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

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The ointment is one of the OTC haemaroid ointments containing hydrocortisone.
I think doctors can prescribe stronger ones (more cortisone).
Its called Proctosedyl. Symbicort (sp?) may be another one.
Not managing and dealing with them for so long makes you my expert. :).
You probably have more idea than the doc about what does and doesn't work.
Though we are all different.
hmm, I'm even writing short sentences like you now. :) :) :)
 
Actually - thank you for mentioning all those potions. I'm pretty sure I already have them In my bag of tricks. I never thought to use them.
Thanks for the reminder!!

And hilarious that you're now writing short sentences.
Brevity is often my friend. Lol :)
Though not always! Lol
 
I've delved in to my little bag of tricks.
I've now got rectogesic, lignocaine, Emla and paw paw ointment to throw at the problem.
I'm starting with rectogesic and I'll see what happens from there.
I did find some cortisone cream - but I think I'll skip that for now.
Thanks for your help people - much appreciated!
I am determined to win this battle!!!
 
Since yesterday I have been using the Rectogesic ointment and it seems to be making a difference!
It gives me a shocking headache.
It is a bit like giving myself a dose of really bad hangover.
So thank you Anna & NGNG for the discussion yesterday - you just might have saved my butt. Literally.
 
Oh yes rectogesic causes shocking headaches. Make sure you apply as little as possible and apply with a bit of glad wrap (sarin wrap in US I think?) over your finger so you don't absorb any more of the stuff through your fingers.
(yes I know you wash your hands after :) but you still absorb it :) )
 
I usually take one square of toilet paper and fold it in to a quarter.
I then dispense my butt potion on to the little square and apply.
Then flush away the square.

The headaches are just awful.
But the rectogesic really works.
I'm using smaller and smaller amounts.
Ouch!!
 
Ouch indeed, but I'm glad its doing the trick. Whilst you are always a member of the stoma club it would have been truly awful if you had to get another so soon.
 
Yes. I'm trying to be realistic about my reversal.
I'm hoping to have ten years until my next stoma.
Then the one after that - I reckon that one might be a permanent fixture.
I guess I know realistically that I will inevitably be back in the club. At some point.
 
I'm making a note about the rectogesic headaches if I need it in the future. Good to know....unfortunate that you both have experienced it.
 
OMG.
I'm so excited - I just did my first semi formed poop in about two years!!
It looks almost normal!
And it hardly hurt at all.
You cannot wipe the smile off my face.
 
Took the dressing off today. It looks pretty good! Very well healed at either end - scabby and still healing in the middle as one might expect. Pretty happy with it though. It feels very exposed and weird without the dressing, or the bag for that matter.

The butt is getting heaps better. The fissure is almost healed.
I've got one more week off work - just so my intestines can settle, and my wound can heal a little more. I have started walking again and I'm feeling pretty good.
My journey is almost at an end.
 
So happy for you Samboi it genuinely brings a smile to my face. I hope you will be able to live life to your fullest and hope to join you in a few months. I now take my first steps on the ostomy journey but good to have veterans here to guide me.
 
It's been almost three months since my reversal.
Things have gone well - up until this week.
I'm slipping into a full blown flare.
Aching joints, fever, severe abdo pain.
I'm a bit disappointed - but hopeful that a quick burst of steroids or a quick hospital visit might fix things up.
Rather than letting things go like I usually do - I'm right onto this.
Calling the GI first thing in the morning.
I've learnt my lesson!!
 
Reversal or not this is a lifelong battle. The only thing you can do is stay on top of it before it gets out of control. Sorry it's flaring, hopefully you can nip it in the bud.
 
Had a quick visit to the GI Weds.
Had a hasty flex sig this morning and have the very clear pics of my deeply ulcerated colon.
GI is keen to adopt aggressive treatment.
Started steroids today.
Other options are being considered.
The threat of a permanent stoma hangs heavily in the air.
But I am determined to win this round!

Earlier this week I organised to go back to full time work.
Today I have sheepishly withdrawn from this.
I am going to increase to 4 days per week though.
I am very blessed to have such a wonderful and supportive employer.
 
PS.
Pardon my language BUT
I fucking hate this stupid erratic disease!!
NGNG was right - it's like living with a sociopathic terrorist!
 
Hang in there! Those steriods will have you feeling a million dollars in no time.
On another note, today was my last day at work. TAFESA collapsing in a heap! I have got 6 hours per week of HPI work for the rest of the semester. Health wise I'm doing ok. When it comes to all things work or health I adopt the what will be, will be policy. So hoping for your sake that the mess can get you gut better!
Cheers
Janette
 
Oh no!
That's not good news.
Our funding has been drastically cut. I'm lucky to work for possibly the only TAFE that's expanding though.
And luckily my field is growing.
My boss has already got back to me with an ok to do 4 days per week and kind wishes hoping I feel better.
I'm very lucky.
 
Saw the GI tonight.
Starting 6MP on Friday.
I would start tomorrow - but I'm hanging out with a lady I like - if the new treatment goes badly - I don't want to vomit on her!
GI gave me hope though.
If 6MP works - I might be able to ditch Humira.
Which means I can travel for periods longer than two weeks.
I'm already mapping a trip to The Amazon based on this glimmer of hope.
That being said - last time I gave 6MP a whirl I ended up in hospital half dead.
So should be an interesting month!
 
Sorry to hear about your flare up Samboi. I trialled 6mp recently but with no luck - made me too sick and was terrified it would trigger pancreatitis like Imuran did. Apparently 6mp metabolises into the same thing that Imuran does. Depending on whether the Imuran or its metabolite caused the original pancreatitis you may be at risk of getting it from 6mp. Anyway there was no way I was going to risk it when i started feeling ill. I hope it does the trick for you though Samboi.

Jano, sorry to hear your work has tailed off. You seem to have a good attitude to it though. Que sera sera. Its pretty well my motto too.

:heart: anna
 
I think I'm having a disaster.
The Pred has given me terrible constipation for days.
I finally relented and gave myself a fleet enema this evening.
It's cleared the way, but I think it's also given me a huge fissure.
There was lots of blood and burning sensation.
It's how my whole bad odyssey started.
I'm sitting in my sitz bath feeling very sad and sorry for myself.
I hope I haven't gone full circle.
 
Oh Samboi I am so sorry this is happening to you. Hang in there, hopefully its just a temporary blimp. Have you had any luck with the 6mp? Are you able to reduce the pred? I don't find it gives me constipation but we are all different. What about adding metamucil to your diet to help things soften up and hopefully allow the fissure to heal. And don't forget about the awful headache making ointment - supposedly good for fissures if not for heads. Throw everything on there you can think of.
Kiss hug :heart: anna
 
What a difference a day makes.
I slathered on Rectigesic overnight and it has knocked the fissure over.
I'm guessing that the disease is not active as the inflammation dissipated very quickly.
6MP is actually going ok. First blood test this Fri. I've been put on weekly blood tests.
My intestines are still grumbly and strange - but I think the constipation has cleared.
My bum is still very tender though.
Taking Lacdol as a precaution.
I've taken your advice Anna - and thrown everything at it and it seems to be working.
Every time something goes wrong - I panic about the bag making a return.
 
The 6MP seems to have started working.
I feel like I've been hit by a truck.
I am extremely fatigued and I'm dragging myself through the days. I'm hoping my body will adjust soon and this will pass. I have managed to nap for over an hour each day from the sheer exhaustion. I've been going to bed at around 8pm too!
I've also had lots of joint pain and fever.
Had my first monitoring blood test on Friday with my usual nurse - she mentioned I did not seem my chipper and energetic self. I was having a nap in the waiting room!!

I'm hoping it will get better soon though.
I'm still quietly confident.
And I'm resting and watching lotsa tv which is always fun!!
 
Looks like 6MP is not going to work out for me.
I have significant pain in my upper left side which I assume is my pancreas staging a rejection party.
I've left a message with the GI to confirm I should cease taking the medicine.
Back to the drawing board.
What's next people?
Imuran and 6MP are out.
Humira is not holding it.
I'm allergic to Infliximab.

At least the Pred is working!
 
Same boat same story. Thank God for Pred. My GI is starting me on a new (?) drug called tacrolimus. Apparently its horrendously expensive (but aren't they all?) but he thinks the hospital will fund it cos its cheaper than having me in there. Maybe ask your GI about it Samboi? Other than that. Thank God for Pred.
 
Thanks Anna.
That's a great suggestion.
I have an appointment to see her on 9th Dec and I want to turn up with a list - I will add this to that list.
I'm going to also suggest methotrexate, cimzia and low dose naltrexone.
I don't even know if some of them are available here!
I'm also considering fecal transplant suggestion.
Anything else to add?
 
Hmmm. Not that I can think of at the moment but I'll let you know if I think of anything. I do know there is a company that does fecal transplant in Sydney. If you need more info at a later date I'll look it up for you. Just let me know.
Methotrexate may work. It gave me liver problems and is a real hassle cos its an anti cancer drug but if it works it will be worth it.
Don't delay if you think the 6mp is givnig you pancreatitis. It may be better to stop sooner rather than later. Pancreatitis is a real B.
 
Maybe Methotrexate will give me the same problem Imuran and 6MP did if it makes liver problems.
What a pest :(

I spoke to the GI late tonight (that poor woman) and she confirmed stopping the 6MP immediately.
I took Kevs advice from another thread and have consumed lotsa fluids and no food so it can get flushed out and enzymes can break down. It seems to have worked and the pain has really dissipated.
Now I have to wait for the flu like symptoms to pass.
At least I have a day off tomorrow!
Thanks for your advice and support Anna - much appreciated.
 
You're always welcome Samboi. Good luck with the methorexate - who knows, you may not have any problems at all.
:heart: anna
 
Caught up with the GI yesterday.
Tapering off Pred.
Trying mesesal again as it has worked very well in the past.
Staying on Humira in the interim.
Best news though - in the new year - drug trial!!
I am very excited about this. It offers some real promise.
Until then - I have Pred acne, chubby cheeks and have stacked on the kilos.
But yippee!!
 
Nope. No word on which drug.
There are about 3 for UC and a few for CD.
I'm over the moon. Can't wait.
I'll keep you updated though Anna as I know you're also waiting for a break through drug too.
Hope I don't get the placebo!!! :)
 
Alas I have been booted off the drug trial - before anything even happened. Lol
The neutropenia rules me out :(
So back to the drawing board.
Tapering off the Pred very well though.
 
Sorry to hear that Samboi. What a nuisance, to put it mildy.
How are things going for you now?
:heart; anna
 
See the GI on Mon to plot the next course of action.
Had a blood test yesterday to check for Humira antibodies.
I think the Humira is actually making me sick.
I fluctuate between 5-10mg of Pred which is just holding it.
I have stacked on weight - I'm huge!!
But it's a small price to pay.
I've also picked up a stack on contract work - earning $$ whilst I am physically capable of doing so!

How are things with you?
 
Pretty much the same as you. Stuck on 10mg of pred, FAT, and still have bottom problems but they seem to be resolving with tacrolimus ointment. fingers crossed.
Do you think you developed antibodies to humira by starting and stopping it?
Also I discovered the antidepressant I was on, mirtazapine (avanza or remeron) actually increases tnf alpha whereas all the biologicals work at decreasing it so now wonder I had no improvemtn with humira or remicade!
How did you go with the GI on Monday?
 
Started flaring - so jumped back up to 35mg of 'Pred. Tapering down more slowly this time. But at this juncture - word is I will be on long term Pred until another drug is discovered.

I think the Humira just doesn't work. I have used it continually with no stops. It just does nothing.

I'm having a colonoscopy and gastroscope this Thu so the GI can have a look. She hasn't seen it post reversal surgery - so I think she wants to check out what state it's in.
She is also going to try again to get me on a trial as long term Pred is not a great option.
See what they say!!
I'm just hoping they don't find polyps, dysplasia or cancer.
Just for a change :)
 
The test results were great (or at least that is how I am rating them! All things considered)
I have four deep ulcerations and areas of inflammation through different sections of my intestines.
I also had gastritis from the Pred.
I don't think there would be a positive surgical outcome.
I don't want to lose anymore intestine at this juncture.
I'm hoping to get the inflammation down and taper to a lower dose of Pred.
I meet with the GI in two weeks to review all the treatment options and we will start working our way through them.
I think methotrexate is next on our list.

Best outcome of the colonoscopy - no sign of dysplasia. And for the first time in ages - not a single polyp.
I am delighted.
 
The methotrexate has worked.
So I'm now on a combination of mezavant, Humira and methotrexate.
I have weaned off the Pred - the drug withdrawal was horrible. Even my toe bones ached!
I think I am finally in remission.
Delighted.
It's been six months since the reversal - and I can still see the feint mark of where the base plate sat. The scar has settled and looks pretty good.
It's been three years since my flare started and it's finally back under control.
I'm almost ready to resume full time work.
Yee ha!

Thanks to everybody who generously gave me support and kept me going.
It's been an odyssey - but I have finally made it.
Onward and upward!
 
Wow you are so strong, i remember when i got mine when i first woke up from the op my mind was clear my usual pain which was exactly how you described, i was bleeding for two yrs every bowl movement looked like a massacre but for some crazy reason my blood levels always stayed pretty good, a few tranfusions but i mean i bled so much i scared nurses and the last time my dr wanted to see for himself si he cane to the bathroom with me he freaked, it was my normal so he was so shocked(wish he would have believed me sooner possibly could have saved my colon and rectum) well next day i was in for om ileo named lil stomy:) but after that i had so much energy never had that before, i traveled, i was a different persin i will admit i gave me life, im excited for you to see the difference, good luck and praying for a speedy recovery for you.
 

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