No food till they give me a colostomy

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No food till they give me a colostomy

Postby Mypoorbutt » 26 Nov 2016, 07:26

Well that's it after 18 months of sometimes suicidal agony....not being able to eat anything other than bread, meat and potatoes....not being able to look after my autistic son properly.
I am going on hunger strike until the stupid doctors agree to give me a colostomy....that orifice is plainly broken beyond repair, my colon cannot be relied upon to go less than 8 times a day unless I take meds which I'm having to up and have now started to cause constipation.
So nothing is passing these lips until I have a date for an op.
I'm done I cannot cope this is unreasonable to expect people to live in this amount of pain....I cannot function, I cannot sleep and nothing I take let's me go to the toilet once a day....
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Re: No food till they give me a colostomy

Postby chachacha » 26 Nov 2016, 09:53

I'm surprised that they haven't offered you a colostomy before now, since I thought that quite a few patients with Crohn's have them. I'd always thought that that was due to damage further up the colon though, and maybe that's why they've been reluctant to offer the procedure to you? Maybe they just think that a fissure is something that can be lived with (let them try, and see how painful it can be!), so I hope that you can convince them otherwise. I've been watching you suffer so much lately, and while I'm not one to suggest something as drastic as a colostomy lightly, I've thought that if anyone needs one, it's you. They are also reversible, so who knows, a few years from now, you may be able to set your full bowel back in action again.

Very, very, very good luck to you when you speak with your surgeon next!

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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: No food till they give me a colostomy

Postby Mypoorbutt » 26 Nov 2016, 10:25

Thanx Chachacha,
Even us crohnies have to fight to get a colostomy if we are living what they class as an acceptable standard of life. I know the procedure is risky but so is living like this. It has been put out there as an option but only if my meds don't work and they sometimes work well for a few months...they happened to work well when I had my Botox....it just so happens that they aren't playing right now. My crohns is in my descending colon so would have quite a lot of bowel left. I know people with crohns who have had colostomies for fissures and fistula that were meant to be temporary for 6 months to a year and they have chosen to keep them....I would love to be able to eat Sunday lunch go out for a drink and not spend half my life on the loo....I have always held off as I am VERY scared of surgery but the pain from this fissure is the last straw so I'm hoping when I see my consultant in December he will let me have the tests coz my inflammation must be off the scale right now then I can have the op and finally be done with this agony.
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Re: No food till they give me a colostomy

Postby chachacha » 26 Nov 2016, 10:53

My mother had a colostomy at the age of 74, had it reversed a year later and then had to have it permanently restored about a year after that (she had colon cancer). She did very well through all surgeries (and 5 others in that same two year period for things like lymph node removal and other cancer-related issues), but then lived on very well with the colostomy and no further cancer until she was 85. She was stil cancer-free at 85, but unfortunately, developed dementia. It was very hard for us to find a retirement residence that would accept her at that point though, because she would sometimes forget how to change her bag (you can imagine how problematic that was!). So if a 74 year old woman can have 8 surgeries in a span of two years, I just know that you can get through this one, lol.
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: No food till they give me a colostomy

Postby Mypoorbutt » 26 Nov 2016, 11:08

I know I really should have had the colostomy when it was offered my 7 years ago but I turned it down as I was so very frightened...hindsight is such a wonderful thing.
Gosh your poor mum she sounds very brave...to have gone through so much.
I will be having serious words with the surgeon and maybe it would have always taken this level of pain to overcome my fear....I was going 40+ times a day when I was offered it but I was just so scared even that amount of pain and discomfort and inconvenience didn't make me want to risk it....give me 18 months of fissure pain and I would have it tomorrow....as a nervous wreck but I would have it lol
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Re: No food till they give me a colostomy

Postby chachacha » 26 Nov 2016, 11:22

I would have turned the surgery down too, and it took me years and years of agony with the fissure before I was brave enough to undergo a LIS. You're very right that it takes a certain level of pain, or loss of enjoyment of life, to be mentally strong enough to make such a decision, but it sounds to me like you're at that stage now.
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: No food till they give me a colostomy

Postby Mypoorbutt » 26 Nov 2016, 11:33

Yes I'm lucky if I have 2 good days out of every 10 and of those 10 days at least six I'm in serious pain that even things like Valium just don't touch. I'm sure the stress of the pain is having an impact on both the crohns and IBS. Even when my crohns was at it's worse I was still able to go to friends and family they just got used to me running to the loo, now I cannot leave the house on a bad day as it's just so bad I tried to go to work this morning but got sent home after 2 hours coz I just broke down in tears from the pain and that was 12 hours after my last BM. So yes I have mentally made the decision that I have been thinking about for the past 18 months
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