New to forums, reading them for years

Hi need some help advice please

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New to forums, reading them for years

Postby Rosher » 24 Feb 2017, 17:11

Hi,

I have been coming here as a source for help and inspiration for over 4 years.
Its by far the easiest and most comprehensive forums on these issues ive come accross.
Finally I decided to sign up and post as I feel like im running out of options and need other peoples help, experiences and opinions.

To mcut a massive story short, ive got a temp loop illieostomy, 2 vy flaps and still a chronic fissure, as you still have to pass mucus and mucus plugs from remaning colon.

The 1st vy flap faild, and i have such a deep fissure from it that i get bleeding fevers and sepsis!!
These fevers and sepsis are very bad and i require hospitalisation often.

I have started to do my own colonic irrigation in and out of a tube to remove any mucus before i hardens and forms mucus plugs.
But im suffering and struggling to pull out the larger mucus plugs as they build up everywhere in the colon before i can get them out.

I am getting LIS in a month which should help a little bit in using a tube to get mucus in and out, i may even become incontinent from it but itll make 1 aspect of my struggles easier.

How ever I really need to get this fissure cut out quaterised or something. But my CRS says he wont do any more advancement flaps. And wont do a fissureectomy or at least yet...

Does anyone know what can be done, Dilatation just splits the chronic fissure.
And i cant normally pass mucus plugs.

This issue is over 5 years old now. I was considering an end colostomy and full rectum removal but they wont do that.
: (

Geeze its a hard time having to flush this mucus almost every day now, every 4-5 days is to long and mucus hardens, till i cant pass anything out.

I also cant sit at all, or lie with my leg down on the bed as any pressure on bum rectum splits fissure more.

Any advice or help is appreciated, and i am looking at anyone who has had chronic fissure that had resolved by fissureectomy or another means.

Thank you so much
Roger
Australia
35 years old.
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Re: New to forums, reading them for years

Postby GilmoreGirl » 24 Feb 2017, 18:00

I'm so sorry to hear about your tough journey - you're stronger than I am!

Do you know if the resting pressure of your sphincter is high? If so, I really think you are doing the right thing with LIS. Have you tried any ointment like nifedipine or GTN?

-GG
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Re: New to forums, reading them for years

Postby Mypoorbutt » 25 Feb 2017, 03:01

Gosh Hun
That sounds awful....can I ask a couple of questions...
Why didn't they give you LIS straight away before the flaps or temp illeo
Hopefully LIS will help a lot with the passing of the mucus....can they do a fissurectomy at the same time...tidy the edges up to help it heal.
Are you in the U.K. as I know a few people that have had end colostomies due to fissures and fistulas from their crohns and have been able to have total rectal removal...they call it a barbie butt as it's all sewn up, if you are not getting any healing because of mucus then surely that should be an option especially if you are coping well with your bag.
I truly and from the bottom of my heart wish you all the best and hope that LIS does the trick for you. But if not maybe get in touch with some crohns help lines as lots of them have to fight to get a colostomy and APR surgery so they may be able to offer some advice
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Re: New to forums, reading them for years

Postby Rosher » 27 Feb 2017, 19:48

Thank you for your replies.

resting pressure is normal, confirmed by colorectal physeo, however the scarring stenosis makes it appear as high to all untrained CRS.
Tried the creams, the fissure is so deep that it lies nexto the skin graft of a previous adv flap, so its deep and the pressure from bm's during the flap healing left a pretty crevas.

Yes, your so right, I am going to plead with my CRS to quaterise the fissure while doing the lis and hope he cleans it up.
I know this will work, just hope he agrees to it.
If not im prepared to travel to the UK to get it done or worse, end colostomy and rectum removal as im a UK citizen, and ive been through every colorectal surgeon in the wollongong area, including most of sydney.
Some CRS'es ignored me, sent me away, or saw me for a few months and thought i was to hard of a case.
Some operated on me once and wouldnt give me another flap or stoma or offer the option for a LIS which would heve helped massively in the beginning. Probably would have avoided an illieostomy in the first place, and now my rectal skin is so fragile and damaged that after 4 years of pushing through this its almost at an end and i am close to considering the end colostomy / rectum removal.

Oh well.

Mypoorbutt, if you could please give me the contacts or some how get me in touch with the 1 or 2 people that ended up getting an end colostomy rectum removal. I may have to start getting names of CRS'es who are understanding and compassionate and are not afraid to do the job.

Thank you
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Re: New to forums, reading them for years

Postby Rosher » 06 Mar 2017, 03:50

So, things have gotten worse, mucus plug came and i couldn't pass it, split chronic fissure, fevered, went to ed got admitted, they kept me in overnight but did nothing, so no surgery.
Then went to see my CRS a few days later, he forgot he was going to give me a lis, and jsut removed the mucus plug!
omg
also no options, so im stuck again.

Could someone please tell me what cauterisation does? would it potentially stop the bleeding and fevers form a fissure.

Could someone also please tell me what a fissureectomy does? would it potentially stop the fevers form a fissure.

My last but best option is rectum removal, barbie butt.
Extreme but its an end to something.

I would have a lis but also want cautreisation, yet still need to pass mucus plugs through a stenosis asshole.

In so much pain now, bit of fever from an open wound and not much hope, options or ideas of how to save my life.
As i cant cope with this cycle for much longer, fevers sepsis, pain, bed bound, cant sit, cant pass mucus, in agony.
And the cycle just repeats its self.

LIS? Fissureectomy? Cauterisation? end colostomy and full rectum removal seems like a solution but who will give it to me...

If it was just pain and bleeding ok, no problem, but when youve gotta feel like every cell in your body is sick from sepsis, dying feels like a better option.

I need a CRS anywhere in the world that understands and will do something before I end up doing something.
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Re: New to forums, reading them for years

Postby Mypoorbutt » 06 Mar 2017, 09:30

I don't understand why they won't give you a LIS it's at least worth a try before you have an end colostomy and APR.
I can't give out details Hun but if you go on Facebook and type in colostomy association support group, then send a request to join you can ask for advice and there are over 4000 members who are happy to help.
I haven't had cauterisation but I would assume it would stop bleeding as for the fever I'm not sure. A fissurectomy is basically making the edges of the fissure clean and neat as a straight line heals quicker than a jagged one...I had that done but as I don't bleed a lot anyway I can't advise on whether it would stop bleeding.
Like I said LIS is at least worth a try but if it doesn't work then there are lots of people who have had the barbie butt surgery and are now back running and biking and generally enjoying their life. You have to do what's best for you and surgeons are there to advise but also to listen, you know how much pain your in and how it's affecting your life. No one would ask for an APR unless they had exhausted every other option and a surgeon should realise this and at least give you the option.
I really hope you can get something sorted, please try and join the Facebook group as it's really helped me to decide to wait longer for my colostomy but it gives such good advice as their are so many people with a stoma for so many different reasons. One of the reasons I decided to wait was down to the mucous plugs.
My CRS is amazing and he does see private patients he specialises in IBDs so has a lot of experience his name is MR Brown at the northern general in Sheffield or the Claremont if your going private. you have an illeo...your in agony...you can't enjoy your life...I'm sure there has to be a surgeon that would maybe give you an end colostomy and try the LIS even if they are unwilling to do an APR straight away.
I truly wish you all the best
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Re: New to forums, reading them for years

Postby Rosher » 06 Mar 2017, 19:50

I am posting this as this is what i am going to give to my CRS and other CRS'es i meet along the path, i dont think i can go much longer though in handling this...

Life impacting issues

I've already lost so much in life - 5 years to be exact from the age of 30.
I've lost a House mortgage, job, physical functioning, unable to sit for over 4 years, unable to play with my kids, unable to exercise, unable to relax, constant pain, fevers and bleeding. This is more than enough to drive you beyond insane. Just ask my psychologist.

My Wife and Children have to see me bed bound, crying almost every day and in chronic pain every day of their life.
This also impacts and affects them at how I react to them being short tempered and losing it.
My Wife, I treat her badly when im suffering to, She can not follow her career path as she has to care for me, cooking, cleaning as well as dealing with all of my emotional outbursts on a daily basis - Her life is on hold because of me and im lucky to still have her around.
EVERYONE suffers because of me - that almost makes me suicidal.
This isn't just a random spontaneous issue, this is a constant ongoing never ending cycle that I can't get out of.


Can you see how much harm is being done to an individual and an entire family by not taking any action.

Yet
All of this is due to an issue that can be resolved very quickly.

If we do not resolve this fast then it's the medical system that is causing major harm to an entire family.

Some people tried to tell me and delayed a colostomy / ileostomy by saying that it would be way to bad and cause to many issues in my situation,

But they didn't for a second even hear how my quality of life was already.
They blocked it out of their ears when i told them how it was for me, what was happening to me, THEY DID NOTHING!
THE ILEOSTOMY WAS THE BEST MOVE OF MY LIFE!

I know that with a rectum removed I will be able to sit one day, be out of pain one day, not lose it at my kids and wife, be able to work one day, be able to exercise and not be bed bound from the pain one day.

And you know something else, - everyone tells me im still so young! WELL USE THAT TO MY ADVANTAGE AND DO THE BIG OPERATING NOW - DON'T MAKE ME LOSE ANY MORE YEARS OF MY LIFE or cause long term harm to my family with insubstantial inconsequential operations or EUA’s that just repeat the same process!
This must be starting to make sense to you now.

3 operations and 7 EUA’s, the euas leave me worse off than a post op state.
Thats ALOT of suffering, just go to the end resolution.

I do not want 10 more procedures / operations if 1 or 2 can do the job.

I now have blood clots, chronic headaches, chronic damaged chest cartilage 2 years now that won't get any better, gluteal pressure pain and hip displacement & pain all as a result of not being able to sit correctly and multiple procedures, I am bed bound most of the time.
This leaves me semi disabled / incapacitated, severely restricted in my life and it isn't going to change. I can no longer sit, run, swim, surf, ride a bike, carry any heavy object, twist or rotate my entire upper body - I can walk slowly but with hip pain and lie in bed, THAT IS ABOUT IT!!!

Thats pretty serious if you ask me, or if you asked anyone whose concentration span could even contextualise this amount of suffering.

Every decision and action up until this point has been the surgeons, completely ignoring my wishes or concerns or knowingness of my own body and what it can handle.

I know i can't handle or take this for much longer, I know i need an end resolution, and skip the maybe’s.

You are not just dealing with an individual and his suffering, you have the lives of the family members and their well being in your hands as well.

Let's end this, or I will end this my self, and stop the suffering for my self and my entire family, and let them get on with life.


This is serious, don't act like it isn't a serious enough issue to warrant major surgery when i clearly will have a better quality of life than what i currently am now.
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Re: New to forums, reading them for years

Postby chachacha » 06 Mar 2017, 22:10

You should print that out and take it to your next doctor's visit, and make them read it before they speak.

Because even if you have told them all of that before, the written word can sometimes have a much bigger impact, than when you speak, especially if they are tuning you out as you speak because they think that they know better. The written word is much harder to tune out/ignore.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
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Re: New to forums, reading them for years

Postby Rosher » 07 Mar 2017, 17:40

Thank you, I have printed and am seeing one of them today! I wont let any communciationt ake place untill hes read it.
Its like going to war, to fight for your own right, to fight the system for your own health choices and decisoins.
Wish i had a CRS woul wared and could understand and draw to the same conclusions and not block or object and not give any medical facts or evidence for his choices.

Thank you
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Re: New to forums, reading them for years

Postby Mypoorbutt » 08 Mar 2017, 03:01

Good luck Rosher,
I really hope they listen to you, what you have wrote is very compelling and shows how much you and your family are suffering and how much you have thought about your decisions
I truly hope you get the outcome you need.
Fingers crossed for you
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