occasional mucus poop, and so far haven't with this one. My disease is mainly in the small bowel and I wasn't affected by diahorrea before I had it. As to all the other problems like sore skin and leaks etc I'm trying to learn to deal with them again - last time I overcame all the problems to the point where I was sure if I wanted to be reversed. The way this one is behaving I want it reversed asap but I can't bear the thought of surgery again. As for pred longterm, it is so bad for you, I've been using it for so long that i've developed all the awful appearance, fat tummy, round face, fat arms and skinny legs, and so I hate to think what my insides look like from it. Horrible as it is surgery may be better longterm than prednisone but I'll let you and your surgeons fight that one out. :)
 
thanks annawato, ive been on pred for nealy over 10 years more or less with a 1 year break from it due to humira,even that couldnt control the area that has been narrowing, and causing me to throw up food,, will find out whats happening in a week or so hopefully,sounds like a tough time for you at the mo and can only say that your a tougher and stronger person than i am, keep going, all the best,
 
thanks gmm, not sure about tough, you just do what you have to. Haven't had much choice but to endure and hope for the best. Keep us updated about what you decide to do.
 
Hi George
My Stoma was to provide temporary relief from severe perianal disease.
Which it did.
I guess your decision around getting a Stoma would be based around where your disease is located and how it manifests.
My Stoma saved my anus. My rectum still flares though.
But nothing like the fissure that nearly wrecked the whole area.

My Stoma saved my bum. I'd do it all again if I had to.
As painful as its been. I want to keep my bum in working order for as long as I can.
 
My thoughts exactly samboi keep the bum working as long as possible, you never know what advancements in medicine will be made in the future.
 
Are u reversed? I'm on waiting list but my tail end has been working alongside colostomy from around April past.
 
Yes - your intestines seem to be quite unique!
I also didn't realise you were still not back at work.
I thought you'd started driving again - but looks like I was mistaken.

I see the surgeon on Jan 3rd. I'm hoping to get reversed a week or two after that appointment. I need to get it done during school holidays - otherwise it's too disruptive for work.
And I am ready to get it done. I want it over. I want to resume normal life.
And I can't wait to just fart.
 
Have been doing odd day driving but not back full time, it's a bit frustrating all the waiting about but that's the nhs for you.
 
thanks folks, my prob area is the large bowel, at either end and now two areas appearing in the middle, transverse,, this is why im in the balance to find out if there is anything "joinable" to keep me in one piece so to speak lol
 
Went and saw the CRS this morning - advising him that the time has come to reverse my little man Squeak.
CRS is a little wary given I had a flare not so long ago .... So I am booked in for a colonoscopy on 14th Jan, then have follow up with him on 22nd Jan.
Timing of school holidays means actual reversal surgery won't happen until about April - which is pretty disappointing. I've already had too much time off work to get it done outside of the holidays.
I feel disappointed and a little deflated.
But at least there is finally light at the end of the tunnel!!
 
Samboi, lovely to hear from you! Let's hope the scope shows no inflammation and you can get your reversal.

How are you feeling?
 
Hi Misty
Things are pretty good. Feeling pretty good.
Have recently started a dairy and gluten free diet - just waiting for the benefits of that to kick in. I've had heaps less mouth ulcers since I started - so hopefully it will make a difference.
Just hanging on - waiting for that reversal!
 
Must be tough to do that diet? But, if it works then Hallelujah! (sp?)

All my digits are crossed for you that you get healthy and get that reversal. Then you have to do a new thread about that...and I am so looking forward to hearing about your reversal!
 
Good luck with the scope Samboi, Hopefully the flare you had was just a little blip and everything is fine for the reversal. April will be here before you know it. i gather you are a teacher, high school or primary?
 
Anna - I'm a TAFE teacher. I don't think I could cope with kids!
We get an extra week off during holidays - so reversal is do-able in that time.
I'll have a chat with my CRS about realistic recovery times. I'm so utterly deluded when it comes to recovery times!! I'm a very impatient creature!

Misty - I went and got myself allergy tested. Nuts mild, dairy was severe.
I used to drink at least a cup of milk everyday - had no idea it was making me sick!! Idiot!!
I'm more relaxed about gluten free - but very particular about the dairy free.
I am loving flour less choc cake with soy ice cream!!! Delicious!!
I have a shocking sweet tooth.
 
I have absolute admiration for anyone who can do dairy and gluten free. Particularly since they probably make up 80 % of my diet. :) But I think its great that you are doing it. Its amazing how quickly our tastebuds change and we adapt to a new diet. Hopefully it will be very speedy for you. In the meantime enjoy that chocolate cake. YUM.
Yes I think teaching kids would be a nightmare - primary would be good because they still have respect but high school - no way; I remember how bad we were at that age.............
When I had my last stoma reversed recovery was a lot faster than for when it was put in even though I had to be opened right up down the middle for it, they normally are able to just rejoin the bowel and then sew up the stoma hole which I imagine would make recovery even faster. The only problem I had was that the wound had to be dressed by community nurses for about 8 weeks after because it wouldn't heal but thats probably because of all the pred I've been on plus I'm a lot older than you. Just make sure you have it done right at the beginning of the hols so you've got nearly 3 weeks to recover.
How exciting. I'm very envious.
:heart: Anna
 
Thanks Anna. I'm thinking three weeks will hopefully be enough recovery time.
I'll be doing a long preparation for it too - to try and speed the process up.
Thanks for the heads up about how long it might take.
I'll be booking it in for a Friday I think - to sneak a few extra days of recovery.
It's months away though - plenty of time for things to go awry!!
 
My little man Squeak celebrated his first birthday this week.
He's lucky to have survived!
I'm having my scope on Monday to determine if the CRS will go ahead with the reversal in April.
I'll be really interested to hear about what he finds.
Even though its all disconnected - I still get cramping and flare like symptoms incl. urgency and some blood. And the fissure pops up every now and then - just to keep me on my toes.
I don't have full remission like I used to.
I'm still hopeful though!!
 
:beerchug: Happy Birthday 'little man squeek'!

I'm hoping they can do something to get you to full remission. Please let us know how that appt goes!
 
:birthday2:

Its a bugger you are still getting flare ups, what meds are you on? (sorry can't remember)
 
10cj4g1.png
Happy Birthday Squeak!

(Wish my stoma looked as well-formed as this! :rolleyes: )
 
Survived the review this morning - ouch! Can hardly sit down.
CRS says no reversal at this stage.
Still needs some more healing and has already discussed more topical treatment with my GI. I know this means suppositories - which I don't think work. But I will do them for 3 months or so to try if GI insists.
I'm also going to discuss adding Imuran to the drug roster to see if it will make the Humira more effective.
On the natural therapies front - something is working! No idea what it is - but mouth ulcers have had a major improvement.
Just gotta get that pesky fissure sorted.

I thought I'd be a bit shattered about it - but I'm not at all.
I'm feeling totally ok with CRS decision.
 
Good for you. :thumright: Crohn's does teach us patience (if we don't go crazy in the process). :biggrin:
 
Glad you're ok with the decision. No point rushing into a reversal before time, it'll just create more problems.
Good news about the ulcers.
 
Saw the haemo Mon. Upping the neupogen to get rid of the mouth ulcers.
Has worked so far!

Saw CRS Tues. He has advised the bum is 70% better.
I have mild colitis in the stump which explains the urgency and output.
Although since the scope - the rectal output been black and purple!! Not sure what that is about!
CRS doesn't want to wait longer than two years for reversal.
We have agreed for review in August.
Fingers crossed!!
 
Great the neupogen is helping with the mouth ulcers, they are sooo painful, it must be a relief for you.
Not sure about the black and purple? Could it be bleeding? Although I think with an ileo it would be red cos hasn't got time to get old and black. My ouput is red or purple if I have beetroot or red drinks etc and very dark green - almost black from bile sometimes but I was told not to worry about it. If it continues for you it could be worth mentioning it to your crs or gp just in case. Odd isn't it?
Meanwhile, fingers toes arms and legs crossed for August!
 
It's from my butt!
Sometimes it's brownish too.
Thought I might have got lucky and been like Ryan - capacity to poop mysteriously restored!!
It's weird though. I'll see what the GI has to say.
 
Oh gosh! Maybe it is blood then - definitely speak to your GI. Its over a week since you had it done so you shouldn't still be having blood which is what it sounds like. Can't imagine what else it could be.
Or maybe they secretly rejoined you? lol.
 
Glad the med is helping with the mouth ulcers, awful things that they are.

Purple poo from yer bum? I'm thinking it must be a MAN thing between you and Ryan out the back end! Perhaps it's from watching too many sports or something? :shifty-t: LOL.

But seriously it sounds like they irritated the heck out of it. Definetely check with the GI.

70% better is great, you are getting there!
:thumleft:
 
Oh yes - it was very irritated.
I couldn't sit properly for the remainder of the day.
The trip home in the car was very uncomfortable!!
 
My stoma has passed 50ml in three days, it's an absolute nusciance, I'm having 2-3 bm's a day and have put on 5kg. And I'm still a grumpy old bugger.
 
Thought I'd check in and touch base.
I've had two major accidents in the past two weeks.
My lady friend (shes on the cusp of girlfriend status btw) - she innocently went to sit on my lap - Clip at the top of the bag got caught on her butt and ripped the whole bag off.
Lap full of poop later ..... It was kinda funny. Had to hose myself and my clothes off in the shower. Lucky nothing got on her.
Other time was during an intimate moment. Lucky I still had a t-shirt on - it caught the bag and the poop. I was mortified!
Now it's a big joke.
At least we can both have a laugh about it.
 
Thank heavens she can laugh with you although I can imagine how annoying they must have been for you! Shes definitely a keeper!
 
:ack: Oh dear! As Anna says....she's definetely a keeper!

Hope you are feeling well??? Are things still improving?
 
My neupogen dose has been increased - which has kept the mouth ulcers relatively under control - which is brilliant.
Downside - it makes me flare. Painful cramping and urgency - colitis in the stump.
The fissure is also persistent. It just won't go away! It's not disastrous - just pesky.
Makes me worry about the reversal and whether its feasible.

School is back though - and wow - what a difference from last year!
Life is pretty good and I feel very lucky!
Planning a mid year trip to the Cook Islands. Nice!!
 
Samboi said:
Planning a mid year trip to the Cook Islands. Nice!!
Click to expand...
Very nice!

But not so nice you are flaring - hopefully a short term effect of increasing neupogen and probably better than having no immune system. It puts you in such a quandary,. Helping the immune system encourages crohn's but you need to help it because its dangerous not to. Fingers crossed that when you get to a healthy level there may be a balance between the two. Hope that makes sense.....
:heart: Anna
 
You hit the nail on the head Anna!
It is trying to find that elusive balance.
It's a real bugger.
Either way - I feel like I'm kinda screwed!

I'm going to a new naturopath this Fri to have another look at natural remedies and options. I'm desperate!!
 
Samboi said:
...School is back though - and wow - what a difference from last year!
Life is pretty good and I feel very lucky!
Planning a mid year trip to the Cook Islands. Nice!!
Click to expand...
Great to hear you sounding so positive, Samboi. :thumright:

I've never thought about the Cook Islands for a holiday - in fact, I don't know much about them at all. What has made you decide on them for your holiday?
 
Glad you are in good spirits!!

A friend of mine goes to Cook Islands annually and loves it. Great for couples, but unfortunately for me not as kid friendly as Fiji. You should have a great time.
 
New lady friend decided we were going to the Cook Islands.
Not many places she hasn't been!
She has a toddler - so I hope it's slightly toddler friendly??
Even more exciting - we have been discussing her having baby number two - which I'm a bit thrilled about!!
 
I know you will enjoy your holiday...especially with your new GF (come on now, she IS!)

You WILL find the balance, patience. Yup easy for me to say right!? Medication tweeking is the most delicate thing. But you will get there. 6 months ago look where you were...so, keep fighting and finding the positive, which you are doing so well.
:heart:
 
janette I didn't know you had twins ! I do too though they're 21 now. But I do remember how difficult it was when they were younger.
Hmm I wonder how many crohnies do have twins? Maybe the stress of them is the causative factor!
 
It's interesting that you bring up twins...I don't have children myself, but twins do run in my family.
 
I'm sure i've heard of a few others on here who have twins. Maybe we're on to something!
 

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